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The Complex Needs Bollocks

September 14, 2016

Yesterday, BBC’s File on Four ran an excellent programme about NHS England’s Transforming Care strategy. This is the scheme launched last year with the aim of springing people from ATUs and getting them back into the community.

There were three “service users” interviewed. Two of them were Sarah and Ryan.

Then we heard from ” Sarah”. She has autism and had a successful career until a hat trick of horrendous life events led to her being held in various in patient services. I’ve had some online conversations with Sarah as we’re featuring her story in the next 7 Days of Action. Awful stories of being pinned down by 6 males nurses as they injected her with a cocktail of drugs. Simply because she was challenging being there. This remarkable woman is now on the run and living in Africa, too afraid to return to her home.

The final interviewee was Jules, her son Ryan, and several of Ryan’s chickens. I’ve known Jules for a while now (it was Jules who set up Steven’s gofundme page) and am in awe of the sacrifices she’s made to keep Ryan at home and out of ATUs. Support services in her area are threadbare and she lives with the daily fear, that one false move, one misinterpreted meltdown, and Ryan will be added to the growing list of ATU admissions.

What all three people had in common was that they had shown understandable responses to very difficult external situations. The first interviewee’s  pathway to St Andrews is such a common one. Puberty. Increased anxiety. Increase in anxiety led behaviours. Admission to ATU. Entrapment.

I can’t speak for any of the other dudes but I do see a pattern that was exactly what Steven experienced in 2007. There you are plodding along with your family and then suddenly your instinct tells you that everything you know and rely on for security and meaning is about to change. Schoolfriends in the years above you disappear one day, never to be seen or heard from again. You are introduced to your Transition Manager. Steven is marvellously intuitive and I’m sure he became aware that he was about to be pushed off the cliff, straight into adult services void. As Take That sang, Everything changes but you. Steven felt the same but he instinctively knew his whole world was about to change. Cue anxiety.

In between the interviews we heard from a senior member of NHS Transforming Care. It was desperately unfortunate that in her very first sentence she put the problem down to “the complex needs” of the people incarcerated. I find that so offensive. She was laying the rules of the debate from the first sentence – “We are the professionals. You are the lay people. We have an insight that is far beyond your experience or imagination. Now fuck off”.

We hear it all the time. It justifies everything. But it is full of holes. In the next breath, the woman talked about how 85% of people in ATUs didn’t need to be there. The complex needs argument evaporated like one of Ryan’s chicken’s farts.

Ryan and the vast majority of dudes from 7 Days of Action don’t have complex needs. They have fairly straightforward life wishes.

They just happen to be in a system determined not to meet them.

 

Edit: 15th September

I’ve edited this post at the request of one of the families included in the File on Four broadcast. My original post made reference to St Andrews Hospital, which explains why the place is mentioned in several of the comments. Sorry for the confusion.

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21 Comments
  1. liz@jesslinworld permalink

    I have just finished listening to it. How wrong it is that Matthew’s parents asked for psychiatric help and were told to call the police. I am, as always, in awe of the remarkable parents who will do anything to protect their children, and how awful that sometimes they just can’t. Oh – and maybe when she says ‘complex needs’ she actually means ‘expensive’ needs or ‘skilled’ needs.

    • There were other elements of Julie Higgins’ vocabulary that I found equally irritating. Lots of ‘recognising’ and ‘thinking’ around, very little action.

      Also teeth-grindingly annoying was that weaselly political evasiveness – when challenged about the fact that they hadn’t hit their targets, instead of saying frankly, “No, we didn’t hit it in the first year, I apologise that we were over-ambitious and we didn’t factor in the start-up difficulties adequately.” she came over all waffly and self-justificatory.

      Not Good Enough. When someone’s been sequestered for years and is expecting release, aspirations on the part of the keyholders are no substitute for achievements.

  2. Brilliant piece. please forgive me – but I don’t think you want that comma in your last sentence. It changes the meaning of it to something I don’t believe you intend.

  3. weary mother permalink

    I have just left a comment on Sara’s blog. This refers to that.

    As part of my long struggle to get the LA to deliver agreed needs – damage has been/is being done.

    The casualties have been my son and perhaps even more so his flat mate who has no family to advocate for her/him.He /she is alone. I am his/her advocate.

    Out of the long years of chasing the non delivery of their support – all that has happened has been meetings and more meetings and assessments and yet more assessment..This usually sweet natured person/flat mate is suffering deep damage …..inflicted by by meetings’.

