‘Locked up’ in learning disability units: ‘I want my son home’

*Some names have been changed

Christie still remembers the phone call that changed the course of her and her son’s lives.

Tom, who’s in his early 20s, has autism and a learning disability. He was being cared for in a supported living placement. But when staff shortages twice stopped him from going out to visit his girlfriend at a day centre that he loved, his behaviour started to deteriorate. A few weeks later, services rang to tell Christie Tom would be assessed under the Mental Health Act.

“It took me a while to realise that they were going to come out and assess him to section him, and then that this wasn’t happening in a few weeks, it was happening today,” Christie recalls.

“It was really scary. I was crying, I begged them not to do it.”

Tom was admitted to an assessment and treatment unit or ‘ATU’. Eighteen months later, he’s still in the hospital system, along with 2,500 other people with learning disabilities or autism.

ATUs were conceived as providing short-term support to people in crisis but have too often been used for long-term care. Their use has come under increasing scrutiny in recent years after the BBC’s Panorama programme exposed horrific abuse of patients at Winterbourne View, an ATU on the outskirts of Bristol.

In response to that scandal, the government launched Transforming Care in 2012. The flagship policy promised to shift more care of learning disabled people into the community and lead to the closure of more ATUs and other inpatient units.

A host of strategies, action plans, and a concordat followed. But six years on from Winterbourne View, thousands are still in hospitals and people continue to be admitted to ATUs. Experts say progress against Transforming Care’s aims remains “painfully slow” and relatives like Christie continue to fear indefinite separation from their loved ones.

‘A trade in people’

Why is this happening? Last week, Seven Days of Action, a campaign group for families of patients in ATUs, set out their verdict. Their report argued people with learning disabilities and autism have effectively become “commodities” in a system where the NHS is highly dependent on private providers. Using Companies House data, the group estimated the market was worth around £284m last year, with each patient in hospital for five years generating £950,000.

Mark Brown, co-author of the report, says this market has created financial disincentives for councils and NHS commissioners to bring people out of the units.

“They are effectively bringing back a cost, and there is a disincentive on the part of the hospital to release people because they are a huge source of income,” he says.

“Providers may argue that it is in their interests for people to come in and come out, and maybe that’s the case some of the time, but ultimately in their end-of-year accounts they all talk about the importance of bed occupancy and maintaining profit margins – and some of those profit margins are very significant.”

The group also analysed financial data from all 48 local Transforming Care partnership plans, which set out how areas intend to improve community support. Many of the plans spoke of areas being “importers” or “exporters” of people with learning disabilities, which the group said reflected a trend for more hospitals to set up in areas where house prices are lower.

The upshot is that people not only face being placed in ATU units, but also a long way from their homes, says Brown.

“A person with learning disabilities or autism is often treated as a liability in the local community because of the costs involved in providing support to them, and so this means that the “liabilities” are exported to areas where this infrastructure is in place.

“Once there, they become a source of income and the experiences of our families is that they can then be incredibly difficult to get out and get back.”

‘Lack of skilled support’

The report found this “trade of people” is partly the result of councils having failed to put the right local support in place for people with learning disabilities.

Rob Greig is chief executive of the National Development Team for Inclusion and a former government lead for learning disabilities. He says that in the early years of Transforming Care there was a failure to recognise that, as well as the need to support people coming out of hospital, there also needed to be more to prevent people being admitted in the first place.

It meant that “for everybody moving out, someone else was moving in,” he says.

“Local authorities also have to be at least equal partners in Transforming Care, if not leading the whole programme,” he adds, “because it is fundamentally about people having community support led by councils, both to prevent admission and support people once they move out.

“The whole programme has been NHS led and therefore local government has never been playing the leadership role it needed to play.”

Some local government leaders have, however, argued, that the NHS has “steadfastly failed” to provide the funding needed to set up appropriate support in the community.

Greig says there’s an element of truth in that for the people who have been in assessment and treatment beds for years, but adds that “many people have only been in those beds for a short time”.

“The reason why they tend to be admitted in the first place is because the social care services they were receiving were inadequate and failed them,” he says.

“If councils had invested in skilled, preventative services to start with, people would not have been in the beds and therefore they would not be demanding money to get them out.

“So actually, it’s six of one and half a dozen of the other.”

‘Meeting after meeting’

Two years ago the government updated Transforming Care. The plan included a commitment to close up to half of the 2,600 hospital beds for people with learning disabilities by 2019. It also gave every learning disabled person in hospital, or at risk of admission, the right to a care and treatment review, with the aim of reducing inappropriate inpatient stays.

Christie says she only found out about care and treatment reviews after becoming part of the Seven Days of Action support group – it was one of the first things they advised her to do.

“I’m glad I did because that seems to have nudged us a little bit, in the right direction hopefully.”

Tom had his review in May. It found that he was ready for discharge, but there were four things getting in the way. He had no discharge plan despite rules that one should have been drawn up on the day of his admission. His health records hadn’t been updated. And no person-centred plan had been created for what his support should look like outside of hospital.

Outlining the fourth reason, Christie says: “The review felt that because there was no clear formulation of treatment or outcomes, this was extending his length of stay.”

“They will be coming back in 12 weeks to check these actions have been done, so I do feel a little bit more empowered in that way. In my part of the meeting I told them how I feel. I feel that my son is locked in and I’m locked out, the staff won’t tell me anything, and I don’t know how he’s doing on his treatment plan.”

Christie has also used her power as Tom’s nearest relative under the Mental Health Act to request that he be discharged, but this has so far been blocked by the hospital.

“We’ve got a tribunal coming up in response to that and my solicitor is trying to get an independent doctor to assess him, but he’s struggling to find one, they are busy,” she says.

“Tom thinks because things aren’t changing, are going on and on, meeting after meeting, that I’m not doing anything. He says ‘Mum, what’s the point of a meeting? Nothing happens’.

“I can’t share too much with him because I don’t want to build his hopes up, because I don’t have the faith in myself to go up against this huge power that is separating us.”

‘Not giving up’

Greig says Transforming Care needs to be adapted to ensure local authorities are leading it at a local level, with NHS support. But he feels the government also needs to bring in legislation that can be used to force councils to take action.

“Local authority care managers and NHS commissioners have the power and authority to work with people and their families to get people out and they should do it,” he says.

“The funding pressures are a significant issue and a challenge, I’m not belittling that, but the fact is good quality, local community services cost less money than is being spent on ATUs.”

He adds that the longer this goes on, it means “distress and disconnected lives” for families and the denial of the opportunity to live a normal life for the people involved.

“I think there are some real questions to be asked here about the extent to which the slow progress could be challenged in relation to human rights,” he adds.

This is how it feels for Christie. She has seen her son lose two stone in weight since moving into the unit. He’s worn a broken pair of glasses for three months. He’s been unable to use his own coping mechanisms when things feel difficult – taking himself off to listen to music – because of staffing issues.

“He said to me, I’m not being horrible Mum but they are never going to let me go and I just want to walk to the edge of the cliff and step off, it’s not horrible Mum, it’s freedom.

“I couldn’t believe what I was hearing. I haven’t told the staff yet because I’m scared they’ll keep him detained for longer. It’s daunting, it’s tormenting, this hospital is just the worst place any family could ever be in. It’s not therapeutic, I don’t see it as fit for purpose.

“I’m not giving up hope though. I want my son out. I will keep pushing, I won’t go away.”

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