Call to action: what would it take?
Jan Walmsley issues a powerful rallying call to rediscover the determined spirit that liberated people with learning disabilities from long-stay hospitals four decades ago
Things are not good for people with learning disabilities and their families.
Just read Norman Lamb’s motion to the House of Commons earlier this year (Hansard, 2018) which listed neglect, abuse, poor care and premature deaths, not to mention the failure of Transforming Care to release the thousands of people inappropriately detained in assessment and treatment units (ATUs), or the absence of support for families that might actually prevent the sorts of crises that lead to ATU admission.
‘I cannot think of any professionals now calling for a halt to neglect and unnecessary incarcerations in private hospitals’
What would it take to shift things? Winterbourne View did shake things up, but its impact has faded. Transforming Care is a bureaucratic triumph whose achievements appear to be minor, as the recent interview in this magazine with Ray James, the first national director for learning disability at NHS England, seems to suggest (Kelly, 2018). Brave families who have lost a child or been beaten up by the system have made some inroads. But not enough.
Only 11 MPs attended the debate initiated by Lamb in July- hardly evidence of a hot topic.
However, I did encourage myself by remembering that, bad as things are now, they were worse 50 years ago, when there were 50,000 people in long stay hospitals, including, amazingly, children as young as three. People did not believe it was possible, but they did close. Are there lessons for us today?
Leadership for change
It took powerful leadership to force the closure of the long-stay hospitals – I will come to that. But first, I invite you to think: where is the leadership for change now?
I can think of two politicians (two!) waving the flag – Norman Lamb and Baroness Sheila Hollins. There is NHS England, bogged down in bureaucracy and spin. There is Learning Disability England, the new kid on the block, representing self-advocates, families and some (far from all) provider organisations. It is a struggle to reconcile all those different interests, and they are finding their feet.
This brings me to Mencap, its image badly tarnished by Danny Tozer’s death in one of its care homes – and the way it approached the inquest (Inquest, 2018).
There are the amazing family members – Sara Ryan, Paula McGowan, Mark Neary, the Tozer family, Nico Reed’s relatives and so on – forgive me if I have left you off the list.
There is a stark contrast with the past. Looking back, I see several leadership nodes. National politicians were goaded into action by the Ely Hospital scandal in 1969, as with Winterbourne View in 2011.
In 1969, the embarrassment was enough to stimulate a white paper, published in 1971, committing the government to expanding community services such as hostels and day services (HMSO, 1971). There was money and there were deadlines. These were, of course, missed, but steady progress brought community services virtually everywhere by the late 1980s – earlier in most places.
After Winterbourne View, we had targets (all missed) and then Transforming Care which – let’s be honest – has failed, while other forms of social care have shrunk.
It was not just political leadership that brought pressure for change in the 1970s. Health think-tank the King’s Fund espoused integration for people with learning disabilities. Under its umbrella, academics, campaigners, professional leaders, families and self-advocates could meet and plan. It sponsored important publications such as An Ordinary Life (1980) which set out a vision for an inclusive society.
Professionals stepped up, in bodies such as the Campaign for Mental Handicap, later Values into Action, and the Association of Professions in Mental Handicap.
They were influenced by training – known as Pass and Passing – imported from the US. It was hard to find any professional in ‘mental handicap’ who had not experienced a Pass course in the late 1980s. This involved five days of having the ‘right’ values drummed into their heads – integration and community living, social role valorisation and normalisation. It was enough to marginalise any voices opposing deinstitutionalisation and to show them as being motivated by self-interest.
It is here that the contrast with now is most striking. I can think of no examples of professionals calling for change and a halt to huge cuts in services, neglect and unnecessary and expensive incarcerations in private hospitals.
I get no sense that there are organisations representing professionals standing alongside the families and self-advocates fighting for better lives, and no equivalent to Pass/Passing to unite professionals and other workers behind a set of values. I wonder why?
Campaigning
This brings me to family campaigning. Mencap was the voice of learning disability in the 1980s far more incontrovertibly than it is today. Despite tensions between the centre and local branches, it was able to claim the moral high ground.
In the Open University where I then worked, it was a valuable ally, able to muster resources, influence the Department of Health and senior politicians and raise money.
