COMMITTEE FOR
HEALTH, SOCIAL SERVICES AND PUBLIC SAFETY

OFFICIAL REPORT
(Hansard)

Response to the Bamford Review (Mental Health and Learning Disability Board)

 29 May 2008

Members present for all or part of the proceedings:
Mrs Iris Robinson (Chairperson)
Mrs Michelle O’Neill (Deputy Chairperson)
Mr Thomas Buchanan
Rev Dr Robert Coulter
Dr Kieran Deeny
Mr Alex Easton
Mr Tommy Gallagher
Mr John McCallister
Mrs Claire McGill
Ms Sue Ramsey

Witnesses:
Professor Roy McClelland ) Board for Mental Health & Learning Disability
Professor Roy McMcConkey )
Ms Joanne McDonald )
Ms Paschal McKeown ) Carer for Joanne McDonald

The Chairperson (Mrs I Robinson):
We now move on to the evidence session with the Board for Mental Health and Learning Disability.

Rev Dr Robert Coulter:
I declare an interest as chair of Castle Tower Special School.

The Chairperson:
Thank you, Robert. That interest has been recorded.

The first evidence session today is with the Mental Health and Learning Disability Board. A copy of the draft response from the Northern Ireland Executive to the Bamford Review of Mental Health and Learning Disability ( Northern Ireland), the draft response from the Mental Health and Learning Disability Board and an Assembly research paper can be found in Committee members’ packs.

It is my privilege and pleasure to welcome Professor Roy McClelland, chair of the Board for Mental Health and Learning Disability and Professor Roy McConkey and Ms Joanne McDonald, both members of the board. I also welcome Dr Paschal McKeown, who is in attendance in her capacity as a carer for Joanne. You are all very welcome.

I invite the witnesses to give a brief presentation to the Committee, and I will then allow approximately 45 minutes for questions from members. This is due to the Minister of Health, Social Services and Public Safety also coming to the Committee today.

Professor Roy McClelland (Board for Mental Health and Learning Disability):
I thank the Committee for having us back relatively soon. This is the third time in the last year that I have had the pleasure of being at this Committee. The board would want to signal generally its interest in this matter and the interest that the Committee has shown.

We are currently in a crucial period between the delivery of the Bamford Review and the delivery of a final Government response to the review. Therefore, the vigilance of the Committee is appreciated.

It may be helpful if I go through — somewhat summarily — the board’s submission to the Committee. This submission guides our response, on which members may wish to pose questions. I will go through this as an overview initially and then defer to Ms Joanne McDonald and Professor Roy McConkey so that they might pick up on, particularly, the disability aspects.

I want to begin on a positive note. A considerable amount of effort has gone into the Department of Health, Social Services and Public Safety (DHSSPS) getting its head round a fairly complex review that, of course, it was responsible for establishing.

I am particularly encouraged by the Minister’s stating overtly his commitment to the vision of Bamford. In fact, the draft response adopts the Bamford vision. I do not think that the Bamford vision should last eternally, but until something better comes along, I would like it to be sustained.

Furthermore, the Minister makes a clear, generic commitment to adopting the many recommendations in the Bamford Review and moving with them sooner rather than later. It will be a long haul, and Bamford has always recognised that. It is worth noting that we will seek to provide person-centred, seamless, community-based services, informed by the views of service users and carers, making early intervention a key priority and promoting the mental health and well-being of the people of Northern Ireland. That is a crucial foundation stone.

The Minister recognises the need for several work streams. Throughout our reporting on Bamford, we have emphasised the four main streams that require very different arrangements: mental-health-services reform; learning disability services reform; legislative reform for mental health and learning disability; and the flourishing of mental health in Northern Ireland for the entire population. Those are very different strands of work. It is helpful to maintain those streams in our thinking to understand the strengths and weaknesses of the document.

Since we last met, we have a much more positive funding situation, and that is a great relief. I am very pleased that the Minister of Finance and Personnel gave us that kind of endorsement, not only in the actual amount, but in the front-loading emphasis. The challenge now is how to respond swiftly to that.

We must also take encouragement from the extent to which the reform and modernisation of mental health and learning disability services cannot be seen as the sole provenance of the Department of Health, Social Services and Public Safety. It is a cross-governmental issue. There must be a strong stitch-in across Government, and that clearly seems to be there.

