A classic example today of one of the great social care cons where your attention is forced in one direction whilst other more important issues are conveniently ignored.
Regular readers may remember that Steven’s new house has a shower and not a bath. I asked whether a bath could be installed on two grounds: sensory issues and safeguarding. The immediate response from Housing was “not on your nelly” but the social worker got the OT team involved and they agreed to a bath as long as there was a supporting letter from a medical professional.
Last week I phoned the surgery. Steven’s GP was on leave for the week but the practice manager took down all the details and promised to arrange a letter. Today I went to collect it and something seemed very familiar. The two paragraph letter used exactly the same words that I’d given to the practice manager. It was my letter! And I was charged £30 for the honour. I dropped the letter off at the Civic Centre and will now sit back and wait.
The bath has become the sole focus for the council. Yesterday I was told that my request for an overlapping payment of HB whilst we get the house ready was dependent on the GP’s letter about the bath. But it’s not the bath that has held up the move. It is making the house habitable, decorating, cleaning and carpeting that has taken up the whole of the last fortnight. None of that matters to HB as they don’t want to make a two homes payment, so the whole issue becomes the bath. Genius misdirection.
Yesterday, I received an email asking whether I’d like the input of the MDT “to help Steven with the transition”. Thanks but no thanks. For starters, we’ll probably have celebrated our first Christmas in the new house before the MDT machine clunks into action. Secondly it assumes that the MDT have an area of expertise that I nor the support workers have. I don’t want to engage with that self perpetuating illusion. The reason their expertise was offered was that it would entail enlisting a whole team of professionals. All those cogs in the machine whirring into life. The more people involved, the more important the issue must be. I’m not ungrateful. If the offer was genuine, it could be useful. But this is about job justification and peoples’ sense of self importance rather than being a useful intervention.
This morning, I totted up the spend so far. £5128.79p. Most of that because the council refuse to fulfill their statutory duties. All because they expected Steven to move immediately to an uninhabitable property. All because nobody does anything really useful. But all that will be ignored because the bath has become everything.
I can imagine, in two months time, dropping the bombshell that Steven loves the shower and we don’t really need a bath.
What would happen to the MDT machine then?
1983. One of my favourite years. I was 24 and had been married a couple of years. In the summer we moved into the first house of our own. New Order’s Blue Monday was never off my turntable. I started to take my weight training more seriously and vowed to be the UK’s answer to Rich Gaspari (look him up in old copies of Muscle & Fitness). It was also the year I wrote a peach of a camp farce for the DHSS Christmas show. If I say so myself, it was probably the best camp farce ever written for a DHSS Christmas show. It was a spoof of those Agatha Christie country house murder mysteries. I played Master Nigel, who happened to be the murderer. Unfortunately, when it came to the actual performance, the chap playing Poirot went round the room questioning all the suspects and missed me out completely. When it came to the big reveal the audience hadn’t got a clue who I was or what I’d done. Totally ruined the denouement.
And 1983 was the year we brought the wall unit. No home in 1983 was complete without the wall unit that completely filled one side of the living room. We brought a monster wall unit. It was pale blue and had six components. Two base units with drop down fronts that we kept all our long playing gramophone records in. A five drawer unit that proved to be the final nail in the coffin of the sideboard. An open front unit that we used as a book case. And two glass door, dome shaped cabinets, one used for all the glasses we received for wedding presents and the other for my wife’s frightening collection of knick knacks. It was a splendid piece of furniture and guests were often lost for words when they first clapped eyes on it.
33 years on and all that is left of it is the open front section that houses over 500 of Steven’s favourite CDs. When Steven came along, we quickly realised all the glass and glasses had to go. As time progressed, where once stood a fine parade of sherry glasses, there now stood rows of folders of social care correspondence. The knick knacks were wrapped up in cotton wool and banished to the shed and in their place came Steven’s model figures – the complete set of Gladiators, all the Camberwick Green characters and thousands more. The springs went on the drop down units and I had to sell all my albums the year Hillingdon stopped my housing benefit, to pay the rent.
When we knew about Steven’s new house, my first thought was that it is time for the last remaining unit to go. To meet his five siblings in IKEA heaven. Trouble is, I’ve never found anything else with such depth of storage. We’d need loads of those modern shelf units to fit in Steven’s entire music collection.
