What if this was me?

Sir Stephen Bubb caused something of a storm when he first blogged that he had been invited by NHSE CEO Simon Stevens to convene a committee to make recommendations about commissioning new kinds of care for people with learning disabilities who are currently poorly served by ‘special hospitals’ or ‘assessment and treatment units’ of the kind seen in the Winterbourne View abuse scandal. Bubb subsequently recognised he had struck the wrong tone and subsequently made tangible attempts to engage with people with learning disabilities, including representatives of the 100 people with learning disabilities who gathered with CHANGE in Leeds, who then took their recommendations to a summit in the Autumn. Simon Stevens called those recommendations the clearest and strongest policy document he’d read thus far in his new roles and I think Sir Stephen and his committee recognised their strength as well. I had the privilege of co-working with Shaun from CHANGE as he facilitated and presented on rights at one of the committee’s meetings and the committee has said it will focus on stronger rights as being inseparable from stronger systems or commissioning.

So it is a report which didn’t have the most auspicious beginnings, and which is hardly the first attempt to make recommendations for change, after three years of well-intended work by good people, which has nevertheless failed to make any impact upon the numbers of people being admitted to institutions. But it’s a report which I believe may well make some more radical recommendations than many which have preceded it. This may be because we have had an ‘Improvement Programme’ when what many have been calling for is a closure programme.

The people with learning disabilities were certainly clear that they were calling for closure of all institutions. Shaun works on closure programmes in Easter Europe and told the committee in no uncertain terms that in his experience of being a professional who has a learning disability, it was easier to be taken seriously as a colleague and a leader in Eastern Europe, despite their recent history of institutionalisation, than the UK.

The issue of closure is fraught with risk though. What if the institutions closed and there was nowhere suitable for people to go. The long-stay hospital closure programmes of the ‘90s swept away a large number of outdated buildings, but some people felt abandoned, or found themselves living in care which felt institutional despite the smaller building. There will always be people with learning disabilities who have mental health problems, and in some cases they will need to be admitted to hospital. Two points I’ve heard recently at events have seemed to me to offer a useful way of thinking about this issue.

The first is that people with learning disabilities are, sadly, over represented in the prison system, and their experiences of prison can be terrible. But no one builds ‘special’ prisons; nor should they. The challenge is avoiding imprisoning people with learning disabilities and improving prison for those who must be there. So perhaps what we should close are units which are reserved only for people with learning disabilities having an acute mental health episode. This would require those services to employ learning disability experts and improve their practice, but that might be to the benefit of the whole mental health system. Treating a mental health issue as if it is a learning disability issue helps embed segregation, low expectations and a lack of rights culture.

The second is related. It is that there is a strong emphasis in the NHS on avoiding admission and speeding discharge. There are penalties for delayed discharge. Why don’t those things apply to people with learning disabilities? Again, a ‘special’ case is made, helping to create a culture in which the necessity of institutional care is assumed, rather than a culture of problem-solving.

Both of these suggestions – and the fact that neither was in common currency – suggest to me the way in which we have ingrained in us a medical model of disability when it comes to people with learning disabilities. We are too ready to see deficits, problems and risks; to think of people with learning disabilities as a ‘special case’. We are not able enough to start from the point of view of ‘What response would I want in this situation? And what would I expect professionals and services to do to make it happen?’

The solution to that way of thinking is not in the gift of the Bubb Committee. It lies in employing more people with learning disabilities in leadership roles: people who have less difficulty in thinking ‘What if this was me?’