The Northern Ireland Assembly - INQUIRY INTO THE DELIVERY OF CANCER SERVICES IN NORTHERN IRELAND

INQUIRY INTO THE DELIVERY OF CANCER SERVICES IN NORTHERN IRELAND
SESSION 2001/2002 SECOND REPORT

Ordered by Committee for Health, Social Services and Public Safety to be printed 13 February 2002

The Committee for Health, Social Services and Public Safety is a Statutory Departmental Committee established in accordance with paragraphs 8 and 9 of Strand One of the Belfast Agreement and under Standing Order No. 45 of the Northern Ireland Assembly. The Committee has a scrutiny, policy development and consultation role with respect to the Department of Health, Social Services and Public Safety, and has a role in the initiation of legislation.

n consider and advise on departmental budgets and annual plans in the context of the overall budget allocation;

n approve relevant secondary legislation and take the Committee Stage of relevant primary legislation;

n consider and advise on matters brought to the Committee by the Minister of Health, Social Services and Public Safety.

The Committee was established on 29 November 1999 with eleven members, including a Chairperson and Deputy Chairperson, and a quorum of five.

n Reverend Robert Coulter (replaced Mrs Joan Carson with effect from 11 September 2000)

n Mrs Annie Courtney (replaced Ms Carmel Hanna with effect from 21 January 2002)

The Inquiry by the Health, Social Services and Public Safety Committee into cancer services in Northern Ireland focused on the increase in the occurrence of cancers; the quality of and access to services; and progress against recommendations in the Campbell Report Cancer Services: Investing for the Future. The Committee took evidence from a wide range of bodies and individuals on the current position on cancer treatment and care, and has made recommendations for improvements to services.

During the 1990s expenditure on health and social services in Northern Ireland grew by 35% in real terms. In England the growth was 57%. If we had matched the increases in England our health and social services would have gained an extra £83m in 2001/02, £138m in 2002/03 and £214m in 2003/04. The Minister in a written answer to the Assembly on 8 February 2002 stated that, while the revised budget allocation for 2002/03 represents an 8.9% increase in her Department's spending power, England's equivalent expenditure will increase by some 10.5% next year.

Cancer treatment and care is a resource- and cost-intensive service. The ambitious NHS Cancer Plan for England and Wales aims to deliver the fastest improving cancer services in Europe over the next five years. Significant additional resources of some £280m in 2001/02, £407m in 2002/03 and £570m in 2003/04 will support that plan.

One of the five key priorities set by the Northern Ireland Executive in its Programme for Government is action to improve the quality of health treatment and care, and to work for a healthier people. The Committee supports the work of the Minister of Health, Social Services and Public Safety to secure extra funds to ensure this happens. The Minister has achieved a measure of success in obtaining extra funding from increased Budget allocations and Executive Programme Funds since the establishment of devolved government.

There is still a shortfall in the funding of our health and social services. National Lottery (New Opportunities) funding and the Private Finance Initiatives may help to address the shortfall, however, they should not be regarded as a substitute for planned mainstream government funding of services here. The Committee is in agreement that a key part of the action needed to improve services is substantial investment in cancer services. This needs to be done if all patients are to receive the quality and level of care that should be expected in a modern patient-centred health service.

1. The Department should provide cancer services with a pro-rata, ring-fenced increase in funding in line with Great Britain that will support a strategic plan to improve staffing levels, facilities, equipment, drugs and information systems.

2. A rigorous, independent audit of cancer services should be conducted annually, both regionally and at the individual Cancer Units level, to ensure that outcomes and improvements are properly measured and can demonstrate value for money.

The Committee agreed that work to develop cancer services should focus on the needs of patients. Evidence has shown that greater cancer awareness and early diagnosis and screening can lead to major improvements in survival rates. After diagnosis treatment should be swiftly planned and undertaken through close collaboration between primary and secondary service providers. This means improving waiting times. The process is dependent on good communications with all concerned. This will also involve providing patients and their families and carers with accurate and sensitive information on the cancer and on hospital and community support services.

As part of the process of developing a more holistic pattern of cancer services, work needs to be done to develop the psychosocial care and support for patients, especially when increasing numbers of patients are being treated in their own homes. This involves improving palliative care services, which can play a vital role in improving patients' quality of life during care and treatment. It also means ensuring a greater degree of equity in access to services. The Department will need to address the resource implications of this work at a time of increasing need for domicillary care.

3. The Department should review the remit and resourcing of the Health Promotion Agency, with particular regard to cancer prevention, to provide it with an effective lead role in health promotion, including the power to make limited grants to local community health initiatives.

4. The Health Promotion Agency should collaborate with the HSS Boards and Trusts, together with the community and voluntary sector, in developing a co-ordinated range of initiatives to improve the uptake of cancer screening. Particular emphasis should be placed on promoting greater awareness of the early symptoms of cancer in areas of social disadvantage and poorest levels of health.

5. The Department should set a target of a maximum one month wait from diagnosis to treatment of all cancers by 2005; and a maximum two month wait from urgent GP referral to treatment for all cancers by 2005.

6. A system of direct referral from primary care providers to specialist cancer clinics should be developed and complemented by an advanced directory of specialist cancer services for Northern Ireland.

7. Relevant and up-to-date information on waiting times for diagnosis and treatment for the different cancers should be provided in an easily understood format on the Department's website and via other public information facilities. The Department should liaise with its counterparts in Great Britain and elsewhere to standardise information available to the public to allow accurate comparisons to be made.

packages, to support the increasing number of cancer patients being treated as day patients and at home.

13. The Department should oversee a strategic review of transport arrangements by the HSS Boards and Trusts to ensure that all cancer patients in Northern Ireland have equity of access to the new facilities.

14. The Department should co-ordinate a shared approach to individual HSS Trusts' good practices that cut down on travel, and oversee their implementation across the region where possible.

The increase in demand for cancer services has led to increasing pressures on staff, especially specialist doctors and nurses. Although some 200 additional cancer service staff have been appointed since 1999, there was evidence that there is still a lack of cancer specialists in key areas at consultant and nursing levels, and in support areas such as speech and language therapy. There is also a growing danger of losing key staff who are being attracted to posts in Great Britain, the Republic of Ireland and elsewhere. Associated with the pressures on hospital staff is the growth in the workload of primary care staff, especially at a time when new local health and social care groups are being established.

While the Committee welcomes the current work to recruit additional staff, it is vital that a long-term regional workforce plan be put in place to sustain the recruitment and retention of a range of specialist staff. These include surgeons, GPs, nurses, therapists, scientists, technicians and administrative support staff. The plan will need to be adequately resourced and underpinned by education and training programmes.

15. The Department should urgently complete its analysis of staffing needs and produce a detailed regional workforce plan, underpinned by education and training for cancer staff, for the recruitment and retention of the diverse range of specialist staff required.

The Committee was very concerned that action to implement the Campbell Report's recommendation for a regional centre has been slow. It is now six years since the go-ahead was given for a new Regional Cancer Centre and local Cancer Units. The Regional Cancer Centre is the key missing link to a modern, fully integrated cancer service. It was due to have been ready by the end of 2003. There is still no date for it to open.

The Regional Cancer Centre will cost nearly £60m to build, with estimated annual running costs of £10.5m. The Department has said that the centre will be built, but has not been able to confirm where the money will come from, nor when it will be built. The possibility of creating a Private Finance Initiative (PFI) project to build the centre and provide ancillary services has been suggested. The preparation and implementation of a PFI project will be complex; it will take time to agree the specification and contracts, and it will come at a cost to the public purse that has yet to be decided.

The Committee recognises the complexity of building a Regional Cancer Centre by whatever funding route is chosen. However, the Department has now had six years to prepare for the new Centre.

16. The Minister should announce immediately a firm timetable for the building of the Regional Cancer Centre that takes into account the urgent need for a fully integrated cancer service.

17. Integrated clinical pathways should be developed across the Regional Cancer Centre, Units acute hospitals and primary care sector, using agreed referral protocols, guidelines and audit mechanisms, to ensure a seamless patient-centred service. (See recommendation relating to information management under Strategic Issues.)

18. The Department should ensure that there are safe and effective cancer services at Belvoir Park Hospital pending the opening of the Regional Cancer Centre.

19. The Department should ensure that guidelines for cancer services specify best practices to be followed by HSS Trusts for outpatient facilities.

20. The Department should ensure that there are satisfactory car park arrangements for the Regional Cancer Centre that meet the need of patients, their families and carers.

General Practitioners are usually the first point of contact for a cancer patient, and they can play a pivotal role in successful early detection, referral and on-going treatment and care. Evidence has indicated that communication between the primary and secondary sectors needs to be improved. The experience of doctors, nurses and patients is that there is not a smooth and seamless transition from GP to hospital and back again.

Out-of-hours care was the single most important issue raised by GPs. The Committee was concerned that in many parts of Northern Ireland there is no cover at all after 5.00 p.m.

21. The Department should encourage cancer specialists to work collaboratively to develop effective guidelines that will help GPs and other primary care professionals to recognise the symptoms of cancer.

22. A multi-disciplinary team approach should be developed and good practices in cancer care disseminated across HSS Boards and Trusts.

23. A simple electronic referral system should be developed for GPs, complemented by a cancer registry of specialist services. There should be a robust system for monitoring the implementation of referral guidelines.

24. The Department should ensure a fully integrated, equitable out-of-hours service for cancer patients throughout Northern Ireland.

25. The Department should ensure that the cancer patient-held record initiative is rolled out across Northern Ireland as soon as possible.

26. The Department should arrange for protected time to be set aside for meetings between the primary and secondary care sectors to examine ways of integrating and co-ordinating communication between the two sectors.

27. Hospital Trusts should ensure that their surgical teams communicate decisions to the primary care team and referring cancer team in an accurate and timely manner.

28. The Department should ensure a fully integrated, equitable out-of-hours service for cancer patients throughout Northern Ireland.

One of the reasons for reorganising cancer services was the variability in the quality and speed of investigation and treatment across Northern Ireland. All patients should have equitable access to cancer treatment and care. The Committee learnt of many good examples of innovative work in palliative care, and the development of the local Cancer Units has led to welcome improvements in treatments such as chemotherapy. However, inequalities still exist. The Committee considers that variations in cancer services will remain as long as four HSS Boards and 19 Trusts administer the Health Service.

29. In advance of any future restructuring of the local Health Service administration, the Department should actively encourage the HSS Boards and Trusts to work collaboratively to ensure as equitable a service as possible for cancer patients.

30. Shortages of key specialist staff in the Cancer Units and hospitals should be addressed as a matter of urgency to ensure equitable access to cancer services across Northern Ireland.

31. The Department should establish a regional advisory body of lead cancer clinicians and senior nurses to monitor and assess minimum clinical guidelines, standards and performance for the common cancers managed in the Cancer Units and set targets for improvement.

32. The Department should develop as soon as possible a phased roll-out of cancer site specific networks.

Effective progress towards an expansion of patient-centred cancer services must be supported by a realistic regional implementation plan that provides clear leadership, milestones, targets, and effective audit mechanisms. The Committee supports calls for a comprehensive cancer plan similar to the NHS Cancer Plan for England and Wales.

33. The Department should draw up a comprehensive Regional Cancer Plan, in close consultation with HSS Boards, Trusts and the voluntary sector, and draw on the detail of the NHS Cancer Plan and any lessons learnt from the Republic of Ireland and elsewhere.

The Committee was concerned to learn that information systems are often poorly developed and co-ordinated or incompatible, which can impact adversely on the outcomes for cancer patients. There needs to be a co-ordinated information management plan and system that will link and support cancer staff at primary and secondary care levels, including the Regional Cancer Centre and local units.

34. The Department should develop as a matter of urgency a co-ordinated information management solution that addresses the needs of cancer services in Northern Ireland.

The Northern Ireland Cancer Registry has led to major advances in collection, analysis and presentation of information on cancer. If scarce resources are to be used effectively then it is important that knowledge of cancer trends is accurate and up-to-date. The Committee found that there was uncertainty about the legal status for collection and use of patients' data without their explicit consent. This has left doctors wary about transferring data to the Cancer Registry. The Committee supported the Northern Ireland Cancer Registry's call for steps to be taken to ensure comprehensive cancer notification.

35. The Department should ensure the future of cancer registration by making cancer a notifiable disease, or by introducing legislation to extend the provisions of Clause 60 of the Health and Social Care Act 2001 to Northern Ireland.

Cancer will affect one in three of our population, while one in four will develop cancer before the age of 75. The incidence of cancers is increasing, with referrals to oncologists rising from some 3,400 in 1996 to 4,100 in 2000 and is expected to rise to some 6,500. Each year some 6,300 people are diagnosed with cancer and 3,500 die from cancer here. Measures such as screening, education and awareness promotion must be increased and made more effective. For example, in a European league table of survival rates for ovarian cancer Northern Ireland sits at the bottom with Estonia and Slovakia on 27%, while Sweden has a 45% survival rate.

Smoking causes some 3,200 people to die prematurely in Northern Ireland each year while annual inpatient care costs £22m. The Committee endorses the enforcement of a ban on tobacco advertising and smoking in public places as being sensible and practical measures to help combat smoking related cancers. Poor diet also contributes to cancer deaths. The Committee strongly advocates the adoption in Northern Ireland of initiatives such as the five-a-day programme, which is designed to improve diets by increasing access to fruit and vegetables.

36. There should be a complete ban on smoking in public places in Northern Ireland.

38. The Department should oversee a co-ordinated regional strategy, involving other government departments, the Health Promotion Agency, HSS Boards and Trusts, and the voluntary and community sector, in the provision of smoking cessation services.

39. The Department should work with other government departments, health agencies and food producers to develop a programme that increases provision and access to fruit and vegetables, particularly in schools and socially disadvantaged areas.

The Committee welcomed the work of the voluntary sector in providing cancer care and support to patients, their families and carers. The Cancer Forum is a good example of how the voluntary sector is collaborating in service provision. This should be further developed to ensure that there is effective collaboration between the statutory and voluntary sectors in planning and providing services.

40. The Department should continue to encourage cancer charities to engage collaborativelty, through the Cancer Forum, in the provision of services in order to optimize resources.

The Committee was impressed by the work on cancer research that is being undertaken by research teams in Belfast City Hospital, the Royal Victoria Hospital, Queen's University Belfast and the University of Ulster. This is a vital area of work that can benefit not just patients but also education and the local economy. If Northern Ireland is to remain at the forefront of research and retain leading cancer experts then further action is needed to support their work.

41. The Department should consider how cancer research can be strengthened as part of the development of a Regional Cancer Plan and Regional Workforce Plan.

The Committee, in making its recommendations, acknowledges the work already done by the Department, HSS Boards and Trusts, and by the voluntary and community sectors, to improve our cancer services. It has found, though, that significant work is still needed if primary and secondary care services here are to be the match of services elsewhere.

It is vital that the Department sets in place and manages strategic plans for cancer services, staffing and communications. And that action is taken now to make the Regional Cancer Centre a reality so that it can act as the cornerstone of acute cancer services.

The Committee recognises that a number of the improvements to cancer services arising from its recommendations will need extra resources if they are to be successful. However, many of the Committee's recommendations reflect what is good practice and which the Department should already be addressing and funding.

Cancer services is one of the key areas where improvements to the health and care of the people need to be improved if the Executive's Programme for Government targets are to be met. The Executive has agreed that extra resources are needed. The Minister and the Executive must now intensify their fight for those resources.

1. The Department should provide cancer services in Northern Ireland with a pro rata, ring-fenced increase in funding in line with Great Britain to support a strategic plan to improve staffing levels, facilities, equipment, drugs and information systems.

2. A rigorous independent audit of cancer services should be conducted annually, both regionally and at the individual Cancer Units level, to ensure that outcomes and improvements are properly measured and can demonstrate value for money.

4. The Health Promotion Agency should collaborate with the HSS Boards and Trusts, together with the community and voluntary sector, in developing a co-ordinated range of initiatives to improve the uptake of cancer screening. Particular emphasis should be placed on promoting greater public awareness of the early symptoms of cancer in areas of social disadvantage and poorest levels of health.

7. Relevant and up-to-date information on waiting times for diagnosis and treatment for the different cancers should be presented in an easily understood format on the Department's website and via other public information facilities. The Department should liaise with its counterparts in Great Britain and elsewhere to standardise information available to the public to allow accurate comparisons to be made.

8. The statutory and voluntary sectors should work collaboratively to develop a joint training package in communication skills, including a policy on breaking bad news. The training should be mandatory for all cancer care professionals

9. The Department should ensure that the HSS Trusts, Regional Cancer Centre and Units provide all cancer patients with high quality, sensitive information on local services, their specific cancer and treatment options.

10. The Department, HSS Boards and Trusts, together with the community and voluntary sector, should jointly collaborate in the development of a comprehensive information pack for all patients, their families and carers that addresses their emotional needs. Patients should be advised at the start of their cancer journey of the full range of psychosocial support services available.

11. The Department, HSS Boards and Trusts should work in strategic partnership with the voluntary sector to achieve prompt patient access to a fully integrated palliative care service across Northern Ireland. The administrative boundaries of HSS Boards and Trusts should not prevent equitable access to such a service. Palliative care should be represented on all future cancer planning forums.

12. The Department should ensure adequate funding for community care, particularly domicillary care packages, to support the increasing number of cancer patients being treated as day patients and at home.

14. The Department should co-ordinate a shared approach to individual HSS Trusts' good practices that cut down on travel and oversee their implementation across the region where possible.

15. The Department should urgently complete its outline work on staffing needs and produce a detailed regional workforce plan, underpinned by education and training for cancer staff, for the recruitment and retention of the diverse range of specialist staff required for an expanded cancer service for Northern Ireland.