So the unit, whose pale blueness has long faded and who is seven years older than Steven, is coming with us. In fact it is going to take on a new lease of life. We’re going to have the TV on the wall and leave the TV cabinet behind, so the old unit will now be the home of the DVD & VHS player. A new trick for an old dog.
That Unit may even outlive me.
Last year the NHS launched another of their interminable schemes – Change is Changing. A nonsense title which sailed straight past the irony that, by and large, huge systems are totally resistant to change because they threaten the very foundations of that system. Exnovation. Boat Rockers. Flotillas of Change. Vanguards. Catching apples from the cart. They come and they go but one thing they seldom produce is change.
I can’t catch my breath at the moment for all the changes that are happening in my personal and professional life. The house move is whizzing along. The decorating will be finished by Friday, the carpets laid next week, the new furniture delivered next week also. All ready for the big move on the 3rd. Even Steven seems to have given up on resisting the change & being overwhelmed by the understandable anxiety of a move. The last few days, he has calmed down considerably. Yesterday, the removal man arrived to give me a quote. Steven shook his hand and said “Hello Luke. You’re my moving buddy”. It’s going to happen. Go with it.
My professional world is changing. I’ve been invited to co author an academic paper about 7 Days of Action. And two days later I was asked to sit on the panel at an LD conference discussing mine and Steven’s experience of Personalisation. This is all new to me and spark off thoughts like, ” you’ll be way out of your depth”, “they’ll laugh at you”, ” you’ll be exposed as a fraud”. But once I get off these thoughts, I find myself getting excited by the adventure. Nothing ventured, nothing gained. Change is changing.
Even my therapy world is changing. A few weeks ago I was discussing with a colleague that old staple of existential training – the four worlds of existence. I flippantly said that we should now have five worlds – the cyber world being the newbie. The therapy world is very dismissive and almost sniffy about online relationships. I’ve felt for ages that to ignore this crucial fifth world that most of us inhabit now is a great disservice to the client’s totality. Then Buggar me, last week, I was asked if I fancied running a workshop on the very subject for a PD group.
Usually with clients who are resisting a change in their lives, I find myself asking, “do you have any choice?”. It’s usually a case of climbing onboard, strapping on the seat belt, donning the hard hat and launching ourselves. Big institutions don’t do that. They like to give the presentation that they’re doing it but in reality the opposite is usually happening. They’re bunkering down.
Nothing Exposes this more than Southern Health’s Viral Quality programme. Millions spent. Awards aplenty. But their organisation is collapsing because it cannot allow itself to change. Their viral quality videos reveal everything that is wrong with their ” (non) lessons are learned” lie.
Woman on all Fours from their infamous Tim & Kira viral quality film is a goddess in my eyes. She is a genius who cuts through all the bollocks. Her appearance in the film shows that things will never change. It’s 11am and what does WOAF do at 11am every day – she has her tea and biscuits. And nothing is going to get in the way of that. So she bends double and crawls straight through the filming of this change celebration.
She should be the new CEO. It would certainly be more honest.
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.
I’m going to whisper this. With all my fingers and toes crossed – Everything seems to be coming along nicely.
Yesterday, the gasman came and we now have hot water and heating. The carpet man came to measure up. And Steven’s social worker arrived like a breath of fresh air. It looks like we may be getting a bath. The OT needs a letter from Steven’s GP explaining why it could be a safeguarding issue but she sounded like she understood. As she was leaving, the social worker asked, “Do you need extra support during the move”? I wasn’t sure what she meant but she agreed (subject to Panel) to increase the Personal Budget for the next three weeks, so I can get cover for the times I’m normally on my own with Steven. Being offered something without having to ask was so unexpected, I had a huge lump in my throat.
Today, we had the fence erected, the plumber sorted out the leak under the sink and the unflushable toilet. And Roy the decorator started work. For someone who seemed to be constantly eating, he got through an awful lot of work for one day. Lots of sealing and a first coat on a couple of the ceilings.
I got back to the flat at 3.30 and immediately started on the phone calls to all the official bodies and services. I’d given myself the rest of today, all day tomorrow and Thursday morning to break the back of them. I’d done the lot by 6pm. Even Talk Talk and their far flung call centre. Even the DWP for crying out load. I had planned to amuse myself by setting up a spreadsheet recording who won the prize for keeping me on hold the longest. I even had a column for the most music tracks that were played whilst on hold. In case you’re interested, the winner was Affinity Water with 7 of The Beatles greatest hits. But in at least four of the calls, I got straight through without even the opening bar of some Toyah Wilcox. Where did all this speedy customer service come from? It’s A Mystery.
