Witnesses: Dr B Dunn ) British Medical Association
Dr B Patterson ) General Practitioners'
Dr J Watters ) Committee

451

The Chairperson: I would like to welcome Dr Brian Patterson, chairperson of the British Medical Association General Practitioners' Committee, Dr Brian Dunn and Dr Janet Watters. Perhaps you could begin, Dr Patterson, and your colleagues can contribute. Committee members will then ask some questions.

452

Dr Patterson: We welcome the opportunity to discuss cancer services. We would like to look at some aspects of cancer care that are outlined in our submission. It is understandable that the focus on cancer services is centred on hospitals. Cancer services impact on the workload of primary care facilities and on their associated services.

453

Prevention is better than cure, and screening and prevention have suffered because they have not been given prominence in the Health Service in Northern Ireland, probably due to financial pressures on the National Health Service (NHS). Our struggle to treat people is so great that we do not have any meaningful resources left to focus on proper and thorough screening and on giving people the appropriate information on prevention. Much successful work has been done in primary care on cervical cytology screening for cancer. However, more work must be done, a point I will return to. More health education is needed, and evidence shows that that is done successfully if the public is given the time to discuss issues with primary care professionals, such as doctors, nurses and those from the professions that are allied to medicine.

454

Men's health will probably be addressed only through primary care, because few men are keen to engage in screening procedures; they attend their primary care facility infrequently. There are quite a few men in this room, and I wonder how many of them have gone for screening to their GPs or anywhere in the Health Service in the past four or five years. We can all ask ourselves questions. If we had the resources to engage young professional men, we might have some impact on the incidence and the outcomes of cancer in Northern Ireland.

455

The prevention process needs to be resourced. I am not necessarily talking about cash resources - I am talking about time. Time is a major problem for everyone involved in general practice, not just GPs. All our staff are saturated, largely because of underinvestment - you have heard me address that issue in the past. It is easy to say that we need training, but that is difficult because it is time consuming and takes resources to be done properly. The lack of trained practice nurses has caused a major deficit in primary care. More nurses are needed. Nurses have had a major impact on the things that we now do very well, such as asthma management and diabetic care. The potential for cancer screening for men and women, and in all aspects of cancer, lies with practice nurses. The problems caused by being overweight, the wrong diet, poor exercise and smoking are all well known in Northern Ireland, and outcomes would be affected if those issues were tackled. Northern Ireland is bad on outcomes.

456

I would like to address the issue of access to services for patients whom we suspect have cancer, or whom we know to have cancer. Delay at any stage is again associated with poor outcomes. It is unfortunate that the Health Service in Northern Ireland is now synonymous with delay - there are waiting lists everywhere, and that must be attacked. There is delay when we are sure, decide or suspect that someone has a cancer problem.

457

A frequent difficulty in primary care is the establishment of the exact diagnosis. We often have a fair idea that the diagnosis will be some form of malignancy.

458

The first difficulty concerns the length of time between the referral and the date that the patient is seen by a consultant. That first appointment starts the process. The expectation of the Campbell report is that that should happen within two weeks in most cancer situations. However, that is not the case. In some areas - breast cancer, for instance - the two-week guideline is being met, but it is equally important that it is met in cases of lung cancer, prostate cancer and, particularly, bowel cancer. The earlier that the consultant's opinion is given the better. There is an aspiration and an expectation that people can be seen by a consultant in two weeks and there is serious disappointment when that does not happen.

459

Once the patient has seen the consultant, another problem can arise if the consultant is unable to access the appropriate investigations. There can be a delay for a simple investigation such as an ultrasound. Difficult as it may be to believe, the wait for an ultrasound can be fairly long. There are also long delays for endoscopies, which cancer patients often require - especially patients with bowel conditions - and there is even a long wait to see the appropriate consultant.

460

Everyone is aware of the delays in CT scanning and MRI scanning; those delays are a huge problem in the Province and may last for months. They have a significant effect on the ability to treat the cancer, and on the physical and mental well-being of the patient. I am sure that all Committee members have had constituents complaining about waiting for a long time for further investigations before the cancer treatment even starts.

461

When treatment starts there are still access problems due to shortages of beds, theatre time, skilled staff and intensive care beds. Although those are secondary care issues, they have a major impact on GPs working in the community. Those times must be cut as far as possible.

462

Patients also have to wait for chemotherapy and radiotherapy treatment. Even when people attend clinics for radiotherapy or chemotherapy they face unexpected setbacks, such as the unavailability of drugs. In some cases those patients have travelled from the west of the Province to a central point, they cannot receive their treatment, so they have to go home and return at a later date. Some radiotherapy equipment in the Province is old and frequently breaks down. When that happens the patient's journey for treatment has been a fruitless exercise.

463

Dr Watters: There are two issues in our submission that I want to amplify on. The Campbell report recommended that the management of patients with cancer should be undertaken by appropriately trained organ and disease-specific medical specialists.

464

The definition of a cancer specialist in oncology and radiotherapy is fairly straightforward, but for other disciplines - particularly those who provide surgical treatment, which can be general surgery, specialised surgery, gynaecology - the definition is less clear. The treatment outcomes for cancer patients are best when the patient is treated by a specialist who frequently performs similar operations.

465

Belfast City Hospital recently replaced a breast cancer specialist who was due to retire with a surgeon whose main clinical training was in a different surgical speciality and who had one year's experience in breast surgery. GPs were very concerned about that appointment. It did not meet their definition of a specialist and they were concerned about what would happen to patient management. However, that surgeon has been replaced with a more appropriately trained and qualified surgeon. Therefore GPs' concerns are at rest in that respect, but it has raised questions over the definition of a specialist and who should appoint him or her.

466

In this case Belfast City Hospital was acting independently as a trust, without being fully aware of patients' needs. We recommend that surgical services should be delivered by specialists with appropriate higher clinical training in the specific treatment of cancer. We also recommend that regionalised planning of consultant appointments should be undertaken to ensure that the needs of patients are met.

467

The Campbell working group recommended that trained cancer specialists should be appointed to cancer units or to the cancer centre. In order to meet the needs of patients who require treatment, cancer services should be provided as a managed clinical network that covers all Northern Ireland. We must think beyond the boundaries of individual health and social services trusts and start to plan the provision of cancer services for Northern Ireland.

468

The Campbell report recommends a total of 13 oncologists, but little progress has been made to reach that target. There may be a need for even more chemotherapy treatment so it may be necessary to appoint more than 13 oncologists in the future.

469

The Campbell report also recommends the setting up of a directory of appropriately trained cancer specialists to assist GPs in the referral of patients. If services are centralised, it is likely that GPs will refer outside of their immediate area.

470

Effective treatment requires that patients and their GPs should know the diagnosis, set up a treatment plan and a follow-up plan for each clinical case. Ideally, a patient should receive a full explanation on each report, but often the first communication of a cancer diagnosis can render the patient deaf to follow-up plans. Written information, combined with contact advice, would therefore be useful.

471

Often the first contact that a GP has with a patient after the initial diagnosis and referral is a phone call from the patient requesting a house call after being discharged from hospital. The first written information a GP receives is a handwritten discharge letter. That makes it difficult to provide the best clinical care, because the GP is not informed about the patient's treatment and management plan, and often those handwritten letters do not give full details of a management plan. They may say, "Prescribe Tamoxifen, referred for radiotherapy", but they do not state the number of treatments, when the treatment is likely to begin or any follow-up plan. Patients and GPs need to receive more information in order to provide the best treatment.

472

Oncologists have tried to improve communication. They have developed protocols for the management of patients receiving chemotherapy, and there are plans for a patient-held record and a pro-forma discharge letter for each episode of chemotherapy.

473

That is helpful, but it does not cover the surgical specialities and in this area we have a problem with information flow. To deal with that we need a managed clinical network. Many cancer treatments are relatively standardised. It should be possible to produce treatment protocols appropriate for the patient and the GP so that that information can be exchanged easily.

474

Electronic communication could be improved but funding is needed so that networks can interface and for staffing levels to process the information and to ensure that it reaches the right person. Patient-held records are welcome and are an improvement in the exchange of information not only between specialists but also for the patient so that he or she has ownership of that information. The only difficulty in operating that system lies with those few patients who really do not want to know their diagnosis.

475

Dr Dunn: As GPs, we regard ourselves as the patient's advocate, and much of what I will say is anecdotal. Hospitals and the ambulance service are probably not aware of many of the problems. However, it is not my intention to be critical of them.

476

My first point concerns the workload in the community brought about by discharge. Most people who have had radiotherapy or chemotherapy have minor side effects, such as mouth thrush, skin irritation, diarrhoea and urinary frequency, which takes time for the GP and the community nurse to deal with. It is difficult to know which side effects to expect and which ones to worry about. Some, but not all, cancer units produce a useful leaflet which states what side effects are to be expected and advising immediate readmission should any occur. That is very useful for the GP and the community nurse.

477

Another problem is the inability to have patients readmitted when complications occur. One night I was on call at the out-of-hours service, and I took a call from a sensible woman whose mother was undergoing chemotherapy at a cancer unit. The mother's temperature was over 40°C, she was sweating and shaking, was terribly unwell and obviously needed immediate readmission. The woman had contacted the cancer unit and had been told to contact her GP. A situation like that should never occur. Seriously ill people should be admitted straight away.

478

Today we received a letter from Antrim Area Hospital giving instructions on how to have people admitted immediately. However, it does require the involvement of the GP. It would be much better if patients had a direct telephone line for the ward and could speak to the doctor or nurse and organise it themselves. I see no point in having an extra layer; that is only an impediment to the patient.

479

Not every area has a hospital so some people in peripheral areas have to travel for treatment. It calls into question the suitability of ambulances for this. Larne is not that far from Belfast, but people have to get on a minibus in Larne, which then calls to Whitehead, Islandmagee, Carrickfergus, Greenisland and eventually to Belfast. There are the same number of stops on the way home. That is tiring enough for a healthy person, but if you are unwell and have just had chemotherapy or radiotherapy, it can be distressing. We have heard stories of people wanting to be sick. I was told about a woman who took a plastic bag with her on the journey because her husband continuously wanted to be sick. Another person wanted to go to the toilet, but the driver said that they could not stop because they were late.

480

This is not a medical issue; it is a humanitarian issue. It is to do with treating people in a caring manner. We cannot lose sight of such issues when we are talking about MRI scans and chemotherapy. We must remember that patients are people.

481

Chemotherapy in the community is another issue. In some areas in the Northern Health and Social Services Board, GPs occasionally give chemotherapy because they are concerned about their patients having to travel all the way to Belfast. The General Practitioners' Committee is cautious about this. We have all seen televised stories about mistakes being made in dosages and people dying as a result of mistakes. We are GPs; if we had wanted to be oncologists, we would have trained as such. If there were to be a desire for chemotherapy in the community, we accept that some GPs could do it.

482

Dr Patterson's usual comment is that he wants it agreed, planned and resourced. If chemotherapy is to be given in the community, it must be agreed. A GP who wants to do it should be allowed to. However, if a GP is unhappy about doing it, he or she should be able to say no. Proper planning would include proper training. If this were to happen, doctors and nurses would have to be trained. Part of the resourcing should include GP time because chemotherapy in the community could be time intensive. If a GP is giving chemotherapy, he or she cannot see patients in the surgery at the same time. Nurses would need extra time, and suitable equipment would have to be available. It cannot be seen as either a cheap option or a second-rate service. If it is going to be done in the community, it must be done properly.

483

This raises the question of whether a GP's medical insurance would cover giving chemotherapy in the community. That issue would have to be examined.

484

Mrs I Robinson: Dr Watters partially addressed the question that I am about to ask, but I want to tease it out. Effective referral guidelines should follow prompt diagnosis. Given the problems that the increasing specialisation of cancer consultants has created for GPs in making referrals, how would the issue best be tackled, and how would the implementation of any new referral system be monitored robustly? In what ways can the proposal by Macmillan Cancer Relief to provide a network of GP facilitators in the four health and social services boards help to improve knowledge and training on cancer and palliative care from a primary care perspective? What lessons have been learnt from elsewhere?

485

Dr Watters: A directory of specialist services would be useful with regard to referrals. The Macmillan facilitators may be able to avail themselves of that information and provide it to the rest of us.

486

My understanding of the facilitators' role is that they are more concerned with palliative care and the improvement of GPs' knowledge of symptom management - managing pain relief and dealing with complications arising from the treatment and the cancer. I am not aware of referrals being monitored at present. We have no feedback on that.

487

Mrs I Robinson: Feedback would be worthwhile so that patients are referred to the appropriate consultant.

488

Dr Patterson: The first port of referral being the right port of referral is the ideal, but I have to put in a word of caution. When the symptoms are early and undifferentiated - vagueness, tiredness, anaemia, loss of appetite -there can be great benefits in referral. However, this is not always possible because most malignancies - from leukaemia to bowel tumours - can present in that way. At an early stage, it is not an exact science.

489

I would not want doctors to feel that they were being scrutinised and compared on a league table that they had been 100% accurate. Waiting for such accuracy would disadvantage patients. If there is to be a credible directory of true specialists - people who have experience and training in that field - you must ensure that those specialists are being used appropriately. I accept that monitoring is necessary, and we can always learn from inappropriate referrals. However, the stage at which you can do most good is probably the stage when a referral may be the least accurate.

490

We are keen on the idea of a directory. We are in the early stages of developing an advanced cancer service in Northern Ireland and we welcome that process. However, sometimes generalists have simply been re-designated. We are concerned that people do not have enough experience or training to treat a specific cancer.

491

Dr Dunn: GPs refer patients to the surgeon they consider to be the best. The surgeon may not necessarily be in the local hospital. The Committee may care to keep an eye on this. In any new system of secondary care, GPs should not be tied to one particular trust or board. We should be able to use our clinical freedom to refer the patient to the surgeon and hospital we think the best.

492

The Chairperson: That makes sense.

493

Mr McFarland: We have heard from yourselves and other witnesses about the importance of early diagnosis, and the difficulties that GPs have with identifying cancers early enough. How could the role of primary care professionals - particularly GPs -be enhanced in the context of cancer service delivery in this early identification? What are the obstacles to getting a system where cancer can be identified early and GPs can get people into the system in time to keep them alive? I understand that the earlier the cancer is identified, the better the chance of survival.

494

Dr Patterson: I shall describe our two biggest obstacles. The first is our ability to cope with demand, since people frequently find it difficult to access primary care services largely because of the backlog of work and the extra workload being created by those having difficulty getting treatment. That is causing a logjam all the way back into our surgeries, meaning that some people wait to see us. We should be delighted if that could be addressed, because it is a fundamental problem.

495

The second problem, which we could probably start to address fairly quickly, is our ability to carry out initial diagnostic tests. Things have gone in our favour in the last decade, because open access radiology is now accepted. When I first went into practice, you could do nothing apart from X-raying someone's chest. Now we have open access to radiology and ultrasound. With ultrasound we can get confirmation or detailed diagnosis on such things as tumours of the testes, though we must wait a considerable length of time. Open access to endoscopy, especially of the gastroscopy type, is now fairly commonplace. Those things help, but drawn-out waiting times have developed because of demand.

496

Increased access to primary care - not just to GPs but to the whole primary care sector - when investigating patients would help to speed up the process and increase accuracy. As long as the process were quicker for referral and investigation, it would be a meaningful step. Those things would certainly help; I should probably also like there to be a greater number of GPs and nurses to improve access at the primary- care wall.

497

It is important that GPs give priority to those with suspicious symptoms. On a busy day, with large numbers of people being added to lists, it is easy not to give priority to someone who has been coughing up blood or has other warning symptoms. We must try to improve that situation. However, it would help if we were given the tools to investigate matters more thoroughly.

498

Mr McFarland: Access to scanners is clearly a problem, and you mentioned several types. Perhaps it is not a problem of hardware, because they can presumably operate 24 hours a day. That is clearly not the case, however; they tend to operate during the working day. It is likely to be a staffing problem, and if you could find staff to operate the scanners, we could fire them up 24 hours a day, making a dramatic impact on waiting times.

499

Dr Patterson: I am not aware of trusts' logistics when operating such machinery. Scanners frequently break down when we operate them too often. However, there are not enough of them. You would have to argue the question of efficiency with a technician. With the numbers we have, I do not know whether we can operate them 24 hours a day. It is even more soul-destroying when people hear that they are going for an MRI scan only to be told that the scanner is broken. The problem seems to be with MRIs, which are probably the most sophisticated type of scanner.

500

Other types of radiology require the time of experts, and finding radiologists is a serious problem because they seem to be an endangered species in the Province. That is one of the major causes of delay. Ideally, we should have enough scanners; in the United States there are scanners everywhere, and there are no delays. However, in the NHS we shall always be limited in the number of scanners we have, and we want them to operate optimally. I could not say whether that is 24 hours a day. We also need enough people skilled in the interpretation of results, and that is currently a serious deficit.

