Herrings (Mainly Red Ones)
Yesterday, the LBBillers met up with NHS England & the Department of Health. On the one hand, it was pretty depressing as we learned once again just how difficult it is going to be to get the #LBBill through Parliament. I’m new to this, but the amount of politics involved in Politics is incredible. And all with a huge question mark whether there is the political will to see disabled people get the same rights as everyone else.
However, it was interesting to hear what work NHS England are already deeply involved in around the ATU problem. They are well into their care and treatment plan review and lots of important information is being revealed. In some respects, they are keeping it very simple and asking the most obvious questions: Why is the person in an ATU? What assessment and treatment is taking place? And perhaps most importantly, have they got a date for discharge and what is their discharge plan?
It seems that the old smokescreens are being blown away. The same old excuses are being given for lack of discharge – The person is “ill”, the person is dangerous, there is inadequate community support for the person, the person needs to be in the ATU to keep them out of the criminal justice system, the person can’t be discharged for “clinical reasons. Fair play to NHSE. They have pushed for clarification on the “clinical reasons” position and found that in most cases, it turns out that these people also fall into the “inadequate community support” category as well.
We talked about the other reasons. The DoH has expressed concern about the clauses in the LBBill that want to remove autism & learning disability from the Mental Health Act because it will put the person at risk of ending up in prison. Stark choice then – ATU or prison? I asked whether the review had shown up how many people in ATUs had committed a crime and were at the ATU instead of jail. The answer? Zero. (In fairness, they may be in other high secure units but there are no figures to corroborate that but in an ATU – a big fat zilch). So, let’s gobble up that herring. The case always put forward is that people are safer in an ATU than in jail. I readily admit that it’s a terrible Hobson’s choice but at least in jail, you have a release date at the end of your sentence. You are unlikely to be left in jail for years at a time, unlike people in ATUs.
What about people being in ATUS because they are “ill”? This, for me, is the drawback of NHS England carrying out this work. Inevitably they are going to view things through a medical lens. Thank goodness they are doing something because the silence and absence of ADASS and LGA is chilling. It just means the results are always going to have a health leaning rather than a social care leaning.
Are people ill? I’ve written about this so often before that I’m in danger in boring for Britain on the subject but I’m disappointed that nobody seems to have done any research on what seems so obvious to me. Besides Steven. Besides Connor, there are a number of high profile cases of learning disabled people in ATUs and there are certain similarities. Something seems to happen to young autistic people as they reach that point of transferring from children’s to adult services. I’ve called it before an existential crisis. I’m going to make a sweeping generalisation now (and you can shoot me down in flames for it) but of all the people with autism that I know, there are some commonalities:
- They drive straight through bullshit.
- They have a disarmingly direct way of communication (whether verbally or by behaviour)
- They are acutely alert to danger to themselves or their wellbeing.
Now these three traits (?) will be extremely challenging to the professionals. I think it’s no coincidence that it’s at these times that people start to get labelled as having challenging behaviour. At the time, the State is being most challenged, flip it over, so the person becomes the challenging one. Most people and families that have been through the transition process into adult services knows that most of it is based on an illusion. Most of the process is designed to hide the reality that there are no services. The autistic person will pick up on this and naturally feel that their very foundation is under threat. Bang. Diagnosis. Medicate, Incarcerate. Better to classify the person as “ill” rather than they are having a perfectly normal reaction to a grim reality. We shouldn’t be surprised. It’s happened to the wider population as well. The drive is to medicalise and pathologise, normal aspects of the human condition.
Question marks about “ill”. What are we left with? One main reason for people being deprived of their liberty and having their Article 5 & 8 Human Rights breached. Lack of appropriate community services. Even that phrase is a bit of a catch all. What are we talking about here? Bubb would like us to believe that we are talking about buildings. But as we all know, Sir Bubb does love his breakfasts, with lashings of herrings. Of course, the bloody buildings are there. People had a home before they went into the ATU. Even if they can’t go back there, I don’t believe there is nowhere for them to go.
So is it people? Are there not enough people out there willing to work and support disabled people in their community? Another herring methinks. We know that the State is neither willing to pay for home care and lacks the will to go looking for home care. Perhaps this is where families need to step up to the plate more. I’ve written in nanu detail about our experience with a personal budget. It is a horrible experience for me but it has saved Steven’s care package. Perhaps we need to bite the bullet, and for all that is wrong with it, accept that we have to put in some leg work. What’s the alternative? Leave the person in an ATU whilst we wait for an agency to turn up? They might never. Out of Steven’s five support workers, only one of them had experience of autism before they started working with him. It hasn’t mattered. As long as people have got good values and are interested in the person they are supporting, they can be trained to do the job. We have to stop waiting for these magical experts. Put an advertisement in the local paper. Put a shout out on the internet. If you build it, they will come.
We know more about the ATU situation than we have ever known. We know that it is predominantly down to lack of will. Perhaps we should use judicial review more. The State might find the will if faced with having their inaction scrutinised by a court.
Whatever we do, let’s stop swallowing all the herrings.
From → Social Care