Shattered from Cowley calling base.
It’s four months since we started to reduce Steven’s medication; three months since we stopped the anti-psychotics completely. I did reintroduce a miniscule dose for a week whilst Steven struggled to deal with the death of his mother. The consequences of stopping them have confirmed the thoughts I had all the time Steven was taking them – they weren’t having any positive benefit at all. His anxiety, which stems from his autism condition is exactly the same pre, during and post medication. An unexpected change is still likely to induce a meltdown and the nature of the meltdowns hasn’t altered at all. In the first two months Steven lost over 4 stone in weight. Disappointingly, that has levelled out and although his weight is still dropping, it is just the odd pound or two per week (and sometimes goes up again). The one downside from stopping the meds is the lack of sleep. The natural, ebullient Steven has returned and I’d forgotten how pre-meds, he needed so little sleep. This week, we got 1 1/2 hours on Wednesday night, four hours on Thursday night and an hour last night. I only had one client at work this morning but I cancelled the session as I knew I was in no fit state to counsel someone. The lack of sleep doesnt seem to effect Steven – he’s been as bouncy and Tiggerlike as usual today. I’m on my knees. I went back to bed this morning after the support worker arrived at 7am and slept until 10.45am. But it doesn’t feel anywhere near enough.
It makes me question again, why the hell did he go on medication in the first place. It was towards the end of 2007 and he was struggling with the impending end of his schooldays. He had become pre-occupied with all the other students that had left in the years before and Steven had convincved himself that they’d all died. “Dad – don’t want to die when Moorcroft is all finished”. The anxiety of this developmental crisis continued and eventually, the GP and pyschologist put him on rhisperidone. It was a small dose and although it had an immediate calming effect, it didn’t last long. When Steven went into the Unit in 2009, they doubled the dose within days of his admission and he’s been on the same heavy dose until May this year. But nobody has ever diagnosed a mental health problem with Steven – quite the contrary. When he has his six monthly check ups with the psychiatrist, the doctor makes a point in his reports of pointing out the lack of mental health symptoms. That didn’t stop Hillingdon wanting to use a mental health section to get their way and move him to the hospital in Wales.
Since 2010, I’ve learned how common drugging autistic people is and how LAs will use the Mental Health Act to trump all other legislation and get their own way. They refuse to provide a decent care package for the person in their own home/community – and instead, send them off to an assessment and treatment unit or psychiatric unit – put them under section – drug them to the eyeballs and leave them there to rot. Problem solved. Except they’ve created a total illusion and used what is meant to be a supportive piece of legislation to add credence to their illusion. I break out in a cold sweat when I think of the task ahead for the #LBBill and how we address the abuse of the MHA. The latest stats on why people are still trapped in ATUs cites “clinical reasons” as the main reason for the lack of discharge dates and planning. This seems like a convenient catch all to me.
Yesterday, an announcment was made by Langland securities of its plan to build a hospital in Wales (there’s irony). The USP of the bid is that it will be an autism specific hospital; and will cater for up to 100 patients, employing 400 staff. The report is here: http://www.dailypost.co.uk/news/health/mostyn-site-chosen-unique-multi-million-7649247#.U_YcWVpcuBo.facebook
Look at those pictures. Read the blurb (“in symmetry with the local environment”). Is that really what’s needed? No, surely not. It looks like another Winterbourne View to me. The brilliant Nicola Bartzis has been trying to do some deep diving into the place and it’s like trying to grip sand. The Health company who will run the facility, Earlswood Healthcare are registered at the same address as Langland Securities. The spokesperson for Earlswood Healthcare is one Andrea Dishman. In 2012, Andrea was the spokesperson for The Trevor Price Partnership who had an identical bid to build a residential placement on the site refused. Hospital? Residential? It’s all the same to the money men. Also in the equation are a company called The Options Group, who run a residential school for the autistic on the same site. You can bet your bottom dollar that behind all this is a private equity firm with links to big pharma.