501

Mr Gallagher: While the service seems to be unsatisfactory everywhere, it is particularly grim for cancer sufferers in the west of the Province. You state that haematologists will not come to the west of the Province to see patients, and that those patients have to travel to Belfast. Is that justifiable? Given that resources will not become available overnight - even if we can get extra resources - is there any compromise that would result in a better service? The referral time from the GP to the consultant should be about two weeks. However, that is not happening. How long are the delays and why have they occurred?

502

Dr Watters: Oncologists do some peripheral travelling. However, part of the problem with the haematologists in the west of the Province is that that area falls into a gap. The cancer centre is in Belfast, and the cancer units comprise the Ulster Hospital, Antrim Area Hospital, Altnagelvin Hospital and Craigavon Area Hospital. There is a gap where there is no cancer unit.

503

Two haematologists were based in Enniskillen, but they have both resigned. That is partly the problem of attrition in clinicians providing services in small peripheral hospitals where the demands for their on-call services and care for patients is high. If jobs become available in Belfast where there is a more doctor-friendly working environment, doctors can, and do, move. It will always be difficult to attract people to work in smaller units. Antrim Area Hospital is not peripheral, but it has just lost a radiologist because a vacancy arose in Belfast where there was a better rota and more family-friendly hours. It is difficult to answer the question of how best to provide services.

504

The oncologists do not want to travel. The cancer units do not see themselves as providing additional peripheral clinics. However, it should be possible to provide many of the follow-up blood tests at a local base. I have had discussions with the oncologists, and I do not see them providing chemotherapy locally, unless that devolved to GPs.

505

Dr Dunn: There is a problem with small hospitals. Antrim Area Hospital should have 10 radiologists and it has only eight. At one point there were only three. If you are on a rota of a 1 in 3, and you can get a job in the Royal Victoria Hospital that has a rota of 1 in 25, many young doctors with families will go to the Royal. Ideally, it would be better if a team could travel to the patient. Fit people can travel down the M1 much more easily than sick patients can the other way. I would like to see a system in Enniskillen, for example, where the team could travel to the patients, rather than vice versa.

506

Dr Patterson: Perhaps I might comment on that from a medical rather than a political point of view. In his report, Dr Maurice Hayes suggests that the south-west might benefit from sharing facilities with Sligo in such circumstances, and that should probably be considered. That such things can only be done in larger units is an established fact, and the nearest of those is the most appropriate place. I often say it is unfortunate that Northern Ireland has a lough at its heart, because it impedes access for a great number of people, especially when everything tends to be centred on Belfast. There are solutions, but I do not know how to work them out.

507

The Chairperson: The Hayes report's idea of linking up with Sligo is interesting.

508

Mr Gallagher: It seems there are possibilities for improvements in the present arrangements. The second part of my question was about the delay in referral.

509

Dr Patterson: Once again, our evidence is purely anecdotal. For some unknown reason, most of the Province's trusts have stopped publishing waiting times, possibly because we were highlighting them. We are therefore relying on anecdote.

510

However, the issues our colleagues have raised with me suggest that the situation is getting worse rather than better, especially for non-breast tumours. I hear very few complaints that breast lumps cannot be examined within a two-week or four-week period, but the wait seems to be lengthening for people with suspected bowel cancer and so on, and that is also the case for all waiting times for routine - if there is such a thing - outpatient appointment diagnoses.

511

That first appointments are becoming increasingly difficult is an issue for the Health Service as a whole, and it certainly has a spin-off in the form of lengthening waiting times. I could not quantify that change by saying that waiting times have moved by four weeks in the last year, but the trends in waiting list times for general services published by the various trusts over the last year or two are probably also applicable to cancer services.

512

The Chairperson: There is also a 9% average cancellation rate for outpatient clinics.

513

Rev Robert Coulter: Thank you for coming; it is important that we hear what you feel the problems are. Normally when we ask a question about a problem, the stock answer is to throw money at it. Are there any aspects of cancer service delivery that might be improved in the short term without requiring a substantial injection of resources? How might we go about that?

514

Dr Dunn: That is a difficult question. Part of the problem in our referring patients is that they do not usually have cancer; we only suspect it. It would be better if we could say that a man had cancer of the colon and could then ask for him to be treated. However, one is essentially referring people with the symptoms and signs of cancer. As Dr Watters said, referral guidelines would be useful. I sometimes wonder whether hospitals are efficient; but it is easy for me to talk. You could look at my practice and wonder if it was efficient.

515

Twenty years ago there were fewer staff. If a GP was concerned about someone, he lifted the phone and talked to the consultant, who agreed to see the person the following week. Nowadays the nature of communication with hospitals means that not only can a GP not speak to a consultant, he cannot speak to his secretary. Everyone has voicemail, and people return calls - eventually. The lines of communication are much more blurred now. However, there are ways of cutting through that. In the days of local hospitals I could phone the consultant when I was concerned that someone had cancer of the lung, and the consultant would agree to conduct a bronchoscopy the following week rather than see the person as an outpatient. If someone has all the signs and symptoms of a disease, why make them wait for six weeks for an outpatient appointment and another four or five weeks for investigations? If a patient fulfils certain criteria, it may be easier for the GP to bypass the initial first visit, book the investigations and get around the problem that way.

516

I do not advocate throwing money at the problem. Certain acute trusts are black holes, and, if you throw money at them, it disappears. We must make them accountable for what they do with the money they receive, and they should demonstrate improvement when they get extra money.

517

Dr Patterson: There are two sides to everything. I would not argue that the Health Service is appropriately funded, and my colleagues would probably agree with me. However, we must examine how we use the crumbs of comfort that we have. The issue extends beyond the provision of cancer services. We must look at the entire Health Service and how it deals with the money that it has. We must ensure that it does the things that we intend it to do. For example, money has been spent on waiting-list initiatives that have increased the waiting lists. That seems strange to the public; it seems strange to me and, no doubt, it seems strange to the Committee. However, there seems to be a lack of scrutiny to ensure that such moneys are spent on patients.

518

There is a strong suspicion within the medical community that money is not being spent on patients. We see our waiting lists, and we know what is happening. We know how difficult it is to get funding as a result of waiting-list initiatives. In my practice I focus on waiting lists, especially on the sick people who are on those lists. However, because people joined the end of the list faster than the initiative was getting others off it, we were denied access to resources. People wonder what is going on. We must examine the resources that we are getting and ensure that patient needs are targeted.

519

We must also find a way to keep skilled staff in the Health Service; that applies particularly to those who are skilled in cancer services, whether they work in the areas of diagnosis or management. We seem to be unable to retain medical and nursing staff who have the necessary skills. The same thing applies in other areas such as intensive care and specialist nursing. The staff seem to be under more pressure than they will ever be rewarded for. However, they do not feel that they are being rewarded for their skills in the specialism. To solve the problems in cancer services we must examine how we organise the entire health service.

520

Dr Dunn: The Health Service in Northern Ireland seems to provide a perverse incentive in that longer waiting lists and poorer services receive more money. There should be bonuses - and those who provide a good service should get more money.

521

At present, hospitals or trusts with long waiting lists get extra money to clear those lists. I do not intend to be controversial, but a chief executive might reduce his waiting list quicker if he were to get a bonus for doing so. Other things to watch out for are the creative ways of getting around waiting lists. Sometimes, if pressure is put on trusts, they create a waiting list for people to get onto the waiting list. We must ensure that reductions in waiting lists happen because patients are being treated.

522

The Chairperson: Nurses at certain grades are taking on responsibility for higher-grade work. That happens because there is no funding available to pay higher-grade nurses. The same thing happens in other professions, but it is a serious problem for young nurses.

523

Mr J Kelly: Has the change in culture put more pressures on cancer services? If a patient were diagnosed as having cancer 15 or 20 years ago the curtain was pulled down on them. The community, relatives and friends were there to look after them, but there was no notion of chemotherapy or other modern treatments. Do we need to reappraise that?

524

Recently, a friend of mine died from a brain tumour and, cancer aside, her quality of life during her last days was destroyed by the treatments she received. She was treated even though she was unable to say whether she wanted it or not. Do we need to examine how we could change the culture in that aspect of cancer services?

525

Dr Watters: It would be advantageous to produce protocols for the management of cancers. It should be feasible to provide standardised information. As part of the process for improving communication between those with the illness and those who treat them, the person with the illness should have the statistics for how effective that treatment is likely to be for them. That would enable a patient to make an informed choice between, for example, taking the one-in-five chance that the treatment will cure them or the four-in-five chance that they will feel slightly better without the treatment until such time as the disease overwhelms them.

526

The exchange of information throughout the system needs to be improved. It would not be difficult to produce protocols for patient management with the appropriate patient information for each of the most common types of tumour, although more research would be needed for more difficult cases. I would like that to become a standard part of treatment.

527

Mr J Kelly: What are GPs main concerns about the provision of out-of-hours care services for cancer patients, which are patchy at the best of times? Apart from providing extra resources, in what ways could planning be improved so that social services and the voluntary sector could provide the desirable 24-hour service that Mr Gallagher talked about earlier? How could the role of the district nurse be enhanced in this context?

528

Dr Patterson: To be fair, quite a lot of progress has been made during my time in general practice. The situation is not perfect, but we could learn from the - albeit limited - developments that we have made so far. District nurses have an enormous role to play in palliative care, and more of them are helping to develop that role. They have fairly good training programmes, but more nurses need access to those.

529

Similarly, the voluntary sector has done a tremendous amount through Macmillan Cancer Relief; its work to support families; and its ability to provide respite in the home, without the patient having to be sent to a nursing home or hospital. That is the right idea; and the situation is improving - although not as quickly as we would like. The voluntary sector is to be praised because it often provides support with very little backing from the Government. Its work is well received in all communities.

530

The voluntary sector offers help from people who are specifically trained for such work. It is vital that we work with the voluntary sector to improve the situation. We need more of the same because it works. Feedback shows that the service offered by the voluntary sector is very welcome and is something that people would like to see developed further. If the Committee can give any guidance to Government on the matter, that will be well received because the concept of dying in hospital is, thankfully, not commonplace nowadays.

531

As regards palliative care, we encourage more and more people to stay in their own homes with their families. Mr Kelly said earlier that the cancer sufferer may not always have as much choice as they should have. Achieving a clinical and ethical balance is a very difficult and delicate process. I would encourage the development of more care in the home. Providing 24-hour medical input is a huge task. However, with more support on the ground it is feasible.

532

Dr Dunn: The Northern Health and Social Services Board has a twilight nursing service that is available until 11.00 pm. Although the GP gets the call, he or she is not always the best person to provide nursing care. Therefore, it is helpful to have a nurse present.

533

It is necessary to have scientific input if you are told that you have a 30% chance of surviving for five years. It is comforting to know that you are receiving the optimum care. However, you must also have human input. That has been overlooked due to advancements.

534

Ms Ramsey: Training and prevention have been mentioned throughout today's discussion. You talked about early diagnosis and treatment when speaking about the Campbell report. However, complaints against GPs for wrong diagnoses are on the increase. Regarding training, what measures have you taken to improve the early detection of cancer symptoms?

535

Dr Patterson: Frequently, wrong diagnosis is the result of delay. Improving access to hospital services would allow us to diagnose cancer sooner. Awareness is most important. Most of our training programmes are aimed at making people continually aware of the alarm symptoms. Unfortunately, even then there are often delays in diagnosis. People can always look back and say that six months ago they told their GP something that should have led him to a diagnosis. The "retrospectoscope" is always a simple instrument to use. We encourage training people to recognising those alarm symptoms when they arise. However, GPs also need to be given the tools with which to investigate symptoms.

536

GPs frequently have to rely on others. We have mentioned delays considerably today, and delays in diagnosis reflect badly on GPs. Although it usually has nothing to do with the GP, it is perceived to be the GPs fault that the diagnosis has taken so long. We are expected to start the ball rolling, since we are at the coalface. There is the perception that no matter what is being done it can always be done quicker. That is a false perception given the current state of the Health Service.

537

Dr Dunn: The commonest reason for not spotting something is not looking for it. The commonest cause of GPs making mistakes is lack of time. A GP might see five people with constipation in one afternoon. Of those, one will have cancer of the colon and the other four will just have constipation. It is difficult to make a full diagnosis in such a limited time. Like the Committee, we want to see consultation times increased. It is one of our proposals. More GPs are also needed. We cannot diagnose everybody's condition in five minutes. Longer consultation time would allow more accurate diagnosis.

538

Dr Watters: The issue is not only about delays in diagnosis; it is also about health promotion. Regrettably, patients can present symptoms of cancer that are so obvious that a man on a galloping horse could diagnose it. However, because of the perception that cancer is "the end", people are afraid to be diagnosed and treated. Within the last year we had a patient who ignored a massive breast tumour for at least two years before she came to see us. We must get the message across to people that treatment is improving and that it is important to report symptoms early.

539

Ms McWilliams: It is alarming that people are presenting symptoms to GPs so late in the day. It speaks volumes about people's fear about going to the Health Service.

540

Your submission states that after a patient is discharged from hospital the GP receives a house visit request. The only information the GP has is a written discharge letter, which is given to him when he arrives at the patient's home. Patients will then ask questions about subsequent treatment. Is that still the case? Is it increasing or decreasing, as the recommendations in the Campbell report are implemented?

541

Dr Patterson: It is probably on the increase; it is not a rare event, it is custom and practice. One reason for it is the pressure on the hospital sector to have patients discharged. They do not have the luxury of following the Campbell report's guidelines. Frequently, we are running into situations that we are not fully prepared for.

542

Ms McWilliams: Do you want it on the record that following the Campbell guidelines is a luxury?

543

Dr Patterson: I am not saying that. The pressure on our hospitals makes it highly unlikely that people can plan the discharge as they would like. I am not blaming anyone for that; it is sheer pressure that makes it unrealistic.

544

Ms McWilliams: I am very much aware of that.

545

Dr Patterson: I am not saying that people do not try to follow the guidelines; they probably do.

546

Ms McWilliams: I am concerned that it has got to the stage where you, and probably your patients, have come to realise that a hospital doing that is the icing on the cake, when it should be standard practice.

547

Dr Patterson: Patients expect that GPs are, by some means, provided with details about their condition. Most patients that I see - and I would be interested to hear from my two colleagues - assume that we have more information than what is contained in the discharge letter. They assume that we know what they have been told, what the family have been told, and that we know what the subsequent process will be. Sadly, in my experience, the reality is that is not happening.

548

The Chairperson: Most GP practices are computerised, so there is no excuse. I appreciate the pressures that hospitals are under, and I am familiar with the wee note you receive when you visit a patient and the questions that you cannot answer. However, it seems reasonable that a summary of the main points of a case could be emailed to the practice. I am sure that these things have been discussed.

549

Dr Dunn: We have tried for the past 10 years - since fundholding started - to get a management plan for our patients. We receive a brief letter of discharge for a patient and are advised they will be seen in six weeks. We tried to get a management plan that would contain presentation, investigations done, diagnosis, treatment, treatment on discharge, when they will be reviewed, and outlook. We fought to get this for years, and eventually they agreed to give us a management plan. Nowadays we receive a letter that states "management plan; review in six weeks".

550

There has to be a culture in hospitals that they do not lose interest in patients once they are discharged. There must be continuing communication, and we are in favour of this type of standardised discharge.

551

Ms McWilliams: If you were looking at 10 patients, how many of them would you have accurate information on in order to give them the advice that they seek?

552

Dr Dunn: Initially none, as patients receive flimsy hand-written letters, basically for their drugs and discharge. Usually it contains a diagnosis and the drugs required. Occasionally there is not even a diagnosis - just a list of drugs. You then receive a discharge letter that arrives when the consultant or the junior doctor has had time to type it. If you are lucky this will take six weeks or more. Unless GPs phone the consultant, who may not know the patient and would have to get their notes, they do not know what is going on.

553

Ms McWilliams: In that case, there must be more integration between the GPs, as primary carers, and what is going on in the acute hospital.

554

Dr Patterson: Frequently, that does not involve additional work. Elaborate prose is often written about patients, and it must be thoroughly screened before the relevant information becomes obvious. It would be preferable if the information were presented in a simple format, rather than wait six weeks to get a book about a patient. The information needs to be structured, and the timeliness is vital.

555

Ms McWilliams: It is disappointing to hear that although technology has advanced to such a great extent, patients in Northern Ireland still cannot get the most basic information. You referred to a study that GPs from the Causeway HSS Trust carried out. You made a point, which concerned me. You said that services are deteriorating and you refer to the partial implementation of the new model for cancer services. Obviously, without full implementation, the final goal has not been reached. However, we do not want to have a situation whereby services are deteriorating rather than improving. Is the deterioration due to the fact that the model is not fully implemented, or is it because there are insufficient specialist staff and more of the workload is falling back to the GPs? You seem to be saying that in Northern Ireland it is better to have one form of cancer than another. What happened in the preceding year that has made the situation so bad?

