COMMITTEE FOR HEALTH, SOCIAL SERVICES AND PUBLIC SAFETY
Funding for Muckamore Abbey Hospital
13 December 2007
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
Mr Alex Easton
Mr Tommy Gallagher
Mrs Carmel Hanna
Mr John McCallister
Ms Carál Ní Chuilín
Ms Sue Ramsey
Mr Richard Dixon ) Eastern Health and Social Services Council
Mr Cecil Graham )
Miss Muriel Patterson )
The Chairperson (Mrs I Robinson):
Representatives of the Eastern Health and Social Services Council are here to give evidence on funding for Muckamore Abbey Hospital. The Committee has received a letter and a paper from the Council. Members will also recall that friends of Muckamore Abbey Hospital met Committee members at a reception in the Long Gallery on 26 November. A copy of the paper submitted by that group has been circulated to Committee members.
I welcome the vice-chairman of the Eastern Health and Social Services Council, Mr Cecil Graham, chief officer Mr Richard Dixon, and Miss Muriel Patterson. I remind members that the Transitional Assembly debated the issue of Muckamore Abbey Hospital on 29 January 2007. The motion expressed concern that more than 100 adults and young people with learning disabilities had been forced to remain in the Hospital, some for periods extending to several years. On 30 January 2007, the then Minister with responsibility for health, social services and public safety, Paul Goggins MP, announced an action plan to discharge all patients from learning-disability hospitals, including Muckamore.
I invite you to present your case. You have 10 minutes to do so, and then we will move to questions and discussion.
Mr Cecil Graham (Eastern Health and Social Service Council):
I thank the Committee for the opportunity to make a presentation this afternoon. We are here, as representatives of the Council, to advocate on behalf of people in Muckamore Abbey Hospital. We appreciate that more people than those who are at the Hospital have learning disabilities and challenging behaviours with associated mental-health problems. We are, however, aware of the recent debate about the pressures arising from the comprehensive spending review. We recognise that resources are limited and choices have to be made. We are very concerned that, in the current consideration, and given the comments that were made in the earlier discussion about mental health in the prison service, this will become another “Cinderella” service, and will be forgotten about.
In the action plan that the Chairperson mentioned, Paul Goggins made a specific commitment that, by 2014 — which is only six years away — all people with a learning disability will no longer have a hospital address. No hospitals in England, Wales and Scotland, save one that is about to close, hold the volume of people with a learning disability that we do in Northern Ireland.
That is a substantial point — people in Northern Ireland must not be disadvantaged. People must be encouraged to move into independent living. They must have all of the human rights to which we are all entitled.
We come here as advocates. I have a personal interest in mental illness because I was chief executive of Action Mental Health for eight years. I am a founding director of Acceptable Enterprises (Larne) Ltd and Daisies Café in Newtownards. After this Committee meeting, I will go to Daisies Café for a meeting of its board. We, in the Eastern Health and Social Services Council, advocate on behalf of people and are actively involved on the ground and, therefore, we provide a lot of experience.
We seek the support of the Committee for Health, Social Services and Public Safety to ensure that the commitments that have already been made are not taken off the table because of other pressures on funding. Earlier, someone made the point about robbing Peter to pay Paul. We are concerned that some commitments that were made in the health budget may slip, and that people who deserve something special may be forgotten.
Miss Muriel Patterson (Eastern Health and Social Services Council):
I have had a lifetime of working and meeting those young people and their parents and, and I feel privileged to have been in that position. Since I retired, I have been involved as a volunteer with the Stepping Stones project, where many of those young people are able to gain useful employment. Many years ago I worked with many people at Muckamore Abbey. Recently, I returned there on a visit as a member of the Eastern Health and Social Services Council. I was appalled to find that some of those people were still there, and had been there for many years.
The council had the privilege of meeting about 30 of those people. They were most articulate. Some of them asked why they were there if they had done nothing wrong. They said that they would have been judged had they committed a crime. That was an emotive statement. One question that was asked — and one that remains with me — was why there was no money to support those people in the community when it cost money to keep them at Muckamore Abbey. Obviously, the council could not answer those points; therefore, we have chosen to come to the Health, Social Services and Public Safety Committee to put them forward. Those young people are less able to speak for themselves than are others. Their parents, in many instances, are growing older and are worried about what will happen if they become ill or if they can no longer look after their loved ones. Therefore, much funding must still be allocated to the provision of services in the community so that those young people do not have to spend the greater part of their lives in Muckamore Abbey.
Mr Richard Dixon (Eastern Health and Social Services Council):
We are well aware of the pressures on the whole budget for mental health and disability. In many ways, that prompted our request to appear before the Health, Social Services and Public Safety Committee. We are conscious of the announcements on the funding difficulties and the challenges that Health and Social Services face in making decisions on what and what not to prioritise. However, we talk about a group of people in a unique position. They are unwilling, long-term residents of an institution, because nothing else has been provided for them.