    They live easily together as companions – a life full of potential crises…Mainly anticipated or – managed by me..and meetings. – and empty ‘assessments’.

    Two lovely powerless people who also have serious physical and learning disabilities….have no choice but spend yet another day in a room full of LA and care contractors…all repeating same question at son and flat mate… ‘what can you not do’…’how bad are you at’…. this or that’.

    This is having a tragic audible and visible effect on my sons flat mate. He /she recently was vocally upset and painfully for me – is becoming alienated against me- for failing to save him/her from all this negati’ve interrogation He/ she has shouted at me ‘I am better at more things than I cant do’. He / she hates being called ‘hadicapped all the time’. Some questions by some contractors are truly brutal.

    He/she does not understand that the safe’ish content’ish life he and my son have currently – is dependent on me/my oversight….and I am tired beyond all.

    They are both – I feel – being tortured on this cruel assessment wheel ….a wheel that produces little or nothing – just fills a ‘ doing (nothing) something’ box for the impotent LA staff.

    I believe it is a form of organiastional abuse.

    Empty assessment and its attendant cruelty happens outside ATU’s……too.

  4. Awful! I can remember commenting to the Garnetts ‘don’t agree to St Andrews’ and pointing them to Finolamoss’ blog post on their failings. It’s terrible that again and again the LA’s continue to deny help when it is needed leaving so many vulnerable of entering ATU’s. It is so hard for parents to cope sometimes but the key is to take control and insist on needs being met at home I am sure it can work in the majority of cases. Person centred.!…………….

  5. Miguel Montenegro permalink

    Hi Mark I love reading your posts, often fills me with sadness that you and your son are still going through hell. I read your post below. I work at St Andrews, brain injury, and although I agree that things are not perfect, at least on my wards we don’t restrain and sedate people, neither seclude people, like suggested. It is unhelpful to use such generalisation to create such image of a place. I don’t defend st Andrew, far from it. But we do great work with people here. I’mvery passionate about my job and I would not think twice about reporting any safeguarding concerns to cqc.  Also, I think you could clarify the location of where Sarah and Ryan may be because it gives the impression they are at St Andrews.  I’ve worked for the nhs 4 years before and have seen awful things there that I’ve never seen at St Andrews, and I have been here since 2004 with a break in the nhs in between. I’ve worked all over the pathways and I have never encountered the abuse you mention,otherwise this place would’ve been shut already.  Happy to discuss  Miguel

    Sent from Yahoo Mail on Android

    • Hi Miguel. Great to hear that the wards you work on don’t go in for those practices. At the same time, the number of families of people with autism and learning disabilities who have contacted 7 Days of Action with horrendous stories show that the practices I mentioned are rife in some areas of the hospital.

  6. It is clear, that the autistic/ LD/ anybody, with mental issues are being used as huge cash cows for public, and now private providers.

    The push and the millions now allotted by governments, as the answer to poor care for autistic etc is merely a device to transfer all public mental to private, where the care is no better, in fact appears worse, as no competition, monopoly, with no accountability.

    See the suicide of a teenager in 2011 in Cgynet Private Mental Hospital
    .http://www.mirror.co.uk/news/uk-news/tragic-straight-student-who-battled-8376794

    And my blogs posts on St Andrews, where it appears even the number of deaths is unknown.

    If you read Dr Baker’s blog you will see the poor service in North Wales, and how a manager is now a director in Cgynet.

    I have been told this company advertises its hospitals, as specialising in ‘resistent service users’.

    Says a lot about future, for huge profit private mental health treatment, which appears merely drug and encage for as long as possible.

    So its all about the money

    https://finolamoss.wordpress.com/2016/06/12/the-real-reason-why-kids-are-in-crisis-its-all-about-the-money/

    It really is beyond scandal, and no one appears to be doing anything about it.

  7. Pauline Thomas permalink

    ‘Tell them what I can do” remarked my son after returning from a negative person centred plan meeting with a day service manager many years ago.

    Still waiting for the person centred plan. Do they actually exist?

    • Shirley Buckley permalink

      I dont know about a person centred plan – Martin hasn’t got a plan of any sort, nor has he had for years. I know there is a Dols, has been for three years now. And I know his residential care home in Cardiff (Wales again) costs £2400 a week – and thats about it.

      • What do all these bits of paper matter ?

        As in the end they are all effectively meaningless and ignored.

        And only created to appear to be giving consideration to the individual and his ‘care’.

        They are standard, often filled up retrospectively, if needed for CQC.