556

Dr Patterson: We must bear in mind that the GPs from the Causeway HSS Trust carried out the study. They are in a unique situation with the development of a new hospital. The implementation of some parts of the Campbell report - to centralise specialisms - made them suffer in the early days. They had what was an acute hospital and they referred most of their patients to the specialists there. The lines of communication between the two were good. That suddenly changed, and GPs there had to send patients elsewhere, where the lines of communication were not so good. In their opinion some of the issues raised in the Campbell report, such as centralisation, had happened, but access to services had deteriorated.

557

Ms McWilliams: Why do you refer to that in your submission?

558

Dr Patterson: It is the one piece of research that GPs in Northern Ireland have carried out. They did it because they were concerned that things were getting worse.

559

Ms McWilliams: If more research were carried out in your sector, could issues such as this be flagged?

560

Dr Patterson: If a similar survey were carried out in Mr Gallagher's region, people may not highlight the same problems with their service. If the same research were carried out in the North Down and Ards area, the opposite might be the case.

561

Ms McWilliams: An audit of needs is ongoing, and from the Departments perspective it might be useful to look at regional variations. Another issue alarmed me. Is your submission missing a word? Paragraph five, on the structure of the cancer centre and units, states,

"We have been concerned that the new centre will have enough beds to allow for full inpatient treatment."

562

Dr Patterson: The sentence is missing the word "not".

563

Ms McWilliams: Therefore, it should read,

"We have been concerned that the new centre will not have enough beds to allow for full inpatient treatment".

564

You report that, as a consequence, more treatment would have to be provided on an outpatient basis. The experience of GPs shows that if outpatient treatment is increased, their workload will increase without a commensurate shift in resources to allow for it. Why is it that we are about to develop a new cancer centre, and put all of these resources in it, only for you to state that it will not have enough facilities?

565

Dr Watters: It is partly because of the shift in the pattern of service provision. Professor Johnston is keen to provide more chemotherapy on an outpatient basis.

566

The figures that I saw proposed that the bed complement would be reduced by 15 compared with what is presently provided between Belvoir Park Hospital and Belfast City Hospital. The shortfall would be made up by more patients being treated on an outpatient basis. As GPs, we were concerned about this, as the idea that we should provide outpatient chemotherapy has never been formally discussed with us. We have not been given the training or resources to do that. I got the information from the Campbell cancer services commissioning group, of which I am a member, and I raised the matter with my colleagues.

567

Ms McWilliams: We have heard that the business plan is to get off the ground soon. However, if you are suggesting that some of that business plan means that you will be picking up some of the 15-bed capacity, that will have resource implications.

568

Dr Patterson: We should consider the evidence of where care is best provided and we should resource it on that site. If the evidence suggests that it is best done on an outpatient basis, we shall not disregard the evidence, provided that such care is resourced. Our concerns are that it will be done without supporting evidence and purely for reasons of cost. The Health Service has moved from in-patient service to outpatient service. That has been a constant trend. In some cases it has been the correct thing to do; in others it has been done for reasons of cost to the detriment of patients' care. I am not sure which way the evidence points in this case.

569

Ms McWilliams: However, if the design suggested that that should be the case, you would want to be involved in the decision and you would want your undergraduate and postgraduate training to be in place to accommodate such a shift.

570

Dr Patterson: The community must also be resourced to do this work. There is a perception that the community can simply absorb work, and we have told the Committee what has been happening. If this is more of the same, it will further reduce our accessibility unless someone can suddenly find more nurses and more doctors to put into the community. We need the tools to do it; it is not safe for patients to have their care constantly transferred to a sector of the Health Service that cannot meet their needs. The sponge is full.

571

Ms McWilliams: Your submission deals in detail with integrated clinical pathways and how they may relate to a new cancer centre or new units. Do you wish to add anything to that?

572

Dr Patterson: If we do follow clear-cut clinical pathways we must be able to guarantee them. There is no point in telling the public that we shall do one thing only to do something completely different. If expectations are raised they must be met; we cannot leave people high and dry. These are not idle words: people come to us to complain when they have been left high and dry, because they have no one else to whom they can complain.

573

The Chairperson: Research and development in the Health Service, which was under the direction of Ingrid Allen and is now under the chairmanship of Prof Seán Fulton, has done virtually nothing. You raised that matter with the Committee before, as have others. I assure you that we have taken it up with the relevant people and we shall do so again, especially in light of the reorganisation of primary care.

574

Earlier you spoke about men's cancer, and it is fair to say that public awareness of this issue is improving. The proposed clinic at the City Hospital is a major step forward; although it will be funded privately, it will be open to everyone.

575

One other point I will raise is the prevention of ill health and health promotion, which are two sides of the same coin. The chief medical officer does a fair job and the Department's health promotion agency, the trusts, and the associated health action zones are all doing their own thing on health promotion and prevention of ill health and are doing outstanding work. The amount of money going to the health promotion agency and spent on prevention is small and yet it is very important.

576

The World Health Organisation has recommended that each person has five servings of vegetables or fruit daily to help prevent cancer and heart disease, but that message does not get through. When one compares the massive amount of money spent on the Health Service with that spent on prevention, more emphasis should go on providing sufficient funding for education on prevention. It will be money well spent. We are behind on those matters. Community nurses and doctors are involved in primary care and basic health promotion every day of the week.

577

Dr Patterson: I will elaborate on those three topics you brought up Chairperson. At the weekend I attended a meeting of the Royal College of General Practitioners and one presentation detailed the money spent on research and development in primary care across the UK. Scotland, England and Wales are spending, on average, around 76 pence per person on research in the primary care setting. Northern Ireland is spending three pence per person.

578

The Chairperson: Dr Patterson, will you send us a letter detailing those points, as prevention is better than cure?

579

Dr Patterson: I will gladly do that. The other aspect you referred to is men's cancer care at the Belfast City Hospital. We welcome any centre that will address men's major health problems. Men's culture needs to change and we all have a role to play in that change of attitude. The superficial example I give is if a mother brings a child to me for vaccination, it is appropriate for me to ask her if she has had breast screening or a smear test - that is culturally acceptable. If a father brings the child for vaccination, it is inappropriate for me to ask him to drop his trousers. We need to overcome that cultural attitude.

580

I would commend the work of Prof Barbara Starfield who has carried much research on where money is best spent in the health service. She states that, as the Americans would say, "You get more bangs for your buck" if investment is made in primary care. I am not saying that secondary care does not need investment.

581

The Chairperson: We need to look into that aspect and perhaps at a later stage we can ask for that information from you, Dr Patterson.

582

Dr Patterson: Significant changes can affect outcomes for the public by investing money and resources where they live, work and breathe, rather than waiting until they have huge problems that are very expensive to treat.

583

The Chairperson: Thank you all for your time. Your documentation and your comments have been very helpful.

Wednesday 28 November 2001

Members present: Dr Hendron (Chairperson)
Mr Gallagher (Deputy Chairperson)
Ms Armitage
Mr Berry
Rev Robert Coulter
Ms Hanna
Mr J Kelly
Ms Ramsey

Witnesses: Mr Q Coey, Chief Executive )
Prof P Johnston, )Prof of Oncology ) Belfast City
Mr A Brown, ) Hospital Director of Operational Support )
Mrs E Henderson, )Lead Nurse for Cancer Services )

584

The Chairperson: As part of our inquiry into cancer services the Committee for Health, Social Services and Public Safety welcomes the chief executive, Mr Quentin Coey, Prof Patrick Johnston, professor of oncology, Mr Alistair Brown, director of operational support and Mrs Elizabeth Henderson, lead nurse for cancer services, all from the Belfast City Hospital. Also in attendance is Ms Denise Stockland, the project manager of the cancer centre.

585

We are coming to the conclusion of our deliberations and will be drawing up a report shortly, so your documentation will be very helpful. We appreciate that much work was involved, and we thank you very much.

586

Mr Coey: Thank you, Mr Chairperson and members for your invitation to appear before you today.

587

You may already know Prof Patrick Johnston. Mr Alistair Brown is the project director of the cancer centre development. Liz Henderson was the nurse manager at Belvoir Park Hospital and now carries that responsibility for oncology and haemotology at both Belvoir Park and Belfast City Hospitals. She is recognised as one of the leading nurses in these islands in cancer services.

588

I want to record our appreciation of the interest and support of the Committee for Health, Social Services and Public Safety. Without exception we have appreciated your interest, your challenge and your encouragement in so many ways. The staff of the trust, our patients and their relatives and friends deeply appreciate the commitment of this Committee's Members.

589

The Chairperson: Thank you, Mr Coey.

590

Mr Coey: I propose to take the Committee quickly through this substantial submission of some 43 pages. I will lift one or two key points and then refer to the additional paper which you received today. That will give you a flavour of our achievements in the three years that we have been responsible for cancer services. Prof Johnston will speak briefly, and we will then take questions.

591

On page 2 of the summary we make the point, with which I think you all agree, that the continued provision of radiotherapy and chemotherapy services at the Belvoir Park Hospital site is neither desirable nor sustainable. The environment there is sub-standard and continues to deteriorate. Many of you may agree with that as you have seen it for yourselves. There is an immediate need for investment in equipment at the cancer centre, particularly in MRI (magnetic resonance imaging) scanning, which is unavailable for cancer patients. An additional CT (computerised tomography) scanner is needed for the Belfast City Hospital. Those needs are immediate and must be met before the construction of a new building.

592

The cancer services at Belfast City Hospital and Belvoir Park Hospital do not stand alone. We work closely with colleagues at the Royal Hospitals Trust who provide crucial services for a range of cancers in co-operation with the teams at the Belfast City Hospital and Belvoir Park Hospital. In our submission we have listed the cancers in which we specialise - breast, dermatological, GI (gastrointestinal), gynaecological, haematological, lung and urological, and I will discuss some of those later.

593

In paragraph 4 on page 5 we recognise that the diagnoses and treatment that many people have received have been less than satisfactory, and we are not prepared to tolerate that. We have listed the combination of factors that caused that. The need to re-organise the delivery of cancer services is a priority so that there is equitable access to diagnosis and treatment for everybody.

594

We recognise the need to step up research. The level of research has not been what we want, but I am pleased to report that there have been advances already. Like myself, the Government are constantly bombarded with requests for funding, and we all must prioritise. We cannot agree to everything, but we must provide for our cancer patients and those who love them the most. Families often suffer equally with their loved ones because of the inadequacies of cancer facilities, the like of which we would not tolerate in a modern shopping centre or cinema but are willing to tolerate in a hospital. That cannot continue, and I know that you agree with that.

595

I mentioned the diagnostic facilities when I talked about CT and MRI scanners. I will come to treatment facilities later, particularly the linear accelerators and brachytherapy, the sub-standard accommodation and the need to build up our specialist staff. That needs more than money. It also means giving people jobs in which they are fulfilled and in which they wish to make their careers.

596

The appointment of three genetics counsellors is mentioned on page 6. Advances in genetics and the understanding of what may make one person more or less disposed towards a certain illness than others have helped us to understand cancer. This is a strength in the Belfast City Hospital, and that translates into how we handle that type of information, which has to be given to families carefully, and there are plans to employ three new genetics counsellors to support the team.

597

The report 'Delivery of Cancer Services - Submission from Belfast City Hospital Trust' emphasises the need to improve radiology facilities and the need for more CT and MRI scanning in order to make accurate diagnoses. There will be an excellent provision of those facilities in the new building, and that is something we look forward to.

598

The hospital has a good tissue and cyto pathology team, but we must invest in more laboratory equipment. Tissue/cyto pathology laboratory services are provided jointly by the Royal and the City through our link laboratory arrangement. We can concentrate specialist resources in one hospital, with services provided to both hospitals and others as well, and it works quite well.

599

The report also refers to information and choice for patients, which are important. Not every patient or carer wants much information, but everyone has a right to help to understand the illness, its symptoms, causes and prognosis and the impact of treatment. We are determined to improve there. There are focus groups in many hospitals now. One of the main speakers at a quality conference last week was a patient, and many patients and former patients attended the recent Living with Cancer conference organised with Action Cancer and the Ulster Cancer Foundation. Patients take part as equals to the staff in the sub groups, and it is an important way in which to engage them. They are our constituents, with a right to understand what is happening.

600

There is concern about radiation oncology or radiotherapy. Many machines in Belvoir Park are approaching the end of their useful life, and the Department has agreed to our business case for additional linear accelerator capacity, and work to put two extra linear accelerators in place will start on Monday 3 December. Those machines will transfer to the new cancer centre in the City Hospital when it is complete. I thank everybody who campaigned with us for this.

601

Another aspect of treatment is medical oncology, and the enormous growth that has taken place in that is indicated on page 13 of the report. Paragraph 4.9 refers to the needs of patients. The number of new patients who were seen by oncologists increased from 3,373 in 1996 to 4,066 in 2001 - a rise of 21% in four years - and it may rise to 5,100 patients in 2005 because of increases in the incidence of certain cancers and in the referral rate for treatment. In the past many people were not diagnosed and referred for treatment; they lived and died with cancer.

602

Our success in the Health Service means that people live longer and are more likely to develop illnesses of this kind. We are thankful that survival rates have improved. However, that can mean that cure is not absolute and a patient needs to receive treatment for a prolonged period. The table at the bottom of the page shows the enormous growth in chemotherapy fractions and procedures and how that has been run out to the cancer units. The bottom right-hand corner shows that the percentage growth in chemotherapy treatment between June 1999 and April 2001 was 88.7%, a phenomenal increase that shows how many were not receiving treatment before June 1999.

603

The third paragraph from the bottom of page 14 refers to the limited number of trained pharmacy medical technical officers and pharmacists. That is linked to chemotherapy because pharmacists are needed to administer it as well as doctors and nurses. You may already be aware of the need for more pharmacists in the Health Service. That has been a real problem in recent years, and the Department is working with the trusts and area boards to resolve it.

604

Page 15 deals with establishing a cancer clinical trials unit. That was a phenomenal success for us in Belfast and for our patients. Including patients in clinical trials of the most advanced drugs means that we can guarantee that they receive the very latest developments, which is good news for the service. Prof Johnston, the expert on research, will speak about that later.

605

I turn now to page 17. Therapy and the rehabilitation of patients can sometimes be in the background. Professions allied to medicine come into their own here, and I cannot speak highly enough of our teams in fields such as nutrition, dietetics, physiotherapy and occupational therapy. They are crucial for cancer patients, as are those in speech and language therapy for people who have had operations on their throats. Teams in allied professions are of an enormously high standard, and we can be very proud of them.

606

So much can be done with equipment and expert staff, but it is not easy to come through cancer. I make it my business to get to know as many patients and their families as possible. As a layman I understand the enormous trauma they go through on what might be called the cancer journey. Page 19 shows a range of people who are very important to that journey: the chaplains, the clinical psychologists and the supporting care services provided in the Gerard Lynch Centre. Other therapies are shown which do not replace clinical treatment but complement it, such as hairdressing, wig fitting, social workers and palliative care. Such things used to be left on the back burner, but they ought to be right up there with treatment itself.

607

Once only the dying received palliative care, help with managing pain and giving support. Counsellors at the Belfast City Hospital from the Ulster Cancer Foundation and other charities must be fully trained and accredited before they are allowed to support patients or their families. It is intended to maintain that service in the hospital's new buildings at Wilmot Terrace - a row of houses on the Lisburn Road that are, some say unfortunately, preserved by the Ulster Architectural Heritage Society. They can be used as an alternative environment for giving support to patients away from drips and uniforms, somewhere they can pop in, have a cup of coffee and unwind.

608

Section 4·13 on page 21 emphasises the importance of palliative medicine and palliative care - different treatments, but both important. Belfast City Hospital now has a couple of palliative medicine consultants, but that is relatively recent. Palliative care is provided by the clinical team.

609

Section 5 covers disease modalities, and I will concentrate on those treated in the Belfast City Hospital. The breast team from the Royal Hospitals Trust transferred to the Belfast City Hospital some years ago, and an integrated service now sees more than twice as many patients as the two separate teams saw. That also has the advantage of concentrating all the resources and expertise into one team.

610

That team has been greatly encouraged by the recent appointments of Mr Khalid Khan and Miss Sigfrid Refsum. Mr Khan is a plastic surgeon who used to work in the burns unit of the Royal Victoria Hospital. He left and went to Nottingham but has returned to do some burns work at the Royal Victoria Hospital and breast reconstruction at the Belfast City Hospital. It is a great benefit to have a fully qualified plastic surgeon for that. Miss Sigfrid Refsum, the other recent appointment, has skills in breast surgery and breast reconstruction. She is another complement to the existing team, not least because she is female and able to draw close to women as they go through the ordeal of breast cancer.