It’s the complete antithesis of #LBBill. Despite the gloss, it’s an institution. Despite the spin, it is not about keeping it local. Jobs perhaps may be local but we all know that if it gets the go ahead, people with autism from across the country will be sent there. It stinks. Let’s create a mental health problem out of some of the most vulnerable people in our society, so the arsewipe Fat Cats can trouser shed loads of money.
Everyone. Please everyone. Sign up for the #LBBill. Because very soon, they will be more of the Earlswoods of this world, and it will be too late to stop them.
I read two updates today from two concerned mothers, both with children stuck in unsuitable placements.
The first, from Helen Ashby, described her son Dave’s distress yesterday. Dave has autism and downs syndrome and for him routine is vitally important. He likes to plan ahead and to be reassured about future events. Yesterday, at his placment (I hate that word) he was asking for reassurance about what he would be having for his next meal and who would be supporting him on his next outing. The staff couldn’t answer him as the rotas were locked in the office and nobody had a key! Cue an evening of increased anxiety and the possibility of a meltdown.
I’ve written before about the dreadful case of Claire Dyer, trapped in an assessment and treatment in Brighton. She has only been there three weeks after being moved by the local Health Board before her family had a chance to say goodbye. Each update from Claire’s mother is beyond sad. The Unit won’t allow to Claire to have her IPad and haven’t set up Skype, so she is unable to have contact with her deaf sister. The family are only allowed to visit for two hours a week and then have the indiginity of a staff member sitting in the room for the entire visit. Today, Cath Dyer described a call from Claire. Like Dave and many autistic people, food and mealtimes form an important foundation stone to the day. On Sunday, Claire had requested a cheese and pickle sandwich. When the time came, the staff served up a cheese and pickle baguette. This set off a meltdown. To be expected in an autistic person when the unexpected happens. The hospital’s response to the meltdown was to cancel her “ground leave” for a week. Ground leave only reinforces the prison image for me. And what good do they expect that to do. How can you be running the Race For Life one week and then three weeks later be detained in a room with only a TV or colouring book to occupy yourself because you are forbidden from going outside (we’re not even talking about going off into town here – she cannot even go outside into the hospital grounds).
There’s a massive gulf in what is permissable, depending on what side of the fence you’re on. If Steven had a meltdown and I subsequently kept him indoors for a week, this would be a safeguarding issue. I would be under the microscope and would , quite rightly be held to account for my actions. However, if I’m a professional working in an assessment and treatment unit, I can bring about a major restriction to someone’s liberty. All in the name of a behaviour modification programe. There seems to me to be a very fine line between a safeguarding incident and a strategy to modify someon’e behaviour.
This is all very familiar from Steven’s time in the Unit. When someone’s autism is denied, then I just see a disaster waiting to happen. Arrogant professionals believe they can change a behaviour that their environment and lack of acknowledgement has created in the first place. Common autistic traits are dismissed as willful behaviour and worse, become the focus of medical change programmes. It’s a Kafka nightmare. The big secret about assessment and treatment units is that assessment and treatment doesn’t actually take place there. They are cells – holding pens because local commissioners refuse to put a person before profits. They are the source of enormous income for the providers, usually with some murky private equity firm in the background. And to sustain this huge lie, Claire’s distress at getting a cheese and pickle baguette is turned into the raison d’etre for their existence.
I really struggle to see how the professionals making these decisions can sail straight past some real basic stuff. Every autistic person I know needs the reassurance of routine. As long as the basis of a routine is in place, much of their anxiety is kept at bay. Take that away and the anxiety of living becomes unbearable. Steven has three charts on the living room wall. They are the most improtant things to helping him manage his day. The first chart has the photos of who is working with Steven that day. Steven takes charge of this when the support staff arrive in the morning. On this chart he also adds a photo of wherever he is going that day. The second chart is the food chart for the day. Once again, one of Steven’s first jobs in the morning is to put up the photos for his lunch and tea and his packet of mid afternoon crisps. The third chart records what DVD/video Steven is watching after breakfast and what our viewing will be that evening. It’s the same every week (Monday: Top of The Pops, Tuesday: Men Behaving Badly, Wednesday: Mr Bean, Thursday: Gladiators, Friday: Fawlty Towers, Saturday: Camberwick Green, Sunday: Coronation Street). Sorting out his charts takes Steven about ten minutes each morning and he’ll refer to these charts throughout the day. It’s not obsessive. It’s not inappropriate. (Two of the charges that were thrown at Steven by the Unit). I’d far rather see him compile his charts than be dowsed in surpressing medication.