        When its a prescribed service for all, for maximum profit with a few tweeks on medication and safeguarding.

        As the service provider is unaccountable, and there is no other service.

  8. Frannie permalink

    So true I felt exactly the same when Ui was at a meeting and Isabel was full of hope

  9. Jayne knight permalink

    Can I just add here the voice of reason of Salim on the programme. He helps us on youknow.org.uk and is a breath of fresh air. Knowing all three of the people featured and their situations very well everyone of them have been forced into the situations that they are in. Isabelle never wanted her son to go away to St Andrews it was the lesser of two evils as he was taken away before that and was deteriorating so badly. He was not offered any chance of coming home only to another hospital and I be seen that so many times! They wanted him and want him home and they are devastated with it all. Sarah needs to be the main speaker at any event in the future and maybe she will be. We had to keep any help underground as we were warned it could be a criminal offence to openly support her. Her story is horrendous and she should now be debriefed by people investigating these places like any torture victim.
    Jules has the most complicated and isolated life which we’ve tried to help by some practical support in just acknowledging her situation and offering to help and speak up for her. She thanked me for an adult conversation the other evening. It was a conversation with a friend.
    Salim summed everything up by saying no one should be in these places. He has spoken to two of the people featured and attended some tribunals free in his own time. He’s a consultant in the NHS and on our side
    Julie Highins woman from Transforming Care needs to get a few of us and the three people featured to talk to her in the same way.
    You see even when people at the top are aware as they certainly were with Sarah because I told someone, nothing happened. That’s what makes everyone wonder about the sincerity of seeing things through.
    I’ve found a brilliant contact in NHSE. Trouble is she’s going to get bombarded but her initials are MK. I think she should be running the whole shebang.

  10. Hi
    Just to clarify something that Finola mentioned in her earlier comment. My blog concerns the appalling mental health services in north Wales. There were many attempts to discredit me – and people who witnessed what happened to me (including a staff whistleblower from the hospital concerned) – and one of the biggest attempts was by an ‘expert witness’ who trashed all of us in a report full of inaccuracies. I later found that this ‘expert witness’ had resigned from a previous role himself after a scandal. It is this man that Finola is referring to who is now medical director for Cygnet. He wasn’t a manager in north Wales, he was a psychiatrist based in Yorkshire. But yes, I discovered about three years ago, one of the units he ran was advertising itself as dealing with ‘resistant service users’. It is terrifying. I will soon be telling the full story of my encounter with this man, Dr Robert Kehoe, on my blog – I am currently waiting for documents from my lawyers to correlate information…

  11. Jayne knight permalink

    Just wrote a long comment and lost it! So if there are two now apologies. This will be shorter
    First let’s please acknowledge Salim the psychiatrist who stuck his neck out and us an amazing help on youknow.org.uk our free advice web. If you can offer help on that please contact us on admin@youknow.org.uk
    Isabelle and her family were forced into the situation they are in. They never wanted their son to go anywhere other than home. St Andrews was the lesser of two evils. They want him home
    Sarah contacted me after the film that Soohie did ‘ stuck in the system’ she was relieved to be believed for the first time. We’ve been in regular contact and it’s horrifying. She will be an amazing source of information about the abyss of women in these places. That is once she has recovered from her torture.
    Jules is the nicest and kindest person with a very funny and bright son but us a prisoner in his home. I hear from people almost daily with new situations. I am overwhelmed with it and I speak to other people volunteering their time to help through any connections I have. Salim is always brilliant.
    I’ve found a bright shiny star in NHSE! Yes
    I’m speaking to her this morning
    She cuts through the crap basically and in my view MK should be running the whole shebang! Julie Highins maybe you would like to meet me and some of these victims and others I know to find out what is really happening
    I found something out last night about St Andrews again that has made me have another sleepless night
    I reported Sarah and a man being fed through a hatch system to the top. Perhaps you’d like to check what happened to that

    • Sorry if I gave the impression that Isabelle was pleased that Matthew went to St Andrews. I watched an old interview before writing the post where she said that she was pleased that he was finally getting the treatment he needed. That is what is so evil about these places. They present themselves as the saviours of our dudes before they gobble them up.

  12. Cinnamon permalink

    Go ‘Sarah’! You’re an inspiration. I hope you return to the UK to inspire others and promote changes to the ‘services’ that let you down so badly.

    • simone aspis permalink

      go on Sarah – be great to have her in involved disabled peoples fight for independent living

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  1. Mark Neary on ‘Complex Needs’ – Roughly and in Outline

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