611

Section 5·2 on page 24 deals with gastrointestinal (GI) cancers. Belfast City Hospital works closely with the Royal Victoria and the Mater hospitals and other cancer units in treating those cancers. The whole GI tract needs attention, and that area requires further development on patient pathways, et cetera. Belfast City Hospital aims to have teams with clearer terms of reference. Those teams will include, as some already do, surgeons, medical and radiation oncologists, gastroenterologists, (who help the diagnosis), radiologists and pathologists. GPs and public health organisations will also be involved because of the need for prevention.

612

Section 5·3 deals with gynaecological cancers. It is reassuring that the majority of significant gynae cancers are treated at the Belfast City Hospital, and we have concentrated the team there. That enabled us recently to appoint Dr Stephen Dobbs, a superb gynae- oncologist who offers an extremely good service, which is provided together with the medical oncologists and the radiotherapists.

613

Paragraph 5.4 brings us up to date on urological cancers. Women are now advanced in coming forward early with cancer worries. Only three generations ago women would come forward with raw injuries on their breast tissue and with cancer throughout their bodies. Sadly, young men still die because they are too shy to come forward -a 27 year-old and a 24 year-old died from testicular cancer last year. Women have been able to deal with this and come forward with lumps and worries, but young men are still reticent. As with breast cancer, it makes such a difference if people express their concerns. A new charity has been set up to raise money to promote early intervention in potential cancer in men. I will be meeting its members next week, and it hopes to be able to put almost £500,000 towards initiatives for men's cancers together with the urological team at Belfast City Hospital and the Eastern Health and Social Services Board.

614

Paragraph 5.5 on page 31 deals with skin cancers, the most common sort. They are not all killers. However, not long ago, a consultant in the Ulster Hospital died as a result of advanced malignant melanoma. That type of cancer can hit any of us. It is a killer, and people die from dermatological cancer each year. However, the vast majority of skin cancers are easily dealt with.

615

We set up an open access clinic for our dermatologists last summer, and it was a resounding success. People were invited to come to it if they had any concerns, and the clinic was chock-a-block on the two evenings it was open. We will definitely do that again. People knew they could come straight to the clinic. Perhaps that is a lesson for other clinics: in an open clinic people can be seen quickly by a professional, rather than go to a GP and wait for months for an appointment.

616

Paragraph 5.6 deals with haematology, another area where the Royal and the City have joined forces. The team from the Royal happily joined us on the 1 September. Its new inpatient suite includes a suite of rooms in which the air is changed 27 times an hour, which allows us to give the most advanced treatments in the world for leukaemia and associated diseases. We have also been able to open a new laboratory, thanks to a substantial charitable donation of £1 million from a friend of the hospital, which was generously matched by the Department.

617

Page 35 deals with lung cancer, the biggest killer. Its impact on females is growing. It is my great desire is to see advances in that field. In a meeting with Prof Johnson and some of his colleagues from the United States we discussed the need to do more for lung cancer patients. That is a huge area of suffering and, until recently, we could not offer much hope. We want to ensure that our centre provides the very latest treatments that are available for that cancer.

618

On page 37, I have listed cancers that we do not deal with, but which are dealt with by the Royal- neurological, paediatric, head and neck, ENT, bone and many of the GI cancers.

619

Page 38 refers to the new oncology and haematology day hospital. We have always believed that it is important to utilise the Tower intensively to justify the huge investment that was made in it. Floor C provided different services, but it was not intensively enough used for patients. It will be redeveloped as a major oncology and haematology day hospital. You have a list of its new services. I can confirm that the Minister has made available £4 million for that work, which is proceeding apace. We anticipate that the new day hospital will be functional next year.

620

The new cancer centre is the most exciting project. A building does not treat patients, but if it is used just to hold them, it will not fulfil its role. We need a cancer centre that will enable general practice, primary care and smaller hospitals to provide services in tandem with the resources in the centre. That will ensure an excellent overall service.

621

The new cancer centre is vital because current resources at Belvoir Park are unacceptable. We must also attract and retain staff. Northern Ireland's cancer experts are in short supply here. They are being recruited all over the world because their standard is so high, leaving our people vulnerable. If we get the cancer centre, we will retain those experts. If not, we will lose them.

622

The cancer centre has been a collaborative project. The Belfast City Hospital Trust has had substantial input from patients and has used their views. We have asked adolescent cancer patients what they thought would help. The building should be owned by the people and should serve them.

623

Paragraph 8 deals with the National Cancer Institute (NCI). Paragraph 9 says that there are four key areas in which the Belfast City Hospital Trust would appreciate the Committee's support. First,

"The Committee should press for an early decision to commence construction of the new cancer centre building on the BCH campus."

Secondly,

"The Committee should encourage the Department, Area Boards and Trusts to build on the achievements to date by putting in place a phased action plan to implement a regional network for cancer services."

Parts of that exist already but need to be put in place through an action plan.

Thirdly,

"The Committee should encourage Area Boards and Trusts to ensure that bids for additional investment in equipment and staff to deliver cancer services are realistic (in terms of affordability and availability) and that these are prioritised on a regional basis."

Finally,

"The Committee should use its influence to ensure that significant additional capital and revenue resources are made available to enable the delivery of improved cancer services."

624

A page has been added that says that the Belfast City Hospital Trust assumed responsibility for cancer services in September 1998. Since then we have achieved a number of things. The latest of those was getting approval to proceed with the expansion of the linear accelerators at Belvoir Park Hospital. The completion of the outline business case for the cancer centre is at the end of the page.

625

There have been frustrations over the past three years, which I have felt more than most, because we have been through hundreds of hours of work, thousands of pages of papers and detailed negotiations, not just in this island but literally across the world, to see what we can do. However, I can also reassure you that despite those frustrations, much has been achieved to date. We draw comfort from that, and now our great goal is to get this building in place.

626

Prof Johnston: I thank you for your support, particularly over the last 12 months, with regard to cancer services in general. You have all been informed about matters on the ground. Cancer is a major problem in society, and one that is here to stay. It is not a problem that will lessen; it will get worse because its incidence is increasing and will continue to increase for at least the next several decades. In the next two to three years it will outstrip cardiovascular disease as the major cause of death. That is the magnitude of what we are addressing today.

627

Approximately 8,800 people in Northern Ireland get cancer each year, and approximately 3,800 die from it annually - we have one of the worst incident rates and one of the worst death rates for cancer in the western world. That does not make us unique in these islands, but it does pose a problem. It underlines the lack of investment and strategic management that there has been for a long time. We, in medicine, have probably been culpable to a degree by helping to sweep the problem under the carpet rather than beginning to address what are, in a sense, a set of curable diseases. Over 60% of cancers are curable. That is not a message that one hears or that society understands. Indeed, it is not a message that the medical community promulgates or makes people understand.

628

Having said that, there are cancers that we cannot do a significant amount about. We must be honest and open both in our handling of them and in our discussions with patients who must suffer them. This is at the heart of what we are trying to achieve: a patient- centred service in which a patient becomes a partner in his treatment and in which society becomes a partner in beginning to improve our outlook for cancer services.

629

Mr Coey has already outlined what has been happening over the last three or four years in the organisation and reorganisation of cancer services. I am not going to labour those points, except to say that they have all been demanding on the staff involved. The staff have worked overtime and given a 120% effort to make the new systems work. We do not have some of the expertise, the numbers of trained staff or the type of equipment that other more progressive cancer centres round the world have, and that underlines the importance of what we are trying to do.

630

Cancer research is pivotal to keeping momentum and a dynamic of change, evolution and critique going in the Health Service. In the Cancer Research Centre at the Queen's University and in Belfast City Hospital we have begun to make substantial differences in the research effort. We are now recognised in the UK as being one of the major drivers in that effort by the Government and organisations such as the Cancer Research Campaign as well as by our colleagues in the Republic of Ireland. During the last three years we have brought in close to £7·5 million in grant income for research, which by anyone's standard is tremendous. We have also published in the top 5% of journals across the world, which is one of the reasons we have been able to develop unique international partnerships with organisations such as the National Cancer Institute, which recognise the high quality of people here.

631

Clinical trials in cancer research are related to quality of care. If a cancer programme's fundamental approach to the treatment of patients does not include ongoing clinical trials, an element of quality is missing. Clinical trials bring innovation and new treatments to patients as well as a uniformity of approach. They also bring quality to the way in which patients are treated and a uniform application of standards. Those things are now in place. I wish we had more people to deliver them to more patients. However, our goals for the next three to five years are to ensure that all patients have access to clinical trials and to have innovation at the core of all we do.

632

Finally, the cancer centre is not about a building made of bricks and mortar, as Mr Coey said. It is about building a quality programme of care for patients, whether they live in Fermanagh, south Down, Derry, Antrim or Belfast. The centre is a symbol of quality, and it must be seen as something more than bricks and mortar. It must be seen as something that exists in Fermanagh, Belfast, Antrim, Derry - throughout the Province - so the work we do in the centre building must be connected to all other cancer units and hospitals that deal with cancer patients.

633

Without central leadership and direction, the others cannot begin to follow. The problem is that we will not have a core direction or a symbol of quality for our society or the outside world. That is why the centre is so important. It will raise horizons for patients, caregivers and society.

634

The Chairperson: Thank you, Mr Coey and Prof Johnston. Your presentation has been most helpful. We are aware that some time has elapsed since the Campbell report was published. The Committee notes the list of key achievements. As you know, the Committee has discussed funding for the cancer centre on a number of occasions, the most recent of which was during a meeting with the Minister. The Executive and the Minister are looking at the Executive programme funds and, in particular, the infrastructure funds. I feel hopeful that an agreement on funding is not far off.

635

Page 39 of your written submission says

"A Full Business Case will be prepared in the near future to compare the cost of the private sector undertaking the development against the public sector comparative cost."

636

I hope that it will not take long. I appreciate that there are problems with it.

637

On the matter of research, I recall a memorandum that was sent between Dublin, Belfast and Washington in October 1999. We are aware that the cancer registries are important on an all-Ireland basis. That work is fantastic, as is the scholarship exchange training. Page 42 says

"A highly sophisticated Olympus microscope which is a key part of the system was donated to BCH by the manufacturer. The system, which will also be installed at St Luke's Hospital, Dublin, will enable remote real-time consultations with leading scientists and clinicians in the USA, particularly for rare or complicated cancers. The system facilitates video-conferencing, data transmission and the transfer of radiology and pathology images."

638

That is fantastic. I quoted that information so that everyone would be aware of it.

639

You referred to the great need for MRI scanners, and it is surprising that the City Hospital does not have one. We must be fair to the Minister - and you know about the financial problems as well as we do - but obtaining a MRI scanner must be a priority.

640

You mentioned men's cancer services, and the Committee is aware of the problems. Brian Garrett and others were involved with their development. When the cancer centre is finished it will be open to all men here who want advice on prostate or any other type of cancer.

641

About a year ago, staff from the Royal spoke to the Committee about positron emission tomography (PET) scanners. The City and the Royal are in absolute agreement about that.

642

How can progress be made towards an integrated, regional approach to cancer services? You referred to equality of care for people, whether here, in Fermanagh, or elsewhere. What can be done to reverse the flow of skilled staff from cancer centres to other areas of the Health Service?

643

Prof Johnston: We are building a cancer programme, so integration is key to its success. In the current system, much work is being duplicated. A patient could go to two different hospitals and have the same tests done. There is no need for that. One of the big obstacles is that we cannot transfer data. The technology exists to do that easily, and it is not very expensive. More importantly, we must be able to import computerised tomography (CT) images, chest X-ray images, MRI images and eventually PET images. Patients should not have to go to a cancer centre to plan radiotherapy, for example. If we could import images to the centre, we could arrange it remotely.

644

We do not have common identifier numbers for patients, although we would like to. We can protect patient confidentiality, but we need patient identifier numbers (PIN). These would help patients and would help staff to handle the data sets.

645

We need to be able to connect the City, the cancer centre, and the Royal with all the other hospitals, particularly other cancer units. The same computer technology must be used in all hospitals - each hospital should not be using its own post-acute care (PAC) system. What sort of co-ordinated planning is that? Individual systems are very expensive. Integrated solutions are much less so and facilitate better care for patients. For example, if a patient who has had a set of blood tests done at Altnagelvin Hospital were referred to the City, I would not have to order the same set of tests. I would need only to go online and enter the patient's PIN number and his results would come up on the screen. I would not have to repeat the chest X-rays or CT scans. The system would be cost-effective and would create a patient-centred service.

646

The final part of the jigsaw is the connection to the community. We keep talking about the lack of community, secondary and tertiary-care interfaces. This is the solution to that. If a PIN number exists, a GP can go online in his surgery and get the same information as the hospitals.

647

The second aspect of that is the development of disease-specific day treatments, for which we would gather together a large percentage of specialist expertise in the centre on one day a week. For example, 70% of the colo-rectal oncologists and the medical, surgical and radiation oncologists would be together for one day. The breast experts would get together on a Tuesday, the lung experts on a Wednesday. Suddenly, we would have a dynamic and critical mass to bounce ideas around in the one place. Patients would benefit from the uniformity of approach and practice created. Some of these people would work in the centre; some would work in the units. However, they would all hold a lung clinic on a separate day from the one on which the critical mass was created. Those two aspects are critical to the cancer centre's function to develop a co-ordinated programme for cancer patients in Northern Ireland.

648

Mr Coey: We are increasingly recognising the strength of communities in the war against cancer. For example, the uptake of screening is low in areas where people do not travel into a city centre. Where we can engage community groups in health promotion, in cities and rural locations, we can take cancer interventions to them in innovative ways. That is something that we are looking at in addition to the organisational arrangements that Prof Johnston has referred to.

649

Prof Johnston: In any changing Health Service, particularly where developments are "out of sync", nurses and other professionals begin to move. In this service, the tail is wagging the dog because we have developed units without developing the centre. We had the expertise, but it saw opportunities for further development in cancer unit hospitals and disseminated so the centre has had a problem with numbers and with the level and quality of expertise in a variety of professions. We are trying to address that. However, if we start to build a cancer centre, we will be a magnet not only for people from Northern Ireland, but also for people who have gone abroad.

650

People will see quality. It is not there yet. I tell people what we are doing, and they look out of my window in the City and see a hole in the ground. They do not see the dynamic. Once that begins, our ability to recruit very high-quality people will improve significantly, and my evidence for that is based on my experience in the research laboratory. I started with four people, and now have ninety, twelve of whom are from North America. We can recruit if we go about it in the right way, and if opportunities and challenges are available, people will come back.

651

Mr Berry: Thank you for your presentation. It was very informative. There seems to be broad support for the "hub and spoke" model for cancer services here, and Prof Johnston covered much of that today. How can we ensure that the relationship between the centre and the units and the smaller hospitals is a two-way street? How can we improve on that?

652

Secondly, when the construction of the cancer centre commences, will there be sufficient car parking facilities? Last night I had the pleasure of attending the opening of the new cancer unit in Craigavon where there is parking provision for patients. It was very private, of great benefit and would be of particular comfort to cancer patients. Along with the parking facilities, the privacy of the centre itself and its design represent a great model for future cancer services, and I know that much thought was put into it. As Prof Johnston and Mr Coey have said, it is not just bricks and mortar that help, but proper facilities for patients and quality care. Some may think this and the question of who will pay for it trivial, I do not. Neither do I believe you will think that.

653

Mr Coey: Let us take the hub-and-spoke principle. If you have a wheel, the hub is not more important than the spoke, for each is useless without the other. Mrs Henderson will address the importance of achieving the correct balance, and then Mr Brown will address the important topic of parking.

654

Mrs Henderson: The hub must take the leadership role. The hub-and-spoke model has evolved now, and the word used nowadays is "networks". While leadership radiates from the centre, as Mr Coey said, those on the rim are networked back to it. That is increasingly the path we are taking. We must take a definite regional lead on the development of networks for the benefit of patients. High-level care pathways work right down into those for low-level care.

655

I shall give a practical example. If you live in Enniskillen and need a blood sample taken, we should be able to organise that locally, obviating your need to travel. If we get the service well organised and managed, that is how we shall improve the quality of care to patients.

656

I shall give an example of the integration of primary and secondary care and the development of a network that is still evolving along those lines. You will be aware of the Macmillan GP facilitators who are now in each board area. We shall appoint a lead cancer GP at the cancer centre early in 2002. That person will work with the lead cancer team and will be the outward link from the hub to the GP facilitators across the Province. That is the sort of model we want.

657

Mr Brown: Parking at the City has been a thorn in everyone's side for some time. There are two aspects, the first being the approach to the cancer centre itself. Mr Berry's point seemed to be not merely about parking, but also about setting down, picking up and greater access. This has been addressed in our revised scheme and noted for the related costs. The main road runs past the door of the tower block and what will be the front door of the cancer centre. The new design changes that road layout, so we can provide a more discreet set-down and pick-up arrangement.