16. The Minister should announce immediately a firm timetable for the completion of the Regional Cancer Centre that reflects the urgent need for a fully integrated cancer service.

17. Integrated clinical pathways should be developed across the Regional Cancer Centre, Units, acute hospitals and primary care sector, using agreed referral protocols, guidelines and audit mechanisms, to ensure a seamless patient-centred service.

18. The Department should ensure that there are safe and effective cancer services at Belvoir Park Hospital pending the opening of the Regional Cancer Centre.

19. The Department should ensure that guidelines for cancer services specify best practices to be followed by HSS Trusts for outpatient facilities.

20. The Department should ensure that there are satisfactory car park arrangements for the Regional Cancer Centre that meet the needs of patients, their families and carers.

22. The multi-disciplinary team approach in primary care should be developed and good practices in cancer care disseminated across HSS Boards and Trusts.

24. The Department should ensure that the cancer patient-held record initiative is rolled out across Northern Ireland as soon as possible.

25. The Department should arrange for protected time to be set aside for meetings between the primary and secondary care sectors to examine ways of integrating and co-ordinating communication between the two.

26. Hospital Trusts should ensure that their surgical teams communicate decisions to the primary care team and referring cancer team in an accurate and timely manner.

27. The Department should ensure a fully integrated, equitable out-of-hours service for cancer patients throughout Northern Ireland.

28. In advance of any future restructuring of the local Health Service administration, the Department should actively encourage the HSS Boards and Trusts to work collaboratively to ensure as equitable a service as possible for cancer patients.

29. Shortages of key specialist staff in the Cancer Units and hospitals should be addressed as a matter of urgency to ensure equitable access to cancer care across Northern Ireland.

30. The Department should establish a regional advisory body of lead cancer clinicians and senior nurses to monitor and assess minimum clinical guidelines, standards and performance for the common cancers managed in the Cancer Units, and set targets for improvement.

31. The Department should develop a phased roll-out of cancer site-specific networks as soon as possible.

32. The Department should draw up a comprehensive Regional Cancer Plan, in close consultation with the HSS Boards, Trusts and voluntary sector, and draw on the detail of the NHS Cancer Plan and any lessons learnt from the Republic of Ireland and elsewhere.

33. The Department should develop as a matter of urgency a co-ordinated information management solution for health services that addresses the needs of cancer services in Northern Ireland.

34. The Department should ensure the future of cancer registration by making cancer a notifiable disease, or by introducing legislation to extend the provisions of Clause 60 of the Health and Social Care Act 2001 to Northern Ireland.

35. The Department should continue to encourage cancer charities to engage collaboratively, through the Cancer Forum, in the provision of services in order to optimize resources.

36. There should be a complete ban on smoking in public places in Northern Ireland.

38. The Health Promotion Agency should continue to roll out hard-hitting campaigns on the risks associated with smoking to all schools in Northern Ireland, with a particular focus on socially deprived areas.

39. The Department should oversee a co-ordinated regional strategy, involving other government departments, the Health Promotion Agency, HSS Boards and Trusts, and the voluntary and community sector, in the provision of smoking cessation services.

40. The Department should work with other government departments, health agencies and food producers to develop a programme that increases provision and access to fruit and vegetables, particularly in schools and socially disadvantaged areas.

41. The Department should consider how cancer research can be strengthened as part of the development of a Regional Cancer Plan and Regional Workforce Plan.

1. The Health, Social Services and Public Safety Committee (hereafter referred to as the Committee) undertook an inquiry into the delivery of cancer services in Northern Ireland primarily for three reasons.

2. First, there was consensus on the need for a strong focus on a disease that is expected to become the number one killer here within the next five years. The increase in the number of deaths from cancer can be attributed in part to demographic trends and increases in the incidence of cancer.

3. Second, the Committee was aware of considerable public concern regarding the quality of, and access to, cancer treatments, with widespread reports of the most intense pressures on both staff and equipment at Belvoir Park Hospital, which is struggling to cope until the new Regional Cancer Centre is built. Indeed, the already considerable delay in commencing the new Centre - and its escalating budget costs - has led to much frustration and disquiet.

4. Third, it was felt that such an inquiry would be a timely opportunity to review progress against the recommendations for cancer services in Northern Ireland arising from the 'Campbell Report, Cancer Services: Investing for the Future', published in 1996. While there are clearly welcome advances in cancer treatment from that time, evidence nonetheless points to continuing variations in quality and provision of services for different cancers across Northern Ireland.

5. The terms of reference agreed by the Committee on 09 May 2001 were as follows:

"To investigate the current position with regard to the delivery of cancer services in Northern Ireland, and to make recommendations for improvement."

7. The Committee held eight oral evidence sessions from September to December 2001, taking evidence from the following witnesses: the Campbell Commissioning Project; Macmillan Cancer Relief; Action Cancer; Ulster Cancer Foundation; the General Practitioners' Committee of the BMA (NI); Belfast City Hospital; the Royal Victoria Hospital; and the Minister for Health, Social Services and Public Safety, Ms Bairbre de Brún.

8. Recognising the importance of drawing on the expertise of others, the Committee also wrote to 46 organisations, including the Health and Social Services (HSS) Boards and Trusts, and voluntary organisations specialising in cancer services, to request written submissions. An advertisement was placed in the three main local newspapers.

9. The Committee was pleased to receive a considerable volume of written evidence from 31 organisations and individuals. While the written submissions from those witnesses who gave oral evidence are published in this report, because of the volume, the remainder of the submissions have not been printed. Copies of all the written evidence are available to the public for inspection through the Committee Clerk and may be perused by Assembly Members in the Library, Parliament Buildings. The Committee wishes to place on record its gratitude to all of the witnesses for the excellent submissions received.

"Cancer is a major public health problem. At current rates of incidence in the UK it will afflict one person in three before their seventy-fifth birthday. Almost a quarter of a million new cancers are diagnosed every year, and there are 140,000 cancer deaths in the UK each year. The financial cost of diagnosis, treatment and long-term care and support for cancer patients is immense. The emotional cost is incalculable." [i]

10. The importance of the effective delivery of cancer services is clearly highlighted when the following statistics for cancer in Northern Ireland, and Ireland as a whole, are considered:

Cancer Statistics for Northern Ireland and for Northern Ireland and the Republic of Ireland combined.

International Comparison of Reported Incidence Rates for all Malignant Cancer (Excluding Non-Melanoma Skin Cancer) (European Age-Standardised Rates Per 100,000 Per Year)

Year/source: 1. 1994-96 (Walsh et al); 2. 1994-96 (ENCR 2000); 3. 1994-96 (Quinn et al 2000)

11. Generally males suffer from a higher mortality rate than women, with a one in six chance of dying from cancer before the age of 75, compared to a one in eight chance for women.

12. In Northern Ireland, irrespective of gender, there is about a one in four chance of developing some form of cancer before the age of 75. After non-melanoma skin cancers, lung, prostate and colorectal cancers are the most common cancers for males, while for females, breast, colon and lung cancers are the most common.

Cases, Deaths and Survival for Northern Ireland patients (aged 15-99) from 1993 to 1996 and
followed up until 31 December 1999 [iv]

13. Many cancers are preventable. For example, smoking causes 90% of lung cancers. Given current smoking rates it is estimated that as many as 25,000 teenagers in Northern Ireland today will die from smoking related diseases in middle age. A further 25,000 will die from such diseases in later life. [v]

14. Throughout the 20th Century, the number of deaths from cancer rose steadily due partly to factors such as the rising elderly population, better diagnosis, more accurate recording of cause of death and changes in exposure to risk factors such as smoking and diet. However, there are some cancer sites, notably breast, skin and prostate, where the recorded incidence is rising faster than can be accounted for by these factors alone.

15. While considerable progress has been made over the last few decades in the treatment of many cancers, there has been professional concern, for at least the last decade, over evidence that variations in the outcome of treatment may result purely from the poor organisation of local cancer services.

16. It was against this background that the debate on cancer services at a national level started. The Chief Medical Officers for England and Wales established the first UK Expert Advisory Group on cancer. Their report, 'A Policy Framework for Commissioning Cancer Services' (The Calman-Hine Report), accepted by the Secretary of State for Health and published in April 1995, outlined the direction in which cancer services in England and Wales should be developed.

17. The Chief Medical Officer recommended three levels of care for patients with cancer:

n Third, Cancer Centres, which would act as Cancer Units to their local population, in addition to providing a regional service for rarer cancers and those persons requiring more specialised treatment.

18. Although this report related only to England and Wales, there was extensive consultation within Northern Ireland and support for its recommendations.

19. The Department of Health and Social Services subsequently established a Cancer Working Group to consider how the recommendations of the Calman-Hine report might best be implemented in Northern Ireland. Sub-groups were established to investigate specifically breast, colorectal, gynaecological, lung and urological cancers, and palliative care.

20. The overall position of Cancer Services in Northern Ireland was first outlined in 'The Campbell Report, Cancer Services: Investing for the Future', published in May 1996. The report recommended that multidisciplinary, multi-professional specialist cancer teams should manage cancer patients. It was recommended that Northern Ireland should have one Regional Cancer Centre, with the Belfast City Hospital and Royal Victoria Hospitals being developed as the Centre. This Centre would also provide Cancer Unit care to its local catchment population. The report endorsed four other Cancer Units, one in each HSS Board area, and also recommended that radiotherapy and chemotherapy at Belvoir Park Hospital be relocated to the Belfast City Hospital site and become an integral part of the Regional Cancer Centre.

21. Following the publication of the Campbell Report in May 1996, each of the four HSS Boards developed a "cancer commissioning strategy" for their Board area. These strategies were published in 1998 and were submitted to the Regional Advisory Committee on Cancer Services (RACC). The RACC was established in 1997 to advise the Department of Health and Social Services on the implementation of the Campbell Report 1996. It published its first Report in 1999 on the progress of the implementation of the Boards' strategies.

22. The second Report of the RACC, which was published on 23 January 2002, reflects the latest developments in the process of cancer care provision. It refers to the substantial progress made over the last three years towards developing an integrated cancer network. The Report acknowledges the generous support given by the New Opportunities Fund and cancer charities to cancer care, including the purchase of diagnostic equipment, and points to advances in treatments regimes, referral pathways, health promotion and cancer research, and the establishment of the Macmillan Lead GP network. It also accepts that the significant improvements promised by new radiotherapy treatment regimens will only be realised when the new Regional Cancer Centre is in operation. [vi]

"The prize is a particularly great one. Greater organisational efficiency in cancer services might, of itself, save up to 600 lives a year in Northern Ireland. This excludes the further reduction in mortality from cancer that could result from better prevention and earlier diagnosis." [vii]

24. It is hoped that through the Committee's Inquiry into the Delivery of Cancer Services for Northern Ireland there will be a renewed focus and urgency on the implementation of the recommendations of the Campbell Report 1996, and that the focus of all actions will be on the benefits for cancer patients.

"These significant health care gains will, of course, take time - but this is no excuse for unnecessary delay, and we must all ensure that the framework for the development of more efficient cancer services is in place as soon as is practicable."[vii]

25. A crucial context for the current problems bedevilling the delivery of cancer services in Northern Ireland is that of resourcing. Cancer is a major public health problem. The financial cost of diagnosis, treatment, care and support for patients is immense. The stark reality is that a combination of clinical advances, an ageing population and increasing patient expectations will jointly contribute to heightened pressures on cancer services for the foreseeable future. Therefore, the ambitious plans for the new Regional Cancer Centre and Units, together with improved staffing, equipment, drugs and information systems, must be accompanied by significant funding if they are to meet successfully the long-term needs of the population.

26. In the current climate of severe governmental budgetary constraints, this will be no easy task. It is worth making the general point that the UK Government currently spends just under 7% as a percentage of GDP (albeit rising in 2002 to 7.7%) on health, as compared to an average of 8.6% for other Western countries, 9.6% for France and 14% for the US. [viii]

27. Referring to the lack of proper investment in cancer services here, Prof Patrick Johnston in the document 'Invest Now 2000' stated that we, as a society, should:

"no longer.accept a situation where a set of diseases that affects one in three of our population and results in the death of one in four people is not adequately resourced and tackled in order to bring our survivor figures for cancer up to those seen in the best European countries such as Switzerland and Holland".

28. It is not disputed that additional resources have been ploughed into cancer services since the Campbell Report of 1996, as there was a consensus that significant additional sums were needed if the benefits of realigning cancer services were to be delivered in the years ahead. Indeed, since 1999 recurrent increased funding of £13m per annum has helped to meet the significant increase in drug costs, enabled the improvement in premises infrastructure and provided for the appointment of over 200 additional cancer service staff. [ix]

29. All this is very welcome substantial progress, but significant extra funding is needed to continue the improvements in the delivery of the various components of cancer services. To put this in context, the number of referrals to oncologists has risen from some 3,400 in 1996 to 4,100 in 2000 and is eventually expected to increase further to some 6,500. [x] (see section on Staffing). The cancer workforce plan, including training, will require a significant resource commitment. For example, some £1.27m is estimated as required for an additional 13.5 consultant oncologist posts and eight trainees. Equipment costs of £11.35m have been identified within the Belfast City Hospital Trust's business case for the Regional Cancer Centre. [xi] Also, the prices of drugs continue to escalate as new chemotherapy treatments come on the market. Drug costs are currently estimated to increase annually by £7.5m over the next three years. [xii]

30. The latest figures for the new Regional Cancer Centre are an estimated £57m for the capital build and annual revenue costs of £10.5m. [xiii] Additional funds amounting to £9.2m have recently been allocated for specific new projects from the second tranche of Executive Programe Funds released by the Minister of Finance and Personnel in December 2001. From this, the Service Modernisation Fund will help to provide both an urgently needed MRI and CAT scanner at the Belfast City Hospital for cancer diagnosis, cancer staging and the monitoring of responses to treatment. [xiv]

31. Given the increasing demand for cancer treatment year on year, and the rapid development of new drugs, the reality is that an increasing level of resources will be required. Chemotherapy and radiotherapy workloads continue to increase annually, which has left the service unable to meet the demand for cancer services in acceptable timescales. The Southern HSS Council reports that Northern Ireland's leading cancer clinicians estimate that funding will need to be at least doubled to £30m per annum if the vision of the Campbell Report 1996 is to become a reality and provide Northern Ireland with a cancer service to rival the best in Europe. [xv] The Campbell Commissioning Project Board estimates that an additional £17m to £20m, including revenue costs, will be needed to support capital investments at the Regional Cancer Centre [xvi] , with an additional £15.4m required from 2000/01 to 2003/04 to expand cancer services at the Cancer Units. [xvii]

32. In spite of the fact that Northern Ireland features consistently at the upper end of socio-economic deprivation indices in comparison with Great Britain, we have demonstrably lower funding allocations for health services. During the 1990s, while expenditure on health and personal social services (HPSS) in Northern Ireland grew by 35% in real terms, for England the growth amounted to 57%. And the 1998/99 to 2000/01 Comprehensive Spending Review has served to widen the gap further. The figures in the table below, which outline the annual percentage baseline increases in resources as part of the current Spending Review period (2001/02 to 2003/04), indicate a deteriorating situation. [xviii]

33. While the contrast in the respective percentage changes is stark enough, the disparity becomes even clearer when the English change is applied pro rata to Northern Ireland's HPSS budget. Had Northern Ireland matched the increases for England, the HPSS would have gained an extra £83m for this year (2001/02), £138m for 2002/03, and £214m for 2003/04.¹⁸ To this end, the Committee fully supports the Executive in pressing for a fair allocation of UK public expenditure to Northern Ireland. The Barnett formula that is used to determine our levels of expenditure is recognised as resulting in lower public expenditure here than England, Scotland and Wales. [xix]

34. It is therefore noteworthy to compare pro rata spending on cancer services here with England and Wales, where the ambitious NHS Cancer Plan of September 2000 set out the necessary milestones to deliver the fastest improving cancer services in Europe over the next five years. This plan will be supported by significant additional resources year on year, as shown in the following table:

35. The provision of an extra £3m this year for the development of local cancer services, on top of £7m in 1999/2000 and £8m in 2000/01, has helped provide a welcome boost to specialist staffing, including two additional consultant oncologists and 70 nurses to the Regional Cancer Centre and Units. [xx] However, given the rapidly increasing drugs bill and the inevitable expansion in cancer patient numbers associated with an ageing population, such resources for the development of cancer services must be sustained and, indeed, built upon.

36. The Committee was dismayed at the Department's initial indication that there was no service development money in the draft budget plans for 2002/03, although the position has changed somewhat with the announcement in December 2001 by the Minister of Finance and Personnel of an additional £41m for the Health Service in the same year. The Committee welcomes Minister de Brún's commitment to use the extra funds to target, among other priorities, cancer services, which it would therefore expect to attract additional resources for essential continued development.

37. The New Opportunities Fund, which distributes moneys from the National Lottery, provided £6.4m in July 2001 towards a range of innovative projects aimed at cancer prevention, detection, treatment and care, including funding for four MRI scanners, which the Committee welcomes. [xxi] However, the Committee agrees with the General Practitioners' Committee of the BMA (NI) that this is no substitute for mainstream Government funding for the NHS in a planned and rational way. It is also generally recognised that there has been a historical over- reliance on the voluntary sector, particularly in relation to the provision of palliative care and information services. The Committee notes the vital financial contribution made by the voluntary sector to innovative cancer services. For example, over the last four years Macmillan Cancer Relief has invested £5m in Northern Ireland, four times what it has raised here. [xxii]

38. Given Northern Ireland's well documented problems of poverty, social deprivation and historical lack of investment in health, it is unacceptable that its cancer services should not enjoy a pro rata ring-fenced, spending increase in line with Great Britain to support a strategic plan for improved staffing levels, facilities, equipment, drugs, and information systems. The necessary additional Health Service resources must be found to support the expanded programme of cancer care.