We are very much behind the idea of a task force being established to ensure that the recommendations are implemented. However, it must recognise the four streams, and I doubt that one task force could manage the specifics of such streams. Therefore, we would want to see clear specific projects relating to learning disability, mental health service reform, legislative reform and mental health provision.

The mental health promotion side of the document is positive in its approach, but I am not reassured that the structures of Government will necessarily deliver. That is not based on any evidence of the existing structures, but on the fact that we already had a good mental health promotion strategy. However, nothing much has happened with that, due to the fact that although there were commitments to mental health promotion, there was no central ownership and driver.

You referred to the suicide strategy and to the benefits of appointing a director. The Bamford Review has always recognised the need for a champion for mental health promotion — whether that is a special group or an individual remains to be seen. However, if we want mental health and well-being to flourish in Northern Ireland, we need to pull it out from its embedded state. Even in the funding stream, the issue rarely sees the light of day, and I am concerned about that.

Legislative reform is the second strand of the Bamford Review. On the one hand, I recognise the need for a specific stream of work. The Department has indicated that it will produce a separate legislative framework document, which is to be encouraged. However, I have reservations about the initial signals that are coming from the current document. For example, there is no clear commitment to a single legislative framework, and that is set as the first key recommendation for legislative reform.

There is, on the other hand a decision, based on process issues — namely the complexity of the process — to carry out the work in a two-stage process. One might need to compromise on the process issues, but that, coupled with no commitment to a single legislative framework, in the opinion of the board, is a recipe for a total uncoupling and two separate pieces of legislation that may not even talk to one another. We have some concerns there, but we must wait, I suppose, to see the detail in the legislative framework document.

I will go through the rest of this quickly and then hand over to Roy McConkey and Joanne. ‘Delivering the Bamford Vision’ contains many good signals. However, we must challenge its assertions about the workforce. If a workforce planning study is to be completed by March 2009, given the workforce issues that were being considered by the Bamford Review team since 2005 and the lead time for a workforce strategy for all of the reform process, we must have a workforce strategy in place by March 2009, if not before.

My colleagues will talk about learning disability. Therefore, I will not say anything further on that. Adult mental health provision is strong, and I endorse the direction of travel on that issue, including the commitment to specialist service priorities. It does not get a very big headline, but we must address that issue. If we pick one single area in which Northern Ireland is weak on mental-health-services reform, it is in the lack of differentiated specialist services for those with special needs. The Bamford Review specified over eight of those, with which the Committee will be quite familiar.

Children and young people’s mental-health needs are well highlighted. Mention is made of examining the regional child and adolescent mental health services (CAMHS) group. We are in no doubt that we need a regional CAMHS driver. That is the message coming through from mental health promotion: special groups need a special arrangement to drive that through. The regional CAMHS groups should be established and endorsed formally. There is an issue about where to place autism services. There is a strong case for aspects of autism services to be well recognised within children’s services as part of children’s needs generally. Children with autistic spectrum disorder (ASD) should be dealt with through that process.

I am encouraged that a commitment has been made to have a strategy for dementia services. There is a very strong case for endorsing the longevity of the Dementia Services Development Centre. It is on a very short fuse at present, and I commend it to the Committee as a key element for encouraging community awareness and support for the growing epidemiological challenge that dementia will present in our lifetime.

We endorse the linkage between alcohol and substance abuse services and the new strategic direction for alcohol, which has already been established. The Bamford Review team was aware of that, and it is well placed. The need to establish a forensic services network is endorsed in the document, and we support that strongly.

The last point that I want to make is about the methodology for implementation. The Executive document is strong on vision and its short-term plan has many good aspects, but it might have benefited from a clearer and more coherent timeline for the 15-year vision that it is required to follow. To be fair, that could be dealt with in a supplementary document that would include performance targets to see us through not just the comprehensive spending review (CSR) period but the next 10 years.

I will now hand over to Professor Roy McConkey and Joanne McDonald to comment on the learning-disability component.

Professor Roy McConkey (Board for Mental Health and Learning Disability):
Chairperson and Committee members, thank you very much for having us here today. This is the time of year at university when we mark the work of many students, so forgive us if we fall into doing that with the Executive’s report. Roy McClelland has already outlined some of the good aspects of that report; however, we feel that it could have done better. I will outline some of those areas; particularly in the context of learning disability.