658

However, doing this unfortunately reduces the number of parking spaces, but the new cancer centre proposal provides for additional parking and multiple decks on the existing car park. For some time we have been dealing with this problem. Indeed, we explored a PPP solution to a multi-storey car park. We had to shelve that since from a cost-to-user point of view it would never have been acceptable. We are talking to a charitable organisation which knows our predicament and is keen to help us provide a multi-storey car park over the current facility in Donegall Road. That would allow us significantly to increase the number of spaces, specifically close to where the cancer centre will be, creating the discrete set-down and pick-up arrangement.

659

The Chairperson: The Royal could also use that, for it is only a short distance down the road.

660

Mr Berry: I am happy that those points are being addressed. It was tremendous that Macmillan and the hospital were on board last night. It was a two-pronged approach, and if one or the other had been missing, the project would not have taken place. Seeing the health professionals there, the doctors and nurses, will create better morale in the Health Service. They have this service and are keen to get started. If that is seen in other areas in the Health Service, it will attract more people.

661

Ms Hanna: Thank you for the comprehensive submission - we were already convinced, and that has been reinforced. I am excited about the new unit and looking forward to seeing it - hopefully we will get it very soon. I remember the excitement when the treatment unit opened in the tower block, and I am glad that you have been able to hold onto that. It has been difficult to wait so long, but we all support you. I am waiting impatiently for a lot of decisions on health, but nowhere more so than with the cancer unit. The longer we procrastinate, the longer we will spend catching up. You said it would take three years to complete after the first brick is been laid. It should have happened yesterday or last year, but it must happen very soon.

662

There is concern that you will lose trained staff if this is not up and running soon. It is inevitable that they will be attracted elsewhere. The open access clinics are a great idea and it will be good to have more. People worry about niggles - some are serious, some are not. However, they do not feel uncomfortable going to the clinics. This has been a good idea. If the Department says "Yes" tomorrow - and I hope it will - do you have all that you need for the new cancer unit?

663

Mr Brown: We are in the capital investment process. We need approval for an outline business case to enable us to produce a full business case. The full business case compares the private sector bid through the PPP process with a public sector comparator, and we are well on the way to producing that document. We had to revise the outline business case, therefore the public sector comparator is up to date and producing it will not be a lengthy process. We must get the outline business case approved and know that the money will be available - through whatever route. We will be ready to run when that happens.

664

Ms Hanna: I am pleased to hear you talk about duplication and getting the compatibility of systems - we need that.

665

Mr Coey: I had a telephone call recently to go ahead with the extra linear accelerators (Linacs) at Belvoir Park Hospital, as long as they can be moved to the centre in due course. The contractors will start on Monday, so we will be fast in our response.

666

Prof Johnston: Technology development is moving quickly in the cancer area. What we would have put down on paper three years ago is not the same as what we would do today. However, we have built arrangements into the cancer centre development for the next 25 years through PPP. We are ensuring that we have the flexibility to update our equipment in such a way that we can help develop the new technology - not just get it when it has been developed.

667

We must find the increased staff to man the technology. Getting two extra Linacs in Belvoir Park Hospital does not help if the staff is not there to manage them. The medical, nursing and radiography expertise does not exist today. People have to be trained for this technology, and there will be a delay while that is being taken care off. Everyone must appreciate that we are not only talking about putting in extra machines, we are talking about getting increased expert staff in place with the appropriate training to deliver that type of care.

668

Ms Hanna: I hope that you get the go-ahead for the plan soon. Will you be able to start training some staff then?

669

Mr Coey: That has already started. A workforce plan, which runs over a five-year period, is constantly revised and updated.

670

Ms Ramsey: I thank the panel for the informative and in-depth presentation, which answered some of my questions. Prof Johnston covered some research issues that I wanted to raise. The involvement of the patient and the community was mentioned. At a presentation last week, GPs said that there is a lack of communication between patients, the hospital and the GP from when patients are diagnosed, through their treatment, until they are discharged. He mentioned how information technology (IT) could help, but the problem arises when a patient diagnosed with cancer, associates with a GP, and that small movements can make big improvements in services.

671

Prof Johnston: That is a fundamental problem that goes beyond cancer services. The problem could easily be solved with a co-ordinated development IT solution for health delivery in the Province. The technology is there. In 1988, I was able to do all health delivery in the United States through a computer. Why are we not doing that in 2001 in Northern Ireland - the systems are there? There is no reason why patients must be put through two CT scans, or an MRI and a CT scan, if it is not medically indicated. That often happens when X-rays cannot be found because they are elsewhere in the hospital - or elsewhere in the country.

672

You asked how the patient service dimension could be practically dealt with. A patient moves from home, through a GP's office, to a surgical consult and into the cancer unit and then back through all of that. It is hard to cover all those things effectively in the current system. The day hospital is the engine of cancer care. We endeavour to give patients letters for their GPs so that the information is actually in their hands. Sometimes it works well; other times it does not. We must work much harder at that.

673

Mr Coey: I agree with Prof Johnston's point. Some GP practices are linked in with ward 7. When a patient is discharged, an electronic transmission sends data to that patient's GP about the patient's needs regarding physiotherapy, drugs and the up-to-date state of their health on leaving the ward. The GP and the support staff have that information before the patient arrives home. We want to achieve that target for everyone.

674

In one case, a patient complained that they were still awaiting test results after six weeks. The patient's doctor told me that the results were all clear but the patient did not know that, and had had six weeks of misery wondering if they were all right. The doctor had been concentrating on telling patients bad news, but I told him that the good results were just as important. I completely agree with your point. We must continue to invest in information infrastructure, and just this week Prof Johnston, Mr Brown and I were at a meeting about informatics for the cancer centre.

675

Ms Henderson: IT solutions are suggested all too often. While that is critical, if there are no administrative and clerical staff to input the data, then IT will not make one iota of difference. You have already heard about the patient-held records. In the interim, we must come up with other systems because we do not have a proper IT system or clerical staff support.

676

Ms Ramsey: Can a copy of the GP presentation be given to these witnesses? GPs came up with simple solutions to the problem, in their opinion. GPs receive a letter from the hospital, and then relate that information to the patient.

677

The Chairperson: That is a good idea.

678

Mr J Kelly: This presentation has been one of the clearest that the Committee has heard. The report identifies the problems in the Health Service, and it has been worthwhile and has helped us tremendously. The Committee has a vested interest in cancer care as some of my Committee Colleagues and I have been through the trauma of cancer. I have never thought of the problems connected to cancer care.

679

The report explains clearly where funding goes. The Committee is confused about funding - it will not be the panacea, or the only thing about which we must know. We must know exactly what the funding is for before it can be released. If there were medical canonisation, medics should be canonised. Cancer care covers many disciplines, as there are many types of cancers, such as brain tumours, breast, stomach, lung, testicular cancer. It is an emotive issue - we get angry and frustrated about it and play the blame game.

680

You mentioned a collaborative and integrated approach, so what is the most important piece of advice about the health service that you could give? We try to reconcile the different conflicts in the medical profession, for example, the situation in Fermanagh and Omagh or the City Hospital and the Royal Victoria Hospital, and we lose sight of the importance of health and how it should be delivered at the point of need.

681

Mr Coey: I never thought that I would be the chief executive of a big institution such as the Belfast City Hospital - that was beyond my dreams. Even when I applied for the job I did so reluctantly. I regard myself as a humble layman, and the report is easy to understand because laymen wrote it.

682

I once drove Sir John Badenoch, one of the most distinguished physicians of our time, to the airport after he had given a talk in the undergraduate medical theatre. I told him that I was a layman who struggled with some of the things that come my way, but I could understand everything he said. He said that the emotional or complicated things that doctors or others may say - if the ideas cannot be put simply - should never fool people. He also said that if you say that something is a priority, you must prioritise it. That is the kind of advice that I pass on.

683

My heart goes out to those in mental health care. I would love to do more work for Windsor House but tackling the cancer issue would make a difference for the greatest number of people in our community - I know that, so that is where my energies are concentrated. That does not mean that a person who is suicidal or suffering from panic attacks is less important. They are important. However, my priority is cancer treatment. When people such as Prof Johnston or Ms Henderson come to me with arguments that I can understand, I am convinced. I can put those arguments with conviction to the Committee and the Minister, because I really believe that it is the right thing to do. That is the only advice that I can give you, it is too big a question.

684

Mr J Kelly: From your notion of collaborative and integrated approaches, can a case be made for a collaborative approach within the medical disciplines to rectify or cure the whole Health Service?

685

Mr Coey: Certain people used to accuse me of being too nice or too accommodating, because I have a reputation for believing that if you can make your enemy your dear friend, you have won the battle. I believe that with all my heart, and it is at the heart of my work in communities and things like that. I have found that it works, and it can be done, although it is not easy.

686

Not all competition in the Health Service was good - it was partly good. You see the same thing in your own political parties when you discuss and tease out issues. You compete and that is right and proper, because it is healthy. However, if you can build friendships, you have really won. That is the case in the Health Service. If we are competing negatively, we are failing. If we compete in a healthy way, we can advance the greater cause, which is the relief and prevention of illness. That is our biggest goal. I sometimes say that the National Health Service is the wrong name, it should be the National Sickness Service, because we are not investing money in sickness prevention. We must move towards that, and that is emphasised in the document.

687

Mr J Kelly: I asked the question, because I believe that you are competing negatively, and that is creating a negative attitude right across the Health Service.

688

The Chairperson: We certainly will not compare political parties in this discussion. You mentioned health promotion, and Mr Kelly referred to my favourite topic, which is the lack of co-ordination of health promotion in Northern Ireland. The Health Committee does its best, as does the Health Promotion Agency, but it receives only an infinitesimal amount of funding.

689

Rev Robert Coulter: Thank you for coming today, and congratulations for presenting an excellent submission. I can assure you that it will be a good reference point for me. We have covered a lot of ground today. Apart from the absence of the new cancer centre, on what major aspects of the Campbell report has there been a lack of progress? What has impeded development in these fronts? I would like you to amplify that.

690

Prof Johnston: That is a good question. Trying to practice twenty-first-century medicine in a nineteenth-century facility is still at the top of the list. Aspects of the Campbell plan have been implemented well. Multidisciplinary teamwork is definitely here to stay, but as I said, it is better in some disease areas than others. I would point to breast and gynaecological treatment as two optimal areas. More work could be done for integrated multidisciplinary teamwork in Gastrointestinal (GI) treatment, but that is beginning to happen in a way that I could not have talked about 12 months ago. For example, good work on lung cancer is beginning to happen. We must look carefully at our ability to deliver multidisciplinary teamwork everywhere. We do not have the range of staff in every hospital to facilitate it. Nonetheless, the philosophy is now embedded in each profession and among different professions. That is very important, because it is connected to the collaboration that Mr Kelly asked about.

691

If you do not do multi-disciplinary teamwork - and some people do not like doing that - then you are not a collaborator. People who collaborate and work in teams do the best research and cancer treatments. That is working well. It has been complicated by the fact that units have developed first. So there are now modalities of care that have developed in cancer units without reference to a central point. We must go back to the drawing board in some respects with the cancer centre, particularly with the C floor development that will happen during the next 12 months. We must go back and develop the "hub and spoke" relationship with regard to disease specific modalities and multi- disciplinary care. That is going to be a problem for us.

692

The Campbell report has not yet delivered in the creation of patient-centred care. Part of the reason is, of course, the absence of a cancer centre. However, it is also connected to other issues that I have raised with the Committee - that those in the cancer centres in Belfast City Hospital cannot talk to those in the Royal Victoria Hospital, Altnagelvin Hospital or Erne Hospital. There are aspects of care in hospitals that are not even designated as cancer unit hospitals. We do not need to do everything centrally, and we certainly do not want to because if we try to do everything, we will fail. We must focus on what we can do better than anywhere else and what we are uniquely qualified to do and drive.

693

Some of those things must then happen in relation to what goes on in the units. The activity might start at the centre but most of it might happen at a unit, or several units. That particular aspect is vital. We must get our ambulance services up to speed - taking patients back and forward in a way that is not inconveniencing them and their families to a significant extent. We certainly must get the parking sorted out at Belfast City Hospital. The walking of a patient through the service has to be done critically, and also critically appraised down the road.

694

The final area I would point to is what I call the patient pathway, which is connected to what I have just said. Patient pathway does not start in the GP's surgery - it starts in the patient's home. The patient must know whom to call. One of the first things that we implemented in the Belfast City Hospital was a bypass of the emergency room of the casualty unit because I did not want cancer patients getting stuck at a level of care where their acute needs would not be understood. There is a direct call from their home to the centre or the cancer treatment unit.

695

We need to begin to build care pathways for patients that are transparent - transparent to the patient, GPs, the nursing community, medical and radiation oncologists. This also applies to other professions such as respiratory physicians, gastroenterologists and other surgical colleagues because they are all part of the diagnostic work. We currently do not have that, and that is an area that we are going to have to work hard at.

696

Rev Robert Coulter: I am glad to hear that because I spent half a day today with the Northern Health and Social Services Board researching treatment trails. What are you doing to bring the GPs on board?

697

Prof Johnston: There have been a variety of initiatives with GPs for the last three years. Macmillan Cancer Relief has played a significant role in trying to educate GPs. In fact there have been a growing number of GP cancer dedicated physicians in place over the last three years.

698

First the general practice community needs to begin to identify GPs who are going to take a specialist role. In other words, we as cancer clinicians in hospitals need to be able to begin to identify colleagues working in the community who are going to stand up and take a lead role. That has not really happened yet. Some people are beginning to stand up and take that role, and some GPs are playing a role. For example, Dermot Davison is core to the cancer centre development and has been from day one. We need more such people to stand up.

699

We need to get them together with their cancer unit hospital, because that is their first referral point. We have to bring a selection of them together with cancer unit people from the cancer centre, so that pathways can be developed. This goes back to the integration that I have been talking about. If we spend £60 million building a cancer centre, we must also build an integrated care pathway for patients. We must bring that level of complexity to our service over the next three years, and bring in the general practitioners so that we are all tasked to come together and build those pathways. We are trying to do that at the moment, but each board is acting independently.

700

Rev Robert Coulter: That is what worried me this morning.

701

The Chairperson: Yes, there is this lack of uniformity.

702

Mrs Henderson: I would emphasise what Prof Johnston was saying, but much more is needed. The GP facilitators funded by Macmillan Cancer Relief in each of the four boards is a start. A lot more work needs to be done, and we need more dialogue between primary care and secondary care providers.

703

Mr Gallagher: What are the current shortcomings in the delivery of palliative care, and what are the main components of managed clinical networks of palliative care? I want to talk about the shortage of pathologists. The Belfast Link Laboratories is understaffed and below the recommended level. The number of consultant staff at Belfast City Hospital is below the recommended level. If some people were trained up now, they would come on stream in five years' time, but that will be a serious problem over the next five or six years. Can anything be done over that period to improve the staffing levels for pathologists?

704

Prof Johnston: I will address the palliative care issue first. You cannot develop a cancer service unless you develop palliative care services. Palliative care services are not just for cancer patients; they are much broader than that. There has been a reluctance to develop palliative care in an integrated fashion within the medical profession, but thankfully that is dying out. Palliative care is absolutely essential, and is part of the ongoing journey of a cancer patient. If you see palliative care as something at the end of the cancer journey, you are getting it wrong. A palliative care service has to be visible to a patient throughout. That is one of the reasons why we built the Macmillan Cancer Relief palliative care office in the middle of the medical oncology unit - the cancer treatment unit - in Belfast City Hospital. It is all about being an equal partner playing a significant role in a patient's journey.

705

Traditionally, palliative care services were funded by the charitable sector. Government has never properly funded them, and it is a travesty that people who need it most cannot get the care they require. I believe there are aspects of palliative care that should not happen in a large acute hospital - they should happen either at home or in a hospice setting. The needs of the patient are better cared for in that environment. The hospital must be integrated with the community in order to effect that type of transition and create a seamless type of care. That is what we must strive for. Palliative care needs more consultants; dedicated palliative care nurses and also palliative care community nurses.

706

Finally, hospices need to get away from seeing themselves as individual entities. I understand their point of view because they need to raise money to remain viable and care for patients, but they must begin to integrate with each other to help provide the service.

707

Mr Coey: Many hospitals on these islands would be pleased to have our eight pathologists. The good news is that people are training and will come through in five years. Our team is teaching a number of these new pathologists, and I was with some yesterday afternoon who are being trained at Queen's University of Belfast. In the past workforce planning was missing. Forward planning is essential for these highly expert staff. All staff providing a service need to be valued.

708

It is interesting that on leaving hospital the patient often talks to me in glowing terms about the domestic assistant or nursing auxiliary on the ward, even though they may have been under the most distinguished cancer expert. It is the people on the ground who make a huge difference - even the porter who takes the patient down from the ward and makes them feel important. Staff morale is as important as the provision of facilities. The issue is not just the money you pay staff, they need to feel valued and appreciated. Like most organisations, the Health Service has to work harder at that.

