Locked up for Christmas – long read

This Christmas, 2,000 people with learning disabilities and/or autism will spend the festive period in long term detention.

Indeed, for six in ten of those currently locked up, it will be at least their second consecutive Christmas in hospital away from their families.

Despite the ongoing failure of the Transforming Care programme since it was launched in the wake of Winterbourne View 10 years ago, this is not an insoluble problem.

That is why, this Christmas, we are sharing seven policies that together, will deliver on the original vision of Transforming Care – that people belong in homes, not hospitals:

1.       Fix the perverse financial disincentives to discharge patients by reducing the health dowry to 2 years or less – ensure funding always follows a person.

2.       Introduce meaningful fines for any Assessment and Treatment Unit (ATU) or similar long stay facility supporting a person without an in-date Care and Treatment Review (CTR) plan including a plan for discharge – this should be statutory.

3.       Ensure that every CTR participant (from Multi-Disciplinary Teams) has a register of local organisations with experience of supporting people with both a mental ill-health and forensic history out of ATUs

4.       Implement an outright ban on for-profit organisations running ATUs

5.       Strengthen family networks through low levels of funding to independent advocacy groups; information sharing between families is key.

6.       Invest in the specialist housing market; housing is cited as the major barrier to discharge

7.       Fund the social care system in line with the Local Government Association’s assessment of need

Katrina’s story

Katrina will spend Christmas with her family this year. In fact, she can see them whenever she wants.

But for much of the past decade, Katrina has been locked up away from her family in numerous Assessment and Treatment Units. As the Government’s own Health Select Committee has acknowledged, long term detention like this is fundamentally a human rights issue – the right to a family life.

Today, International Human Rights Day, Katrina describes hospital environments where rude staff would wind patients up just to get a reaction. One resulting incident led to a bone in Katrina’s hand  breaking when a restraint went wrong. In one hospital, incidents would result from patients being barred from going to the toilet during mealtimes. Just a couple of the many daily provocations that shape long stay hospital life.

Katrina got out in June, since when she has been supported in her local community by not-for-profit support provider Dimensions, but many of her fellow inpatients have not been so lucky. “A couple of people I know have been in for more than 10 years,” she reflects, “That’s a lot of Christmases locked up away from home.”

In fact, it is likely that over 2000 people with learning disabilities and/or autism will be locked up this Christmas. For nearly 6 in 10 of those, this will be at least their second consecutive Christmas away from their families. Horrifyingly, 100 have been locked up for 20 years or more.

How many are, like Katrina, pissed off and upset? How many react unwisely to the daily provocations, prolonging their stay further? How would you react, locked up away from all your friends and family for reasons you perhaps don’t understand?

group meetingFrankly ‘the system’ is not even trying to help people leave hospital. Two thirds of those admitted in the most recent period did not have a pre-admission Care and Treatment Review (CTR) in place. Of these, 84% did not have a post admission CTR in place either. Amongst all those locked up in ATUs, 41% do not have in-date (within the last 6 months) Care and Treatment Reviews. Yet CTRs are accepted as a key to successful discharge.

All of which means that the proportion of patients with a planned discharge date is falling, from 57% in 2019 to 42% now. And in an awful un-merry-go-round, 1 in 5 of those ‘discharged’ in the most recent period were simply sent to another hospital.

One of those still inside is Logan. Logan and Katrina, who met inside, are now best friends. They supported each other until Katrina’s discharge. Since then, and despite our very best efforts, the hospital has systematically put barriers in the way of them staying in touch. No visits. 5 months to negotiate a phone call. Could this be just another deliberate provocation to wind Logan up, get a reaction and delay his discharge? We don’t know. We just hope Logan keeps his self-control.

The context

The entrenched problem of long-term detention of people who have a learning disability and autism is principally a result of wider issues within the social care system that mean high-quality community support is not available to people when they need it.

The number in ATUs is coming down, but very slowly. Many of the longest-serving residents of ATUs – people like Jackie, who was inside for 22 years – are now living better lives in their local communities. But far too many people with more complex needs remain stuck there – indeed, the average stay is almost 3 years and many individual horror stories have been featured across the national media.

Whilst the number of NHS ATU beds has been falling, these have largely been replaced by the private sector, in a range of guises.

Everyone entering an ATU should have a discharge plan as part of their Care and Treatment Review – a multiagency document that should be in place on entry and reviewed every 6 months thereafter. The data shows that this is basically not happening. And no discharge plan = no chance of discharge.

The final say on discharge rests with the Responsible Clinician – usually, the ATU’s consultant psychiatrist. Our experience is that many of these are highly risk-averse. And with weekly fee levels running to thousands of pounds each week, there’s an inevitable financial disincentive to discharge.

image of two people with moneyThere’s a perverse financial disincentive for local authorities too. Anyone in an ATU for more than 5 years will get a health ‘dowry’ on discharge – ie the NHS pays for their subsequent care. Less than 5 years and the council pays the bill. Little wonder that some stretched local authorities might not be keen on quick discharges.

In our experience it is very difficult to secure funding for a little additional support for a person who is starting to struggle. As a result, in far too many cases, a small struggle becomes a full-blown crisis requiring inpatient admission (and, conveniently, the NHS then picks up the bill.) Until government funds local authority adult social care properly, it is hard to see this changing.

There will always be a place for specialised settings for those whose mental health crisis or forensic history means they need this level of security, but reform is needed to ensure the goal remains to support everyone to return to their communities as quickly as possible.

We know from experience that many of the individuals detained long-term in ATUs do not need to be there. Dimensions forensic team has seen incredible success with successfully rehabilitating patients transitioning from ATUs, helping people to build an understanding of consequence, empathy and control strategies.

Not every placement back into a community environment is successful. Occasionally, despite everyone’s best efforts, a placement will fail. In that case it is essential to view the situation as a failure of the plan, not of the person. We must never lose our collective ambition for and belief in each individual.

After all, how would you feel if you were given your freedom after being locked up for years away from family and friends for reasons you didn’t understand? Happy? Frightened? Confused? Angry? Distrusting? So it is with the people we support out of ATU. But in time, most people learn to live an ordinary life. Dimensions’ Best Practice Guide to moving out of ATUs is freely available and full of practical advice from people who have been there and done it.

Lastly, it has now been over three months since the Health Select Committee published its report on the treatment of people who have a learning disability and autism (and you can read Dimensions’ thoughts on that report here.) As yet, disappointingly, there has been no response from Government. We have written to the Health Secretary about this, but as yet received no reply.