During the consultation period, the Committee will hear users and carers ask where the issue that was flagged up regarding equal lives is dealt with in the Executive’s draft response. We are concerned that learning disability is being marginalised. It accounts for 7% of the health and social care budget, which is 1% less than mental health. However, you would think, from reading this document, that learning disability was a very small component. We are somewhat concerned that the equality that needs to be there is not going to be followed through.

In addition, we are concerned that the proposed structures will not address the particular needs of people who have a learning disability. Only one task force has been proposed to take forward some of that work. The board had discussions with the Department when this response was being drafted — we told the Department that a minimum of two task forces would be needed. Even if only one co-ordinating task force was in place, a sub-task force would be needed to deal with learning-disability issues. That was how the Bamford Review moved forward and how it produced the goods. We cannot see how one task force would be sufficient.

The other distinguishing feature of learning disability is that it is not solely a health issue; it is a lifestyle issue. The Executive’s draft response could have done better by showing the cross-sectoral linkages that will be required — particularly for families and for people with learning disabilities — and how those would be created and nurtured over the life of the implementation. Instead, we received separate governmental reports about what they aspire to do. The lack of a joined-up approach is a big disappointment to us.

Users and carers were very much part of the process of creating a radical new vision for how services will operate in Northern Ireland in the latter years of this decade. In that sense, the message does not seem to have got across. The response does not acknowledge that — perhaps it does verbally, but it does not do that regarding the detail of what is required. Joanne has done a great deal of work people who use those services. In addition, she is a user of those services herself. She will explain what she feels needs to be contained in that document.

Ms Joanne McDonald (Board for Mental Health and Learning Disability):
Hello, everyone. First, I will say a bit about my background. As Roy pointed out, I am an individual with a learning disability, but, I also wear other hats. I work in the field of learning disability. I support other individuals with learning disabilities through my work and also in my personal life, as I have a sibling with a learning disability, so I like to think that I know what I am talking about — or perhaps I will just bluff it; I do not know.

The Bamford Review said that people with learning disabilities should have support to have their voices heard. However, that is very hard when they are individuals with learning disabilities. That is why I feel strongly that there should be more about learning disability in the paper. It is not just one type; there are many different types of it. At the end of the day, people with learning disabilities need a real say in how services should be planned and delivered in order to benefit them, because they are the people that those services are for. Their views must be heard during this consultation.

Advocacy services also need to be there for individuals with learning disabilities, so that they can learn how to go about things. They need to be listened to, but they also might need to be given confidence in their abilities, and that will take a long time. Individuals with a learning disability may never have been asked to talk about their needs before. They need to be encouraged to do that, so the support must be there. The Bamford Review said that there should be a reasonable forum for people with learning disabilities, and that advocacy should be prompted at a local level — not only with a group in Belfast but possibly throughout the different boards.

I am living proof. Five years ago I would not have been sitting at this table. I have had the experience of being with an advocacy group, and that is how I came to be on the Board for Mental Health and Learning Disability. However, I do not only speak out for myself; I also try my best to speak up for others with learning disabilities who maybe cannot speak up for themselves. The Government said that people with learning disabilities need the advocacy support so that they can speak out about the services that they and their families need. That is not included in the Government’s response to the Bamford Review.

Professor McClelland:
I echo Joanne’s point about advocacy right across mental health and learning disability. There is an acknowledgement that the Bamford Review says that there should be a strong advocacy, including peer advocacy, but there is a lack of any specific target to commit to that process.

The Chairperson:
There was no mention, except in the long term, for a perinatal unit for mothers and babies. We have met mothers who are in that high-risk category. We were all touched by their stories of their experiences, and yet we have failed that group. I know that we cannot fix everything instantly, and that it is a step-by-step process. I take the point, Roy, that finance is a lot better than when you first came to the Committee. Obviously, we welcome additional funds. However, there are many issues that members wish to take up.

Mrs O’Neill:
Thank you for your presentation. You are aware that the Minister is coming to the Committee next, and we will follow through on some of the issues that you are raising. The first issue concerns learning disability, and it is disappointing to hear that you feel that there is a severe lack of follow-through in the draft response. Learning disability affects a person in every aspect of his or her life, and we need to see what the other Departments, including the Department for Employment and Learning (DEL), are going to do. The Committee will raise that point with the Minister.