Where is the voice for the Claires and Daves? Mencap are cosily ensconced in the Bubb group. Today I learned that the NAS get a significant amount of funding from a company that runs the sort of units that the government keep saying they want to close down. The deeper I get into the #LBBill, the more I learn about the politics of disability and the bewildering layers of self interest. And whilst the egos battle for supremecy, Dave doesn’t know what he’s having for lunch today because a rota is locked away. We cannot wait for the commissioners to spring Claire from her sentence – they are too caught up in block contracts and social capital. We certainly can’t wait for the providers to do something – they don’t want to lose their enormous profits. We cannot wait for the big charities to do something – their interests were conflicted long ago.
Now, if you’ll excuse me, I have to go. It’s Tuesday and Martin Clunes and Neil Morrisey beckon. It’s not Claire and Dave behaving badly – it’s the people charged with providing their care.
Another of those tense, awkward moments looming. Whilst Steven was away in 2010, the staff at the Unit introduced him to a day service run by the positive behaviour support team and he has been going there every Friday since. I’ve writen before about how nervous his four hours there each week leaves me. The staff at the day centre are the same as the ones at the Unit and I fear Steven’s actions being misinterpreted and the whole nightmare of 2010 starting up again. There are four other regular service users who go and Steven doesn’t really interact with any of them, so anything can happen and each week, I breathe a huge sigh of relief when he gets home and the support workers report a trouble free day. There is nothing to do at the Centre – I’m not even sure what its purpose is. Steven takes his ingredients for his pepperoni pizza there every week and makes it sometime during the day. But the rest of the time, he sits and watches the TV. There are jigsaws. And colouring books, that I wouldn’t say were old, but when I say that Steven asked what colour to do Alma Cogan’s hair, you’ll get the picture.
For three weeks running, the cab has arrived to take Steven to the centre and each time he has chosen to stay at home. The support workers try to persuade him but Steven is quite adamant and once the empty cab drives off, he gets on with the day that he has obviously planned. On Friday, he started by pulling his chair up to the CD player and put on Andy Williams’ greatest hits. An hour later, he went out in the kitchen and made his pizza and then got the support worker to help him make a corned beef sandwich. Steven then announced: “want to go to the pub for orange juice, some minstrels and Erasure on the jukebox”. Off they went. And when they returned, Steven chose an old Brookside video and watched that until it was time for tea and swimming. Sounded like a packed, enjoyable day full of positive behaviour without the support of the specialist positive behaviour team.
Then I worry. Suppose Steven decides he doesn’t want to go back to the centre (I wouldnt blame him). Would I be congruent when the PBST ask why? I just know that it will be very tricky and very exposing to announce Steven is giving up the centre because he gets bored.
Then I race on and speculate what would happen if all the service users follow Steven’s lead and decide to give the place a miss. That would be extremely challenging. The Council see the place and the PBST as one of the stars in its crown. A lot of jobs are tied up in keeping the star alive. What would happen to all those people if everyone voted with their feet?
Perhaops this is why “choice” in the social care world always feels nothing of the sort. Steven has already made an independent choice and chosen Andy Williams over a Pingu jigsaw. But it’s not really a choice any of the professionals would want him to make. In doing precisley the thing that the council trumpets (choice and independence), Steven ratches up the tension. Sod it.
I need a blindfold on my journey from home to work. After yesterday in the cafe, I witnessed a similar event today. And once again, my mind was racing, painting a whole backstory. The weekly shop took less time than usual so I stopped off in a coffee shop. Outside a young woman was having a serious meltdown. Her two carers were trying to coax her into various shops. They went into a charity shop but reappeared a few seconds later. There was a real commotion when they were in the newsagents. The carers stopped dead outside the estate agents, trying to interest her in the properties on display in the window. Nothing worked. It was very painful to watch. It was all so ……. meaningless.