709

Pathologists also need to be considered. They have had a hard time and feel a little bruised by all the organ transplant problems reported in the media. Many of them have done their best with staff shortages, but feel that the entire profession has been tarnished by events that were not handled well by certain colleagues. A machine cannot give a total picture of the patient, and there is no doubt that if you can get a first class pathology report from a first class pathologist you have a good cancer service.

710

Prof Johnston: Events have also moved ahead in the IT field - the pathologist does not need to be present in every hospital anymore. Telepathology can now transport images from a distance. Yesterday I was looking at pathology images being shipped from Florida. I am not a pathologist but we were playing with case conferencing. The point is that local community hospitals can complete the technical aspects themselves but the expert diagnosis can be made remotely. With all aspects of health care the expert does not necessarily need to be beside the patient. The co-ordination of workforce planning, and how to build critical mass, needs to be considered because that is where the training is going to happen. Those aspects need to be tackled seriously.

711

Mr Coey: Pathology laboratories are making good progress in using IT. In the Belfast City Hospital the wards can be advised of test results through IT. Results can be picked up at the ward station rather than having to write a report and physically send it up.

712

The proposed pneumatic tube system for links between the services in the Royal Group of Hospitals and the Belfast City Hospital is important. Samples will come down automatically from the wards in a complex pneumatic system to a central point and then go out to the laboratories. The analysis is carried out and then IT puts the result on the ward station. That makes the whole system work more smoothly.

713

The Chairperson: Is that the system currently working in the Causeway Heath and Social Services Trust?

714

Mr Coey: Yes, that is correct.

715

Ms Armitage: Your positive attitude to the problems comes across very clearly and that is good. Why, with better lifestyles and diets, is there an increase in the number of cancer patients, particularly breast cancer? Has the treatment of that changed much over the years? Is it possible to identify the failure to recover of some breast cancer patients? Is there any evidence that aftercare and the patient's attitude aid recovery in any way? My cousin who was aged 51 died yesterday of breast cancer. Why do some recover and not others? Is it to do with detection of cancer at an early stage?

716

Prof Johnston: Those are very important issues, and are at the core of our evidence. I wish I could tell you otherwise, but the incidence of breast cancer continues to rise, and we do not have a complete answer for that. We have an ageing society; women have fewer children; we have high fat diets despite what is happening; and in today's western society there are environmental factors that we do not yet understand. I plead ignorance.

717

Fundamentally we do not fully understand the reason for the increase in the incidence of breast cancer, but it is happening in all western countries and in the United States. My belief is that it is largely environmental and dietary. We can make a comparison with society in Asia, where the incidence of breast cancer is somewhat lower. We know that if someone moves from Japan to Northern Ireland, the United States or Europe, her risk of developing breast cancer increases in her lifetime to that of the indigenous society. That tells us that something inherent in what we do presents that risk.

718

Although cigarette smoking is a low risk, females are smoking more while men are smoking less. I believe that contributes, even though it is hard to find the element of that risk in its entirety. Cigarette smoking accounts for some 70% of cancers. If everybody stopped smoking in Northern Ireland, 85% of lung cancers would be gone in 15 or 20 years - I stand by that statistic. That would be better than any chemotherapy or radiation therapy, or anything else I can give. I also know that the risk for head and neck cancers, bladder cancer and probably breast and stomach cancers would also begin to fall significantly. That set of diseases is the impact of the cigarette and tobacco lobby on the health of our society. A single thing that we as a society could do is make cigarette smoking a very bad habit, something that everyone in our society and our children say is terrible. It is having a negative impact on our ability to decrease the problem of breast cancer.

719

The treatment of solid breast cancer has been one of the positive stories of the last 15 years. Survival rates in Northern Ireland are now among the best in Europe, and are better than anywhere else in the UK. Our five-year survival rate is 78% to 79%, which compares with anywhere in the western world, and we can be proud of that. One of several reasons for it is that 10 years ago we implemented a breast screening programme which reaches most of our society, although there are some poorer parts where takeup is not as good as I would like. There is room for further improvement.

720

We now diagnose breast cancer earlier. Our surgical techniques are less mutilating. Radical mastectomy was quite common in the 1980s and is now virtually unheard of. We can now do a lumpectomy or a segmentectomy, and that is good for the psychological attitude of women. There are better treatments by new chemotherapeutic drugs to contain or eradicate systemic disease, so that where the disease is diagnosed at an earlier stage there is a much better chance of cure. If following diagnosis the disease is contained in the breast - or even if it has spread to some nodes - there is a 65 % to 70 % chance of curing it. That is phenomenal, and is very different to the situation 15 years ago. There have been major advances in the treatment of breast cancer, and there will be even more good news stories in the future.

721

The psychological attitude of breast cancer patients, and other cancer patients, goes to the heart of what we are talking about. Psychology is important to the treatment of cancer. I cannot prove that, but as a medical oncologist, I can tell you that it is a lot harder to bring a person through tough treatment if his or her psychological attitude is not good to start with. If a person comes for treatment with a doom and gloom attitude - believing that he or she will not recover - there is no question that that person is significantly different from a patient with fighting spirit.

722

Belfast City Hospital, and the new cancer treatment centre, have shown patients that there is a fight and they will give it their best shot, but this is the struggle in Belvoir Park Hospital. The environment is really important in the battle against cancer, and that is why I referred to the programme, the centre and the symbol of high quality. It will show patients and staff that we can defeat the disease.

723

Mr Coey: There is a social issue. In socially deprived places in big cities and rural areas, it is sometimes found that people do not come forward for screening, and there is a loss of self-image, self-worth and self-esteem. The uptake for breast screening, and other types of screening, in the poorer areas is low. Often, that is where you will find endemic smoking because peoples' self-image and self-esteem is low. They believe that they have no chance of getting a job, and nobody cares about them. That is not true of all of those communities, but it is an issue that must be tackled.

724

I have spoken to a lot of people about how we can help to promote the health benefits of screening for cancer and other illnesses in the more deprived areas. It is easy to assume that the densely populated estates are the deprived areas, but that is not always the case. However, the deprivation affects the uptake of screening and smoking and, to a certain extent, the will to get on top of the illness.

725

Mr Gallagher: How can we ensure a better uptake of screening programmes in the sections of the population that you mentioned?

726

Mr Coey: Community groups are powerful tools that should be used. Women's groups working in community centres can arrange for people to attend one of our mobile breast screening units. The problem lies in encouraging the people to come. We do not want to reach down and help them because that only further emphasises the loss of self-value. It is important that people raise their own targets, particularly in the battle against cigarette smoking, which none of the western countries have really tackled.

727

The situation in other countries is worse. Belfast City Hospital held a conference in the Waterfront Hall, and the director of public health from Finland said that the only effective campaign for the prevention of lung cancer and smoking was - "would you want this to happen to the person whom you love the most?" It was not directed at the smoker; it asked whether the smoker would want his or her loved one to suffer from the illness. There was a national decline in cigarette smoking in Finland as a result of that campaign. I wish that I knew the answer to the problem, but that is the best solution that I have seen.

728

Prof Johnston: We could also ban cigarette advertising, which is one of the most powerful things that we, as a society, have not taken on politically. We have to say no to the tobacco lobby, as the people in Finland did.

729

The Chairperson: They said no in Australia as well.

730

Ms Armitage: Are you saying that if a woman has a lump it does not necessarily mean a mastectomy?

731

Prof Johnston: That is correct.

732

Ms Armitage: Has that proved to be better health care?

733

Prof Johnston: Yes. Firstly, in a psychological context, there have been many studies published showing that a woman who has a partial mastectomy, lumpectomy and reconstruction carried out has a better psychological outcome than someone who has had either radical mastectomy or mastectomy.

734

Secondly, with regard to the outcome from treatment, partial mastectomy or lumpectomy, in the situations where it works, has as good if not a better outcome with regard to local control, as well as survival. Therefore there is no medical reason not to do it. Those studies started at the National Institutes of Health with Dr Paul Studebaker in 1985 and the first trials were completed in 1988.

735

Mr J Kelly: I have a question relating to what Ms Armitage was saying. Prof Johnston stated that radical surgery is not being used so much as treatment for breast cancer. However, my question is to do with male cancers. Has radical surgery in prostate cancer lessened or is it still the norm?

736

Prof Johnston: It is changing. The degree of surgery for prostate cancer depends on where the cancer is. For example, if the cancer affects the capsule of the prostate you may not need to have surgery at all; radiotherapy might be more appropriate. However, radiotherapy can be given in a conformal way, where the beam is directed to the cancer, rather than causing the side effects of a beam that is splayed.

737

Another treatment that has been developed and has been in vogue for four years in select centres in the United States and in one centre in the UK is prostate seed implantation. Many men are now opting for prostate seed implantation due to the low morbidity associated with that approach. The outcome with prostate seed implantation is excellent.

738

Mr Coey: We will be carrying that out in the new centre.

739

Mr J Kelly: Five or six years ago it was common that, on a grade from one to 10, if you had a cancerous growth that was at three or four you would be recommended for radical surgery. Are you saying that is not the norm anymore?

740

Prof Johnston: That does not hold in today's world.

741

The Chairperson: What Prof Johnston has said on the cigarette issue is important. The advertisements we have seen for road accidents and drink-driving are powerful, and is something we would like to see with cigarettes. We need an image that really gets the message across. I understand they have been doing that in Australia, and there has been a decline in lung cancer.

742

I want to finish by thanking Mr Coey, Prof Johnston, Mr Brown and Ms Henderson for answering our questions. We have been fascinated by your presentation, and we thank you most sincerely for that. As we said earlier it is the most important part of our review of the delivery of cancer services, and you have our total support at all times.

Wednesday 5 December 2001

Members present: Dr Hendron (Chairperson)
Mr Gallagher (Deputy Chairperson)
Mr Berry
Ms Hanna
Mr J Kelly
Mr McFarland
Ms Ramsey

Witnesses: Mr W McKee ) The Royal Group of Hospitals
Mr J McGuigan )
Dr K Kaur )
Dr A Nugent )
Ms B Clyde )
Mr J Stewart )

743

The Chairperson: You are welcome to the evidence session, and we thank you for the use of this facility here in the Royal Victoria Hospital. Your documentation has been extremely helpful. After you have finished your presentation we will ask some questions.

744

Mr McKee: I will start by introducing our team. I am William McKee, the chief executive. Mr Jim McGuigan is the head cancer clinician, and Dr Karem Kaur is a palliative medicine consultant. Our three aides are Dr Ann Marie Nugent, a consultant respiratory physician, Ms Barbara Clyde, a Macmillan lead-cancer nurse in the Royal Group of Hospitals, and Mr John Stewart, a general manager with particular responsibility for the co-ordination of cancer services across the site.

745

I am grateful for the opportunity to give evidence to the Committee. I am not going to go through our submission, as that would not be the best use of your valuable time. I will briefly set the scene, before handing over to Mr McGuigan and Dr Kaur.

746

First, I want to lay aside from our discussion today the issue of the Belfast City Hospital's cancer building to provide radiotherapy and chemotherapy services, and to allow the withdrawal from Belvoir Park Hospital. We strongly support that development - it should have happened some time ago. It is badly needed to consolidate and strengthen those important aspects of cancer care. I do not want there to be any ambiguity about our strong and earnest support for that to happen promptly.

747

Chemotherapy and radiotherapy are only one aspect of cancer. It is probably best seen as a journey for a patient, rather than as a building or a set of services provided by clinical staff. Imagine two people in two different lands, so to speak. One is in a region where high importance is given to environmental and lifestyle factors influencing cancer - notably smoking. This person is well informed about cancer issues. Nevertheless, they get a suspicious lump, a persistent cough or a change of bowel habits. They visit their GP, who is concerned and refers them to a specialist. They are seen promptly within two weeks and receive prompt investigation and diagnosis. A team comprising a physician, a surgeon, an oncologist, a radiologist and so on agrees a programme. There is prompt surgery by a specialist with expertise in that field, followed by chemotherapy and/or radiotherapy. The side effects are well controlled with little nausea. There is psychosocial support, and there is a good outcome. If there is not a good outcome then there is proper palliative care and amelioration of the symptoms.

748

Consider the other patient. They are not well informed, and they are not in a region where there is a coherent strategy involving environmental and lifestyle factors. That person is probably a smoker and is probably overweight. They ignore the symptoms until a family member presses them to attend an overworked GP, who may dismiss them the first time round. It is not until they go back for a second time that they are finally referred. There is then a long delay. They are not seen by a specialist; there is no co-ordination of their treatment; there is poor management; the cancer in at advanced stage; there is poor pain control; the patient receives little support and no palliative care; and they die without dignity and in pain.

749

We have to see cancer as a journey for a patient, involving all of those aspects. We have to get all those aspects resourced and co-ordinated. In the Royal Victoria Hospital we provide the cancer services for children and much of the cancer care for adults. We do about two thirds of the volume of inpatient work that the Belfast City Hospital does, and usually twice as much more than any of the other cancer units at the Ulster, Craigavon, Altnagelvin or Antrim Hospitals.

750

The Royal Hospitals are the major providers of surgical intervention, particularly for less common cancers. Jim McGuigan will explain the significance of the Royal Hospitals' role in the provision of cancer care.

751

Mr McGuigan: Thank you for coming here. I am pleased that the Committee is willing to take our oral evidence. It is five years since the very welcome Campbell report was published in the hope of improving the services to cancer patients throughout Northern Ireland. Following that report, it was hoped to establish four cancer units. Those were to be located at the Altnagelvin, Antrim and Craigavon Hospitals, in addition to the dual role of the Belfast City/Royal Hospitals as a cancer unit and cancer centre. It is important to remember that the definition of the regional cancer centre is the Royal Victoria Hospital working closely with Belfast City Hospital. We are pleased that there are better links among the hospitals, and we know that they can be greatly improved.

752

There are many common misconceptions about cancer. For the majority of solid cancers, the most effective treatment remains surgery. That will continue to be the case for the foreseeable future. There has been insufficient emphasis put on developing cancer services, not only in the Royal Victoria Hospital part of the cancer centre but throughout the cancer units in the Western, Northern and Southern Boards.

753

There has been poor reflection on the results that we have obtained in the past. Many of the good results of Northern Ireland's cancer treatment system have not been recognised. Good results have been seen from the work of the gullet surgery team to which I belong. With the emphasis put on the centralisation of gullet surgery in the Royal Hospitals, as well as the Craigavon and Ulster Hospitals, in the 1980s and 1990s, we began to see much more innovation.

754

The role of oesophageal nurses was developed, an oesophageal patients' association was established, and the results of the unit were published in international journals. Despite a shoestring budget, small amounts of research funds resulted in the unit producing first-class publications. The Northern Ireland Cancer Registry has published the results of work on oesophageal cancer in Northern Ireland between 1993 and 1996. Despite the poor reflection of Northern Ireland's cancer services that I have read elsewhere, the gullet results here were the second highest in Europe, beaten only by southern Sweden. I have not seen that reflected in literature that I have received from elsewhere.

755

What happened to the gullet surgery service in the Royal Victoria Hospital was that when the hospital became overwhelmed with trauma cases, it did not have sufficient intensive care unit beds for patients. We found ourselves in the scandalous situation of having repeated cancellations of oesophageal surgery, which even made its way into 'The Observer'. The shortage of intensive care unit beds must be addressed urgently.

756

The lung cancer unit is another aspect of the Royal Hospitals' service. I am pleased that Dr Ann Marie Nugent is here today, because not only is lung cancer an under-recognised problem but it is still way ahead of any other cancer as a major killer here, although oesophageal cancer is our fastest growing killer among the cancers.

757

Another large burden is lower bowel cancer. We have a large surgical unit in the hospital. A unit does not only consist of consultants. I am grateful that the Committee listens to consultants, but it must be realised that the consultant is only one person among huge numbers in the teams. The colon cancer unit in the Royal Victoria Hospital has been strengthened in recent years by the appointment of Prof Charles Campbell. He is an internationally recognised researcher, who has received millions of pounds for cancer research from agencies such as the Cancer Research Campaign, the Wellcome Trust and the Medical Research Council among others.

758

The interesting research that Prof Campbell hopes to carry out will eventually benefit the whole community. He is interested in early intervention and prevention because the later down the cancer journey that you intervene, the more expensive the intervention and the less likely the cure.

759

High standards of surgery are present not only in the Royal Hospital but also in the four area boards. Bowel cancer survival rates in Northern Ireland are higher than in the rest of the United Kingdom. That is mostly due to good management by GPs, early referral by patients and good surgical standards. In areas other than surgery, we have skin specialists with a particular interest in melanoma. We are grateful for the Northern Ireland Cancer Registry's data that shows that in Northern Ireland the survival rate for melanoma is higher than for most areas in Europe and higher than in other areas of the United Kingdom.

760

We have made great strides to establish cancer research and cancer services at the Royal Victoria Hospital. However, there is an impression that our efforts are not being recognised and that our research and service are under-resourced. We feel that we have the skills, the knowledge and a strong research base but that we are deprived of resources. I did not deliberately leave out other elements of the cancer journey, but we are fortunate to have a specialist in palliative cancer care, Dr Karem Kaur, and I would now like the Committee to hear evidence from her.