You referred to the legislative reforms, and you raised concerns about the two proposed pieces of legislation not marrying up. The document says that changes may not occur until 2014, and I will take that matter up with the Minister. Are you concerned that the legislation will not marry up? Should there be only one piece of legislation?

Professor McClelland:
That is a key issue. I draw your attention to the fact that we have reproduced our number-one recommendation from the Bamford Review in our draft response. I commend that to the Committee. That is our anchor point: there should be a single legislative framework to address the needs of those who require substitute decision-making — should that be for their mental health, physical health, finances or welfare. That kind of holistic single framework is the cornerstone of the issue. Whether that is introduced on a phased basis is one matter, but once a single legislative framework is given up on, it could run and run. We could end up tinkering with the 1986 legislation relating to human rights, including everything that needs to happen to that, and the fundamental inequality that happens when those two pieces of legislation are uncoupled is not addressed.

Northern Ireland has a tremendous chance. We have watched the progressive move that Scotland has made with its legislation. In the early years, around the year 2000, Scotland considered whether it could include it all in a single framework, but the various pieces of Scottish legislation marry up in a much more coherent way than the present English system — as is demonstrated by the debacle over the failed attempt to introduce a new Bill. There was then a tidying-up of the 1983 legislation, as well as the capacity legislation that already exists. The single framework is the key.

Professor McConkey:
We cannot understand why Northern Ireland is going to take so long when we have this exemplaire legislation in other parts of these islands. The delay seems unnecessary. Scotland introduced it in 2000: why should we have to wait a further 14 years to catch up?

Mrs O’Neill:
It seems too long to wait. One of the proposals is that the Mental Health and Learning Disability Board should be replaced by the Bamford monitoring group. How should that new group be constituted? Will it be seen as a champion for service users and carers? Should it have a strong challenge function?

Professor McClelland:
That is an important question. We are comfortable with the idea that the present board arrangements will be revisited. The functions that have gone into the present board from the experience of the board should be maintained, both in terms of bringing some expertise to the situation, and having clear challenge and championing functions. We recognise that the board needs to be properly constituted with the right balance of views.

The question arises of whether the health and social care council is the optimum way for doing that. I am certainly mindful of some concerns from my user and care colleagues that mental health has not always been seen as a priority in health and social care councils. We must be very careful that it is not subordinated within that.

Mr Easton:
I have three short questions. You talked about a champion for mental health to roll out the Bamford reforms. If we do not get a champion, will there be lots of different parts putting their oars in and, as a result, the Bamford reforms might not roll out as effectively as they might otherwise do? My impression, from speaking to the Health Minister, is that he does not seem keen on the idea of a champion.

Are you satisfied with the approach and involvement of other Government Departments in the Bamford reforms? Will there be an improvement in that aspect? I am interested to hear your views on that.

With regard to alcohol and drugs, do you not feel that there should be a stand-alone unit to deal with alcohol and drugs problems — and this is not really addressed in the Bamford Review — rather than have people treated in different hospitals in an airy-fairy fashion? Perhaps those patients should all be concentrated in a single unit in which they can get the full attention that they need to help them get off alcohol or drugs?

Professor McConkey:
On Government Departments, we have detected that they are much more aware of the issues, so that level of educational awareness has come about. We also detect an impotence around the issue of making their own structures work the Bamford agenda, or rather, this agenda. This is such a new area for them. One of the most obvious difficulties they encounter is the way in which the budgets are allocated to Departments. You find, for example, that the Department for Social Development (DSD) is capital-poor, but the Department of Health, Social Services and Public Safety is revenue-rich. There needs to be a change in the planning of departmental cycles, so that the capital housing is available to meet the staffing requirements that the revenue has in the Health Department. At present, they cannot do that; they are impotent. There is something to be learned about how to pool budgets and plan across Departments on a one-year, three-year or 10-year cycle.

One of the attractive things to evolve in Scotland following devolution is that they have re-examined the departmental structures and orientated them much more toward the outcomes that they want for their population. In areas we sometimes call silos — the education silo, the health silo, the housing silo — they have reconfigured their administrative and budgetary systems so that they are all working towards the same set of outcomes. That is eminently achievable within our Executive, and one would have liked to see a response from Government that flagged up that matter.

