By their very nature ATUs are not set up to work with people in their familiar environment and rehabilitate them; instead, they seek to remove and treat with an extremely small toolkit, says Sam Sly
Over a year ago I was asked to write about getting people out of Assessment & Treatment Units (ATUs) but didn’t get around to it so when I was asked again I thought I would reflect first on the changes I have seen in a year. Then I will look again at why I think people aren’t home and what needs to be done.
To be blunt, as far as professionals getting people back home to their families and communities are concerned, I cannot see that a huge amount has changed. There are a lot more checks and balances with the Care & Treatment Reviews and NHS England is asking for more updates on progress. There has been a raft of policies and procedures and more money has been thrown at the problem but in reality the people returning to a home that suits them, with support that is right for them, isn’t happening often, or quickly enough.
People who shouldn’t be in ATUs are still there and the biggest scandal is that these are not just adults but many children too. Spending your formative years in an ATU is a certain precursor to a lifetime of problems.
Family activism
The positive changes I have seen, however, are with families of people in ATUs and interested members of the public galvanising themselves into action and protest, mainly through social media, an amazing way to highlight the problems and get results. It has been inspiring to watch the rise of family activism and I believe that this, and not professional intervention, may in the end be the turning point that ends the use of ATUs.
Why don’t ATUs work?
An ATU is an institution based on a medical model of ‘assessment’ and ‘treatment’ which in itself has a multitude of problems. Many people admitted to ATUs have autism or other learning disabilities and it is argued that these conditions cannot be ‘treated’ in a traditional way.
By their very nature ATUs are not set up to work with people in their familiar environment and rehabilitate them; instead, they seek to remove and treat with an extremely small toolkit, namely drug therapy including ‘injected as required’ medication and behavioural therapy including restraint and seclusion. This means that sensory and communication needs are often overlooked or not assessed at all and the person is lost completely. Some of the methods used, such as ‘intravenous as required’ medication and prone restraint, cannot be used in a normal house in a normal street making it difficult to discharge people.
The environment does not lend itself to helping the people it contains. Many have experienced difficulties living or sharing space with others and now find themselves with many other people every day, many of whom show they are unhappy by hurting themselves and others. These people need space indoors and out to meet sensory needs; instead, by default of a mental health act section, they are locked up. Lots of these people have sensory needs and react badly to noise and crowds and yet are put in environments that have alarms going off day and night and people shouting and screaming. It’s hardly surprising that their behaviour deteriorates.
It is nigh on impossible to assess and give a person the skills they will need for discharge back to a normal house and a normal life because they don’t do normal things in ATUs. In a risk-averse culture, a large group of people cannot be risk-assessed. The kitchens, bathrooms and cleaning cupboards are often locked so an understanding of a person’s abilities to look after themselves has to be based on historical information.
The ‘problem’ isn’t resolved by removing a person to an ATU. The problem will still be there when the person goes back. In nine times out of ten it would have been better to have targeted resources to prevent the problem escalating in the first place.
I have huge issues with the reasons people are admitted to ATUs in the first place. When I have done life planning with people and heard their stories it is rarely because the person has suddenly become unsettled and unmanageable but usually because the family have asked for help for years and been ignored or given the wrong help.
The prism of a medical model
When people are in an institution they quickly become institutionalised, as do the staff. When staff work in institutions they find it hard to see any other way of supporting a person especially as the person is reacting to the environment and the person is seen only through the prism of a medical model. When discharge is being planned the ATU staff are relied on heavily for their views on where the person should live and often they have no other experience than their institution so recommendations are based on similar models. The people themselves also become institutionalised and for some leaving after many years can be a scary prospect.
When a person lives side by side with others with behaviours that challenge they will learn new negative ways to communicate and show their boredom, frustration and feelings. People go into an ATU with one behaviour and come out with a handful that then takes years to change.
ATUs have absolutely no incentive to discharge people; the private ones make huge profits from keeping people in for as long as possible and there is no pressure on them to do a speedy job of ‘treating’ a person and getting them home.
Shutting families out
But what is most damaging is that when people go into an ATU they are ripped away from family, loved ones, friends and their familiar places. This in itself is devastating but is often compounded by the professionals then subtly or sometimes blatantly closing ranks and shutting family out of learning and decision-making. Families start to be seen as a problem if they challenge things, are often written out of the person’s future and their importance disregarded.