761

Dr Kaur: Palliative care is the active total care of patients and their families by a multi-professional team when the patient's disease is no longer responsive to curative treatment. It does not only occur in the terminal phase - it may commence at the time of diagnosis. The input of palliative care varies considerably according to patient and family needs, and the length of time spent providing the care can vary from several weeks to months or years.

762

The Royal Victoria Hospital's specialist palliative care team consists of two Macmillan nurses, who provide the adult palliative care service; one neuroscience Macmillan nurse; one oesophageal Macmillan nurse; two paediatric Macmillan nurses; and two lung specialist nurses from Belfast City Hospital, who also see all patients with lung carcinoma here in the Royal Victoria Hospital; and myself. I have a joint appointment covering the Royal Victoria Hospital and the Northern Ireland Hospice. We also have palliative care-linked professionals in other disciplines, such as a social worker, a physiotherapist, an occupational therapist and a chaplain. We recently obtained funding for administrative support.

763

The team's role is multifaceted. First, it provides direct patient care and support to improve the quality of life for patients and their families by managing difficult symptoms, such as pain, nausea, vomiting and breathlessness. It also manages the care of patients who are in the terminal phase of their illness, including their choice of place of death.

764

Secondly, the team provides assessment and advice for hospital staff on the management of pain and other symptoms through both informal and formal education. Thirdly, we provide liaison to inform and assist the community-based hospices, GPs, district nurses, our palliative care colleagues in the community, social workers and the hospital. We are currently looking at the most effective methods of communication for disseminating information when terminally ill patients are discharged from hospital into the community. We are doing so with the help of our GP and district nurse colleagues.

765

We also assist in co-ordinating and advising on the discharge of cancer patients with complex needs, and assessing patients for transfer to units such as the hospices and other institutions. We provide education to all staff at both undergraduate and postgraduate levels, and we provide staff support for challenging cases and those involving ethical dilemmas.

766

Annually, the Royal Victoria Hospital receives more than 50% of all the palliative care referrals made to Belfast City Hospital, Belvoir Park Hospital and the Royal Victoria Hospital. The numbers are rising every year, especially with the recent introduction of the site-specific Macmillan nurses, such as the oesophageal and neuroscience nurses. Of the 545 new referrals, 66% were referred by hospital nurses, 20% by hospital doctors, 7% by our community colleagues - including GPs and our palliative care colleagues - and 7% through self-referral or through referral by relatives or other health professionals in the hospital.

767

At what stage in the patient's illness is the referral made to our team? First, when the initial diagnosis of cancer is made through medical investigations. Secondly, through cancer surgery involving, for example, cancer of the gullet, stomach, bowel, brain, head and neck. Thirdly, when patients are admitted via the acute take-in system with problems that may be directly or indirectly related to the cancer, and, fourthly, when patients in the fracture ward present with a pathological fracture with either a known or unknown underlying cancer diagnosis.

768

The future implications for our team are huge. The incidence of cancer is rising. Palliative care services must expand and develop proportionately in order to provide the best seamless, consistent and equitable care for patients and their families. To do that, we require funding for another consultant in palliative medicine, as well as funding for more Macmillan nurses. Unfortunately, funding for a third Macmillan nurse was recently withdrawn by Macmillan Cancer Relief, as there was no continuation of funding from the Department of Health, Social Services and Public Safety. We also require resources for investment in IT so that we can co-ordinate with other units to enable easier access to patient records and information. That is vital if we are to be able to continue to provide the best possible care for cancer patients and their families.

769

The Chairperson: Mr McGuigan mentioned the fantastic results for gullet cancer, of which not many people are aware. You also mentioned research, and we must bear in mind the memorandum that was signed by the Health Ministers in Dublin, Belfast and Washington, and the role of the National Cancer Institute in that. We know that much research has been undertaken and is planned in Belfast City Hospital, although I appreciate that the Royal Hospitals and Belfast City Hospital are parts of the one centre. What role can research play in developing our common goal of a world-class cancer service in Northern Ireland, and are we learning from clinical advances elsewhere?

770

Mr McGuigan: It is good that you recognise the problem with research for clinicians. Basic clinical research is less attractive to charities and other agencies than other, more exciting, cancer research. That is not only a problem in Northern Ireland, but elsewhere too. Many of us are finding it increasingly difficult to attract funds, given the competition from the more attractive alternative priorities that the cancer agencies have. We see no easy solution to that problem. We would be glad to avail of any opportunities that may be open to us through the National Cancer Institute and the Departments in Dublin and Belfast working together. However, we do not see any easy access to funds for basic clinical research projects in Northern Ireland - projects that could give information to our Health Service. Sometimes people look for bigger answers than can come from the smaller scale clinical research.

771

Mr J Kelly: Thank you for your presentation. Before you came in, we were talking about funding and the difficulties involved. Dr Kaur mentioned the need for more palliative care nursing and also another discipline.

772

Dr Kaur: Another consultant in palliative medicine.

773

Mr J Kelly: Have you been able to quantify how much money would be needed? We have the difficulty of people asking for additional funding but not quantifying how much they are looking for.

774

Mr McKee: I will ask John Stewart to comment on that. We have been carrying out a large exercise, as have other cancer centres, to quantify what is needed to bring cancer services up to a requisite standard.

775

Mr J Kelly: I will explain my reason for asking. The Committee is faced with the argument "Why give funding when we do not know where it is going?" It is important to identify where the funding will go.

776

Mr Stewart: The Department of Health asked the Campbell commissioning group for a cancer workforce plan for 2001-05 to find out how much money was required to complete implementation of the Campbell report to change and improve cancer services in Northern Ireland. The cancer centre - the Royal Victoria Hospital and Belfast City Hospital - and the cancer units were asked to submit a workforce plan. We researched that by considering requirements detailed in papers from the Department of Health, the area boards, the regional advisory committee on cancer, the royal colleges, speciality and sub-speciality advisors and the Department of Health in London. We also consulted Mr McGuigan, Dr Kaur, and other lead-cancer clinicians, and we set out the requirements that we think we would need. We have to submit the plan in January, but our work is not yet complete. However, I have worked out from the current draft that we would need an additional recurrent investment of about £3·4 million for this set of hospitals alone.

777

Mr McKee: Those are only the staff costs. To cover the goods and services costs that would go with the services provided by those additional staff, you would need to add 30% to that figure.

778

Ms Ramsey: Is that for the Royal Victoria Hospital and Belfast City Hospital?

779

Mr Stewart: That is just for the Royal Hospitals, given the existing staffing and the requirements that come from the Departments of Health here and in London, and from the regional speciality advisers, et cetera. We are working closely with colleagues at Belfast City Hospital as part of the cancer centre, and we are following the same approach in working up their requirements.

780

Mr J Kelly: Is your figure just for nursing services?

781

Mr McKee: No. That figure is for the staffing costs - for consultants, specialist nurses and so on.

782

Mr J Kelly: Is a further 30% needed on top of that?

783

Mr McKee: About 30% needs to be added to the £3·4 million, to cover the drugs, equipment and other materials that those staff would be using.

784

Mr J Kelly: I ask the question because some people give us a ballpark figure. They then come back and say that the figure was only for staffing and that they need more money for materials. It is important that we have a total figure. The difficulty about funding is that we are told it is going to be used in a certain way, and we are then told that more money is needed for other aspects.

785

Can we have a copy of your plan, please?

786

The Chairperson: Can that be arranged?

787

Mr Stewart: That will not be a problem. I will send it to the Committee Clerk.

788

The Chairperson: Thank you very much.

789

Mr J Kelly: To what extent does the fact that the four health boards can act independently, militate against the progression towards an integrated pathway for cancer patients?

790

Mr McKee: Cancer care is an example of where the four boards are working well together. They are co-ordinated through the implementation of the Campbell cancer report. To make a more general comment, it is difficult for providers of regional services, such as ourselves and Belfast City Hospital, to get agreement to services because we have to essentially get simultaneous agreement from four separate bodies to do so.

791

Mr J Kelly: What would be the solution to that?

792

Mr McKee: I favour the model of having a regional health authority for a population that is relatively small - only 1·7 million.

793

The Chairperson: That is a valid point.

794

Mr Berry: Thank you for your presentation; it has been helpful. What simple steps can be taken to ensure that the views, hopes and expectations of the cancer patients themselves are given top priority? That is obviously one of the main issues in cancer care. How can we develop better two-way communication between patients and hospital-based health professionals?

795

Mr McKee: That is an important question. I said in my opening presentation that while we are talking about clinical services and additional staff - almost always clinical staff - we need to remember that this is a journey for an individual. There is a range of ways in which we make that journey tolerable and acceptable for the individual and for wider society. We are anxious to discover how patients really feel about us and how we provide services. That is easy to say but much more difficult to deliver.

796

We have had focus groups of patients and relatives, through a third party, being prompted to give opinions about the services that the Royal Hospitals provide. We do many patient satisfaction surveys. However, even if you leave the questionnaire until after the patient has left the Royal Victoria Hospital, and you give them a free pen and a stamped addressed envelope, they tend to say nice things about us, no matter what their experience has been. We have to rely on complaints, and even then we only get 400 complaints per year. That cannot be the number of people who are dissatisfied with some aspect of our services; it can only be the tip of an iceberg. We must, therefore, view complaints as jewels that we treasure because they probably represent a wider view about us.

797

We are wrestling with the problem. We thought that we should establish a patients' panel that we could go to regularly and ask for its views about services. We have failed to do that, despite our best efforts. It has proved difficult to do. We continue to rely on complaints, patient satisfaction focus groups and the interest groups that lobby on behalf of a particular type of patient. All that I can do is assure you that we are committed to ensuring that we find out what the people who use our services really think about us so that we can further improve those services.

798

The Chairperson: Is there not a patients' forum associated with the Ulster Cancer Foundation? Could that link be helpful?

799

Mr McKee: Yes. We had a charm offensive last year with the cancer charities to try to raise their knowledge base of the work that is done here. It comes as quite a surprise to people to find out that we have two thirds of the inpatient episodes that Belfast City Hospital has and more - usually twice the number - than other cancer units. We need to raise our profile, and we need to work far more closely with the cancer charities. One aspect of that would be to get access to their patients' panels and patients' forums.

800

Ms Ramsey: I also want to thank you for your presentation, and the report that you submitted to us. What cancer services can be improved without a massive injection of resources?

801

You mentioned in your paper that better record systems are required. We had a presentation from Belfast City Hospital last week and one the week before from GPs. That issue affects them when patients are discharged. I suggest that the Royal Hospitals, Belfast City Hospital and the GPs should sit down together and look at ways of improving the records before the IT systems come in - which could be months, if not years, away.

802

The issue could be sorted out if GPs and both hospitals were to sit down and discuss it. Funding was announced for IT recently. How can we use the systems that are currently in place to improve communication between GPs and their patients, and to enhance patient care?

803

Mr McKee: I will ask Mr McGuigan to talk about communication with GPs in particular, and with our colleagues in the Belfast City Hospital.

804

Mr McGuigan: Communication is a vital link that we must concentrate on, not only in cancer services but in other areas as well. I am meeting with a GP from the Duncairn practice on Friday, who will be a facilitator, through Macmillan Cancer Relief, for trying to establish better communications. Communication problems are two-way. GPs find it hard to get access to us, and we can find it hard to get access to them. The current systems are not good.

805

Better ways of using fax or e-mail - and the ability to avoid the legal problems associated with those systems - would be an enormous advance. In countries where it is recognised that faxes need to be used, communication between doctors in hospitals and in the community has greatly improved. On interfacing with IT, I agree that we should try to improve the methods of communication before we define the IT needs. That is vital. Prior to the Macmillan Cancer Relief initiative we did not have an easy route to GPs as a body, so that we could bring about those improvements. Communication is an issue that we take very seriously.

806

Mr McKee: Almost £200 million per year is spent on the Royal Hospitals site. We employ 6,300 people. I accept the implied imperative of demonstrating value for money in the services that we are providing, at least in parallel with any bids that we make for additional staff. The argument that we do not have enough specialist staff in the area of cancer, and other important areas, is almost axiomatic. However, it does not take away from the need to demonstrate that the resources that we do have, however limited, are being used to best effect. I accept that challenge.

807

The cost base of the Royal Hospitals compares very well with similar-sized hospitals in Great Britain. The National Health Service is seen as - if doing nothing else over the past 20 years - being very good at controlling costs. On value for money, there is no doubt about that. If you reflect upon some of the outcome figures that Mr McGuigan mentioned, you will realise that matters are not as disastrous as they might seem.

808

However, we do not have enough critical-care beds. We still have an occupancy rate in critical-care beds of 97% - even though there has been substantial investment in such beds, both here and elsewhere. With an occupancy rate of 95% and above, we cannot guarantee Mr McGuigan, for example, a bed for one of his patients. We are the last resort for closed head injuries and other conditions. Until we have critical-care provision resulting in an occupancy rate of around 85% or slightly above, we cannot tell a neurosurgeon or a specialist surgeon, such as Mr McGuigan, to go ahead with a procedure in the morning on the grounds that there will definitely be a critical-care bed available for the patient in the afternoon. It is generally believed that hospitals with occupancy rates of above 82% cannot deal with emergencies and planned work at the same time. The hospitals in Belfast have occupancy percentage rates in the high 80s.

809

Secondly, Dr Ann Marie Nugent is the only specialist respiratory physician in the Royal Hospitals. That is intolerable. We cannot honour the commitment that Macmillan seeks from us - that when it funds a nurse, we can progressively take over the funding. The two aspects need to go hand in hand.

810

Mr J Kelly: You mentioned the figures of £200 million and 6,300 people. Can you stand over that? I do not want to be pejorative, but can you say that that money is not going into a black hole?

811

Mr McKee: Yes. Of course, no organisation as big as the Royal Hospitals could ever say that in every room in every department -

812

Mr J Kelly: I appreciate that.

813

Mr McKee: In comparison with hard-pressed teaching hospitals in Great Britain, we perform very well by whatever measure you take - and that is a tough comparison. By and large, our outcomes, not just in cancer - cancer of the gullet, for example - but in intensive care, ironically, are much better than the Great Britain average. Despite our difficulties, our fracture outcomes are better than the Great Britain average. That is mainly because we give good medical support to elderly patients who die of co-conditions around their fracture.

814

Ms Hanna: I have three questions. First, what measures could you take to improve communications between the acute and primary sectors? We talk about a seamless link between the hospitals and the community. Secondly, what do you see as the essential components of a cancer workforce plan? Thirdly, on palliative care, I presume that only a small percentage of the money is core funding. It seems to me that there is an awful burden on the voluntary sector in what is probably a core element in any cancer plan. What percentage of core funding should there be?

815

Mr McKee: I will refer the issue of communication between the tertiary and secondary care sectors and the primary care sector to Mr McGuigan. John Stewart will give a little more detail on our workforce plan for cancer care.

816

Mr McGuigan: We do not know. There are no easy answers, even with the present system, on how we can communicate more easily with people in the community. Some of this is obstructed by legal problems such as confidentiality of information being transferred over the Web or by fax. If we can get past that, written documentation can be sent quickly in both directions.

817

The other problem is something you will hear about all too often. The number of doctors per head of population is drastically lower in Britain than in health areas where there is better communication. Good communication is a two-way process that requires much time. Someone has to be free when I phone them, not facing 20 patients for 7·5 minutes each. Someone wanting information from me over the phone requires me not to be in the middle of an operation list. There are real obstacles to perfect communication.

818

I do not think that we will solve the unfavourable doctor/patient ratio in Great Britain and Northern Ireland, but if there was some way in which we could be helped with written communication, such as faxes and e-mails over a secure link, that would possibly be a way to improve things.

819

Mr Stewart: The cancer workforce plan could fill a significant presentation by itself. It has to make up £3·4 million, so obviously it is a big plan. I will give you a flavour of it. There are a number of documents from sub-speciality organisations about colorectal or bowel surgery for cancer. The regional advisory committee, for instance, talks about the reduction in waiting time to be seen at the different stages in what Mr McKee described as the patient journey.

820

It is a good example because it is not necessarily about appointing another consultant colorectal surgeon. We can send some of these patients to a consultant medical gastroenterologist to begin with and to a nurse endoscopist to do the endoscopy and to ensure that the patients are treated appropriately. Patients need not, as one might expect, go straight to a surgeon.

821

Another example is lung cancer, for which more consultant respiratory physicians are needed on this site. That is a major issue. We need two additional consultant thoracic surgeons on the site to meet the suggested waiting times in order to comply with best practice across the United Kingdom. We intend to reference properly all the guidance in this plan; there is nothing in the plan that comes off the top of a consultant surgeon's or physician's head. It must refer to a Government document or to a document from one of the specialty or sub-speciality advisers.