Maybe we should not be too hard on people; maybe this is the start of an evolving response and in future submissions we will see that type of thinking filtering through. It is a start, but a sense of vision still needs to come into play, and it is not quite there yet.

Professor McClelland:
With regard to a champion, our experience would be that the board seems to meet an important need in championing the Government’s proposals for reform. Whether that is vested in one individual or in six people or eight people is another matter. It is important that that function is retained and that it maintains its independence from Government. That is the board’s current thinking on that

On the question of substance misuse and alcohol, the fact that we now have five trusts creates a much better platform for more specific and specialist service development. What we want to see are strong, clear, well-focused, fit-for-purpose services.

The whole community programme in relation to substance misuse is such a big issue, and there is also the issue of dual diagnosis — the issue of mental health and drug problems. There is a strong learning, educational issue and a cultural shift in the whole health system. Probably over 50% of inpatients in mental health services have a significant substance misuse or alcohol problem. That is an enormous epidemiological issue of epidemic proportions, and I suspect that inpatient specialist facilities are just one part of the continuum. I would suggest that that is better met on a trust-by-trust basis.

Mr McCallister:
I want to follow on from Alex’s first question about how do to get more involvement and to break out of the silo mentality of Government. The two Roys mentioned the flourishing of the mental health of the population — a great strategy but nothing has actually happened. How can the Committee help push that?

There is a huge role for other Departments to play in that and in the learning disability and lifestyle issues. DSD and DEL have a role to play and even the Department of Agriculture and Rural Development (DARD) has a role in rural communities. Some of this Committee’s work on our report on the prevention of suicide is relevant. What role do we and other Committees have in helping to break down those silos and make inroads into the Departments?

Professor McClelland:
That is a very helpful question, and I would echo Roy’s positive impression having met with several of the Ministers and their senior officials. The problem is that the Departments are locked into their programmes.

The functionality of the task groups that Roy referred to is along clear and distinct streams of work. The task group that is committed to mental health promotion for Northern Ireland plc would have a very different shape to an overarching task force. A task group devoted to learning disability across Government agenda would focus on a specific set of interdepartmental activities that would be different from mental health promotion. Endorsing and strengthening a commitment to focused action groups across Government may be the lever to break the silo.

Professor McConkey:
Northern Ireland is still viewed as a series of localities. In the Health Service we talk about local commissioning for health, but we have to realise — as you all have — that health is not just based around what the Department does, but around what all those other services do. We have to find a mechanism at a local level for bringing together education, leisure and agricultural issues. I realise that that is not your responsibility; the role of councils and district councils has been talked about in relation to that.

The message needs to get across that the health structures are no longer created just to serve an ill population. It is ironic that many people use what are termed “health” services only when they are ill. We are talking about providing services for people who are physically well, but who need an opportunity to grow and develop emotionally and socially. Those people need the help of all the Departments. In Joanne’s experience as a family carer, nowhere is that more true than for a family.

Ms McDonald:
That is right, Roy. Government Departments should work together to help people with learning disabilities to lead a better life. Roy touched on the point about professional support. People with learning disabilities need that extra direct support in place. Those people are in good health, but they need the right support to access leisure facilities, to get a job or to go to college. It is very much about working with DEL and the other Departments to make that a reality for all individuals with learning disabilities across the Province.

Mr McCallister:
As a Committee, we can look at how we push that with our colleagues in other Committees and Departments.

Dr Deeny:
Thank you, ladies and gentlemen. I am delighted that you are here again. Many people believe that good mental and emotional health makes a healthier human being; I support that view.

I want to make a couple of statements in relation to that. I agree that you need the two task forces here to take on learning disability and mental health and to push them through. We will do whatever we can to help.

The Executive’s draft response to the Bamford Review, ‘Delivering the Bamford Vision’, says:

“More people needing mental health and disability services will be able to live at home while they receive their care. If they need to be admitted to a hospital they will stay only for as long as they need assessment or treatment in that environment.”

I have been a GP for more than 20 years, and I could not agree more. However, it frightens me that dealing with everything in the community is seen as the panacea to all the ills in the Health Service. In primary care, I already see people under pressure; patients are being sent home from hospitals too early and then have to be readmitted. That is not even taking into account patients with mental health problems.

