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Herrings (Mainly Red Ones)

July 21, 2015

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

  1. Calderstones’ CEO to his credit came and met our small local forum when we’d written our concern about a statement he’d made on their website suggesting learning disabilities resulted in criminal behaviours – not his intention – just poor english! When we met with him he said that most of the people in Calderstones were there because they had committed crimes so perhaps there IS an NHS unit instead of prison.
    However, otherwise, as we all know, we won’t see any real change in the placements in A&T units until we see the NHS restore local specialist community services which have definitely been lost to our locality big style and commission FOR the person NOT the commissioner’s convenience. As an example, we used to have a community team who would move in and support a situation with hands-on support whilst they helped turn round the situation – long literally decimated across the subsequent restructuring/reorganisations of health services. Ofcourse it’s hard to understand why most people who are known as children aren’t planned for properly a long time before their actual transition.Too often agencies are presented with crises to rescue or people just about to leave residential school and little planning time. Who holds commissioners to account – certainly these are never reported to Partnership Boards who should be doing this. We DO have some agencies who listen to people and do work well with some people who have been as “challenging” to authorities as those in these units – but they do need experienced management, training and time to plan, debrief, make the things that matter to the person happen etc…. It’s an awful lot cheaper than A&T units BUT we have institutional barriers – Local Authorities have to pay for community services (and try to do this at knock-down prices which we know is a disaster) whilst the NHS pays for hospital units!! LAs have also been cut viciously in some of the most deprived and needy areas too – I still don’t see how it can be “all in it together” and ‘fair’ if David Cameron’s LA gets £36/head cut by 2018 whilst Liverpool has £700/head….. I can’t believe that any government would have been over-paying – they always had some sort of calculation which took account of population and deprivation indices previously so how has this changed so radically?
    So now we have the ridiculous situation that the NHS will pay ridiculous prices for A&T units which help few people by taking them away from home and people who care – and indeed from developing their lives, rather than pay for appropriate services in the community. Maybe we’d all blow up the world if you locked us away with nothing that made any sense to us and apparently no power to change it – particularly noone listens and when people who care don’t seem able to help us either.
    When will some sense prevail and the NHS understand that “treatment” is best done in the community and if we have an actual mental illness episode, in a unit locally to us which treats our mental illness and uses people who know us to help with the diagnosis and treatment? Many moons ago, when I used to provide psychiatric social histories to help psychiatrists to diagnose, relatives/friends were usually the people who could tell how behaviour had changed and what they knew about factors present….. Could we ensure people with learning disabilities get the same respect?
    It IS down to a lack of will and too many interests tied up in this system. I wonder who is invested in the units? or who is trying to cling on to holding their budget? It’s a pity the government doesn’t “punish” commissioners who persist in maintaining these systems as eagerly as they appear to relish punishing the poor as if arbiters of their poverty, disability or ill health.. None of us would choose to be sent miles away and locked away, nor to be poor and unemployed, or struggling with the pain or handicaps of ill health/disabilities, and some people need relevant help whether poor or just in the pain of not being listened to or understood and so disposed of to others’ convenience not our best interests. Judicial Reviews might be needed for real exposure, but how about an NHS that recognises the conflicts of interest in the current system and divests itself of ‘interested parties’ in this status quo, and invests rather in local services including to pick up on the future needs – which would save it resources in the longer-run….

  2. Pauline Thomas permalink

    I believe that if a person is diagnosed with epilepsy he/she should be looked after at a specialist epilepsy clinic. However if that person happens to have any sort of learning disability they are placed under the care of a psychiatrist. Why?

    Why when a person with a learning disability is so traumatised by the transition from school into poor adult services that it makes them unmanageable or mentally ill does the psychiatrist medicate them with psychotropic drugs when all it needs is for him/her to notify the LA in question to tell them that their adult day services are inadequate and causing harm. That is what joined up care should look like. NHS and LA social services working as a team.

    Unfortunately Directors of Adult Social Services throughout the land are being rewarded by local authorities on their success in cutting budgets and not on their ability to improve the lives of the people who rely on their services. Some directors of adult social services have gone on to build themselves private little empires teaching other LA’s how to slash their budgets. Scandalous really.

  3. Kathleen Ainsley permalink

    people who go to jail have “Human Rights” unlike those in ATU and their families. ATU means no control, no family being listened to and total control for the expensive provider.

  4. Sally permalink

    Agree with everything you say.
    Will some people with learning disabilities and autism also have mental illnesses or other health conditions?
    Can it be very difficult to diagnose and treat conditions if the person has learning disability and so has trouble getting across what is going on for them or to follow any treatment?
    That is why we need clinicians who are also specialised, and I know right now the word specialist is tossed about in community health, but properly specialised in diagnosing and treating people who have a learning disability as well as whatever else might be going in for them. Part of clinical training in this area should also be how to make use of family and support workers who will usually be essential in noticing change and picking up on expressions of what is happening.
    My son goes to a dentist who has an interest in working with learning disabled people. But we shouldn’t have to depend on the epilepsy clinician etc happening to have a interest.
    Yes, a percentage of learning disabled people will had a mental illness as well. Just like the rest of the population. However, often it seems the psychiatrist is brought in not because mental illness is suspected but because there is just a huge gap.
    It is disenengous to treat every person as if in isolation, because it seems very clear that transition often contributes to a sort of disintegration and regression. Why? It is no mystical process. The person should be going to adult services. There aren’t any. It is lonely. It is dull. It is frightening and uncertain.There is nothing to do and no friends to see. If somebody without a disability presented as depressed etc and was sitting at home doing nothing, isolated, nothing to do , gradually getting more meaningful activity and structure into this person’s life would be one of the first goals on the table!
    If better transition services would lead to a significant reduction in distress and challenging behaviour the mental health services etc could be used for people, who are actually mentally ill.
    I would like to take one of the most obstructive people in the process and do a virtual reality TV show with them. Just a week’s living as someone just past transition would live.
    As they sit, lonely, unoccupied, unable to see friends , self esteem zero and listening to the clock tick they could get a little inkling about challenging behaviour at transition. I would volunteer to play “council official “and seem them to babble about our new signposting role and send them off to sit it a coffee shop being stared at.

    • Pauline Thomas permalink

      Hear, hear Sally. Spot on. The slow disintegration of the adult services in the past 10 years have taken a terrible toll on the health and well being of families who care for someone with a learning disability. It is no coincidence that the rise in mental health problems in the LD population has risen since the changes in adult care, even though many charities and disability organizations are trying desperately to ignore it. In fact I would suggest that the compliance shown by these organizations to the changes made under the Valuing People White Paper has led to the situation we find today. Shutting their ears to the concerns of the parents and carers at that time is also unforgivable.

  5. Shirley Buckley permalink

    I do not know of a specialist epilepsy clinic anywhere in the UK. In the past the National Society for Epilepsy and the David Lewis Centre. Perhaps the Waltham Centre in Liverpool? Martin’s whole life was based at the NSE in Chalfont St. Peter friends, college, easy train access to his home, etc. That disintegrated when the NSE sectioned him illegally.

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