Reflections on the Transforming Care Programme

The All Party Parliamentary Group on Learning Disability (APPGLD) meeting on the 18th of November 2015 discussed Transforming Care: ‘building the right support in the community and closinginpatient units’.

Transforming Care is the title NHS England has given to its plans to bring people out of distant Assessment and Treatment and Inpatient Units to be supported nearer home.

Mencap produced an excellent Briefing Paper to support this meeting of the APPG, presided over by Chris Heaton-Harris MP – the new chair of the APPG, and addressed by the Care Minister Alastair Burt, Chief Nurse Jane Cummings, Viv Cooper of the Challenging Behaviour Foundation and David Jack whose son spent 6 years in an inpatient unit.

The briefing paper indicates why I might have attended this with a sense of déjà vu. I have followed with a sense of despair the battle being fought by Connor Sparrowhawk’s family for justice for their son, and the obstacles placed in their way. I listened to heart rending stories from families at an APPG last year at which Simon Stevens seemed powerless to implement the Winterbourne View Concordat. Now there is renewed energy and even some political muscle being brought to bear with Building the Right Support published in October 2015 re-committing to closure of in-patient beds.

What is different this time was a theme of the questions. Very fair. We have heard all this before. There is a difference this time. £30 million has been committed by Government to support Local Authorities with transitional costs associated with building community supports while still paying for in-patient beds. There is more money for capital funding, and some ‘dowries’ for people who have been incarcerated for more than 5 years. That helps, for sure. I have argued elsewhere that DHSS money was the crucial factor which enabled hospital closure in the 1980s.

But … why do I remain less than convinced that all this high level attention won’t necessarily change things. The commitment appears to be in place, and to be genuine, but methinks the gap between rhetoric and reality has never been greater. So what is needed on the ground? Some findings from SHLD research came to mind.

Sue Ledger’s PhD ‘Staying Local’ examined what enabled people to remain in their own locality, an inner London Borough. What did she find? That family carers were successful when they had ‘social capital’, from other family members, local staff, faith groups, neighbours and friends. That such networks were fostered through Borough based segregated services, like hostels, Day Centres and local Mencap groups or Gateway Clubs. At times of crisis, responsive and flexible support was crucial. Local staff who knew the families in their patch were able to avert out of area placements at times of crisis by taking responsibility for sorting something out. It might be finding a respite bed when a key family carer was unwell. It might be putting in place interim arrangements while longer term solutions could be set up. It might be creating ways to support people which were at variance with ‘official’ service remits. Shared care arrangements between families and services. Help getting to medical appointments. Assistance in getting tenancies transferred when the carer died. In all cases this required trusted relationships between families and staff. It required staff who knew people as people, knew their histories, who and what mattered to them. People willing to break a few rules. And people who had a commitment to keep them local.

Just imagine if this had been the response Connor Sparrowhawk’s family had got from Social Services when they asked for help back in 2013. He would not have needed to go into the Short Term Assessment and Treatment Unit. He almost certainly would not have died.

But it is hard to imagine in this world of transitory and distant care managers how such a response could be engineered now. There are no hostels which can provide a bed for a week while a carer needs to go into hospital. There are no local staff with a sufficiently broad remit to take that kind of responsibility. And I fear I was not convinced that the high level support, even the excellent and apparently committed leadership from Jane Cummings and her team, is enough to rebuild those supports where they really matter, with local families struggling to manage. I hope to be proved wrong.