822

Ms Hanna: I want to relate that to cost requirements.

823

Dr Kaur: I agree with your comment on the core services that palliative care offers. The Department must take responsibility in funding these services rather than relying on the voluntary sector. There is a trend to fund posts jointly, and that has real benefits in providing education and in providing a good communication link between the hospital and the voluntary sector. It is a core service of the hospital and it should receive more funding from the statutory rather than from the voluntary sector.

824

Ms Clyde: The voluntary sector initially provided funding for all the nurse posts on this site. We received funding from Macmillan Cancer Relief, but the board could not continue that funding. There are difficulties in getting such funding from statutory bodies.

825

Ms Hanna: It must be seen as a vital element of patient care and should be available from the very start of treatment.

826

The Chairperson: Are you the only Macmillan nurse on the site?

827

Ms Clyde: No; there are four Macmillan nurses for adults on this site and two paediatric nurses. It is very important to get palliative care at the early stages of diagnosis. That is where our site-specific nurses come in: the oesophageal or the neuroscience nurses.

828

Mr Gallagher: Of course, we are concerned to hear of rising incidences of cancer; however, it is encouraging to hear of your successes. Have the cancer centre and the units at Altnagelvin and Craigavon been successful in improving the organisation and delivery of cancer services? What progress would you like to see in the integrated regional approach to the delivery of cancer services?

829

Mr McKee: I will make a stab at this, and then maybe my colleagues can take over. The danger is in trying to reply without straying into relatively contentious ground.

830

I must be open and say that the approach adopted by Dr Campbell, as Chief Medical Officer, and the four health boards is more an exemplar of how we should be managing other services. It is much more tightly co-ordinated and much more recognised that cancer is only provided for by big clinical teams. Do not get me wrong. For example - and I am straying into contentious ground - we are rowing against the tide to have to co-ordinate the activities of four area boards when one regional authority would probably do it better.

831

Similarly, while we have good working relationships with our colleagues at Belfast City Hospital - and I am not at all critical of those - they could be better if there was no administrative boundary between ourselves and Belfast City Hospital. With all due respect, a merger of hospitals in Belfast is not about administrative overheads; it is about allowing teams of clinicians to work more effectively together across boundaries and viewing services not from the perspective of departments or institutions but from the perspective of a patient. A patient does not care where the clinician has come from; it only matters that they are working in a team to focus on the needs of that individual.

832

There are too many administrative boundaries in Northern Ireland in health and social care to allow us to co-ordinate clinical efforts more effectively.

833

Mr J Kelly: I clocked myself coming over from Belfast City Hospital this morning. It took six minutes. It is ludicrous having two administrative bodies for two hospitals so close.

834

The Chairperson: I want to follow up on a point that Mr McKee made about one regional authority. We are straying into the big picture, but it is important. The Hayes report recommended that the Royal Hospitals, Belfast City Hospital Health and Social Services Trust and Greenpark Healthcare Health and Social Services Trust should all become one trust. Would you agree with that?

835

Mr McGuigan: Clinically, we see fracture lines in the continuum of the so-called seamless journey that patients should have. Even between here and Belfast City Hospital there can be fracture lines in delays for patients seeing oncologists and so forth. That used to be better when we had more oncology presence on this site. Many of these issues could be solved simply and easily if there were a single overview from a single administrative and managerial point of view. We, as clinicians, see the fracture lines, and we wonder why we must have these separate administrations.

836

Mr McKee: I am entirely in agreement. That does not mean that we look back over the past 10 years and damn the 19 trusts. They were successful in getting strong local leadership and local identity. We are now realising that healthcare is so complex that it can only be provided as part of big teams/networks. My only reservation would be whether it would be the Royal Hospitals, Belfast City Hospital and Greenpark Healthcare Health and Social Services Trust, or the Royal Hospitals, Belfast City Hospital, the Mater Hospital, Whiteabbey Hospital and Lagan Valley Hospital. A reorganisations is disruptive. It can only be done once, so whatever happens, it should be done soon.

837

We are arguing about how many angels can dance on the head of a pin, whether it should be one configuration or another. That does not matter. I think that we are all agreed that the current configuration is overly elaborate for modern healthcare provision. If a line is taken, we will follow it through.

838

The Chairperson: You mentioned that there is no uniformity of services across the four boards. Obviously there is a case for one health authority rather than four, but as you say we are moving into the area of structure. However, it is important.

839

Mr McFarland: An important aspect of cancer care is to identify cancers early. What specific steps are the Royal Hospitals taking to achieve a greater uptake of screening programmes by those at risk, particularly those who are socially deprived? Obviously, the Royal Victoria Hospital is situated in an area that is considered to be deprived.

840

Mr McKee: The Royal Hospitals are not directly charged with developing screening programmes, but I agree that any gap or slip in a patient's journey is a setback. A slip at the start of the journey is more damaging than one towards the end of the journey. If cancers are not identified early, it is difficult to get the patient to hard-pressed clinical staff.

841

There is a wider issue for hospitals such as the Royal Hospitals. The Royal Hospitals employ 6,300 staff, all of whom return to 6,000 households, which is about one tenth of the households in Northern Ireland, and it must be asked what we are doing to educate those staff. What is the hospital management doing to educate those people about environmental and lifestyle risk factors? What is the management advising about smoking cessation and replacement therapies for patients in hospital, for example? We treat so many people who have smoking-related illnesses, and ironically we try to prevent them from smoking during the three days that they are in hospital. However, what are we doing to help them to stop smoking when they return home?

842

The Royal Hospitals are a major employer and they should contribute to screening as well as the wider issues. We think that we should be working more closely with those who provide screening. The "artificial fracture lines" that my colleague mentioned intervene between the Royal Hospitals conducting diagnosis and treatment assessment, then surgery and then palliative care, someone else doing radiotherapy and oncology, someone else screening and someone else giving health education. The current organisation does a disservice to the Royal Hospitals.

843

Mr McGuigan: There is no clearly defined role for hospitals in networks. I have looked at services in the United States of America, for instance, where the motto of the Memorial Sloan-Kettering Cancer Center is "Best Cancer Care Anywhere". They are proud in Harlem in New York of their high rate of lung cancer resection - around 30%. Northern Ireland's lung cancer resection rate is about 9%.

844

Mr McKee: Do you mean that 9% of all people with lung cancer get surgery?

845

Mr McGuigan: They can have a surgical resection. Therefore, the rate in Harlem is three times higher than in Northern Ireland mainly because Sloan- Kettering works in a cancer network. Some of the failures of cancer reorganisation in the United Kingdom have shown that we need a network. There must be healthcare areas looking at funding, for instance, from the new opportunities fund. However, the hospitals do not have a clearly defined role in helping those socio- economically deprived groups in Northern Ireland. That issue must be examined. It is not easy for Mr McKee to tell someone such as myself to ensure that we have better referral of early lung cancers in west Belfast, for instance. There is no easily defined role for that.

846

Mr McFarland: Part of the current problem is that people living in the areas surrounding acute hospitals view and often use that hospital as a medical centre. If people from west Belfast use the hospital as their first port of medical call, would it make sense to have some sort of screening system to encourage them to avail of the well woman clinic, for example? People come to the hospital and they may as well use the services that are being offered as they sit in the waiting room.

847

Mr McKee: There has been a "one size fits all" accident and emergency department model in these islands, not only in Northern Ireland. We are being encouraged to see the accident and emergency department as a number of separate doors for patients' journeys, not as some monolith. Perhaps it would be better if we acknowledged that people prefer to receive primary care from hospitals, and that we should have a primary care door at accident and emergency. We should have a minor injuries door and an accident door. The Royal Victoria Hospital should have a trauma door. There should be a "mix and match" approach to those services that are not currently well provided for in accident and emergency.

848

We staff accident and emergency departments across the country to deal with accidents, emergencies and trauma, but in fact they do not deal with that, by and large. We have frustrated staff, and long waits. We triage patients so that if someone has a serious injury, he or she will be seen quickly. However, if you have a minor injury, you might not be seen for some time.

849

We should simply separate the two. Let us say that someone in need of primary care is given an appointment at the end of next week because he or she has not had a good exchange with the receptionist. The receptionist has not realised that the accident and emergency appointment should have been made for the following morning. Instead, the patient comes to see us next day in the accident and emergency department. We should acknowledge that problem, staff the department appropriately and not have one service carrying out all these functions. However, it means that we must tease out the staffing of accident and emergency departments across the country and strengthen them.

850

Primary care can be strengthened in each location, but the delivery of high-quality accident and trauma services must be networked. It is important that staff do not lose their skills by seeing only one or two accidents per year. They can be part of a bigger network where they might be working at the Royal Hospitals for two weeks out of four, and working in a smaller hospital for one week. They could be rotated and keep their skills, while we would still be able to provide services closer to where people live.

851

The Chairperson: Dr Ian Carson gave us a summary earlier -

852

Mr McKee: That is from the English Department of Health, where they suggest the separation of services.

853

The Chairperson: We will be going through this ourselves.

854

The two-week waiting system for patients with suspected breast cancer has been broadly welcomed. However, some might argue that this creates a two-tier system by disadvantaging other cancer patients who face delays for treatment. What steps can be taken to tackle the inequities in treatment for different cancers, and what are the obstacles? You may already have answered those questions.

855

Mr McKee: Breast cancer is an important cancer that needs to be tackled. However, the evidence shows that lung cancer still kills more people. It would involve substantial resources, but we should have the same standard for lung cancer, rather than have a single-handed respiratory physician, who tends to be the first specialist whom the patient sees, and who has a team that is incomplete and overstretched.

856

The Chairperson: Is Dr Ann Marie Nugent the only respiratory physician on this site?

857

Mr McKee: We have paediatric specialists, but Dr Nugent is the only respiratory physician for adults in the Royal Victoria Hospital.

858

The Chairperson: Had there been two or three respiratory physicians at one stage?

859

Mr McKee: There had been two.

860

Mr McGuigan: Dr Nugent is best placed to speak about this. The different concentrations and specialisations have meant that where 10 people used to do a little bit, there are now two or three people doing a lot.

861

Dr Nugent: I have been in post in the Royal Victoria Hospital for two years. Prior to that, there had been a consultant in place for two years also. Before that, there had been a hiatus. Dr Stanford was the original respiratory physician. For a long time, there has been only one respiratory physician in the Royal Victoria Hospital, with very limited locum cover.

862

The difficulty is that not only are we looking after lung cancer but also all respiratory problems. In our catchment area of north and west Belfast there is a high prevalence of lung disease as well as lung cancer. The problem arises with referrals. I get referrals from GPs for outpatients and quite a significant number from the hospital itself, from the acute emergency intake, and from patients who come in for elective surgery where a chest X-ray has revealed a shadow. Being single-handed, I have only one chest clinic and one bronchoscopy session for the purposes of investigation.

863

The Chairperson: Do you have any registrars?

864

Dr Nugent: I share a registrar with another physician and have the equivalent of half.

865

The Chairperson: I appreciate the reasons behind that, but it is terrible.

866

Dr Nugent: It is being investigated, and the British Thoracic Society has advised that I should see a suspected lung cancer patient at my clinic less than a week after receiving a GP's letter. I should carry out appropriate investigations, including bronchoscopy, inside another week, then see the patient with the results. It is very difficult.

867

We also have a problem with radiology and CAT scanning facilities, which form part of the staging process for lung cancer. One CAT scanner recently broke down, and that has caused delays in investigations. The important thing is rapid investigation and diagnosis so that the most appropriate treatment can be planned, and that is fraught with difficulties.

868

Ms Ramsey: With regard to outpatient clinics, could you give me an idea of how many cancellations there have been in connection with cancer? I am conscious that you might not have that information to hand.

869

Mr McKee: I could attempt to give you that information, but I do not have it. I will try to find out.

870

Mr J Kelly: I was taken with your comments on the lack of networking. The Committee sees a problem in the lack of integration across all the disciplines in the Health Service. There seems to be an element of competition between, for example cancer, cardiac surgery and obstetrics. Could a system not be devised whereby clinicians can present a plan of their particular needs across all Northern Ireland areas, rather than have one area such as mid-Ulster perhaps fighting Tyrone? Perhaps the business does not work that way.

871

Mr McFarland: Surely not!

872

The Chairperson: That is a difficult one.

873

Mr McKee: That is why I was careful to preface my remarks on co-ordination by saying that cancer leads the way. We can collectively request to bring together a complete workforce plan for what is needed to bring our cancer services up to objective standards. That has not been done across the Health Service.

874

I understand that each year the Department of Health, Social Services and Public Safety makes a proxy estimate, which then goes forward as bids. Dr Maurice Hayes's estimate that the baseline for acute care should be increased by approximately £167 million at 1990 prices rather underestimates what it would take to bring us up to objective standards.

875

My board of directors asked me exactly the same question, but what is the point of doing all that work if there is no prospect of getting the money to do it? You are correct, however. It would probably be better to be honest with ourselves, if not with the public, about what the challenge is in respect of additional funding. I return to my comment that whatever else is wrong with the National Health Service, it has been very good at controlling costs, because it is funded from taxation and bids are made for central moneys. Inexorably, a group of clinicians ends up doing two things. To use an idiom, it is necessary to play the "poor mouth", then compete with others for centrally allocated tax-based resources -

876

Mr J Kelly: - You also play the "poor mouth" there.

877

Mr McKee: - Other systems which rely on private or social insurance tend to be much poorer at cost control, but it is much easier to make bids for resources. In a sense, the debate between Gordon Brown and Tony Blair is stifled at birth, but it is a legitimate debate about the choices to be made.

878

No system is perfect, and each has advantages. Taxation has resulted in a system which has controlled costs very strictly, but it makes us all beggars, because the only way to get money is by pleading poverty and competing against your neighbour for resources; that is the way it is. It will always be difficult to get everyone in a room to agree how the cake should be shared out or how big it should be in the first place.

879

Mr McGuigan: There is a specific answer to John Kelly's excellent question. In England the "cancer czar", Prof Mike Richards, has held up a report for a long time. The report examined the upper three cancers, those of the gullet, stomach and pancreas, to see how badly they were treated in different areas. The author of that report, Prof Bob Haward, insisted that the cost go in. While I cannot recall the exact figure, around £80 million extra would be required to centralise surgical and other services to improve that aspect of cancer.

880

In our own reports, we have recommended simple things such as multidisciplinary meetings so that the radiotherapists will not fight with the surgeons, since they will all be in one room together with the nurses - and eventually perhaps even with the patients. However, none of that has been resourced, and if you do not cost the price of improvements, people arrange meetings of that kind early in the morning, during lunchtime or at teatime. The meetings are poorly attended, and there are no secretarial services to ensure that notes are available; the wrong X-rays are there.

881

I have also seen such meetings run at places such as Memorial Sloan-Kettering Cancer Center and at Yale in the United States where they are definitely resourced; they have good multidisciplinary meetings. We do not cost things. We make recommendations without providing resources. I believe such meetings are to be stopped in England.

882

The Chairperson: That is a fair point.

883

Ms Hanna: I agree with you that funding is absolutely essential. Perhaps I might return to the issue of the cancer workforce plan. Is it intended that more resources be directed at those cancers which have a very high incidence, for example lung cancer, for which there are few specialists? Would your plan make more resources available to prioritise the problem?

884

Mr McGuigan: That is a matter for the Department of Health, Social Services and Public Safety and the commissioning boards. We can make recommendations that existing health resources should be redeployed to such areas of scarcity. I should not like to be that Solomon.

885

Ms Hanna: It is very difficult to know. The Chairperson mentioned that care for sufferers of breast cancer, for example, is much better than for victims of other types of cancer.

886

Mr McGuigan: With regard to lung cancer, there is a culture of blaming the victim. The rationale is that the patient has smoked, and so it is "not our problem". That is most unfair, because those people have been doubly afflicted - first by addiction, then by cancer.

887

The Chairperson: That is right; it is a fair point. We are coming to the end of our review of the delivery of cancer services in Northern Ireland. Next week we have a meeting with the Minister and with departmental officials. We hope that our report will be issued at the end of January.

888

The Committee Clerk: It is certainly to be hoped that Committee members will receive copies by that date.

889

The Chairperson: I thank you, William McKee, Jim McGuigan, Dr Karem Kaur, and your colleagues for the visit to the accident and emergency department of the hospital, for today's meeting and for your documentation. You will know from the number of questions everyone asked that we appreciate all your efforts and your own work every day in the hospital. Thank you for coming along to help us with our review. As I said, it is hoped that the review will come out in January.

890

Mr McKee: I thank the Committee members for their time and attention. We wish you well in your endeavours.

Wednesday 12 December 2001

Members present: Dr Hendron (Chairperson)
Mr Gallagher (Deputy Chairperson) Mr Berry
Rev Robert Coulter
Ms Hanna
Mr J Kelly
Mr McFarland Ms M McWilliams
Ms Ramsey