39. Any future commitment by the Department to increase substantially resources for cancer services would need to be accompanied by proper evaluation and monitoring mechanisms. The Health Service, in general, is seen by many as a "bottomless pit" for money, and it can be argued that this is, in part, attributable to a lack of clearly defined objectives and goals. It is therefore imperative that a structured clinical audit process be developed to ensure that outcomes and improvements in cancer services are properly measured and can demonstrate value for money. This should be undertaken for the individual Cancer Units and not just for the region as a whole. The results of regular audits should be made available to all cancer staff. Professional and patient feedback should be sought on service improvements.

The Department should provide cancer services in Northern Ireland with a pro rata ring-fenced increase in funding in line with Great Britain to support a strategic plan to improve staffing levels, equipment, drugs and information systems.

A rigorous independent audit of cancer services should be conducted annually, both regionally and at the individual Cancer Units level, to ensure that outcomes and improvements are properly measured and can demonstrate value for money.

40. While this report rightly examines vital and inter-related aspects of cancer services such as the Regional Cancer Centre and Units, facilities, primary care and strategic issues, the foremost focus must be on the direct needs of those for whom the service exists: the patients. As the Southern HSS Council submission states

"The views, expectations and aspirations of patients are of paramount importance."

41. Evidence from research by Macmillan Cancer Relief and from submissions given to the Committee highlight considerable differences in patients' cancer experiences, with varying satisfaction rates. However, given the somewhat chaotic and unpredictable cancer experiences of some patients who gave evidence, there would seem to be a strong case for redesigning services in order to focus more on the patients' experiences throughout their cancer journey.

42. Patients' main concerns were broadly summarised under the following categories:

43. As cancer is the second most common cause of death, there is a pressing need to detect the disease at an early stage. It is generally accepted by the medical profession that the earlier the detection, the more successful the treatment. The Northern Ireland Cancer Registry found that the effect of stage at diagnosis on the relative survival rates was statistically highly significant, with better survival rates associated with earlier stage diagnosis. [xxiii] The Committee would therefore like to see much greater emphasis placed on heightening public awareness of the symptoms of cancer. Information on the symptoms of all cancers must be presented to the public in an easily understood format.

The number of cases registered, the relative survival rates (%) and 95% confidence intervals at one, three and five years, for women diagnosed between 1993 and 1996.

44. From a psychological perspective, Macmillan Cancer Relief research showed that early diagnosis affected people's overall perception of their experience of cancer care.

45. Breast and cervical cancer screening programmes for women are important, and primary care plays a vital role in promoting the uptake of such services. Prof Paddy Johnston, head of oncology at Belfast City Hospital, states:

"Screening is a vital tool in the early detection of the disease and in improving diagnosis and treatment - and ultimately improving the survival rate of women." [xxiv]

46. The breast screening programme implemented in Northern Ireland ten years ago has contributed to our five-year survival rate of 78% to 79%, which is the best in the UK and compares with the best western countries. [xxv] The effect of the NHS Breast Screening Programme has been a 14% increase in the number of breast cancers detected between 1993 and 1996. [xxvi] Recent statistics compiled by the Imperial Cancer Research Fund and the Cancer Research Campaign indicate an average of 860 new cases of breast cancer diagnosed in Northern Ireland each year. Consequently, the fact that the number of women in Northern Ireland presenting for their first breast screen has increased by 9% and 2% in the periods 1997-2000 and 2000-01 respectively must be seen as a positive development. It must be emphasised that breast cancer is not only a problem for elderly women.

47. The table below, while indicating a welcome rise in the percentage of women in Northern Ireland presenting for screening, shows that there is clearly scope for improvement when compared with Great Britain. [xxvii]

Number of women screened (aged 50-64), expressed as a percentage of those invited for
screening in the target age group.

48. Steps must be taken to heighten public awareness of the early symptoms of cancer and for those patients with the more suspicious signs of cancer to be identified quickly. Urgent diagnosis will lead to patients being taken into hospital for immediate treatment or placed on a waiting list for non-urgent treatment. An important point made by a number of witnesses was the need to educate the public and, in particular, to target proactively the uptake of screening programmes among poorer people, as social and material deprivation are the main determinants of variation in health status and social and healthcare need. Initiatives such as the Breast Cancer Awareness Month run by Action Cancer are welcome developments. GPs are also crucial in ensuring the effectiveness of screening programmes and can play an important role in ensuring that their patients understand the relevant issues.

49. The recent launch by the Chief Medical Officer of three new information leaflets aimed at encouraging women to take part in cervical cancer screening programmes is an important initiative, given that some 30 to 40 women who die from cervical cancer in Northern Ireland each year have not been attending regularly for their smear test. [xxviii] Last year, 31% of eligible women had not had a cervical screening test in the previous five years. It is vitally important to ensure that the message is directed particularly at those living in socially deprived areas, where uptake rates have been below average. The evidence suggests that cancer rates are highest for the most socially deprived people. [xxix] The Committee strongly supports local initiatives such as the community facilitators project run by the Eastern HSS Board, which trains women in deprived areas to encourage their peers to present for screening. [xxx]

50. The Committee also welcomes the vital work of the recently relaunched mobile unit from Action Cancer, in association with Supervalu, which travels to communities and workplaces all over Northern Ireland teaching breast awareness, health promotion, carrying out cervical screening and making referrals to other agencies. [xxxi] There should be more innovation in the promotion of the importance of screening programmes, where these take place, how to access them, and the procedures involved. Also, further research must be undertaken in order to understand why some people do not use screening services, even though, when questioned in research, they have indicated that they feel the services are well designed and accessible.

51. The Committee believes that there would be merit in extending the remit of the Health Promotion Agency to enable it to provide limited grants for local community health initiatives. Health action zones (HAZs), which are partnerships between the Health Service, local councils, community groups and the voluntary sector, can play a pivotal role in helping to improve the uptake of cancer screening and in promoting greater public awareness in those areas of highest deprivation and poorest levels of health. The Committee sees considerable scope for the Health Promotion Agency and HAZs to collaborate, particularly with primary care professionals, in the dissemination of good practices in cancer care and to encourage the public, particularly in areas of social disadvantage, to take responsibility for their own health. It therefore welcomes a proposal by Action Cancer with the New Opportunities Fund in partnership with the Northern Ireland Chest Heart and Stroke Association to target health action zones. [xxxii]

52. The Committee welcomes the potential detection method for ovarian cancer that combines a blood test (to measure the serum levels of cancer antigen 125, which is a tumour marker produced by most ovarian cancers) and hi-tech ultrasound scanning. This may arise from research being undertaken by the Cancer Research Campaign into ovarian cancer. Three randomised control trials on cancer in England are due to report in 2003, which may provide the platform for progress. [xxxiii] This is particularly important as in a European- wide league table of five-year survival rates, Northern Ireland sits at the bottom with Estonia and Slovakia (27%), well behind Sweden which has a 45% survival rate.

53. Ovarian cancer is the fourth most common and fourth biggest killer cancer in the UK, being notoriously difficult to detect early because the symptoms are often vague. Approximately 75% of women diagnosed with ovarian cancer in the UK present with Stage III, and the outlook can be bleak as a result. Ovarian cancer kills 100 women in Northern Ireland each year and 160 new cases are diagnosed annually. Given the enormous impact on survival of screening programmes for breast and cervical cancer, a similar programme for ovarian cancer would be a most welcome development. [xxxiv] The earlier these cancers are detected the more successful the treatment. The Committee is aware of the work being done by the National Screening Programme in the context of the survival rate figures for Northern Ireland. The Committee welcomes the launch of a major new £1m ovarian screening project at Belfast City Hospital on 24 January 2002, involving more than 16,000 women in Northern Ireland, as part of a UK-wide collaborative programme to determine whether screening will detect ovarian cancer at an earlier stage when treatment is more effective. [xxxv]

54. Lessons can be learnt from innovative practices in the NHS in England designed to increase capacity. New arrangements will make better use of the skills and abilities of its staff. For example, the NHS breast- screening programme will introduce assistant practitioners in mammography who will be educated and trained to take mammograms. New national workforce training initiatives will be undertaken to reduce waits for diagnosis and treatment. For example, more nurses will be trained in the technique of endoscopy. [xxxvi]

55. There also needs to be a stronger focus on men's cancer, as they are notoriously reluctant to attend their doctor and need to be encouraged to take their health more seriously. Prostate cancer is on the increase, with approximately 200 deaths each year in Northern Ireland compared with 300 female deaths from breast cancer.32 One recent welcome initiative was the Action Man Campaign in June 2001, which saw a rise in calls to the Action Cancer centre that month to 500 from 50 in June 2000. [xxxvii] The Ulster Cancer Foundation also set up two new support groups for men with prostate cancer in the past year, which is another welcome development. [xxxviii] The Committee recognised the importance of highlighting men's health issues when it hosted a seminar in Parliament Buildings in June 2001, which included a wide range of speakers on all aspects of men's health, including cancer.

56. The Committee strongly supports the announcement by the Minister last year of an Imaging Modernisation Programme that identified as a key priority the expansion of MRI provision to all Cancer Units in Northern Ireland. It notes, though, that while the New Opportunities Fund awarded lottery funding for an additional three MRI scanners at the Ulster, Antrim and Craigavon Area Hospitals in July 2001, it will take at least a further 12 months to install this equipment. The Committee noted that nine of the fifteen fixed mobile mammography screening units are over ten years old, though a tendering process for the purchase of six new units is nearing completion. [xxxix]

57. The absence of modern imaging equipment inevitably places further pressure on waiting lists and bed occupancy levels. The Committee was therefore pleased to learn that funding has been granted for two MRI scanners at the Royal Victoria Hospital and Belfast City Hospital, and an additional CAT scanner at the Belfast City Hospital. These are both essential tools in cancer diagnosis. [xl] This much needed additional equipment will help increase the throughput of investigations and relieve pressure on waiting times.

The Department should review the remit and resourcing of the Health Promotion Agency, with particular regard to cancer prevention, to provide it with an effective lead role in health promotion, including the power to make limited grants to local community health initiatives.

The Health Promotion Agency should collaborate with the HSS Boards and Trusts, together with the community and voluntary sector, in developing a co-ordinated range of initiatives to improve the uptake of cancer screening. Particular emphasis should be placed on promoting greater public awareness of the early symptoms of cancer in areas of social disadvantage and poorest levels of health.

58. After diagnosis, treatment should be swiftly planned and carried out. Prompt referrals by GPs are therefore crucial. A number of nationally agreed referral guidelines currently exist for cancer, although their accessibility to GPs is, and has been, a problem in primary care. In 2000 the Department of Health published 'Referral Guidelines for Suspected Cancer', which was designed to assist GPs in identifying those patients who are most likely to have cancer and who therefore require urgent referral to a cancer specialist. Prof Paddy Johnston emphasised that a system of direct referral from primary care providers to specialist cancer clinics would "significantly enhance" this component of care. The Committee strongly agrees with the conclusion of the Scottish Executive Health Department that GPs and primary care teams need to be more involved in guideline referral developments through managed clinical networks (see section on Integrated Clinical Network of Care).

59. The Campbell Report 1996 recommended the setting up of a directory of appropriately trained cancer specialists to help GPs in the referral of patients. Given the problems that the increasing specialisation of cancer consultants has created for GPs, this underlines the importance of such a directory of specialist services. The Committee would therefore like to see expedited the work already begun on developing an advanced cancer service directory for Northern Ireland. The Macmillan GP Facilitators can play an important role in the dissemination of such information to their colleagues in primary care.

60. Waiting for cancer diagnosis or treatment is a distressing time for both patients and their families, as highlighted by several witnesses in both oral and written submissions. Not only is waiting time worrying; it can also be life-threatening. While the expectation of the Campbell Report 1996 was for a two-week deadline between a GP making a referral and the patient being seen by a consultant, it appears that - with the notable exception of breast cancer - this objective is not being met. Delays in treatment further down the line can occur as a result of breakdowns in scanning equipment, shortages of intensive care beds, skilled staff and drugs. (see section on Service Inequalities)

61. Anecdotal evidence from the BMA (NI) GPs' Committee suggested that waiting times for people with suspected bowel and other cancers seemed to be lengthening. While the recommended standard for the commencement of radiotherapy is four weeks after being seen by a clinical oncologist, the Eastern HSS Council reports that patients are waiting on average six to seven weeks. [xli]

62. The NHS Cancer Plan for England and Wales outlines phased progress towards two ambitious objectives by the year 2005: a maximum one month wait from diagnosis to treatment for all cancers; and a maximum two month wait from urgent GP referral to treatment for all cancers. It acknowledges that, in order to achieve these targets, significant resources will need to be invested in equipment for diagnosis and treatment, and additional staff working in innovative ways. The Committee strongly believes that Northern Ireland should be striving to meet equally stretching targets in the context of an expanded patient-centred cancer service, which is properly resourced, staffed and operating efficiently.

63. The Cancer Services Collaborative is a Great Britain initiative that is already contributing significantly towards these aims through redesigning cancer services from a patient perspective and optimising the benefits of multi-disciplinary team working. It has shown that the way in which cancer services are organised can lead to delays in the system. For example, one team working at the Central Middlesex Hospital has demonstrated that through pre-scheduling of diagnostic interventions they could reduce the wait from first appointment to the start of treatment from 28 to eight days. [xlii] The Committee strongly believes that Northern Ireland can learn important lessons from the Cancer Services Collaborative in terms of streamlining the delivery of care and reducing waiting times.

64. Only scant information could be gleaned from the DHSSPS website on day case and outpatient waiting lists for medical and clinical oncology. The information was neither comprehensive nor comparable to types of cancer data compiled by other UK countries. In this respect, Northern Ireland did not differ from Great Britain, where there was consistently a lack of detailed waiting time data from the central statistics units. In order to better inform the public and aid overall planning and target setting, regional statistics on waiting times for diagnosis and treatment for the different cancers should be collated and scrutinised centrally.

The Department should set a target of a maximum one month wait from diagnosis to treatment of all cancers by 2005; and a maximum two month wait from urgent GP referral to treatment for all cancers by 2005.

A system of direct referral from primary care providers to specialist cancer clinics should be developed and complemented by an advanced directory of specialist cancer services for Northern Ireland.

Relevant and up-to-date-information on waiting times for diagnosis and treatment for the different cancers should be presented in an easily understood format on the Department's website and via other public information facilities. The Department should liaise with its counterparts in Great Britain and elsewhere to standardise information available to the public to allow accurate comparisons to be made.

65. Effective communication between health care professionals and patients is essential for the delivery of high quality care. The Committee was therefore dismayed to learn that poor communication at all levels - particularly in relation to the breaking of bad news - was cited as a concern of patients. Many patients who gave evidence complained about the lack of information and communication between the cancer professionals and them and their families. They felt that this compromised their ability to make informed decisions about the treatment options available to them. A survey of cancer patients commissioned by National Cancer Alliance in 1996 found that patients wanted information that was easy to understand, consistent and comprehensive.

66. Diagnosis of cancer is a most traumatic time for the patient and their family, and this requires information to be given in a sensitive but open and frank manner about the available treatment options, including their side effects. Patients need adequate time and space to digest the information and to seek clarification. They also have a right to written information on cancer in general and their own cancer type in particular. The following quote from a patient in the Care for Cancer submission is an indication of the frustration experienced by many regarding lack of communication, which can also be interpreted as a lack of respect:

"Medical staff should appreciate that patients can understand most medical information. Information should be readily available to patients and their relatives - not hidden from them, which can create suspicion and lack of trust."

67. It is also important to bear in mind the importance of conveying good news promptly. The Committee learnt of one instance where a patient had been left waiting for six weeks for test results that showed all clear, because the doctor had been concentrating on telling patients bad news. Relaying good news swiftly to patients for their peace of mind is equally important. [xliii]

68. The personal touch is clearly important to patients, who repeatedly made the point that they wanted to be treated with sensitivity and as a person, not a number. As one former cancer sufferer put it:

"We need the tenderness a nurse can offer; the listening ear, the confidence-giving during our treatment." (Ulster Cancer Foundation)

69. The Western HSS Council emphasised that this was particularly important at the diagnosis stage, where patients wanted a face-to-face meeting with the medical specialist in private to discuss the implications of the diagnosis. The importance of health care professionals handling patients with sensitivity and compassion during this emotionally charged period is illustrated by the following two contrasting experiences of patients, taken from the Care for Cancer submission:

"I nearly always feel deflated after a clinic with the oncologist. A word of encouragement and a little more diplomacy by some consultants would do wonders for morale."

"(Belvoir Park Hospital) Nurses exceptional. Take time with everybody, feel that they care.Great atmosphere".

70. Many patients reported that they and their carers were not being afforded due respect because of their lack of involvement in decision-making. They want to be empowered to make informed choices about treatment options. A common complaint was that there was insufficient information to explain problems, which undermines patients' ability to have a meaningful input into discussions about diagnosis. The Department should learn from the work of a new Cancer Information Advisory Group in England, chaired by the National Cancer Director, which assesses gaps in information and draws up guidance notes for good practice. [xliv] Conferences such as "Living with Cancer", which was organised by Action Cancer and the Ulster Cancer Foundation in November 2001, are an important outlet for patients and former patients to provide feedback and help inform planning of services.