They are a group of people who, previously, have come off worst by decisions on other health and social services’ priorities, for example, the prioritisation of hospitals. They have been disadvantaged. That is why the process of resettlement has been long and drawn out. Under the new jurisdiction — through reform and modernisation, and through the actions of the current Assembly — there is a unique opportunity to take different decisions and to resolve the matter of those people who, although not exactly unwillingly, live indefinitely and unhappily in hospital.
This matter has run on for years, and there is an opportunity now to resolve it, once and for all.
On a final general point, we were delighted with the ministerial announcements on moving people back into the community and allowing them to lead a full life. I trust that the Committee will endorse those announcements and recognise the pressures involved. We have requested a meeting with the Health Minister in order to make direct representations to him. However, we felt that you and your colleagues, as members of the Health Committee, should be fully informed of all the background issues. I know that most members are aware of the general issue, but we want to instil in your hearts and on your conscience that this is a major issue that is worth fighting for.
I take your point. I thank all three of you for your comments. However, to play devil’s advocate for a moment, the Society of Parents and Friends of Muckamore Abbey Hospital holds a different view. In order that the Committee has a balance between its view and yours, what is your attitude to the concerns expressed by many that those with extreme learning disabilities, and so forth, who have been institutionalised for many years could not cope in a community setting? Perhaps you could give us an indicator of what should happen to them.
We are aware of, and can understand, that view, because some of that group started off as young people but are now in middle-aged, and Muriel referred to the issue of people growing older. We must recognise that people have been well looked after until now, and we are not criticising the excellent standard of care. However, they are institutionalised: they are not living out in the community.
We can learn from what happens elsewhere. I am involved in a project in County Durham, working for the social services department of Durham County Council. We are in the process of rehabilitating small units of people who are moving out of hospital. There must be parental support and carers must be on board, but our experience is that when people realise that there is another way, they will support it. At present, in Northern Ireland the opportunities to take another way are limited.
As you rightly say, the people we discuss are at the extreme end of the spectrum. Some people have already been moved out into the community, but more challenging people are subjected to an institutional, hospital, clinical model of care, whereas we advocate a community or social model of care, and that works.
As one psychiatrist told us, about 130 people are deemed able to live in the community.
On behalf of the four councils, I sit on the regional resettlement project team, and the Society of Parents and Friends of Muckamore Abbey Hospital is part of that team. That view is clearly expressed. We do not mean to imply that their argument is invalid, and, if I knew that my child had been safe, well and cared for in Muckamore Abbey Hospital for 10 or 20 years, I would want a lot of reassurance before considering another option, and I am sure everyone can appreciate that. I hope that part of the resettlement process will be to support and enable that.
Before coming here today, we twice met the patients’ group at Muckamore Abbey Hospital. The group comprises about 30 current patients who express with great clarity their desire for independent living, and they clearly understand what that would mean for them — the ability to eat what they want, go where they want and live like other people in the community.
Ms Ní Chuilín:
Have you contacted Margaret Ritchie, the Minister for Social Development? I ask that because money must be spent on supported living. The principles behind the supported living projects, the ‘Living fuller lives’ report from the Bamford Review, and everything that goes with those, rely on the money available in the Budget. Therefore, apart from Michael McGimpsey, you should contact Margaret Ritchie, as well as the Department for Employment and Learning (DEL).
I agree that there must be a joined-up approach. When discussing this subject, issues of equality and human rights come to mind, and the thought that the people concerned could be released, settled and well supported by now. It is really unfair that they are not. If you have not done so already, I advise you to contact those Departments. The crucial tools must be available to ensure that people can lead independent lives, and the onus does not lie with only one Department.
Thank you for that advice, we will act on that. We have made informal contact with departmental officials. Social housing must also be taken into consideration. From my own experience, I know that people with mental illness have been put, without any support, in flats and houses in places like the West Winds estate. Such people, particularly those with learning disabilities, have different needs, for which the standard of social housing is inadequate. Those people need brighter space and higher ceilings, but such requirements are not allowed for. We are seeking a meeting with the Housing Executive to get it involved in a debate. When we were at Muckamore Abbey Hospital the issue of adequate provision of social housing was mentioned, but at that stage there seemed to be a blind approach to facing reality.
Following from Carál’s point, I have seen some amazing village concepts — clusters — where people with severe needs have someone live with them. That is a costly outcome, but it works well — I have seen it work for people with Alzheimer’s and other serious learning disabilities. Many people have contacted me despairing that their loved ones have been sent to live in a flat, in a place like the West Winds estate. They are not treated as human beings and are made fun of because of their obvious problems. I do not want that to be the answer. I concur that DEL and DSD also have a role because there are overarching responsibilities, and I take your point.
There is a need for more clusters with between 10 and 20 homes, where people have a general support structure around them, and live independently at the same time. That requires a cross-departmental approach. However, is a new approach not also required? I ask that because there is a battle for social housing and, due to the current system, we depend on housing associations. I do not mean to be unkind to housing associations, but they are another layer of bureaucracy and cause such projects to take a long time. I am sure that you understand that, but do you agree that we should look for a better way of establishing such projects than the present bureaucratic one?
