Care and treatment of people with learning disabilities

Speech by David Ford delivered to Transitional Assembly, Stormont on Mon 29th Jan 2007

In supporting the motion, I declare an interest, not only as a member of the constituency that houses Muckamore Abbey Hospital - technically, that may not be an interest - but as a former social worker with the Northern Health and Social Services Board (NHSSB), who, at times, was involved with the rehabilitation of those leaving Muckamore Abbey Hospital to rejoin the community in the NHSSB area.

I well remember an occasion in the late 1980s when a colleague of mine was given a senior social worker post, advancing that rehabilitation process. It is appropriate that each of us taking part in the debate acknowledges the contribution of dedicated staff in meeting the needs of those with learning disabilities. Whether they are the staff who provide nursing and other forms of care in Muckamore Abbey Hospital and the other two hospitals, or whether they assist people's moves to the community and provide day care or support in the home, they are all vital to ensuring a quality of life for those who need the services of the learning-disability teams.

Some of the problems in Muckamore Abbey Hospital are due to the success of the increased shift to com­munity care. Over the past 20 years, between 500 and 600 people have been moved out of long-term care in learning-disability hospitals and have been given better lives in the community. However, some of them have not always had the good lives in the community that they should have had, because the resources, which were already inadequate, have not been increased. The simple fact is that it costs more to keep people in a quality environment in the community than it does to keep them in large institutions, and, as a society, we have not always accommodated that fact.

We must also pay tribute, not only to the staff from Muckamore Abbey Hospital, but to the individuals - in many cases, family members - and the voluntary organisations that have provided community care, enabled the moves to the community and made matters better for those people who receive that care.

It is, perhaps, an interesting coincidence that there are representatives of the Buddy Bear Trust Con­ductive Education Independent School in the Building today. The trust is particularly concerned about young people with cerebral palsy. It promotes the good work that is being done in the community, but is being hindered by the fact that the work is very expensive and is not properly resourced.

It is no surprise that when Mencap published a report in 2003, it called it 'Breaking Point - families still need a break'. It seems that much of the pious talk about community care actually results in giving the minimum support possible to families, which does, at times, leave parents at breaking point. For example, on simple issues such as respite care, it is now much harder to get placements, particularly for people in their 20s and 30s, than it was a few years ago when they were children or teenagers. There is a real need to ensure that the services are rebalanced, and that has not been done. It is not just about Muckamore Abbey Hospital and the other two hospitals; it is about the package of services that is provided to those people with learning disabilities.

I remember questioning the Minister of Health, Social Services and Public Safety about that issue in the Chamber. I received acknowledgements from her that, for example, the year-on-year percentage increase in funding across different services was always biased towards acute hospitals and against community care. Provision for people with learning disabilities and mental-health needs consistently came at the bottom of the pile. They really were the Cinderella services. However, if the Northern Ireland Assembly debated acute hospitals, particularly the location of maternity services between two hospitals that are one mile apart in Belfast, Members filled the Chamber, and everybody cared. Contrary to that, we are now facing the position that, because the Assembly did not ask serious questions of the Department and the Minister when it had the power to do so some years ago, Muckamore Abbey Hospital has inadequate resources, and there are people in real need and really suffering.

Therefore, before the Assembly starts to point the finger too much at other people, there are Members in the Chamber who should ask whether, when we had the power, they did all that was necessary. I am not entirely convinced that we did. There was much more that the Assembly could, and should, have done.

There are three sets of actions that need to be taken to address the needs of patients in Muckamore Abbey Hospital. First, there should be a general enquiry as to exactly what is happening. I was pleased to hear the Chief Commissioner of the Northern Ireland Human Rights Commission (NIHRC) intervening when the story broke, and, subsequently, I have had a con­versation with her. I am glad to hear that the commission is doing ongoing work.

I am not sure whether that work will extend to a full-scale inquiry, but such an inquiry must be convened. It should not be simply an internal DHSSPS matter, with civil servants saying how hard everyone has tried, but that the money was not there.

There must be genuine recognition that the human rights of citizens have been interfered with. Even if those citizens do not have voices of their own that can heard in the media, they ought to have the voices of public representatives and of agencies such as the Human Rights Commission to ensure that their rights are looked after.

I welcome the comments of another former Assembly colleague, the Commissioner for Children and Young People, on this matter. However, we should recognise that many of the patients concerned are adults, not children. It is slightly denigrating to the position of such patients to concentrate on them as though they were all children. Clearly, there are children with considerable needs, but there are also adults with such needs. We should not focus only on the children.

The second matter that I wish to address - whatever the current financial restrictions - concerns the actions that the North and West Belfast Health and Social Services Trust should take. The trust has recently acknowledged that it knew that there would be problems with some of the current arrangements, that there would be difficulties with some people settling in, and that a review process would be carried out. That is fine, but I wonder how much of that review would have come to light had BBC journalist Dot Kirby not highlighted it.

Any strategy of locking doors on patients who should be in community care needs a fundamental review. Whatever need there may be, at times, for a small minority of patients to be placed behind locked doors, there is absolutely no way that locked doors should be a substitute for proper nursing care and remedial services, which are, by and large, what those patients require.

The Eastern Health and Social Services Board and the North and West Belfast Health and Social Services Trust must both examine their actions and why they had failed to take action until the media got on their backs. Their staff have done much good work, but there have been failures that have led to the current situation. However dedicated those staff have been in trying to make the best of a bad job, they should not have had to make the best of a bad job.

The third area that I wish to address is the need for a commitment from the DHSSPS to the full imple­mentation of the Bamford Report, as other Members have said. The deafening silence from the Minister and from senior civil servants on the various aspects of the Bamford Report, as they have been published, is quite horrifying.

We in the Chamber have acknowledged what needs to be done. We know how much ought to be done, and we have seen the difficulties of funding in the past. However, we still have a Minister who is not prepared to give the necessary commitments to provide basic services and basic necessary care for some of our most needy citizens.

It is simply unacceptable that bodies such as the Buddy Bear Trust and Mencap should be running services on a shoestring budget and on a charitable basis because they are not being funded properly by the agencies of the state that have relevant responsibility. In that sense, however, Northern Ireland is not unique. Generally, as a society, we have been fairly poor at providing long-term care for those who need it. We have been fairly good at providing intensive nursing and medical services for those who have acute problems, but those with a long-term or lifetime care requirement have, by and large, not been treated well, whether it be in Northern Ireland, the Republic, England, Wales or Scotland.

There have been problems in every region of these islands, but the Bamford Report has highlighted what needs to be done, what could be done, and what must be done as soon as possible in this, the smallest of those regions.

It is very easy for the Assembly to agree a more or less motherhood-and-apple-pie motion. There is nothing wrong with saying that we are in favour of motherhood and apple pie, but the real test will come at some point after 26 March when we will see whether Members who make the right speeches today are prepared to put their votes into ensuring that the necessary resources are supplied to implement the recommendations of the Bamford Report.