71. Patients emphasised the importance of being given clear information at the initial meeting; thereafter, they become more aware of what to expect. They also highlighted the importance of being given space and time to deal adequately with information and seek clarification. As communication is a two-way process, patients expect that, as well as imparting information, cancer specialists will be available to listen and provide support, particularly during initial diagnosis and early treatment. The Committee noted the important development for cancer patients in England and Wales of a free booklet that lists essential questions that they can ask their doctors and nurses, and describes the standard of care that cancer centres should be offering. This initiative by the Commission for Health Improvement and the Audit Commission came about following their joint report in 2001, which found unacceptable variations in standards of cancer care. [xlv]

The statutory and voluntary sectors should work collaboratively to develop a joint training package in communication skills, including a policy on breaking bad news. The training should be mandatory for all cancer care professionals

The Department should ensure that the HSS Trusts, Regional Cancer Centre and Units provide all cancer patients with high quality, sensitive information on local services, their specific cancer and treatment options.

72. Many submissions to the Inquiry bore the point that, as cancer patients are affected psychologically as well as physically, the provision of psychosocial support is extremely important to them. In the words of one former breast cancer patient:

"To have one's mortality threatened in such a basic way can be life changing and very frightening. The very least that we can expect from a cancer service is that it not only meets the physical needs of the patient but also the emotional needs of both the patients and their families."

73. While psychosocial care and support must be an integral part of cancer services, the evidence points to much more proactive work being needed in this area. With an estimated one third of cancer patients suffering from depression at some time during their illness, it is vital that they be afforded psychological and social care.

74. The Committee was dismayed to learn that, while Macmillan Cancer Relief research points to the positive effect of early support on patients' overall perception of their experience of cancer care, recent research by the Ulster Cancer Foundation indicates that very few patients are advised of psychosocial support services provided by voluntary organisations. Many only find out about them much later in their cancer journey. One former cancer patient bemoaned the absence of emotional support during the traumatic time for her and her family:

"We received no literature about counselling services or support groups. Some sort of informal discussion group would be beneficial. It should not be assumed that because a patient is a regular attendee they do not need help in coming to terms with their illness."

75. Much positive work, though, is being done in terms of this psychosocial support for cancer patients that would help inform future planning of services. For example, the highly regarded Gerard Lynch Centre at Belvoir Park Hospital, which offers an extensive range of support services, is a model that could be rolled out to the Cancer Units. The Committee strongly welcomes the intention to maintain that service in the Belfast City Hospital's new buildings at Wilmot Terrace. In the Armagh and Dungannon HSS Trust area specialist professionals in cancer, together with social workers, are on hand to listen and provide emotional support during initial diagnosis and early treatment for both patients and their family. [xlvi] Several witnesses expressed the need for continuity of counselling support when they were at home after receiving treatment instead of being "just left to cope". The Western HSS Council stated that this should be for a minimum of 12 months after diagnosis and include the right to at least two home visits by a health professional.

76. It is clear from the following quotes in the Care for Cancer submission by members of a successful support group that patients put great store by the opportunity to meet and share experiences with others who have been through the same cancer and to avail of cancer services through both the voluntary and statutory sector. Groups providing such practical support need to be properly supported through close co-operation and co-ordination between the statutory and voluntary sectors.

"Glenview (Belvoir Park Hospital) was a particularly happy unit, where many occupational therapy services were provided. All the patients agreed that they were able to forget about their illness in this environment. Our local 'Care for Cancer' Centre in Omagh provides a first-class service for cancer patients and their families. Patients are free to visit the Centre at any time to talk with the co-ordinator or a member of the committee about their problem(s) and if it is felt counselling is necessary, an appointment is made with a trained counsellor". [xlvii]

77. One witness spoke in glowing terms of the Ulster Cancer Foundation's befriender system at Belfast City Hospital, referring to her cancer friend as her "ray of hope". The recent development of two support groups for men with prostate cancer is particularly welcome, as males are generally reticent about talking about personal health problems. [xlviii]

78. Evidence also suggests that there needs to be a more positive public attitude to cancer. A UK-wide piece of research by Macmillan Cancer Relief entitled 'Open Space' indicated that one in ten wanted more positive news in the media about people living with cancer. Many patients perceived cancer as being given a negative and confusing image, which they wanted to see countered.

The Department, HSS Boards and Trusts, together with the community and voluntary sector, should jointly collaborate in the development of a comprehensive information pack for all patients, their families and carers that addresses their emotional needs. Patients should be advised at the start of their cancer journey of the full range of psychosocial support services available.

79. Palliative care is the treatment and care of patients with active, progressive disease and for whom the goal of care is quality of life. It is integral to cancer services from the point of diagnosis and not just towards the end of life. As increasing numbers of patients are choosing to remain at home for treatment and during the final stages of terminal illness, it is extremely important that staff be equipped with the specialist skills required for palliative care. This reinforces the argument for the development of staff in residential and nursing homes in basic training standards, as well as the provision of palliative care equipment, such as pressure-relieving mattresses, and pain-relief drugs.

80. The Committee learnt that while considerable investment had been made in developing palliative care services, much more work needs to be done. Palliative care needs more consultants, dedicated palliative care nurses and community nurses. [xlix] The Macmillan Cancer Relief palliative care office in the centre of the cancer treatment unit at Belfast City Hospital is an important visible service to patients. As the principles of patient-centred care apply across all conditions and settings, the Committee was dismayed, however, at evidence suggesting that the majority of palliative care consultants are hospital-based, while access to community-based care is at best patchy with little evidence of co-ordination or partnership between the voluntary and statutory sectors. [l]

81. The Macmillan Cancer Relief submission pointed to disparities in the provision of palliative care across the HSS Trust areas, and noted a shortage of palliative care beds outside Belfast, particularly in the Sperrin Lakeland area. It is unacceptable for palliative care patients waiting for radiotherapy to be unduly delayed, depending on where they live. All patients should have speedy access to the specialist palliative care advice and services that they need. Lessons can be learnt from the South and East Belfast HSS Trust's rapid response service, provided by specialist nursing staff, which handles 120 referrals per month from GPs, District Nurses attached to GPs, and A&E departments, 15% of which are for palliative care. This initiative helps acutely ill patients to remain at home who would traditionally have been admitted to hospital. [li]

82. The Committee feels strongly that there ought to be a commitment to increase Departmental funding in respect of palliative care as a core service, because for too long it has almost been seen as an optional add-on. The recent trend to jointly fund palliative care posts between the statutory and voluntary sectors is paying dividends in terms of education and improving communication among health professionals, and this must be built upon. [lii] Although its provision has hitherto largely been dependent on the voluntary sector, there is at least now a recognition in the NHS in England of the need for substantial investment of resources to end inequalities in access to palliative care. By 2004 the NHS will be pumping an additional £50m into specialist palliative care services in England, thus matching investment by the voluntary sector for the first time ever. Moreover, the New Opportunities Fund will be investing in further palliative care initiatives aimed at socially deprived groups over the period 2001-2005. [liii]

83. The Committee strongly agrees with Macmillan Cancer Relief that palliative care should be represented on all cancer planning forums and is astonished as to why this is not already the case. It is vital that innovative practices in HSS Trusts are shared and developed so that Northern Ireland has a fully integrated palliative care service. For example, the Southern HSS Board has reviewed and enhanced communication between GPs and its consultant-led palliative care team at the Cancer Unit, which includes input from nurses, counselling staff and Professions Allied to Medicine.

84. The Committee strongly supports the new pharmaceutical palliative care initiative service in the Southern HSS Board area, which aims to deliver high quality patient-centred services and improve communication between professional staff. The scheme will provide better access to care for cancer patients and better access to pharmaceutical information and supplies for healthcare professionals. [liv] Joint research has been carried out between Macmillan Cancer Relief and the Cancer Unit on the needs of patients with a view to recommending changes in practices. [lv]

The Department, HSS Boards and Trusts should work in strategic partnership with the voluntary sector to achieve prompt patient access to a fully integrated palliative care service across Northern Ireland. The administrative boundaries of HSS Boards and Trusts should not prevent equitable access to such a service. Palliative care should be represented on all future cancer planning forums.

85. The submission from the Social Services Inspectorate highlighted the increasing numbers of cancer patients in Northern Ireland being treated as day patients and being cared for in their own homes, which is their clear preference. This growing trend, of course, places ever-greater pressure on community care agencies to respond to this changing need by providing more skilled staff and domicillary care packages. For example, palliative care packages have increased by one third in some HSS Trust areas. The social work department in one of the Cancer Units was reported as taking on some 17 new referrals per month, many of which were extremely complex, needing significant input for the co-ordination of domicillary care packages.

86. Such pressures on community care for cancer patients have clear resourcing implications. The Department must ensure that these resources are fully costed into any cancer plan and that resources are allocated where they are needed. The effectiveness of the Regional Cancer Centre and Cancer Units will depend on adequate funding for community care, particularly domicillary care packages. [lvi] The Committee welcomes the additional 230 care packages for this year and a further 1000 care packages in 2002/03 to address the local priorities in each Trust area. [lvii]

The Department should ensure adequate funding for community care, particularly domicillary care packages, to support the increasing number of cancer patients being treated as day patients and at home.

87. An important part of the holistic picture of cancer services is that of rehabilitation, as increasing numbers of people are recovering from cancer. This is an area ripe for development of a joint approach between the statutory and voluntary sectors in patients' needs assessment. This is where professions allied to medicine play such an important part. Teams in the fields of speech therapy, occupational therapy, physiotherapy, dietetics and nutrition are crucial to cancer patients. Other therapies that complement clinical treatment are hairdressing and wig fitting.

88. Macmillan Cancer Relief has already entered into discussions with the Social Security Agency about a project to identify obstacles to cancer patients taking up benefits. There is no financial advice service at present. The importance of developing such a strategy is highlighted by the following statement:

"Finance is the fifth most common issue raised at the time of diagnosis. The impact on cancer patients as they go through their treatment can be immense." [lviii]

89. The issue of transport and accessibility cropped up with regularity in the Inquiry and is clearly a priority for cancer patients, particularly those living in rural areas. The Committee fully agrees with the sentiments of patients canvassed in an Eastern HSS Council survey that all cancer patients in Northern Ireland should have equity of access to the new facilities, with the onus on the statutory authorities to provide comfortable and reliable transport. This is allied closely to the ambulance service review, which must ensure speedy and equitable access to cancer services for all patients regardless of where they live.

90. There should also be a focus on the scope for enhanced local services to reduce travel. For example, some Trusts have improved the local primary care infrastructure to support the taking of blood samples nearer a patient's home and sending the results electronically to the Regional Cancer Centre; while there are other examples of local nurse practitioners carrying out review clinics. Breast cancer patients in Fermanagh can have a blood count check carried out in the Erne Hospital in advance of their attending Belvoir Park Hospital for treatment, thereby avoiding an unnecessary 170 mile round trip if it transpires that chemotherapy treatment should not proceed.

91. But while relatively few wasted journeys are made compared with several years ago because of improved local arrangements, there are occasionally communication breakdowns with the result that blood count information that has been transmitted to Belvoir Park Hospital cannot be found on the day it is needed. (See section on Information Management under Strategic Issues)

The Department should oversee a strategic review of transport arrangements by the HSS Boards and Trusts to ensure that all cancer patients in Northern Ireland have equity of access to the new facilities.

The Department should co-ordinate a shared approach to individual HSS Trusts' good practices that cut down on travel, and oversee their implementation across the region where possible.

92. The delivery of high quality cancer services is clearly dependent on staffing as well as facilities and equipment. However, while the commitment and dedication of staff delivering local cancer services are unquestionable, the reality is that years of underfunding has meant that there are not enough of them. Inadequate investment in staff and training has inevitably undermined their ability to deliver the best possible service. The importance of establishing a comprehensive workforce plan for cancer services is highlighted in the following quote from the written submission of the Campbell Commissioning Project:

"It is vital for Northern Ireland to have a workforce plan for all types of staff working on the cancer agenda. If such a plan is not developed and implemented, there is a very real danger that Northern Ireland will be behind the rest of the UK in the development of services for patients and that there will be variability across Northern Ireland in service provision."

93. The successful future delivery of cancer services in Northern Ireland will therefore be contingent on the Department's ability to recruit and train the diverse range of extra staff required. These will include radiologists, pathologists, surgeons, medical and clinical oncologists, palliative care specialists, oncology pharmacists, therapists, scientists, technicians and administrative staff. Reducing waiting times for cancer patients and improving the quality of treatment they receive will depend on the ability of the Health Service to recruit, develop and support its wide-ranging staffing needs. There is a clear need to expand the staffing levels, as it is being predicted that one in four may develop some sort of cancer before the age of 75.

94. Unfortunately, there are wide gaps right across the spectrum of cancer services staff due to chronic under- investment in the Health Service. Several witnesses expressed concern about staff shortages in every area of cancer services. Patients complained about nurses not having enough time to speak to them and that doctors were under pressure. This resulted in increased anxiety of patients. The HSS Trusts have experienced problems in recruiting consultants in a range of cancer specialisms. There has been insufficient lead-in time to plan and implement major changes in training numbers following the rapid changes arising from the Campbell Report 1996. In order that the population should have access to good quality cancer services regardless of where they live, the problem of recruitment of staff to a number of key posts in the Cancer Units, as highlighted by the Campbell Commissioning Group, must be urgently addressed. A number of key posts in the Cancer Units, notably consultant oncologists, must be filled to ensure the public's access to good quality cancer services is not on a lottery basis.

95. A major deficiency in the provision of cancer services relates to the level of expertise and the number of staff at a variety of levels. For example, Prof. Johnston reports a significant deficit in the number of medical oncologists (2) and under-development of other specialities such as radiation/clinical oncologists. There will need to be a build-up, over the next 10 years, of between 30 and 35 medical and radiation/clinical oncologists to provide the necessary level service for patients. [lix] The Chief Medical Officer stated that the Department wanted to increase the number of oncologists from 15 to 26 in the next six years. [lx] This is supported by the fact that new patient numbers seen by oncologists have increased from 3,373 in 1996 to 4,066 in the year 2000, which is a rise of over 20%. It is further estimated that this figure will rise to 5,100 per year by 2005, which would be a total rise of over 51%. [lxi] The number of radiotherapy treatments has risen by 14% in the last year to approximately 95,000 exposures.⁶⁰

96. The Committee acknowledges the progress made by the Department against the recommendation in the Campbell Report 1996 for a minimum of 13 consultants in non-surgical oncology to cover provision of services from the Regional Cancer Centre and Cancer Units. The number of consultants in post has risen from nine in 1995 to the present figure of 14 posts filled out of 15. However, the unprecedented demands on cancer services have meant that, in spite of the substantial increase in consultant numbers, difficulties remain in providing a regional service. On a positive note, the number of trainees in medical oncology has trebled in the last five years and should suffice to meet the target figure of 26 by 2007/08. [lxii] The service in the southern sector of the Western HSS Board has been adversely affected since regionalization due to "lack of staff" from the Regional Cancer Centre. The same Board has no haematologists (both resigned) and patients from that area must travel to Belfast. The recent resignation of a radiologist at Antrim Hospital has caused delays in diagnosis.

97. The Southern HSS Council made the important point that any regional workforce plan should take account of a recent study by the Royal College of Physicians, which concluded that consultant shortages are set to worsen because so many doctors want to work part-time in order to balance family and professional life. In fact almost 70% of those surveyed wanted part-time consultant posts.

98. In spite of the welcome appointment of over 200 cancer service staff since 1999, it was emphasized that there are simply not enough specialist nurses trained to the necessary standards of expertise to fill the existing needs and those of the future. [lxiii] This is not to discount the welcome appointment of 70 specialist nurses to the Regional Cancer Centre and Units. [lxiv] In view of the shortage of specialist cancer nurses in areas such as chemotherapy and colorectal cancer, it is crucial that funding continues for the chemotherapy module in nurse training at Queen's University Belfast and specialist practice pathways in oncology. Such nurses can help to take the pressure off the scarce oncologists. The Department should continue to make strenuous efforts to attract experienced nursing staff, particularly those with specialist skills in cancer services, back into the Health Service.

99. The Committee welcomes the additional training programmes that are underway in the Health Service and in conjunction with charities such as Macmillan Cancer Relief, but these will take time to deliver the required numbers. The numbers of trainees in medical oncology and palliative medicine have trebled in the last five years, with significant increases also in the number of trainee radiologists and pathologists. [lxv] Any workforce strategy must reflect the additional training places needed to meet the future projected demands, and nurses must be enabled to take up such opportunities.

100. Prof. Johnston made the point that with the shortfall in the number of nurses and the development of Cancer Day Hospital treatments, increasing chemotherapy, peripherally inserted central catheters (PICC) and clinical trial research nursing numbers and expertise is absolutely critical. The Regional Cancer Centre is a top priority as it has lost a significant number of staff to the Cancer Units and the private sector. Dr Houston of the Campbell Commissioning Group stated:

"The setting up of the cancer units has been a cost to the cancer centre. There has also been a haemorrhage of skills from the cancer centre, which has been hard to replace, and we are struggling to recover the level of skills and applications needed there."

101. Key non-clinical staff include the cancer co-ordinators who facilitate fast tracking of patients through the system. They are essential in co-ordinating the collection of quality data for use not only in the Regional Cancer Centre and Units but also in clinical trials. Since no treatment can begin until the scanning results and blood results are received, it is vital that such services are staffed and working to full capacity in order to ensure a smooth treatment plan.

