We, the families of loved ones who have been or are currently in assessment and treatment units, have long called for a closure programme and real action that makes a true difference to people with a learning disability. Last week there was a glimmer of hope that our calls for change have finally been listened to.

We have a deep understanding of the failures of the system so far and a powerful determination to see change. We have been bitterly disappointed by the government’s failure to drive change since the abuse scandal at Winterbourne View and the continued use of out-dated and dangerous institutions.

The last few weeks have seen a flurry of reports and data released around the post-Winterbourne ‘Transforming Care’ Agenda and it all came to a head at a meeting of the Public Accounts Committee (PAC) on Monday 9 February.

The committee questioned key people from the Department of Health and NHS England about the failure to date to move people with a learning disability and behaviour that challenges out of assessment and treatment units and back to their local communities, and what they would do next to address this. Here's a run-down of what happened:

It started by highlighting the human cost of failure to date

Vivien Cooper, CEO of the Challenging Behaviour Foundation, David Congdon, former Head of Campaigns and Policy at Mencap and CBF advisor, and Sir Stephen Bubb, Chief Executive of ACEVO gave the committee important background information. They made sure it started with a focus on the lives of people:

Vivien Cooper: "The key thing for me is the human cost of that, because we are talking not just about process, but about people’s lives.

David Congdon: "Parents know best the needs of their sons and daughters, and they are usually horrified when they find their son or daughter sent hundreds of miles away to an assessment and treatment unit."

Sir Stephen Bubb: "It is far too easy to do the wrong thing, which is to put someone in an institution and not in the community, and it is too difficult to do the right thing…If you read the response of NHS England, it is couched in euphemisms. It will not use the word 'closure', but these institutions have to close."

Failings were acknowledged

Simon Steven, CEO of NHS England: "My belief is that none of us should be sitting here defending the indefensible."

Una O’Brien, DH: "I accept that guidance is not enough."  

John Rouse, DH : "We have to rebalance where the power is within the system."

Priorities were examined

Dame Anne Mcguire ensured that the DH and NHS England saw clearly what a shockingly low priority people with a learning disability have been in the health service. There are NHS figures available on the numbers of people who have had their appendix out and who have had heart operations, but until recently it has been very difficult to get proper data about people with a learning disability.

Simon Stevens: "My first job in the NHS, 25 years ago, was working for the mental health service in North Tyneside and Northumberland. We were closing the old Victorian psychiatric hospital that had been serving the people there. Just down the road there were two longstay learning disability hospitals. It is troubling that, 25 years later, the mental health services in North Tyneside and Northumberland have been dramatically re-provided, yet there are still 200 or so long-stay learning disability beds in that part of the country."

A closure programme was announced!

To our surprise, Simon Stevens then announced the long-awaited closure programme - something that the NHS England "next steps" report, published last week, had not mentioned at all. He said it was "new news for today’s committee."

Simon Stevens: "There must be a permanent shift away from the residue of institutional care models that we have’ and ‘the time has come to say that some of the remaining facilities are going to have to close and care will have to be re-provided in a more radical way." 

A hospital is not a home

Some of what was said at the meeting echoes what we have been saying for years:

Jane Cummings, NHS England: "It is absolutely fundamental that our premise is that nobody should be in an in-patient setting unless there is absolutely no other option. A hospital is not a home and should never be thought of as such."

Do they have the power?

When asked if they have the powers to have a closure programme, Simon Stevens confirmed: "Yes we have got the powers to require the care and treatment reviews…and we have the power to make the decision about whether these facilities will continue to be funded."

It was in our minds that whilst NHS England may be able to drive change regarding NHS assessment and treatment units - what about the private ones? Margaret Hodge clearly thought the same, asking if they could direct the private hospitals to undertake this as well, to which Stevens said: "Yes we can."

When asked again if he had the powers he said: "Through the commissioning group and also the Care Quality Commission regulates and licenses providers." He said that details of the closure programme would be announced in the next six months.

Remembering the next generation

It is always particularly heartbreaking to hear about children stuck in assessment and treatment units far away from their families, such as Josh Wills.

In all the reports post-Winterbourne, the main focus has been on moving adults out of units and there has not been enough of a focus on children and young people and getting it right for them. It was welcome to hear Una O’Brien from the Dept of Health talk about the importance of prevention and support for families - early intervention. She talked about a lifetime plan and said this was a focus for the Dept of Health. She added: "Without that, we will just find ourselves going round in a circle."

They will only get it right if they work with families

Simon Stevens: "If we go back to the mid-’90s, we had 13,000 people with learning disabilities in in-patient beds; now that is around 1,500. We’ve been on this journey, and we know how to do this. We’ve just got to finish the job."

We welcome the words - but do they know how to do it? If the progress to date is anything to go by we are far from convinced. It is the families who really get it, who know first-hand what goes wrong, what needs to be in place to get it right. It is vital they listen to us and we work together on this.

Margaret Hodge: "it has been a jolly positive hearing, with lots of commitments." She said there would be another PAC meeting on this in 18 months.

But for the Department of Health and NHS England, facing the PAC again in 2016 is the least of their worries. There is a growing number of families fighting for change, speaking up for their loved ones, absolutely determined there will be change - we're the real 'pack' they are accountable to.

Join us and sign the petition now to make sure that whoever is next in Government drives through the changes needed.

Share the petition on Twitter or facebook to encourage others to sign and join our fight to bring about this crucial change.

A letter to my brother

Emma writes lovingly about her brother and his difficult life
Read more

Bring Claire back to Wales

"Claire should not be living in a unit" Read Cath's blog about her daughter here
Read more

Mencap/CBF comment on NHS England report – 'Homes not hospitals for people with a learning disability’

Read more