I totally agree with that. In fact, you made a point about clusters, or even 20 houses, and care must be taken not to duplicate disability ghettos in a smaller way. People must be integrated into the community, and there are other ways of doing that. Housing associations are bureaucratic by their very nature and the size of the beast, and while many of their officials and board members are sympathetic in principle, the scale of their provision leaves no room for sentiment.
However, interesting experiments are going on in other places. I am at the moment involved in one social model in County Durham that is integrated into a private housing estate, not a public one. I do not make any class judgements, but we have found that there is greater understanding and support there, particularly among people who volunteer to come along and help. I have seen that model working in the Netherlands, Germany and Finland, so there are other ways.
There is another model at Gray’s Park off Shaw’s Bridge, which is central to the public-sector housing, and it is a wonderful role model that has proved to be very good for people with special needs and learning disabilities. I have visited there, and the people in that little community are lovely. They have mixed well, and there was no outcry of “Not in my backyard” (NIMBY), which is an unfortunate attitude of today that seems to be endemic.
It is important that the local people be educated in the forward planning, so that the NIMBY effect does not arise. In the experiment in County Durham we spoke to the local residents, principals of the local schools, local clergy and the local council before we even started. The door was open. It is when things are parachuted in without prior consultation that problems occur.
Absolutely. That was done, and it staved off an awful lot of animosity and resentment, and now after several years it is well integrated.
I take all those points on board along with what seems to be a suggestion that what is required may be some new joined-up, visionary, strategic thinking about people’s needs. Let us not forget the current and future needs of people with learning disabilities, which is a group in Northern Ireland whose numbers are growing and whose care is provided by increasingly older people. There will probably never be a better time for a visionary approach, because the problem is getting larger.
I do not wish to pre-judge your decision but, if the Committee is in tune with the view that, although we understand the pressures on all budgets, we see this group of people as historically and uniquely disadvantaged and deserving of a priority that they have not enjoyed up until now, it would be of tremendous help for the matter to be raised on a cross-departmental level in the Assembly.
Certainly, as a Health and Social Services Council we can advocate to the best of our ability, but, the bottom line is if we come up against, for the sake of argument “silo thinking”, any other Department would be well within its rights to tell us that this issue is not in our remit, because we are a Health and Social Services Council, and we are supposed to relate to health and social services — not to education or housing.
I make that appeal. I absolutely agree that we need a new vision and strategy, and if it were cross-departmental it would be great to see it led at Assembly level.
Rev Dr Robert Coulter:
To get down to the nitty-gritty, how many people are you talking about moving out? A lot of money has been spent over the last few years on buildings at Muckamore Abbey. What will happen to them?
There are approximately 200 people from Muckamore Abbey, and that number trebles when all of Northern Ireland is taken into consideration.
In terms of the rebuilding programme at Muckamore Abbey, there is an understanding and a recognition that some clients, who need specialist help, cannot be resettled in the community. Through that programme, which includes forensic clients, provision has been made for rebuilding for 87 beds. Richard is involved in a planning group, and may elaborate on that matter.
My understanding is that necessary facilities of a type will remain at Muckamore Abbey Hospital. We refer here to people who are delayed in a process; the assessment and treatment that they require has been completed — and my understanding is that that will still be provided at the new facilities, among other places — and they now, simply, endlessly mark time. We advocate for that group of people. With regard to the role of other facilities, there will always be a need for specialist inpatient assessment and programmes of treatment. However, then there must be somewhere to go. We are here, primarily, for that group of people.
Rev Dr Robert Coulter:
How many of those people are there?
How many people need somewhere else to go?
Rev Dr Robert Coulter:
Yes, from Muckamore Abbey.
According to our figure, there are 223.
The Committee will send a copy of your presentation and our questions to the appropriate Minister. That may be followed by a letter and a copy of the Hansard report of the meeting to the Minister of Employment and Learning and the Minister of Social Development, which may help to push everything along. I suggest that you make your own request in writing to have a meeting with the appropriate Ministers.
We understand where you are coming from. There are two arguments, and you have addressed both: you recognise the necessity for those with severe problems to be accommodated in a place where they feel safe and secure; and that those who are able to go into the community should have that right. I thank you for coming along this afternoon, and I wish you a merry Christmas and a happy new year.
I reciprocate that. Thank you for the opportunity to address the Committee.
To make a last point, most people who have learning disabilities and challenging behaviour also have mental health problems, and at Muckamore Abbey we would not want any solution to be at the expense of the wider pressures on the mental health and learning disability budgets. Thank you; and every best wish for 2008 and Christmas.
Daisies Café, which I am involved with, is a tremendous model, and it is great to see how happy the young people who work in the café are. Please give them all my best regards.
Your personal support is much appreciated; thank you.