102. The South and East Belfast HSS Trust highlighted the need for a corresponding increase in the range of services provided alongside GPs to respond to the increased workload. There is clear evidence of increased referrals across all services. For example, there were 20 cases of people with head and neck cancers referred to Speech and Language Therapists for management of swallowing problems compared with only four in 1995. [lxvi] There has been no let-up in the demand for social work services at Belfast City Hospital since the establishment of the four Cancer Units, yet the ratio of consultants to social workers at the hospital has risen from 1:1 to 2:1. This ratio is envisaged to increase still further with the plan to provide an extra 11 consultant posts by 2007. There is only one full-time social worker posts for each of the Cancer Units, which is reported as being inadequate. There is a clear need to match future appointment of consultants' posts with a corresponding increase in social work posts, otherwise care of cancer patients in the community will become diluted and fragmented. [lxvii]

103. Multidisciplinary teamwork must be at the heart of activities if there is to be equity of access, better education and audit of standards of care. This is an area where there is considerable scope for improvement, due in large part to lack of administrative support. This deficiency must be addressed because communication between hospitals, GPs and other primary care staff about patients' needs and updates on treatments is vital. Administrative staff play a key supportive role (that is often neglected), as they tend to be the first point of contact for patients and doctors. They provide a vital communication link between hospitals, the Regional Cancer Centre and Unit, as well as the primary care sector on patients' needs and updates on their treatment or condition. They arrange and support multidisciplinary team meetings, outpatient visits/reviews and inpatient appointments. [lxviii] Specialists working in the Cancer Units have advised that administrative staff play a crucial role in the fast tracking of patients through the system and co-ordinating the collection of quality data for use in the Centre, Units and clinical trials. [lxix]

104. Effective investigation and treatment of cancer requires the combined services of specialist doctors, nurses and others. In order to meet the growing demand for cancer services, the Department must be able, together with the HSS Boards, Trusts and voluntary sector, to work up a detailed workforce plan for the recruitment and retention of an expanded range of staff, including surgeons, GPs, nurses, therapists, scientists, technicians and administrative support. It is imperative that such a complex plan should be accompanied by targets, timescales and significant resources for the recruitment and training of a full complement of staff working on the cancer agenda. This cancer workforce strategy will need to be underpinned by education and training for cancer staff, who need to be au fait with clinical and service developments to be fully able to deliver a quality service to patients. This will be crucial if we are to eliminate variability in service provision here and avoid falling behind Great Britain in the development of services for patients.

105. The Department has advised the Committee that an outline workforce plan was prepared in July 2001, which the Campbell Commissioning Project will produce shortly, following discussions with the HSS Boards, Trusts and the Department. The Committee looks forward to speedy action on the implementation of the plan. [lxx] It does, however, appreciate the enormity of detailed planning for the diverse range of specialities involved in treating cancer patients, particularly as many of those employed in these specialities will also be treating other diseases, and does not underestimate the complexity of the task in hand. For example, some staff, such as oncologists, work exclusively with cancer patients, while for others, such as radiographers and surgeons, cancer care forms a greater or lesser part of their work. Time is also a limiting factor in terms of how quickly improvements can be effected to the overall staff numbers. For example, it takes some 15 years to train a consultant, while other professionals involved in cancer treatment, such as nurses and radiographers, take several years to train.

106. The Committee would therefore welcome innovative short-term solutions, which could include, for example, training schemes for nurses to enable them to take on specific roles traditionally undertaken by clinicians. [lxxi]

107. Given the length of time and investment devoted to training, it is vital that Northern Ireland is in a position to compete vigorously with other countries for specialist cancer staff. The Committee was alarmed to hear from the Campbell Commissioning Group that Northern Ireland is losing newly qualified radiographers every year to Dublin or the south of England, for example, where they are offered better financial incentives.

108. It is therefore important that steps be taken to arrest such losses to try to ensure that the Department's current five-year predictive workforce plan does not fall short in any specialist discipline. The Department should examine the needs of cancer staff in terms of pay, flexible working environment and structured career progression, with particular emphasis on those areas where there are labour market shortages. Witnesses have indicated that significant resources will need to be earmarked to implement such a diverse workforce plan, including training posts.

The Department should urgently complete its outline work on staffing needs and produce a detailed regional workforce plan, underpinned by education and training for cancer staff, for the recruitment and retention of the diverse range of specialist staff required for an expanded cancer service for Northern Ireland.

109. A major recommendation of the Campbell Report 1996 was for the development of a new Regional Cancer Centre at the Belfast City Hospital site to provide a modern oncology service where service users could have access to a wide range of diagnostic tools and treatment not available at Belvoir Park Hospital. It would also act as a Cancer Unit for the local catchment population of about half a million people. Supporting this centre of excellence (which would form the Regional Cancer Centre together with the Royal Victoria Hospital) would be four Cancer Units as part of an integrated patient-centred cancer service for Northern Ireland. The "hub and spoke" approach to cancer services was intended to improve dramatically Northern Ireland's poor European "league table" position in relation to cancer services in the next few years.

110. The Committee welcomes the fact that the four Cancer Units have been operational since October 1999, providing specialist services for breast, lung and colorectal cancers, and that they are shortly to have MRI/CT services essential for diagnostic and staging support. Over fifty per cent of all day patient chemotherapy is now carried out in the Cancer Units, and there is broad consensus that the units have greatly improved cancer services by providing local chemotherapy treatment for patients who would otherwise have to travel to Belfast. There has been a 20% increase in the number of patients receiving chemotherapy treatment over the last four years, while radiotherapy treatments have risen by 14% in the past year to some 95,000 exposures. [lxxii]

111. In July 2001 the New Opportunities Fund awarded £6.4m lottery funding to boost palliative care services, including the purchase of an extra three MRI scanners at the Ulster, Antrim and Craigavon Area Hospitals and one spiral CAT scanner at the Ulster Hospital. Additionally, the Department has secured funding for two new linear accelerators at Belvoir Park Hospital, which will be operational by June 2003. While all this is clearly welcome news, it must be tempered with the prospect that it will take at least 12 months to install the new equipment. In the meantime, there will be no easement of pressures on waiting lists. Ultimately, though, the new equipment will improve the quality of service to patients by reducing the average waiting times for radiotherapy from 32 working days to 2-14 days for palliative radiotherapy and 14-24 days for radical therapy. [lxxiii]

112. The Committee was somewhat reassured by anecdotal evidence that patients are satisfied with the present structure, albeit that travel and distance was an issue for some. The chemotherapy areas in the units have been operational for two years and there has been a substantial increase in the amount of chemotherapy delivered locally in patients' homes. The new arrangements have served to address substantially the old problem of "post code prescribing" in Northern Ireland.

113. The position in relation to the Regional Cancer Centre, however, is one of increasing concern. The Committee was most concerned about the unacceptable delays in getting the new Centre off the ground - with estimated costs escalating at an alarming rate - given that the recommendation to develop the new centre of excellence was accepted as far back as April 1998. The First Report of the Regional Advisory Committee on Cancer anticipated that the new cancer facility would open in 2003, a date which is clearly not going to be met. The lack of movement on this issue is a critical issue that is impacting on patients' treatments and care, as well as affecting the morale of the hard-pressed health professionals. The Regional Cancer Centre is the key missing link to a fully integrated cancer service for all the people of Northern Ireland. The new Centre would be seen as a symbol of quality and provide central leadership and direction to the Cancer Units and hospitals dealing with cancer patients. [lxxiv]

114. It is now almost six years since the Campbell Report 1996 published its recommendations. The go-ahead must be given immediately for the Regional Cancer Centre, which will bring about a fully integrated, patient- centred cancer service for Northern Ireland and act as a magnet for expert staff and research funding.

115. The Committee notes that the Department of Finance and Personnel formally approved the Belfast City Hospital's preferred option in the outline Business Case on 10 December 2001. This has enabled the Department to engage with the Hospital Trust to conclude the Private Finance process before it finally moves to the issues of procurement and implementation. [lxxv] The Committee urges the Department to ensure that the level of priority given to the Centre is reflected in the urgency with which it explores the various funding options, including the Executive Programme Funds, and agrees on a preferred procurement option.

116. The Committee fully acknowledges the importance of getting the design and size of the Centre, together with its equipment, right from the outset as later changes to its specification would be expensive and could compromise the optimum configuration. It also strongly welcomes the fact that the views of cancer patients, including adolescents, have been sought on the building. However, the rapid increases in the estimated costs of the new Centre are a considerable cause of concern. The figure has risen from £32m in 1999 to the latest estimate of £57m. [lxxvi] And there is no guarantee that this will be the final cost, which underlines the need to move rapidly on this project.

117. The Committee would prefer capital sourcing from public funds for the project, because generally it can be provided at lower interest rates than are available for private finance, and it ensures that responsibility for provision of public services remains in the public sector. The Committee considered the recommendations made by the Committee for Finance and Personnel in its Inquiry into the use of Public Private Partnerships (PPP).⁷⁵ The Committee's Report concluded that PPP, including Private Finance Initiatives, could be a valuable tool and means of investment when it is used in the right circumstances. However, care needs to be taken in deciding how, where and when PPP should be used. Value for money has to be clearly demonstrated over the life of a project that might last 20 or more years. This will highlight the impact of long-term spending commitments on public finances.

118. The Finance Committee's Report made it clear that the public sector must acquire or develop substantial qualified and experienced in-house personnel to construct, specify, appraise and negotiate a value-for-money PFI project. Or else it will need to rely on external consultancy support. Experience to date in Northern Ireland has, to a large extent, been concentrated in the Education sector. A greater private sector financial stake and management role in service provision may also have an impact on clinical/service freedoms. These are some of the many issues that the Department faces in developing a viable PFI option for the Regional Cancer Centre. This work will take time to complete. [lxxvii]

119. The Committee notes that a final Business Case has been approved, which will allow the Department to compare the cost of the private sector undertaking the development against a public sector comparative cost. Whichever option is pursued, the necessary capital must be urgently secured given that a period of three years will be required to construct and equip the Centre once approval to proceed with the scheme has been granted.

120. The Committee also supports the Minister in her efforts to explore fully the potential to which Executive Programme Funds, particularly Infrastructure Funds, can assist in the capital resourcing of the new Centre. [lxxviii] The Committee believes that a very strong case can be made for such funding in respect of this flagship project that will provide all the people of Northern Ireland with a centre of excellence for years to come. The Committee understands that the Department is conducting a review of the Health Estates with a view to examining the scope for offsetting the proceeds from the sale of unused land and property against the capital costs of the Regional Cancer Centre. This review should take place as a matter of urgency.

The Minister should announce immediately a firm timetable for the completion of the Regional Cancer Centre that reflects the urgent need for a fully integrated cancer service.

121. The provision of adequate radiology services is the gateway to effective and prompt diagnosis and the correct staging of cancer. The Committee was alarmed to learn about the current provision of facilities at Belfast City Hospital (BCH). Inadequate investment and a lack of investment in modern cancer equipment has inevitably placed further pressure on bed occupancy and waiting lists. Expressing his deep concern, Prof Paddy Johnston stated:

"It is a ludicrous situation that the Cancer Centre (BCH) does not have adequate CT or MRI facilities. Consequently, in the intervening three-year period, while a Cancer Centre may be built, it will be virtually impossible for the BCH Trust to provide adequately the types of services needed for modern medical, radiation and surgical oncology treatment." [lxxix]

122. There is currently only one CAT scanner at the Belfast City Hospital, which cannot cope with the required throughput of investigations. Waiting times for urgent outpatient scanning can be up to seven weeks, while urgent inpatient scans can normally be completed in one week. [lxxx] In light of the above crisis, the Committee was therefore pleased to learn that funding has been granted for an additional CAT scanner at Belfast City Hospital, which will be operational by April 2002. [lxxxi] The situation at Belvoir Park Hospital is equally bleak, where the CAT scanner is nine years old and is among the slowest in Northern Ireland.

123. Without proper investment in modern imaging equipment it will prove impossible to deliver the state-of-the-art cancer services that the people of Northern Ireland have been promised. Since MRI is now regarded as an essential part of a modern cancer service in terms of providing diagnostic and staging support, the Committee viewed the fact that the Belfast City Hospital site has been operating up until now without an MRI scanner as a deplorable state of affairs.

124. The Committee therefore strongly welcomes the recent announcement by the Minister for Finance and Personnel of an allocation from the Service Modernisation Fund for the purchase of one replacement MRI scanner for the Royal Victoria Hospital and a first MRI scanner for Belfast City Hospital. [lxxxii] However, it notes that cancer patients will not receive an immediate benefit from the provision of the latter scanner, as it is not expected to be operational until January 2003. Nevertheless, the rectification of this glaring gap in modern equipment provision is a tremendous boost, however belated.

125. The Committee was alarmed to hear from the Campbell Commissioning Project of a haemorrhage of skills from the Regional Cancer Centre, which have been hard to replace. It is clear that an urgent decision needs to be made, as further delays will adversely impact patient survival rates and result in a loss of experienced staff to cancer centres of excellence in other countries.

126. Many witnesses emphasized the importance of the need for the Regional Cancer Centre, Units, hospitals and primary care sector to form an integrated clinical network of care if all patients are to receive the same high standards of care and treatment, regardless of where they live. Integrated pathways must be developed in the Centre and Units over the next 18 months in order to avoid the potential for duplication of investigations and ensure a seamless patient-centred cancer service. These should be in place by the time the new Cancer Day Hospital opens in late 2002. Each part of the cancer framework must be developed in parallel and not in isolation.

127. The lead cancer clinicians appointed in each Cancer Unit/Centre have a major role to play in the co-ordination and integration of cancer services and the development and monitoring of guidelines and protocols. [lxxxiii] They are pivotal to the implementation of change between and within the Regional Cancer and Units, and have a particular role in quality assurance, clinical governance and audit. [lxxxiv]

128. The Committee learned that some local hospitals feel "left out" of the new clinical network that has been developed since the Campbell Report 1996. The Committee agrees that there needs to be a re-focus on the whole concept of the managed clinical network so that all clinical staff involved with the cancer patient in their progress through the system feel part of the team and that interaction within the network is maximised. [lxxxv] The importance of the Regional Cancer Centre and Units engaging with the acute hospitals is underlined by the following two reasons. First, patients will sometimes attend these hospitals with conditions, which, although not indicating suspicion of cancer, turn out to be such. Second, as a result of the organisational changes of recent years, many consultants with training and experience in cancer services may be based in hospitals and not the Centre/Units. [lxxxvi]

129. An integrated cancer programme will depend heavily on co-ordinated information management (IM) systems that are compatible across the hospitals, the Regional Cancer Centre and Units. The Committee heard from both the Royal Victoria Hospital and Belfast City Hospital that significant improvements need to be made to communication systems across cancer services. Prof Paddy Johnston questioned why he could not conduct health delivery through a computer here in 2001, when he was able to do so in the United States in 1988. One innovative proposal is for a pneumatic tube system linking the Royal Group of Hospitals and the Belfast City Hospital, whereby samples will come down automatically from wards to laboratories for analysis. The results could be relayed to the wards by an IM system. [lxxxvii] (see recommendation relating to IM under Strategic Issues section)

130. It is important to bear in mind that the cancer pathway starts in the patient's home and must be built up in a way that is clear to patients, GPs, nurses, medical and radiation oncologists and surgeons. The growth in the number of cancer dedicated GP Facilitators through the Macmillan Cancer Relief initiative is a welcome signal that things are moving in the right direction. This progress needs to be further developed to ensure that GPs and their primary care colleagues are working in tandem with the Regional Cancer Centre and Units to achieve a patient-focused service. There needs to be improved communication between primary care and secondary care providers.

Integrated clinical pathways should be developed across the Regional Cancer Centre, Units, acute hospitals and primary care sector, using agreed referral protocols, guidelines and audit mechanisms, to ensure a seamless patient-centred service.

[See also recommendation relating to information management under Strategic Issues section]

131. One of the adverse consequences of the delay in the building of the Regional Cancer Centre is the continuing detrimental effect on services in Belvoir Park Hospital, where significantly increased activity is placing further pressures on old equipment. The Committee visited the hospital and saw at first-hand the ageing general x-ray facilities, and learnt of the increasing incidences of the screening equipment breakdowns, with resultant lengthened waiting times. Witnesses also quoted instances where patients attending Belvoir Park hospital for treatment have had to be turned away because machines that are being operated well beyond their maximum life expectancy had regularly broken down. The following quote from Dr Houston of the Campbell Commissioning Project in relation to the equipment at the hospital makes depressing reading:

"None of the linear accelerator equipment could be called new or even recent. Subject to the availability of spare parts, replacements and new seals for leaky bits, it may be possible to maintain that equipment indefinitely - like an old car. However, that would cause increasing harassment and inconvenience."

132. As the radiology equipment at the hospital becomes more obsolete, it is not surprising that services are increasingly disrupted by breakdowns, though the Committee pays tribute to the clinical staff working hard to minimise their effects. Both linear accelerators date from 1989 and the main components of the two general x-ray and screening rooms are at least 10 years old. Ideally, equipment should be replaced after seven years' service, particularly if used intensively, as is the case at Belvoir Park Hospital.

133. In light of the well-documented problems surrounding the delivery of cancer services at Belvoir Park Hospital, the announcement by Minister de Brún in December 2001 that an additional £550,000 was to be allocated immediately to fund repairs to the building infrastructure, and that funding had also been secured for two new linear accelerators that can migrate to the new Regional Cancer Centre - although these will not be operational by June 2003 - was welcome news. [lxxxviii] It is a clear imperative that the associated staff training costs in relation to the new machinery are met in order to underpin the viability of cancer services at the hospital. This progress, complemented by the replacement Treatment Planning Computer that will be operational in the next financial year, [lxxxix] should ultimately begin to relieve pressures on the hospital's treatment waiting lists. The Committee welcomes the commitment by Minister de Brún to take whatever steps are necessary to ensure that safe and effective cancer services are made available at the hospital.