I’m no expert but I do know that most people with autism feel safest with a routine. Planning is important – spontaneity is dodgy. (Last week, I brought some hot dog rolls, thinking it would make a nice surprise for Sundays tea. It completely threw Steven. Even though he’s partial to a hot dog, we have cheese on toast for Sunday tea. The unplanned change was too much for him. I’d dropped a clanger). A morning of unfocused, unplanned meandering around the shops is tricky for most autistic people. Here my fantasy kicked in – the staff probably arrived on shift. They didn’t know which of the independent living tenants they’d be working with that day. Nobody is going to ask the woman herself what shed like to day with her day. Perhaps one of the support workers needed to go to the post office next door to the charity shop (it happens). Who knows?
Steven’s week is meticulously planned. At 9pm every day we run through everything that is going to happen the next day. We repeat the process, the next morning after breakfast. For a taster, here’s today’s:
× Watch Gladiators video with Michael.
× Dad will go to Tescos for the shopping
× Alan will come & put trunks and towel in the bag and go to Lloyd’s swimming pool for a big swim
× Come home and have spaghetti hoops and orange juice.
× Take clothes out of washing machine & hang them up
× Have a marvellous musical montage with the Lightning Seeds.
× Watch Countdown & Deal or No Deal
× Dad will be home
× Michael will go and get our lovely cod and chips
× Michael will go home and Steven will have his bath
× Have lovely cold milk and raisons
× Alan will go home & do music videos and DVDs with Dad
× Speak to Uncle Wayne on the phone
× Have a blackcurrant Chewitt
× Watch Fawlty Towers with Dad
× Go to bed
As you can see its pretty detailed but is important to keep anxiety at bay. It requires patience and a memory like an elephant.
When I see scenes like in the cafe yesterday or the estate agents today, I become very scared for Stevens future. When I’m no longer around, who will be interested enough to plan his day with him? What will happen when someone takes him out for a meaningless walk? Who will Steven be able to discuss Ian Brodie’s career with?
Perhaps I should just wear a permanent blindfold.
With the #LBBill gathering momentum, I find myself constantly returning to the question, “what is independent living”? I’ve read tons on the subject but there seems to be an inherent conflict in trying to define it. Surely, one’s idea of independence is a purely subjective thing. Can we come up with an overarching definition that will encompass everyone’s ideas about independence. What on earth do we do for people who are unable to communicate what independence means for them.
I get most of my cues about independence from Steven. I observe him going about his life and feel comfortable that his life is pretty independent. He is able to make choices, some he can verbalize, others need more effort and understanding of him to hear what he is trying to communicate. I know my MCA – its fine for him to make an unwise choice. Its also fine for him not to make a decision either.
So when I’m thinking about independent living, I tend to compare with Steven’s life, and that is probably unfair. I just did it on the way in to work. I wrote last week about the new block of supported living flats that one of Steven’s old schoolmates has moved into. I was sitting in a cafe having lunch when two support workers came in with Steven’s old friend and two other residents. Steven’s mate was unhappy about one of the other guys being there and kept saying: ” want him to go back to S House”. The other guy didn’t seem that fussed about being there but couldn’t leave because of the staff to resident ratio. It was tense.
I sat there dreaming up all sorts of fantasies. I was uneasy that everyone, residents and staff were referring to “S House”. It sounded like these self contained flats had suddenly become institutionalised. It felt like a house outing, arranged to fit around staff rotas. Does that accord with independent living? Supposing one of the three guys had wanted to do something different – would he have been able to or would there have been the staff to support him? My assumption, like Steven’s home life, is that each resident would have their own support. I didn’t expect support to be shared and activities arranged on a consensus. Do each of the residents have their own personal budget, or has the place been turned into a care home where all resources are pooled?
Here are two different scenarios with the same outcome and I honestly don’t know if one is okay and one is not.
1) A young autistic man lives at home with his family and has paid support during the week. The family decide to go out for Sunday lunch but the young guy wants to stay at home. He cannot stay home on his own, so the family decide he has to go with them.