It was also in the 1980s that the seeds of its current problems were sown. The decision to become a service provider, and a failure to adequately respond to the challenges posed by self-advocacy were strategic weaknesses that continue to dog it today.
So, although individual, loosely allied family voices are powerful today, using social media to get messages out, they are not united and nor, as far as I can tell, are they sufficiently well connected with influencers.
Last but not least, I come to self-advocacy, which became rooted in England in the early 1980s and has flourished. It can claim not only local but also national influence, setting the stage for the consultation that preceded Valuing People in 2001.
It is sad to think that its apogee, the National Forum of People with Learning Disabilities, disappeared in 2017 with barely a whimper.
Lead locally to make things work
So much for the vibrant national scene in the 1980s. This created a climate in which people could unite behind a common vision of ‘an ordinary life’.
But, as always, national scandals and energy fade over time. There was no consistent leadership for the closure of the hospitals during Margaret Thatcher’s administrations. To make it happen took local leadership.
I had a chance to learn about this earlier this year when I was contacted by David King, now resident in New Zealand. In the 1980s, he was in charge of the health authority which was the first to close a large, long-stay ‘mental handicap hospital’ – Starcross aka the Royal Western Counties in Devon in 1986.
“Starcross was totally inappropriate for anyone. I used to visit Starcross and came away punch drunk and bemused”
I interviewed both King and the woman he appointed to make the changes on the ground, Christine Elliott, and asked what the lessons were that might help foster change today .
First: don’t rely on experts
‘Not one of the very able and experienced people involved in health and social services locally were pressing for the institutions to close Ð rather, they were urging they be made more hygienic.’
Neither King nor Elliott knew anything about learning disability. Yet to them, it was obvious that an ordinary life was the way to go. No ideology was required.
‘It astounds me how long it all took. Nobody would have benefited from staying at Starcross – nobody. It was totally inappropriate for anyone. I used to visit Starcross and came away punch drunk and bemused.’
Second: find your allies and change agents
There were false starts with psychiatrists and psychologists. In the end, King found Elliott who, like him, knew nothing about ‘mental handicap’.
‘She used to come to Starcross to minute the meetings and one day she said to me it has to close,’ he says.
In turn Elliott found people she could work with – enthusiasts and visionaries, who were not necessarily in formal leadership positions.
Third: don’t underestimate the task of implementation and don’t use a lack of funds as an excuse
Funds are always being wasted on the wrong purpose. It put me in mind of a current case where the local authority is paying thousands to keep a man in an ATU while also funding his home in London and a staff team waiting to work with him when he comes out.
Fourth: find out who will oppose you, and negotiate
In the 1980s, the trades unions were the first port of call, as jobs were threatened. By guaranteeing jobs for everyone in the new community services, there was little opposition in Devon. It had its downside – not everyone was suitable. Some opposition, like unreasonable protests about new homes, just has to be faced down.
Fifth: get families and the media on side
Are there lessons for today?
History does not repeat itself neatly. There are many differences between then and now.
The big message is that things can change for the better. It needs levers in all parts of the system – it does not necessarily need the secretary of state for health to throw his or her weight behind change.
Where we seem to be lacking in comparison with the 1980s is:
– A shared vision of a better life and a belief that it is achievable
– A loud, reasonably united and well connected ‘user’ movement
– Professionals committed to change
– Powerful local leadership.
Let’s start a debate. We have nothing to lose but continuing deterioration.
– What do you think? Send your responses to this article, and your ideas about how a movement for change can start again. Email editor simonj@jarr.demon.co.uk. We want to hear from you.
DHSS (1971) Better Services for the Mentally Handicapped. London: HMSO
Hansard (2018) Transforming Care Programme. House of Commons debate. http://tinyurl.com/ya7bbuw6
Inquest (2018) Inquest Concludes into Death of Danny Tozer in Mencap Supported Living. Press release. www.inquest.org.uk/danny-tozer-conclusion
Kelly S (2018) ‘Better lives and not in hospitals.’ Community Living 31(4):12-13
King’s Fund Centre (1980) An Ordinary Life: Comprehensive Locally-based Residential Services for Mentally Handicapped People, March 1980. London