134. The commitment to improving the infrastructure and providing new equipment is particularly important because, while the new Centre is expected to be well equipped and adequately staffed, sight must not be lost of the needs of patients in the interim, who are no less deserving of the same timely, high quality care and treatment envisaged under the new Centre. Indeed, proper consideration of their needs is all the more important in light of the ever- lengthening delay in getting the new build started. There should be no diminution of cancer services in the lead-up to the opening of the new Centre. The Committee fully endorses Action Cancer when they say:

"Patients diagnosed today need to have confidence in today's facilities. Patients attending Belvoir Park Hospital should be able to expect reasonable standards."

The Department should ensure that there are safe and effective cancer services at Belvoir Park Hospital pending the opening of the Regional Cancer Centre.

135. Given the understandable trauma for cancer patients and their families, it is important that the facilities at clinics and hospitals are conducive to their sensitive care and treatment. The Committee was therefore dismayed to read about some patients' concerns about lack of privacy and space in the Cancer Units, as well as inadequate toilet and refreshment facilities. Although patients praise Belvoir Park Hospital's atmosphere, it appears that the hospital's outpatient facilities are poor. For example, insufficient seating has resulted in some patients having to sit on radiators. The following quote from a member of a cancer support group would indicate there is scope for improving waiting areas:

"Outpatient facilities are very modern but the waiting areas are nothing more than corridors and seem to be poorly equipped with neither reading material nor refreshments."

136. While the Committee would support the principle of dedicated outpatient areas for cancer patients, it realises the space constraints under which hospitals operate. There is, however, no excuse for failing to provide basic seating arrangements for patients and their families. Every effort should be made to ensure that outpatient areas are comfortable, clean and private, with adequate refreshments and reading material, especially since most outpatients will be attending with a friend or relative who may have lengthy waits while the patient is undergoing treatment.

137. The Committee welcomes the fact that the design of the new Regional Cancer Centre provides for a number of suitably furnished rooms where patients can hold private conversations, which is a facility most often required. The provision of a similar facility to the Gerard Lynch Centre (Belvoir Park Hospital) adjacent to the new Centre, which will act as a drop-in centre for patients and their carers, including a library, hairdressing, aromatherapy and counselling services, will also benefit patients in a practical sense.

The Department should ensure that guidelines for cancer services specify best practices to be followed by HSS Trusts for outpatient facilities.

138. The Committee is concerned by the volume of evidence from patients regarding the inadequacy of car parking facilities at Belfast City Hospital. The car park in front of the Tower Block - for which there is a charge - is totally inadequate for the number of patients who attend regularly for outpatient appointments. Patients describe being forced to park up to a quarter of a mile away on the Lisburn and Donegall Roads and then walk back to the hospital. The Committee feels that this is totally unacceptable for patients who are suffering from the weakening effects of chemotherapy treatment. Given that the car-parking facilities are currently considered inadequate, the problem will increase when the Regional Cancer Centre opens.

139. The Committee understands that Belfast City Hospital is engaged in talks with a charitable organisation with a view to providing a multi-storey car park close to the Regional Cancer Centre, which would increase significantly the number of spaces and provide a more discrete set-down and pick-up facility. [xc]

The Department should ensure that there are satisfactory car park arrangements for the Regional Cancer Centre that meet the needs of patients, their families and carers.

140. While the new Regional Cancer Centre will potentially be a showcase for new services, evidence from some patients would indicate that attention should be given to the standard of ward accommodation at Belvoir Park Hospital. While we can look forward to the new Centre's being a showcase for cancer services, attention should be given to the existing standard of ward accommodation at the hospital. To this end, the Committee welcomes the announcement by the Department of an additional £550,000 for infrastructural improvements to the hospital, which is much needed.

141. The Committee recognises the vital role that primary care can play in the delivery of cancer services.

"Primary care has not traditionally been seen as central in the planning and provision of oncology services. This partially reflects the infrequency with which cancer is diagnosed by individual general practitioners and the dissociation between general practitioners and large parts of the care of patients with cancer." [xci]

"Levelling standards in primary care upwards could do more to reduce inequalities in cancer care than everything else." [xcii]

142. The Campbell Report 1996 recognized that primary care has a crucial role to play in the delivery of high-quality holistic cancer care. It is therefore a regrettable acknowledgement in the Campbell Commissioning Project's submission that, while there have since been welcome improvements in the development of the Cancer Units, there has not been the necessary focus on strengthening the primary care aspects of cancer services. This is all the more alarming when we consider that, as 90% of cancer patients spend most of their time at home, the primary care team will provide the majority of their needs.

143. GPs make a significant contribution to the delivery of cancer services, as they are normally the first point of contact for cancer patients and their families. They are involved in prevention, screening, early diagnosis/referral, follow-up, palliative care and cancer genetics services. Given that the pressures under which GPs operate are well documented, the Committee accepts the Campbell Commissioning Project's argument for GPs to have adequate time to see their patients. This obviously requires adequate resources for primary care. Indeed, the primary care team, as a whole, is a central plank in the cancer care network. Apart from GPs, the team will comprise a number of different professionals in cancer care, such as community Macmillan Nurses, specialists in speech and language therapy, dietetics and occupational therapy and social care. These play a pivotal role during the cancer patient's rehabilitation process.

144. In view of the primary care team's crucial role, the Committee warmly welcomes the recent major regional conference in Northern Ireland to address the relationship between cancer services and primary care, which will help inform the Department's strategy for primary care services. The key areas for discussion included prevention, symptom awareness, prompt referral and investigation, multi-disciplinary teamwork, interface with secondary care, and out-of-hours care.

145. Early diagnosis, which then leads to early treatment, is accepted as a major element in achieving positive outcomes in the care of cancer. As many cancers can be successfully treated if detected in time, public awareness and knowledge of early signs and symptoms are important. In this context, the GP, as the first point of contact in primary care, can play an absolutely pivotal role. It is therefore vital that the work being undertaken to support GPs through the development of symptom and referral guidance and training in cancer services continues, as complaints of delay in the referral of suspect cancer cases are one of the most common causes of complaint against family doctors. In the words of one patient:

"GPs are the gateway to hospital appointments. If they are not aware, our gateway is locked."

146. The importance of training for GPs in cancer diagnosis is underlined by the evidence from several submissions suggesting that many patients felt that GPs were unfamiliar with cancer symptoms. The Ulster Cancer Foundation submission reported that patients considered GPs needed training in all cancer issues. In one case, a patient reported having attended their GP regularly for symptoms for eighteen months before being referred for further investigations. It is therefore vital that GPs be kept fully up-to-date with all the latest developments, particularly in relation to treatments and the recognition of symptoms.

147. The BMA (NI) General Practitioners' Committee highlighted pressures on time and backlog of work as obstacles to improved cancer services and pointed to the need for more GPs and nurses as means of speeding up the process for referral and investigation.

148. There is an understandable difficulty for GPs in being able to readily diagnose cancer, given that, on average, they will see only eight or nine new cases of cancer a year and may only see patients with rare cancers once in their working lives. Another difficulty is that cancer symptoms may evolve over many years. While several hundred patients may attend their GP annually with potential cancer symptoms, the dilemma facing the GPs is that if they make too many hospital referrals, they run the risk of delaying the time taken to see a specialist for those who genuinely have early cancer symptoms. Yet if they do not refer, later detection of cancer may be criticised by patients/families and specialists. [xciii]

149. Nevertheless, while it is acknowledged that some cancer symptoms can be vague and hard to diagnose, there are genuine concerns about the overall level of "cancer awareness" among GPs. It is vital that primary care practitioners are kept fully updated with the recognition of symptoms. While providing GPs with the necessary protected time to attend training courses or read related journals comes at a cost, failure to make an initial cancer diagnosis and referral comes at an even greater cost, possibly resulting in loss of life. There was also recognition of the need for GPs and specialists to work collaboratively in the development of practical guidance for GPs in relation to cancer symptoms awareness.

150. To this end, the Committee commends the initiative by Macmillan Cancer Relief in providing a network of seven GP Facilitators across the four HSS Board areas. This grew out of a joint pilot between Macmillan Cancer Relief and the Royal College of General Practitioners 10 years ago and has worked well in Great Britain. They act as an advocate on behalf of all GPs in the area, highlighting concerns and working with colleagues in the hospital and community setting to resolve problems in the system and effect innovative improvements in the delivery of cancer services. The planned appointment of a lead GP Facilitator to work with the Macmillan Nurse in the Regional Cancer Centre will be a further advancement in identifying primary care issues, which in turn will feed into the strategic plan for cancer services. [xciv]

151. The Committee was also encouraged to learn that the Campbell Commissioning Project is trying to develop guidelines for the symptoms of each cancer as an aid to GPs in deciding whether to make urgent referrals. GPs with a specialist interest in, and knowledge of, cancer and palliative care will be given protected time in order to undertake initiatives with a designated number of GP practices with a view to improving knowledge and training on cancer and palliative care from a primary care perspective.

152. Following prompt identification by GPs of suspect symptoms is the need for effective referral guidelines. A major issue at present for GPs is their frustration with blockages in the referral system as a result of lengthy waiting lists for CAT or MRI scans. Also, the General Practitioners Committee of BMA (NI) reports that the increasing specialisation of cancer consultants can create difficulties for GPs and their patients in identifying the best pathway of referral. The Committee sees considerable merit in the argument made by some witnesses for a simple electronic referral system, complemented by a cancer registry of specialist services, listing the availability of multi-disciplinary cancer teams across the various sites in Northern Ireland, in order to minimise delays. There must also be a robust system for monitoring the implementation of referral guidelines.

153. Macmillan Cancer Relief claims that a culture change is also needed within primary care. It reports that some GPs will not allow access to their patients by specialist nurses. The Committee found this surprising given that the pressure under which community doctors work is well documented. It would seem logical that they should welcome support from primary care colleagues who have been trained to a highly specialised level. It is important, therefore, to develop fully the multi-disciplinary team approach in primary care to optimize benefits for both the patients and the cancer professionals.

154. In this respect the Committee admired the Northern Target initiative in the Northern HSS Board area. This involves GP practices closing down for one afternoon per month and the entire multi-disciplinary team meeting away from the workplace to discuss common issues such as education, communication and guidelines. It urges all primary care practitioners to deliver cancer care by focusing on the patient as opposed to inter-professional boundaries.

The Department should encourage cancer specialists to work collaboratively to develop effective guidelines that will help GPs and other primary care professionals to recognise the symptoms of cancer.

The multi-disciplinary team approach in primary care should be developed and good practices in cancer care disseminated across HSS Boards and Trusts.

A simple electronic referral system should be developed for GPs, complemented by a cancer registry of specialist services. There should be a robust system for monitoring the implementation of referral guidelines.

155. A survey of Causeway GPs in May 2000 revealed that communication between primary and secondary care sector left considerable room for improvement. The doctors felt that access, transport, information flow, information on what services were available and where, co-ordination of services provided to patients, accessibility of consultant staff to GPs and discharge/outpatient information given to GPs, had all deteriorated in the preceding year. This had occurred since partial implementation of the new model for cancer services. The survey also found that the workload for GPs and other primary care staff had increased since the implementation of changes arising from the Campbell Report 1996.

156. These views echo other witnesses' evidence that the "cancer journey" can be chaotic, with delays in referral from the GP to hospital, long waits for a consultation at the hospital, delays and confusion over tests and tests results, lost records, failure to transfer information to the GP, and insufficient information about side effects of drugs and treatment. This apparent lack of a seamless, patient-centred service is a matter of considerable concern to the Committee. It is hard to envisage how a patient-focused cancer service can be properly delivered in the absence of effective two-way communication channels between primary care professionals and their secondary care colleagues.

157. GPs have often found that communication from hospitals to primary care is very poor. Ideally, the GP should be contacted before the patient leaves hospital after cancer surgery, to be informed of diagnosis, prognosis and treatment given. In some instances, a cancer patient's details on discharge are sent electronically to the GP and support staff in advance of the patient arriving home. [xcv] However, the Committee was dismayed to learn that frequently the first details the GP receives are contained in the hand-written discharge letter that is given to them when they carry out a home visit. This makes it impossible for the GP to provide patients and carers advice about subsequent chemotherapy or radiotherapy and possible side effects when they have not been provided with any discharge information.

158. Discharge planning arrangements and the co-ordination of services are also crucial to ensuring the effective linkage between hospital and community care services for assessment, planning and delivery of domicillary care packages. Integrated and co-ordinated communication between the acute and community care sector is vital if effective care pathways are to be developed for the range of cancer treatments. The Social Services Inspectorate's submission suggests that communication links could be improved in this area so that information is available to provide an holistic needs assessment. In particular, attention needs to be given to more closely defining the roles and responsibilities of district nursing, specialist nursing and social workers in relation to the services provided through care management. [xcvi] The BMA (NI) GPs' Committee highlighted the value for the GP and community nurse of the leaflets produced by some Cancer Units on the side effects to expect from radiotherapy or chemotherapy.

159. The Committee agrees with the suggestion by Macmillan Cancer Relief that protected time should be set aside for meetings between the primary and secondary care sectors. It would greatly benefit primary care practitioners if a minimum set of information relating to each patient could be made available to them. They should be furnished with a management plan that details proposed treatments and follow-up arrangements. To this end, the Committee warmly welcomes the initiative taken by the Campbell Commissioning Group in the development of patient-held records in relation to their current oncology treatment profile and follow-up arrangements. This should help improve the speed of communication between hospitals and doctors, and the information will clearly help local clinical staff when they come into contact with these patients, as well as helping the patients know about the management of their treatment.

160. The Committee believes that surgical teams should communicate treatment decisions to the primary care team and the referring cancer unit team in an accurate and timely manner. This process should be open to scrutiny, by means of audit. It recognises that follow-up care for cancer patients should be individually determined and the primary care team fully informed. To this end, the Committee would see merit in the suggestion by the North and West Belfast Community Trust for the development of a co-ordinator group in order to develop services, care pathways, guidelines and communication between primary and secondary care providers.

161. Macmillan Cancer Relief claimed that the implementation process of the Campbell Report 1996 is not inclusive. On the Campbell Commissioning Project, there is input from only one GP, no representative from patients or voluntary sector and none from palliative care. The Committee is concerned about this apparent lack of inclusivity. This matter must be addressed in order to ensure that all important players are involved.

162. The Committee believes that there must be a change of culture between the primary and secondary sectors from one of competition to collaboration, with a view to promoting the needs of the cancer patient above all else.

The Department should ensure that the cancer patient-held record initiative is rolled out across Northern Ireland as soon as possible.

The Department should arrange for protected time to be set aside for meetings between the primary and secondary care sectors to examine ways of integrating and co-ordinating communication between the two.

Hospital Trusts should ensure that their surgical teams communicate decisions to the primary care team and referring cancer team in an accurate and timely manner.

163. Out-of-hours care is the single most important issue raised by GPs. The Committee was most concerned to learn that in many parts of Northern Ireland there is no cover at all after 5:00 pm, as people across the region are entitled to expect an equally high level of service. Given that 90% of all cancer patients are looked after in the community, there is a need for a fully integrated out-of-hours service. Better joint planning with social services and the voluntary sector is needed to help provide the 24-hour service. This is vitally important, particularly in relation to setting standards for local needs assessment, and will require additional resources.

164. Lessons can be learned from a model of excellence in the South and East Belfast Belfast HSS Trust area, where 24-hour nursing care and a rapid response team is provided. [xcvii] Another positive out-of-hours initiative is that proposed by the Northern and Southern HSS Boards for cancer patients, in which GP Facilitators will work with pharmacists in compiling up lists of drugs and equipment for palliative care patients, which will be accessible on a 24-hour basis. These, however, contrast with the limited provision in the Sperrin and Lakeland and Newry and Mourne HSS Trusts, which have only Monday to Friday, nine-to-five district nursing services.⁹⁷

165. The fact that the majority of cancer patients receiving palliative care prefer to die at home has obvious implications for the out-of-hours workload of general practitioners. And as the incidence of cancer increases, it is logical to expect that their workload will only increase. The Committee feels that the specialist and district nurses have a central role to play in the delivery of the cancer strategy in the primary care setting. (It notes that the North and West Belfast Community Trust currently provides 24-hour nursing.) Meaningful investment in the district nursing service would make a significant impact on cancer services provision in the primary care setting, and would be an important step towards achieving a more equitable service.

166. As the vast majority of cancer patients spend their time within their local community, with occasional visits to the hospital, it is important that primary care staff have out-of-hours access to drugs and equipment. Password access to the oncology clinical database for local consultant and palliative care staff would be invaluable in the out-of-hours setting.

The Department should ensure a fully integrated, equitable out-of-hours service for cancer patients throughout Northern Ireland.

167. One of the main reasons for the significant reorganisation of cancer care, in the wake of the Campbell Report 1996, was the variability in the quality and speed of investigation and treatment which patients received in different parts of Northern Ireland. This resulted in great variation in the success of treatment and subsequent outcomes. The rationale for the reorganisation of cancer services under the Regional Cancer Centre and Units was that all patients would have equitable access to a uniformly high standard of care regardless of where they lived. [xcviii] However, while there have been improvements in cancer patient care since the Campbell Report 1996, they have tended to be patchy and inconsistent in places.