If I were cynical, I would question why senior politicians recommend that patients be sent home early from hospital. Is it because it is the cheaper option or because it is better for the patient? Both are true; it is better for the patient to be treated at home.

It would be wonderful if we could provide perinatal and post-natal services, which the Chairperson has already mentioned, services for children and adolescents, care of the increasing elderly population and those with a learning disability in the community. That is what we should be doing.

Community and primary care services must have proper financial and personnel resources. Ten years from now, I would love to see such services being dealt with in the community, but an enormous amount of those services will need to be backed up with financial and personnel resources to be able to implement that. What are your views on that?

Professor McConkey:
To some extent, a culture change is needed, and that is in the minds of people. We can take preventative measures — for example, we can consider how to promote engagement with activities, friendships and socialisation among people with learning disabilities, in order to prevent the isolation that can lead to depression, which in turn can create demands on professional supports. We must mobilise our community, voluntary and social structures. That is at a first-tier level.

We must also consider where to invest our present resources; where professionals are working and where they are based; and where capital-development moneys are being invested. For example, the biggest capital investment in the area of learning disabilities was on the site of Muckamore Abbey Hospital. Some of the day centres and some of the community residential facilities that we have are very substandard. However, it is much easier to make a capital bid to extend what is already there rather than to create a new, alternative and, I believe, more vibrant model of service delivery.

We must also consider how much our professionals interchange between the more acute settings and the community settings. We must get away from artificial divisions — for example, identifying nurses according to whether they work in a hospital or in the community. The new trust structures present an opportunity that may not have existed previously to consider how there can be greater interchange and shared development of services, so that the acute sector can support the community sector and vice versa, thus avoiding a twin-track funding approach. Certainly, from my experience in Northern Ireland and of being associated with the board, I am only too well aware of how money has been taken out of community services to fund pressures in the acute sector. Such pressures will continue to exist.

In a sense, the acute sector must own the problems in the community sector and have an interest in helping the community sector to solve its problems, and the community sector must do the same for the acute sector. That is what I mean by a mindset cure, because people still identify themselves according to whether they work for a hospital or in the community. They must understand that they are working for a patient, or for a family, with a whole range of needs and demands. We should be a lot more flexible in the way that we deploy, train, mentor and develop staff.

Therefore, it is for the long haul. However, as Roy pointed out, 'Delivering the Bamford Vision' is very weak on workforce planning. We must lay the foundation for such thinking in 2008, because it will be 2015 before we reap the rewards of a changed mindset. If we wait until 2015 to begin that, mindsets will not be changed until 2020. From the early days of the Bamford review, we identified the need to promote a change in mindsets. We do not know why we have failed to get that message across. We have talked about it often enough, but there is a comfortableness of staying with the established education and professional accreditation systems and not challenging those. However, we must get away from simplistic solutions, such as allocating a few more doctors, nurses or therapists here and there and believing that that will get us through.

Ms McDonald:
Families are really important to people with a learning disability. It is important to bear in mind that the families of individuals with a learning disability provide a lot of extra care and support to that person, and are required to care for that individual for a longer term than most other families. People use the saying “from the cradle to the grave” in relation to people with more profound disabilities.

The problem is that families are not getting the information that they need about their child’s disability. The child may even be diagnosed and get treatment. However, families also need information on the benefits to which they are entitled. They need to know about the support groups so that they can talk with other families, and about the services that they can use. They are still not getting information on that. The Government will not say what they are doing to ensure that those families are getting the correct support and information that they need to care for an individual with a learning disability.

The Chairperson:
Thank you very much, Joanne. I want to reassure your organisation that the Committee is fully committed to ensuring that the mental health aspect of delivery is done in a seamless way across the board. We all want the same objectives. Anyone with special needs, learning disabilities or depression, ranging to extreme psychotic depression, and including alcoholics and drug users, has a right to a proper system of care and professional access. We applaud what you are doing, and we will keep a close eye on the consultation. I have no doubt that we will invite the board back to the Committee.

Joanne, I pay tribute to you for being able to come here today and speak so well on behalf of people with special learning disabilities. You are a credit, and you are an inspiration. I thank you personally for how you have made your views known on behalf of the people you represent.

I thank also Paschal McKeown, Roy McClelland and Roy McConkey for their time.