2) A young autistic man lives in his own flat with live in support. He wants to have lunch at home but the man in the next door flat wants to go to McDonalds. There are not enough staff on duty to accommodate both, so the man has to go to McDonalds with his neighbor.
Of course, they are all just fantasies and I’ll never get an answer to them. Just made me realize that getting a Bill passed is one thing – making it work in practice is going to be much much harder.
On 18th July I wrote the blog post, “a plan”. Within days, the suggestion I made grew like Topsy into the LBBill. It was a serious suggestion but I didn’t really expect anyone to take it seriously. In a nutshell, the idea was that there should be a statutory presumption that everyone should live in their own home of their choosing. Because the original post was about people trapped in ATUs, some people have assumed that the Bill would only apply to people with learning disabilities. That was never the intention as I believe the Bill would protect not just the learning disabled, but people with physical disabilities, the elderly and people with mental health issues. Everyone. The overwhelming response is that it is a good idea but as the discussions that have followed have shown, there are lots of potential flies in the ointment.
Two major issues that keep being raised are: 1) Where is the housing going to come from? and, 2) How is this going to be funded? My responses around this are rather simplistic and I’ll leave it up to others to debate more thoroughly. To the first question, I would say, in the most part, the housing is already there. A person is already living somewhere before officialdom deems they should be living elsewhere. Let’s look at what it would take to enable the person to continue to live in that home. For others, I would argue that housing is out there but it needs a quantum leap to see the possibilities. Many professionals talk the talk about independent living but have a real resistance to turn that talk into action. As for the second question, I think this is just as much about will and changing cultural patterns, as the austerity argument that always seems to be shoved at us. This is the time for all the Personalization talkers to step up to the plate and prove that it can be done.
One thing that is fascinating me is the amount of tension the idea of the LBBill is creating. How can something that most see as a great idea be causing so much wobbliness? I can see already for all those the Bill might benefit, there are those who might lose out. Those with a vested interest in maintaining the status quo. Those who make a lot of money out of the present shambles. So, not the people using services – more the interested parties. Never mind. Tough titties.
Last night we were up till 3am as Steven is not sleeping well in the heat. We found ourselves watching Dead Poets Society. In one of the opening scenes, the boys are reading the book ” Understanding Poetry” by Dr J Evans Pritchard. Robin Williams rips out the opening chapter,arguing that art, poetry, love, life can not be expressed as a scientific formula. I feel a bit the same about social care – the words, the systems, the ideas have no relation to the people they are meant to be about. Lives are minimized. Lives are sterilised. Human beings become objects.
So let’s turn the status quo on its head and let the human beings take charge of their lives. Capacity? We’ll see. My instinct is that most people, Ill, non verbal, in mental decline, still have a pretty good idea what they do and don’t want from their lives. The trick is to listen hard.
Yesterday started out pretty crap. We’ve had three days running of just two hours sleep and yesterday Steven woke up in a meltdown and ended up hurting me. I was so tired, I could barely string a coherent thought together. So, I decided to escape. I was due a respite night, so decided to book myself into an airport hotel. I booked the Holiday Inn.
When I arrived, it was quite a shock. It was the place Julie and I stayed 30 odd years ago on our wedding night. Back then it was a Trust House Forte hotel – that’s why I didn’t realize it was the same place.
A few weeks back at Julie’s funeral I told a story about the hotel. We went back for our anniversary in 1990. Julie arranged it as a surprise and wouldn’t tell me where we were going. We were up in London during the day having IVF treatment and she led me off to Victoria to get the coach back. She was so excited but I was so ungrateful. It was the night of the world cup semi final and I didn’t want to miss the match. She’d thought of that and booked a table in the restaurant for after the match finished. What she hasn’t taken into account was the penalty shoot out (Chris Waddle, Stuart Pearce), so we got down to the restaurant as they were clearing away. I think we ended up with ham sandwiches in our room.
Thirty years on the place is completely different. Even if we’d carved our names on the wall, the walls have been knocked down and rebuilt many times. No ghosts in the building, just in my head and my heart.