168. It is generally acknowledged that the development of the Cancer Units has led to improvements in the chemotherapy field, which is to be welcomed. Patients can now receive chemotherapy treatment locally rather than having to travel, often long distances, to Belfast. The amount of chemotherapy delivered locally to patients' homes has increased substantially. Rural communities have benefited from improved access to quality treatment with the movement of high quality cancer services from Belfast to Antrim, Craigavon and Altnagelvin. [xcix] There is, however, an urgent need to improve radiology facilities and invest in CT and MRI scanners in order to ensure equitable access to accurate diagnosis and treatment for everybody. [c] The Committee heard from a number of witnesses that delays in patients' waiting times for diagnostic tests were often caused by a lack of equipment or equipment breaking down. The Committee therefore welcomes the recent decision to provide MRI scanners for each of the Cancer Units, together with an additional MRI scanner for the Belfast City Hospital and a replacement scanner for the Royal Victoria Hospital. [ci] Further investment in extra equipment for diagnosis and treatment, and the training of staff to make the best use of equipment, will play a vital part in helping to end the inequalities in access to cancer care.

169. However, there are clearly still inequalities in the provision of cancer services, which could be reduced primarily by levelling primary care standards upwards, particularly in relation to the provision of out-of-hours services and commitment to resources to palliative care. The Committee learnt of many excellent examples of innovative work in the field of palliative care, but there was no evidence of a consistent approach being adopted across the region. Indeed, with four HSS Boards separately developing services based on what currently exists, each trying to recruit specialist staff from a limited pool, [cii] a degree of variation in cancer services seems almost inevitable. The Committee finds this unacceptable. Eradication of inequalities in health provision, in particular cancer services, must lie at the heart of any future restructuring of the local Health Service administration. In the interim, the Department should actively encourage the HSS Boards and Trusts to work collaboratively to ensure as equitable a service as possible for cancer patients.

170. For example, the Southern HSS Board expects to fill a Palliative Care Children's Nurse post in the near future, but there is no indication that this will be replicated elsewhere. The South and East Belfast HSS Trust has 24-hour nursing care and a rapid response team, whereas the Sperrin Lakeland and Newry and Mourne HSS Trusts have only Monday to Friday nine-to-five district nursing services. [ciii] The Committee feels that such variations in cancer services are an inevitable consequence of a Health Service that is administered by four HSS Boards and 19 Trusts, each, to a degree, determining how services can best be provided in their own area based on funding and resources available locally.

171. Macmillan Cancer Relief reported that they had received anecdotal evidence on variations as to patients' access to cancer drugs. The Department acknowledged that, while the establishment of the Cancer Units has ended the lottery of postcode prescribing for those patients who reach their specialist teams, there are concerns that there may be cancer patients who are treated elsewhere. [civ] While the Committee accepts that there will inevitably have to be a degree of freedom among consultants to treat patients according to their clinical judgement, it strongly urges that urgent steps be taken to establish much more standardised arrangements for prescribing in order to ensure equity of care in the cancer system.

172. The establishment of cancer site-specific guidelines for breast, lung and colorectal cancer, which are currently being developed by the Department, will be an important development in addressing this issue, including the categories of patients eligible for particular chemotherapy treatments. The GPs' Committee of the BMA (NI) reported that while breast and haematological cancers are dealt with promptly, the same can not be said for colon and rectal cancers, which are subjected to outpatient delays and investigation delays of several months. Action Cancer reported on anecdotal evidence that some patients with male specific cancers are waiting much longer than those with female specific cancers for diagnosis and treatment.

173. The subject of reconstructive breast surgery was another area in which there were variations in service depending on where a patient lived. The service is only provided at Belfast City Hospital and the Ulster Hospital. The Chief Medical Officer acknowledged the problem when the Department gave oral evidence to the Committee:

"The problem is that we do not have enough people specialising in breast reconstruction, and therefore every woman who should be offered breast reconstruction is not being offered it."

174. Macmillan Cancer Relief referred to instances of patients from other areas who were told that reconstruction was not possible, only to advised some years after surgery, when they were receiving chemotherapy at Belvoir Park Hospital, that it was possible. It appears that for some patients their prospect of being offered breast reconstruction depended on how persistent they were in seeking further information and asking for a second opinion. The book 'Ribbons of Hope' evidenced how important breast surgery was to the recovery and quality of life of a number of women. The Committee feels that all women should be offered the choice of surgery.

175. The Committee believes that the issue of inequalities in the provision of services should first be addressed at a regional level, which comes back to the necessity for the development of a detailed cancer workforce plan to determine the requirements for the diverse range of specialist staff. The problem of recruitment of staff to a number of key posts in the Cancer Units, as highlighted by the Campbell Commissioning Group in May 2001, must be urgently addressed. Access to good quality cancer services should not be on a lottery basis dependent on where people live. The Committee is concerned by the fact that there is a problem in the attraction and retention of appropriately qualified staff for these smaller clinical units outside Belfast. For example, there are currently no haematologists in the Western HSS Board area, with the result that patients in that area have to travel to Belfast for treatment. [cv] The recent resignation of the radiologist at Antrim Hospital has also resulted in delayed diagnosis in that area. (See recommendation for Regional Workforce Plan )

176. The Committee supports the concept of increased specialisation in cancer care, which the Campbell Report 1996 recommended, and welcomes, for example, the fact that work has now begun on devising guidelines for gynaecological cancer to ensure that every woman with that cancer receives the best possible service. [cvi] It welcomes the commencement of specialisation in site-specific cancers, with the identification of lead clinicians in conditions such as breast, lung and rectal cancers as a positive development.

177. The Committee notes the Government's ultimate goal of offering all patients in England and Wales a maximum one month wait from an urgent referral for suspected cancer to the beginning of treatment by 2008, which equates with the best experience that patients can expect in Europe and the US. [cvii] The Committee acknowledges that this is an ambitious target that will require considerable investment in terms of staff, equipment and new working methods. However, it would strongly support an equally challenging target for Northern Ireland given the importance that clinicians and patients attach to rapid diagnosis and treatment for improved outcomes and to help relieve anxieties. (see recommendation for waiting times for treatment under Needs of Patients)

178. The Committee supports the recommendation by Macmillan Cancer Relief that the Clinical Standards Board for Scotland approach to the quality of cancer care, which has involved patients from the outset, deserves particular investigation as a model that has commanded respect from acute service and primary care clinicians, and the public. The Committee was pleased to learn that a network session is scheduled for the end of February 2002 between a cancer collaborative in England and key acute clinicians in Northern Ireland. The cancer collaboratives are designed to support the professionals working in primary and secondary sector care, with a view to re-engineering services to focus on the patient's needs from their first contact with the GP. [cviii]

In advance of any future restructuring of the local Health Service administration, the Department should actively encourage the HSS Boards and Trusts to work collaboratively to ensure as equitable a service as possible for cancer patients.

Shortages of key specialist staff in the Cancer Units and hospitals should be addressed as a matter of urgency to ensure equitable access to cancer care across Northern Ireland.

The Department should establish a regional advisory body of lead cancer clinicians and senior nurses to monitor and assess minimum clinical guidelines, standards and performance for the common cancers managed in the Cancer Units, and set targets for improvement.

The Department should develop as soon as possible a phased roll-out of cancer site-specific networks.

179. It is clear that effective progress towards an expansion of patient-centred cancer services for Northern Ireland must be supported by a realistic regional implementation plan, with clear leadership, targets, milestones and effective auditing mechanisms. The Committee therefore supports the view of Action Cancer that Northern Ireland needs a comprehensive strategy similar to the NHS Cancer Plan for England and Wales to tackle the disease. Such a plan would include prevention, screening, a reduction in waiting times for treatment, improvements in primary care, and staffing.

180. Northern Ireland can learn from many aspects of the NHS Cancer Plan, which can be directly applied here to avoid duplication. [cix] The recently published comprehensive report by the National Cancer Registry of Ireland, which provides key facts on all cancer cases, treatments and survival between 1994 and 1998, can also help inform the Regional Cancer Plan. [cx] In terms of leadership for the cancer plan, regard should be shown to the Scottish model where a lead clinician was appointed by the Health Minister to be directly responsible for ensuring that the views of patients were taken into account when developing services. [cxi]

181. The statutory sector must continue to work closely with the voluntary and community sectors in adopting a patient-focused, inclusive approach to cancer services. There has been an historical over-reliance on the voluntary sector, particularly in relation to the provision of information services and palliative care, and it is important that the Health Service ensures equal standards, regardless of whether the service is being provided by the statutory or voluntary sector. The fact that Macmillan Cancer Relief has been directly involved in the design of the Cancer Units and planned Regional Cancer Centre, as well as areas such as counselling, is important as it helps provide a specific focus on patients' needs. [cxii]

182. The Committee strongly recommends that in developing such a plan, lessons should be learnt from the approach adopted by the cancer collaborative networks in England, the aim of which is to focus on a patient-centred service by bringing together the professionals in primary and secondary care and in the highly specialised services.

The Department should draw up a comprehensive Regional Cancer Plan, in close consultation with the HSS Boards, Trusts and voluntary sector, and draw on the detail of the NHS Cancer Plan.

183. The Committee was concerned to learn from a number of witnesses that information systems are often poorly developed or incompatible, which impacts adversely on the outcomes for cancer patients. Prof Paddy Johnston made the point that a patient could go to two different hospitals and have the same test done because data cannot be transferred. That is inefficient and unacceptable. The importance of making effective use of technology was also highlighted in a recent article in the Royal Hospitals in-house magazine on the visit of the Committee to the hospital:

"Electronic transportation of data reduces the duplication of tests. Remote ordering of treatments via a central access system could be a reality if a province-wide compatible system was installed. This would enable connection of not only the Royal and City but also other hospitals and GP surgeries." [cxiii]

184. The Committee strongly supports the emphasis that several witnesses placed on the importance of having a co-ordinated IM system, supported by the necessary administrative staff to input the data, to link the Regional Cancer Centre, Cancer Units, hospitals and primary care to facilitate better care for patients. The necessary progress towards the rapid transfer of information about test results and plans for patients' management will depend greatly on further investment in IM systems.

185. The Committee therefore welcomes the £2.7m allocation to the Department from the New Directions Fund for the period 2001/04 in respect of electronic links for GP practices, modernisation of GPs' IM systems, and information sharing for cancer services. Extending the usage of IM systems will help to bring together various parts of the service to enhance the dissemination of information. [cxiv] The Committee welcomes the development of the Clinical Oncology Information Service, which is designed to ensure timely and accurate transfer of information within the Health and Personal Social Services. [cxv]

The Department should develop as a matter of urgency a co-ordinated information management solution for health services that addresses the needs of cancer services in Northern Ireland.

186. The Northern Ireland Cancer Registry has led to major advances over the last six or seven years in the collection, analysis and presentation of information on all patients diagnosed with cancer, which provides a benchmark from which to measure future improvement. Given that each year over 8500 persons are diagnosed and 3500 people die with cancer here, it is vital that we continue to have a system to monitor this important disease. For example, it is important to know which cancers are increasing and which are decreasing. The Cancer Registry has produced several reports on cancer incidence, deaths and survival, which have helped inform research, education and planning of services.

187. However, uncertainty about the legal basis for collection and use of this data presents considerable concern as it jeopardises the future of cancer registry. Guidance issued by the General Medical Council in 2000 highlighted concerns about the use of patient details without their explicit consent. It stated:

"The automatic transfer of personal information to a registry, whether by electronic or other means, before informing the patient that information will be passed on, is unacceptable save in the most exceptional circumstances."

188. This has left doctors wary about transferring identifiable data to the Cancer Registry. However, the recent passing of a Health and Social Care Bill in England and Wales, which included a Clause allowing the Secretary of State to designate exceptions to informed consent annually, has led the General Medical Council to relax its guidance to doctors on the matter.

189. Dr Anna Gavin, Director of the Northern Ireland Cancer Registry, sought the Committee's support in urging the Department to make cancer a notifiable disease, while pointing out the importance of assuring the public of the seriousness with which the Cancer Registry takes the issues of confidentiality and data security. She highlighted the concern that a requirement for informed consent would lead to incomplete, biased and unreliable data, which would be of limited use, if any.

190. The Committee supports Dr Gavin's argument that the benefits to the people of Northern Ireland of high quality cancer registration and research far outweigh any costs in term of the low risk of any harm arising from a breach of confidentiality. It also recognises that the Cancer Registry already applies the strictest policies and practices regarding the confidentiality of data. To this end, the Committee has already written to the Minister requesting that she consider making cancer a notifiable disease, or introduce legislation to extend the provisions of Clause 60 of the Health and Social Care Act 2001 to Northern Ireland.

The Department should ensure the future of cancer registration by making cancer a notifiable disease, or by introducing legislation to extend the provisions of Clause 60 of the Health and Social Care Act 2001 to Northern Ireland.

191. Cancer charities have expert mechanisms in capturing and reflecting the needs of patients and their families. Numerous witnesses reported in glowing terms of the proactive, vital role of the voluntary sector in supporting cancer patients and their families, as well as providing significant funding for lead cancer specialist posts, GP Facilitator posts and capital funding for building infrastructure. Palliative care was highlighted in particular as an area in which the voluntary sector had been particularly innovative and had pump-primed significantly.

192. The Campbell Commissioning Project has acknowledged the enormous contribution that the voluntary sector has made in assisting in the planning for cancer services. The Committee welcomes the creation of the Cancer Forum, which is designed to bring together the various cancer organisations and to identify how they can complement each other in a context of collaboration. For example, nine charities have agreed to work together under a New Opportunities Fund application for the development of a corporate and collective web site that will encompass the expertise and knowledge from their individual books and leaflets. It is important that cancer charities dovetail their services so that resources and outputs are maximised.

193. The Committee agrees with the Campbell Commissioning Project that there is considerable potential for the voluntary and statutory sectors to work closely together in the next few years in focusing on cancer services for children and adolescents, which is an area that is underdeveloped and where expertise is needed. The interface audit of the cancer services currently being provided by the voluntary and statutory sectors will be useful in addressing any overlaps in services and making recommendations for developments.

The Department should continue to encourage cancer charities to engage collaboratively, through the Cancer Forum, in the provision of services in order to optimize resources.

194. Prevention is better than cure. While there are many causes of cancer, smoking and poor diet are clearly major contributory factors that need to be tackled, as well as addressing health inequalities. As Northern Ireland has higher levels of deprivation, smoking and poor dietary lifestyles than many parts of Great Britain, there is a collective responsibility across the Executive to address these issues.

195. Smoking kills people. It causes 3,000 people to die prematurely in Northern Ireland each year, with annual inpatient care costs of £22m. It accounts for 30% of all cancers and 80% of lung cancers here. [cxvi] Given that smoking is the major preventable cause of premature death and ill health here, there is a clear responsibility for ensuring that people are made fully aware of the risks involved and developing a range of co-ordinated initiatives to reduce the uptaking of smoking and to help smokers quit. GPs and other primary care professionals are well placed to identify people who have lifestyle factors that place them at additional risk and provide them with targeted advice.

196. Taking action to combat smoking is widely recognised as the single most important measure in cancer prevention. There is strong evidence that stopping smoking, even well into middle age, avoids most of the subsequent risk of lung cancer. The Committee was therefore encouraged to learn of local initiatives such as the smoking prevention initiative "Smokebusters" in the Southern HSS Board, which targets primary schools. Such programmes are particularly important given the worrying evidence that smoking among young girls is on the increase. The current graphic television advertisements run by the Health Promotion Agency send out an important negative message on the dangers of smoking, which must be continually reinforced. The Committee welcomes the campaign by the Health Promotion Agency in 2000/01 aimed at children, which included a television advertisement, a website and a school magazine. [cxvii]

197. A significant reduction in preventable deaths from cancer will depend to an extent on primary care teams educating patients in avoiding known cancer risk factors. It is therefore appropriate for GPs and other primary care professionals, such as community pharmacists and nurses, to receive training and take the lead in providing smoking cessation services. The Committee welcomes the joint initiative, in January 2002, in the Mid Ulster area that set up specialist advice clinics in Magherafelt and Cookstown for a seven-week programme to help smokers give up the habit. Another recent initiative from January 2002 has been the provision of training one day per week for staff at the Royal Group of Hospitals on brief intervention treatment for smoking cessation.

198. Several witnesses argued convincingly for a ban on smoking in public places and on all tobacco advertisements and sponsorship. The Committee fully endorses the enforcement of these bans as practical and sensible measures in the fight against cancer. It is therefore much encouraged by the reference in the Executive's Programme for Government to legislation currently going through the House of Commons on the banning of tobacco advertising, which will extend to Northern Ireland.

199. The Department's strategy for reducing smoking must include meaningful targets, including a specific one for children. The intervention of health action zones, for example, will be vital in targeting those most at risk and working with the most deprived sections of the community to make a difference. Evidence clearly points to smoking as being a cause of health inequalities. The NHS Cancer Plan for England and Wales pointed to the fact that, in 1998, 15% of those in the professional socio-economic groups smoked compared to 36% in the unskilled manual group.

There should be a complete ban on smoking in public places in Northern Ireland.

The Health Promotion Agency should continue to roll out hard-hitting campaigns on the risks associated with smoking to all schools in Northern Ireland, with a particular focus on socially deprived areas.

The Department should oversee a co-ordinated regional strategy, involving the Health Promotion Agency, HSS Boards and Trusts, and the voluntary sector, in the provision of smoking cessation services.

