A recent article by my old friend David Brindle in the Guardian highlighted the problem we face in moving people with learning disabilities out of hospital into the community and reflects the background of the work we are doing on a commissioning framework in our NHS England steering group.
The problem we need to tackle is that more people with learning disabilities are being placed in hospitals like the one at the centre of the Winterbourne View scandal than are being moved out, despite a brave government commitment to move all people out of inappropriate inpatient facilities. Latest official figures released four weeks ago show that in the three months to the end of June, 358 people were admitted to so-called assessment and treatment units in England. Only 261 were discharged.
A subsequent review by the Government following the scandal concluded that personalised care and support in appropriate community settings is vital. There is a strong consensus around that aim. But so far the transfer programme was supposed to have either moved people out of the units by 1 June or given them a firm date for discharge. So progress is painfully slow. However much work has gone on and since taking this area of work on, NHS England has put in place urgent actions to move towards securing the goals on transfer. I believe we have an opportunity now to make real progress and secure the community support for people with learning disabilities that they and families want. The current system places too much of the power of decision out of the hands of people with learning disabilities and their families and we need to devise a system that shifts that power from the state to the citizen. That aim must underpin our work in devising a new national framework.
The latest figures, collected by NHS England, show that the number of people given a date for transfer did double over the three-month period to 577. However worryingly, in almost four in 10 of these cases, the local councils concerned did not know that the individuals would be returning to their home communities.
In 50% of all 2,600 cases – which include 147 children – councils had no idea that they would need to help make provision for people returning from Assessment and Treatment units. Jan Tregelles, the CEO of Mencap is quoted in David's article: "We know people with a learning disability need joined-up local health and social care support. This is clearly not happening. When this is not in place, people are more likely to end up right back in the very units they are being moved from."
NHS England has recognised this and with the steering group I have been asked to chair we are looking at how a national framework for commissioning and social finance could enable the build-up of community support. We are reviewing the work that has already gone on so we can build on that. The aim is "personalised care and support in appropriate community settings " and a shift to a system that emphasises citizen rights in the care system. Our last steering group meeting looked at an initial paper from Bob Ricketts, someone I regard as one of the country's top experts on commissioning which posed questions we need to consider in developing our recommendations on commissioning. We also looked at issues facing a large scale move to community support in the training and development of the workforce. And shortly an expert reference group on social finance will meet to examine how to fund community support. And as we committed, we will be publishing the minutes and papers of the meeting from last week on the NHS England website.
But this work is one part of the much wider ongoing system change that is needed. If this is to work in practice, there needs to be an ongoing engagement and dialogue with the people with learning disabilities, and their families and carers. Without that, this simply will not work.
Lots of meetings but no action yet! Claire Dyer's section s due to run out so she asked if she was going to be discharged. Not a hope - they'd already renewed the section without telling her. Still failing!
Please make sure this is financed properly. Doing things on the cheap won't solve problems. Also, so much money gets taken in 'commission' by the middlemen that the pennies spent on the care of the disabled person soon diminish. If councils and governments insisted on proper value for money and followed up on it, there would be less waste within the system. People are going to have to think creatively too if this is going to work. It's too easy sometimes just to fork out for the simple option. That's really why people end up in ATUs and similar places.
And here's another case. Believe me -you have no idea of the evil you are up against!
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