What is needed to get people home
We, the professionals, have made getting a person home difficult. We have over complicated things and developed the barriers so we are totally responsible for the mess and broken, wasted lives we have created. We also bandy about words like ‘person-centred’, ‘co-production’, ‘individual budgets’, ‘supported living’ and don’t do any of it properly, tarnishing what started out and could still be the cornerstones of great lives.
Getting a person home isn’t hard in theory but does involve a lot of work and thinking outside of ‘serviceland’ which some professionals find difficult.
Thinking ‘serviceland’
The professionals who make decisions about where someone should go after being in an Institution like an ATU work in and think ‘serviceland’. If we don’t think differently solutions will always be targeted at what is already there; which care home? what respite centre? which block provider contracts are already in place?
We pretty much know, through things going wrong and re-admission to ATUs, that the people who challenge us don’t fit into ‘serviceland’ – it is like fitting a square peg into a round hole.
By planning well and involving the right people solutions tailored to individuals can be found or developed and pretty much every time these won’t cost anywhere near as much as the expensive ATU placements they have come from.
A good plan
The importance of good planning can’t be emphasised enough in getting a good life for someone when they leave an ATU. This planning needs to happen as soon as they are admitted and should be based on the person’s hopes, dreams, skills and talents. It should involve exploring what a life that makes sense to them looks like. Planning has to involve the person and those people who know them well. If you don’t have a good plan you won’t get a good life – simple as!
Partnerships
To make discharge work well those involved have to work together on an equal footing when it comes to decision-making. And those people involved are the commissioners, the local community team but also, crucially, the person, the family and the support provider. And equal footing means exactly that. Power, if not shared with families, is incredibly destructive when it comes to someone getting home. Partnership working should start with the planning, and can be helped by the use of individual budgets. It is hard for professionals to relinquish power – they can dress it up in all sorts of guises: duty of care, statutory responsibility etc., but to make good decisions about sometimes risky dangerous behaviour everyone has to be in agreement about the way forward and people and families have to feel they really are in control of their lives.
A home
A person has to have somewhere to live that works for them. This requires detailed planning around the person’s needs. Slotting someone into a residential setting because there is a vacancy won’t work, nor will setting up ‘supported living’ with people sharing whose only connection is having challenging behaviour. There are so many options available within housing but still many people end up living in traditional group settings. The Housing & Support Alliance have developed guidance and a training pack ‘Life Begins at Home’ that will help professionals think through housing issues and solutions: https://www.housingandsupport.org.uk/life-begins-at-home
A budget
Money is seen as a big problem, especially in this climate of austerity, but until we stop wasting public money on ATUs and poorly thought through discharge solutions we can’t use austerity as an excuse. The flexibility and adaptability of a package of support needed to meet the often fast changing needs of a person just discharged from an ATU can only, in my opinion, be met through the use of an individual social care/health budget (IB or IHB) or the support provider holding an individual service fund (ISF) on behalf of the person.
This then puts the power and control for decision-making and design back where it belongs with the person and their family. Sadly, I have seen IBs and IHBs used to make a challenging family ‘go away’ and ISFs are little known about by either professionals or providers and families.
Good help
Good help needs to come not just from a support provider or personal assistants but also from the local community learning disability/mental health team. These professionals need to be working as partners together and the community support often needed is 24 hour hands-on help and advice, especially in the first 12-18 months after someone comes home as this is how long it takes to unlearn the bad things experienced in an ATU.
Good help can also be provided by people that are especially picked, by the person, to work with them. Matching workers to a person’s attributes, hobbies and interests often enables great, positive relationships to develop. Good help also requires good, valued and principled leadership of organisations and investment in nurturing innovation in teams. Good help isn’t always just paid support.
Let’s prevent the need
for ATUs
To prevent ATUs having a place in society in the future please start to plan in person-centred ways with children – the earlier the better.
In Control finished a year-long project this spring; ‘Me, My Family, My Home, My Friends, My Life’ http://www.in-control.org.uk/news/in-control-news/’me,-my-family,-my-home,-my-friends,-and-my-life’-report-published.aspx.
It’s pretty clear that doing all the things talked about in this article with children will prevent the need for ATUs in the future.
Sam Sly is currently a freelance consultant for her organisation Enough is Enough. Email: sam.sly@enoughisenough.org.uk
