A BBC Panorama documentary in May 2011 focused on Winterbourne View, a private hospital for people with learning disabilities, run by the Castlebeck group. Viewers saw inpatients being abused and humiliated. After investigation by police and the organisation, six people were jailed in 2012 and five were given suspended sentences.
Promises were made at the time to reduce the number of people who were being cared for inappropriately in institutional settings, for too long, and too far away from their homes and families. Improvement was promised by 2014, but this did not occur. Instead, it was found that the number of people with learning disability admitted to institutions was higher in 2014 than the number being discharged to the community.
Why Only in England?
As a result, and to its credit, NHS England asked Sir Stephen Bubb this year to set up a working group to look at overhauling the commissioning and provision of suitable care for people with learning disabilities and/or autism. We have to ask why only in England? Unfortunately other areas of the UK have their institutions which seem no longer suitable.
The report, written by Sir Stephen Bubb, has been released and it makes good reading. It recommends introducing a charter of rights and more community facilities for people with learning disabilities, and advocates more power for families and people with learning disability to have a say in how their support is commissioned and delivered. He recommends: ‘the pooling of health, social care and housing budgets, and to mandate NHS and local government commissioners to draw up a long-term plan for spending that funding in a way that builds up community services’. Co-commissioning with charities and social enterprises is also advocated in the report. This is new in social care, although developing in some areas in the NHS, and it offers new solutions to these problems.
Targeted timetables
However, we need more than good recommendations: there needs to be targeted timetables for closures and for new services. Gary Bourlet from advocacy group People First England, who has a learning disability, says: “The report is full of good words. But there’s not much here that hasn’t been said before. We need someone to take charge of making change happen. And that person should be working alongside someone with a learning disability. We call that co-working. And we need a timetable as well.”
The report is at least encouraging in seeking to identify why there has been so little change: ‘Our view is that progress has been so slow … because the people most eager to change the system (people with learning disabilities and/or autism and their families, enthusiastic providers, clinicians and commissioners) have had too little power or support to do so!’- p 18 of the report.
There remain fundamental problems in the support of people with learning disabilities and autism:
- Do people with learning disabilities need to be treated in hospital anyway? My understanding is that hospitals are for illness, and that learning disability is not an illness. Yes, people with learning disability may become ill, physically or mentally, like the rest of us. But their particular needs mean that hospitals and carers need to exert greater care and attention in dealing with their support during illness.
- Assessment may simply be another way of saying ‘isolation’ , for that is what institutions notoriously did, – “out of sight, out of mind” as Vivien Cooper from the Challenging Behaviour Foundation said at the time. The distress and suffering of families who became aware of this abuse was also stressed by Vivien.
- Assessment in separate residential centres immediately changes the life which is being assessed. If older people can be assessed for support while still living at home, why is assessment different for some people with learning disability?
- Most importantly is the need for changed attitudes and for greater acceptance and respect for people with learning disability. I cannot guess how this could be done. Sir Stephen’s worthy advocacy of listening to, and empowering people with disability is a good beginning here.
If people with serious physical disability can be supported to have their own tenancy, we have to ask why this cannot be done for people with learning disabilities. In the wake of the Winterbourne View scandal, the Government pledged to move all people being ‘inappropriately’ cared for into community care by June of this year. However, between 2,500 and 3,000 people with learning disabilities and autism are still living in institutions throughout England, and there are still more people being admitted than are being allowed to go home, Sir Stephen Bubb’s report confirms.
What needs to be done now?
The NHS has broadly welcomed the report but said that not all such facilities would close, with a small number “allowed to remain open to provide inpatient beds for people with learning disabilities detained under the Mental Health Act”. This may be self-fulfilling to some degree.
I think the issue here would be to work for services that can prevent, reduce and if possible eliminate the serious mental health needs which makes this detention necessary. After all, to be taken away from your home and family with little say in the matter, or not to have the respect and dignity that is your right, is sometimes imposed on people with learning disability: it is therefore not surprising that mental health problems ensue. Being treated as an equal member of the community with appropriate local services would surely go a long way to reduce mental health problems.
All services need to campaign and plan for smaller, local and better provision, and to support the innovative social enterprise and service partnerships which are springing up.
We need to campaign for law change to eliminate if possible detention under the Mental Health Act, if it promotes institutional care. Planners and legislators need to look closely at new funding proposals. We have to be able to afford to prevent institutional abuse, and people have the right to expect that from service providers.