200. After smoking, the next biggest contributor to cancer deaths is poor diet, which can account for up to one third of all cancer deaths. A healthy diet includes plenty of fruit and vegetables and is low in fat, salt and sugar. People who do not have a regular intake of fruit and vegetables run a greater risk of several common cancers, such as colorectal and stomach cancers. Conversely, evidence shows that people who eat at least five portions of fruit or vegetables a day are much better protected against cancer. [cxviii]

201. There is clear merit, therefore, in focusing a message in encouraging people to eat more fruit and vegetables, as the specific benefits in preventing cancer are not widely known. And this needs to be particularly targeted at low-income groups, who eat substantially less fruit and vegetable than those do in the highest income groups. Children, especially those growing up in disadvantaged families, need to be targeted as their consumption of fruit and vegetables is particularly low. Those in socially deprived families are 50% less likely to eat fruit and vegetables than their counterparts in well-off families.¹¹⁸ Influencing the diets of young children is very important as this can bring long-term health benefits.

202. The Committee strongly advocates the adoption in Northern Ireland of the "five-a-day programme" in England, which is designed to increase access to fruit and vegetables, particularly in deprived areas and schools. Another excellent initiative is the National Fruit Scheme piloted in health action zones in England in 2001, which will provide a piece of fruit for children aged four to six each school day. The Committee welcomes the commitment by the Department of Education to introduce compulsory minimum Nutritional Standards for school lunches as soon as possible. Other encouraging initiatives include the setting up of School Nutrition Action Groups, fruit tuck shops and the Health Promoting School Award. [cxix]

203. The Ulster Cancer Foundation made the point that, as much of the finances from recent New Opportunities Fund initiatives were dedicated towards buying replacement and new equipment, this left less money for cancer prevention - a clear signal that it is an even lower priority.

204. It is vital then that the Assembly, Executive and Department recognise the importance of providing adequate funding for health promotion services for cancer and increasing its profile. The establishment of the Ministerial Group on Public Health, chaired by the Health Minister, provides an important forum for developing an effective strategy for cancer services. The Committee acknowledges the positive work of the Health Promotion Agency and local health action zones in helping to reduce health inequalities and promote healthy living, and it urges the integration of long-term cancer prevention strategies into all aspects of life in Northern Ireland. Messages on smoking, dietary control, care in the sun, and physical activity must no longer be seen as Cinderella issues.

The Department should work with other government departments, health agencies and food producers to develop a programme that increases provision and access to fruit and vegetables, particularly in schools and socially disadvantaged areas.

205. The cancer research teams at the Queen's University of Belfast, the University of Ulster and Belfast City Hospital are renowned in the British Isles as being in the vanguard for innovation, as evidenced by the fact that they have attracted £7.5m in grant income over the last three years. The Committee was delighted to learn that cancer research at Queen's has achieved a very high score in the latest University Research Assessment Exercise, which places the university's cancer research programme at the top of national and international research effort. [cxx]

206. Northern Ireland is fortunate to have two cancer research leaders with international reputations leading excellent teams at the Belfast City and Royal Victoria Hospitals. The Tripartite Agreement signed in October 1999 between the Departments of Health in Northern Ireland and the Republic of Ireland and the National Cancer Institute of the United States to improve clinical cancer services and to foster collaboration in cancer research and development was therefore a most welcome initiative. An All-Ireland Cancer Statistics Report in May 2001 provides valuable information for researchers in cancer prevention, treatment and care. International collaboration on cancer issues will help to ensure that the Regional Cancer Centre and Units achieve the highest possible standards and patient outcomes.

207. The Committee accepts the argument that excellence in cancer research and service provision are inextricably linked. Top class research programmes will mean that local professionals will receive a high standard of training, which will make it easier both to retain them and attract cancer specialists worldwide. A rapidly evolving area is cancer genetics, where more research is urgently needed. Advances in this field could assist in the early detection and diagnosis of cancer and in the selection of the most appropriate treatments. [cxxi]

The Department should consider how cancer research can be strengthened as part of the development of a Regional Cancer Plan and Regional Workforce Plan.

Calman KC, et al, Expert Advisory Group on Cancer, A Policy Framework for commissioning cancer services: a report to the Chief Medical Officers of England, Department of Health and the Welsh Office, 1995

Campbell Report, Cancer Services: Investing for the Future, Department of Health and Social Services, May 1996

Cancer in Ireland, 1994-1998: Incidence, Mortality, Treatment and Survival, National Cancer Registry of Ireland, 2002

Catering for Healthier Lifestyles: Compulsory Nutritional Standards for School Meals, Department of Education, 2001

Coleman, MP et al 1999 Cancer Survival trends in England and Wales, Office for National Statistics

First Report of the Regional Advisory Committee on Cancer, Department of Health and Social Services, 1999

Fitzpatrick, DA and Gavin AT, Survival of Cancer Patients in Northern Ireland 1993-1996, N. Ireland Cancer Registry, Belfast, 2001

Gavin, AT and Reid, J. Cancer Incidence in Northern Ireland 1993-1995, Belfast: The Stationery Office, 1998

National Health Service. Improving Cancer Services in the Community: The Cancer Plan, Sept 2000

Report on the Inquiry in to the use of Public Private Partnerships, Committee for Finance and Personnel, NI Assembly Session 2000/01

Second Report of the Regional Advisory Committee on Cancer, Department of Health, Social Services and Public Safety, 2002

Summerton, N, General Practitioners and Cancer, British Medical Journal, 320, April 2000

Walsh, PM et al. (2001), All-Ireland cancer statistics 1994-1996: a joint report on incidence and mortality for the island of Ireland, National Cancer Registry (Ireland), Cork and N. Ireland Cancer Registry, Belfast, 2001

Present: Dr J Hendron (Chairman)
Mrs P Armitage
Mr P Berry
Rev R Coulter
Mrs A Courtney
Mr T Gallagher (Deputy Chairman)
Mr J Kelly
Ms M McWilliams
Ms S Ramsey
Mrs I Robinson

In Attendance: Mr P Hughes (Committee Clerk)
Mr D Harkin (Assistant Clerk)
Mrs K McFerran (Executive Support)

1. Consideration of Draft Report on the Delivery of Cancer Services in Northern Ireland

Agreed:The Clerk will prepare a second draft, incorporating a number of issues raised by members, for consideration at a special meeting to be scheduled next week (dependent on Assembly Business) in relation to the Report.

Ms McWilliams and Rev R Coulter joined the meeting at 11:02 am and 11:50 am respectively.

Mrs Robinson, Ms Ramsey and Mr Kelly left the meeting at 11:28 am, 11:40 am and 12:05 pm respectively.

Present:Mr T Gallagher (Deputy Chairman)
Mrs P Armitage
Mr P Berry
Mr J Kelly
Mr A McFarland
Ms S Ramsey

In Attendance: Mr P Hughes (Committee Clerk)
Mr D Harkin (Assistant Clerk)
Mrs K McFerran (Executive Support)
Mr B Greene (Administrative Support)

1. Consideration of Draft Report on the Delivery of Cancer Services in Northern Ireland

Agreed: The Committee will conclude its consideration of the first draft Report at tomorrow's meeting. The Clerk will prepare a final draft, incorporating a number of issues raised by members, which will be tabled for consideration at next week's meeting.

Present: Mr T Gallagher (Deputy Chairman)
Mr P Berry
Rev R Coulter
Ms M McWilliams
Mr A McFarland
Ms S Ramsey

Apologies: Dr J Hendron (Chairman)
Mrs P Armitage
Mrs A Courtney
Mrs I Robinson

In Attendance: Mr P Hughes (Committee Clerk)
Mr D Harkin (Assistant Clerk)
Mrs K McFerran (Executive Support)
Mr B Greene (Administrative Support)

Agreed: The Clerk will prepare a final draft Report for consideration at next week's meeting, incorporating a number of issues raised by members.

Present: Dr J Hendron (Chairman)
Ms P Armitage
Mr P Berry
Rev R Coulter
Mr T Gallagher (Deputy Chairman)
Mr J Kelly
Mr A McFarland
Ms M McWilliams
Ms S Ramsey

In Attendance: Mr P Hughes (Committee Clerk)
Mr D Harkin (Assistant Clerk)
Mrs K McFerran (Executive Support)
Mr B Greene (Administrative Support)

Draft Report (Inquiry into the Delivery of Cancer Services in Northern Ireland), proposed by the Chairman, brought up and read.

[i] Coleman, M .P. et al. (1999), Cancer Survival trends in England and Wales, Chapter 1,

[ii] Gavin, A. T. and Reid, J., Cancer Incidence in Northern Ireland 1993 - 1995, N. Ireland Cancer Registry, Belfast.

[iii] Walsh, P. M. et al. (2001), All-Ireland Cancer Statistics 1994-1996. National Cancer Registry (Ireland), Cork and N. Ireland Cancer Registry, Belfast.

[iv] Fitzpatrick DA and Gavin AT. Survival of Cancer Patients in Northern Ireland 1993-1996. N. Ireland Cancer Registry, Belfast (2001)

[v] Cancer Services - Investing for the future, Report of the Cancer Working Group, DHSS May 1996

[vi] Second Report of the Regional Advisory Committee on Cancer Services, January 2002

[vii] Dr. Henrietta Campbell, Chief Medical Officer, DHSS, N. Ireland (Proceedings of a one day conference 15t^hMay 1997, Cancer Services, Investing for the Future.)

[viii] Baker, Robert, The Independent, 28 November 2001

[ix] Written submission from the Campbell Commissioning Project

[x] Written submission from The Queen's University of Belfast

[xi] Letter to Committee from DHSSPS, 04 February 2002

[xii] Written submission from Belfast City Hospital HSS Trust

[xiii] Oral evidence, HSSPS Minister and Senior Officials, 12 December 2001

[xiv] DHSSPS press release, 4 December 2001

[xv] Written submission from the Southern HSS Council

[xvi] Oral evidence, Campbell Commissioning Project, 19 September 2001

[xvii] Letter to Committee from DHSSPS, 04 February 2002

[xviii] Letter to Committee Chairman from the DHSSPS Permanent Secretary, 08 October 2001

[xix] Programme for Government, December 2001

[xx] Oral evidence, HSSPS Minister and Senior Officials, 12 December 2001

[xxi] Press release by New Opportunities Fund, 3 July 2001

[xxii] Written submission from Macmillan Cancer Relief

[xxiii] Fitzpatrick DA and Gavin AT. Survival of Cancer Patients in Northern Ireland 1993-96. N. Ireland Cancer Registry, Belfast (2001)

[xxiv] Article in Belfast Telegraph, 12 November 2001

[xxv] Oral evidence, Belfast City Hospital, 28 November 2001

[xxvi] Fitzpatrick DA and Gavin AT. Survival of Cancer Patients in Northern Ireland 1993-1996. N. Ireland Cancer Registry, (Belfast (2001)

[xxvii] Social Trends 31 (2001)

[xxviii] DHSSPS press statement, 21 November 2001

[xxix] Oral evidence, Chief Medical Officer, 12 December 2001

[xxx] Oral evidence, HSSPS Minister and Senior Officials, 12 December 2001

[xxxi] Letter from Chief Executive of Action Cancer to HSSPS Committee Chairman, 22 October 2001

[xxxii] Oral evidence, Action Cancer, 3 October 2001

[xxxiii] NHS Centre for Reviews and Dissemination, CRD Report 13

[xxxiv] Irish News article, 14 November 2001

[xxxv] Belfast Telegraph article, 24 January 2002

[xxxvi] NHS Cancer Plan 2000

[xxxvii] Oral evidence, Action Cancer, 3 October 2001

[xxxviii] Oral evidence, Ulster Cancer Foundation, 7 November 2001

[xxxix] Ministerial response to AQW 144/01, NI Assembly Official Report, 01 February 2002

[xl] Statement to NI Assembly by the Minister for Finance and Personnel, Mr Mark Durkan, on Executive Programme Funds: Second Round Allocation, 3 December 2001

[xli] Written submission from the Eastern HSS Council

[xlii] The NHS Cancer Plan 2000

[xliii] Oral evidence, Belfast City Hospital, 28 November 2001

[xliv] The NHS Cancer Plan 2000

[xlv] Article in the Guardian, 28 January 2002 (www.chi.nhs.uk)

[xlvi] Written submission from Armagh and Dungannon HSS Trust

[xlvii] Written submission from Care for Cancer

[xlviii] Oral evidence, Ulster Cancer Foundation, 7 November 2001

[xlix] Oral evidence, Belfast City Hospital, 28 November 2001

[l] Written submission from Macmillan Cancer Relief

[li] Memo from South and East Belfast HSS Trust, 02 January 2002

[lii] Oral evidence, Royal Victoria Hospital, 5 December 2001

[liii] NHS Cancer Plan 2000

[liv] Letter from Director of Public Health, Southern HSS Board, 08 January 2002

[lv] Written submission from the Southern HSS Board

[lvi] Letter from the Chief Inspector of the Social Services Inspectorate, 1 November 2001

[lvii] Letter from DHSSPS to the Committee, 04 February 2002

[lviii] Oral evidence, Macmillan Cancer Relief, 14 November 2001

[lix] Written submission from The Queen's University of Belfast

[lx] Oral evidence, HSSPS Minister and Senior Officials, 12 December 2001

[lxi] Written submission from the Belfast City Hospital HSS Trust

[lxii] Departmental update on staffing levels, 29 January 2002

[lxiii] Written submission from the Campbell Commissioning Project

[lxiv] Oral evidence, HSS&PS Department, 12 December 2001

[lxv] Oral evidence, DHSSPS, 12 December 2001

[lxvi] Written submission from the South and East Belfast HSS Trust

[lxvii] Letter from the Chief Inspector of the Social Services Inspectorate to the Committee, 1 November 2001

[lxviii] Written submission from the Campbell Commissioning Project

[lxix] Written submission from the Southern HSS Council

[lxx] Oral evidence, the HSSPS Minister and Senior Officials, 12 December 2001

[lxxi] Written submission, Macmillan Cancer Relief

[lxxii] Oral evidence, DHSSPS, 12 December 2001

[lxxiii] Press statement by HSSPS Minister, 12 December 2001

[lxxiv] Oral evidence, Belfast City Hospital, 28 November 2001

[lxxv] Letter from Department to Committee Clerk, 20 February 2002

[lxxvi] Oral evidence from the Campbell Commissioning Project, 19 September 2001

[lxxvii] Report on the Inquiry into the use of Public Private Partnerships, Committee for Finance and Personnel, Session 2000/2001

[lxxviii] Letter from HSSPS Minister de Brún to the Committee Chairman, 20 November 2001

[lxxix] Written submission from The Queen's University of Belfast

[lxxx] Written submission from Belfast City Hospital HSS Trust

[lxxxi] Departmental update to Committee Clerk on MRI/CAT scanners for BCH, 12 December 2001

[lxxxii] Statement to NI Assembly by Mr Mark Durkan on Executive Programme Funds:Second Round Allocation on 3 December 2001

[lxxxiii] Regional Advisory Committee on Cancer, First Report 1999

[lxxxiv] Second Report of the Regional Advisory Committee on Cancer, 2002

[lxxxv] Written submission from Sperrin Lakeland HSS Trust

[lxxxvi] Written submission from the Campbell Commissioning Project

[lxxxvii] Oral evidence, Belfast City Hospital, 28 November 2001

[lxxxviii] Oral evidence, HSSPS Minister and Senior Officials, 12 December 2001

[lxxxix] Departmental paper prepared for the HSSPS Committee on Cancer Services in Northern Ireland

[xc] Oral evidence, Belfast City Hospital, 28 November 2001

[xci] Summerton, N. General Practitioners and cancer. British Medical Journal, 320: April 2000

[xcii] Oral evidence, Campbell Commissioning Project, 19 September 2001

[xciii] Written submission from the Campbell Commissioning Project

[xciv] Oral evidence, Macmillan Cancer Relief, 14 November 2001

[xcv] Oral evidence, Belfast City Hospital, 28 November 2001

[xcvi] Letter from the Chief Inspector of the Social Services Inspectorate to the Committee, 1 November 2001

[xcvii] Oral evidence, Macmillan Cancer Relief, 14 November 2001

[xcviii] Regional Advisory Committee on Cancer, First Report 1999

[xcix] Oral evidence, Campbell Commissioning Project, 19 September 2001

[c] Oral evidence, Belfast City Hospital, 28 November 2001

[ci] Oral evidence, DHSSPS, 12 December 2001

[cii] Written submission, Eastern HSS Council

[ciii] Oral evidence, Macmillan Cancer Relief, 14 November 2001

[civ] Oral evidence, DHSS&PS, 12 December 2001

[cv] Oral evidence, BMA (NI) General Practitioners' Committee, 21 November 2001

[cvi] Oral evidence, DHSSPS, 12 December 2001

[cvii] NHS Cancer Plan 2000

[cviii] Oral evidence, Macmillan Cancer Relief, 14 November 2001

[cix] Oral evidence, Action Cancer, 3 October 2001

[cx] Cancer in Ireland, 1994-1998: Incidence, Mortality, Treatment and Survival, National Cancer Registry of Ireland, 2002

[cxi] Oral evidence, Macmillan Cancer Relief, 14 November 2001

[cxii] Oral evidence, Campbell Commissioning Project, 19 September 2001

[cxiii] 'Stiches', News from the Royal Group of Hospitals, January 2002

[cxiv] Draft Budget 2002/03, Northern Ireland Executive, September 2001

[cxv] Second Report of the Regional Advisory Committee on Cancer, 2002

[cxvi] The health of the public in Northern Ireland, Report of the Chief Medical Officer 2000

[cxvii] Second Report of the Regional Advisory Committee on Cancer, 2002

[cxviii] NHS Cancer Plan 2000

[cxix] Catering for Healthier Lifestyles: Compulsory Nutritional Standards for School Meals, 2001

[cxx] Letter to Committee Chairman from Prof Paddy Johnston, 24 January 2002

[cxxi] NHS Cancer Plan 2000