The only downside at the moment is that Steven is really struggling. Screaming, holding his head in search of some kind of relief, he is in absolute agony. I popped back home this morning to do the wages and get his CDs ready for tomorrow morning’s disco. He hadn’t gone to his water aerobics – that’s two days running he’s stayed in. The truth is that there is nothing anyone can say or do at the moment that will reassure him. This is Steven’s first big change since coming off the tablets and the anxiety is bound to continue until we move.
As I left the new house earlier, I noticed the smell. For the past week it was the aroma of a million fags, unaired rooms, guinea pigs and unlived lives. Amazing how one coat of paint and a helpful social worker and incredibly loyal support workers can breathe new life into the place.
Last night, Steven told me off. It was brilliant. It was humbling. I don’t think it’s ever happened before. I felt one inch tall. I went back in time 46 years to that day at summer camp where I boasted to my friends that I could do “really cool reggae dancing” to Double Barrel by Dave & Ansil Collins. And my world came tumbling down as I did my cool reggae dancing and Sharon Martyn laughed.
Steven and I were doing a music dvd session and watching The Pet Shop Boys & Dusty Springfield. Steven has always seem to have had a very straight forward understanding of death. The deceased has a “bad” something or other. And when we’ve agreed which part of their body has gone “bad”, he follows it up with his certainty that it’s gone bad because they “bashed it” on something. I don’t think he understands how things can go wrong internally without being bashed. We bash things and if we’re unlucky, that leads to death.
He’s had a black toenail for a couple of days after catching his foot on the edge of the fridge. I don’t think he’s thought that he’s going to die. But the sequence of events work for Steven. Bashed his toe on the fridge – pain – bruised foot.
Yes. Dusty Springfield. Steven has known for ages that she died. This is how the conversation went:
Steven: Dad – Dusty Springfield’s died.
Me: Yes mate. Dusty Springfield has died.
Steven: Dusty Springfield had a bad chest.
Me: Yes mate. Dusty Springfield had a bad chest.
Steven: Bashed her chest on the ……?
Me: Bashed her chest on the garden gate mate.
Steven: That’s silly talking Dad. Talk sensible.
I was stopped in my tracks. Have we entered a new phase in our relationship? Have my autopsy reports been spotted for the fraud they are? Is it time to go in for proper medical reasons?
Steven: Can’t bash her chest on the garden gate. Garden gate is too small. Dusty Springfield bashed her chest on the floor when she fell off the comfy chair.
I didn’t want to argue that the living room floor is even lower than the garden gate. Dr Neary was satisfied with his diagnosis.
All this talk of silly talking took me back to 2010 and the visit from the Speech Therapist to teach me and two support workers how to talk to Steven. She had decided that Steven didn’t understand sentences with more than four words in. And when it came to instructions, every vowel had to be “stretched out like a piece of plasticine”. She wanted to observe us supporting Steven whilst he made some cheese on toast. When it got to the part of me saying, “Put cheeeese on bread”, Steven looked at me quizzically and said, “Dad’s doing silly talking”. The therapist chuckled and said, “Oh bless him. It might take a while for Steven to get used to this new communication”. I chuckled back in an embarrassed fashion whereas what I really should have said was, “No. Steven is spot on. This is silly talking. Excuse me a minute. Steve – you know how to make cheese on toast don’t you? You get on and do it and I’ll go and watch Loose Women”.
I wish I could talk like Steven. I wish I could cut straight through the nonsense. Instead of saying how it really is, I bumble and stutter and try to be tactful. It never works. And I end up furious with myself for being so incongruent.
New home. No more plasticine.
A quick recap of Moving stories from Friday to Sunday.
I got the decorator’s quote. It was much cheaper than any of us were expecting. He starts on Tuesday and reckons it will take him a full two weeks. That means all the plans go back a bit and it will now be Monday 3rd October before we move in. He’s got quite a job on his hands before he even lifts up a paintbrush. There’s quite a lot of plastering to do and the walls and ceilings need a good clean before he can start. (I can’t believe I’ve just typed that sentence. How can a property deemed fit for immediate habitation by the Council need so much basic work like plastering?).
We were let down on Friday by the deep cleaner. He changed the time of the appointment twice. I was at work, so gave him my sister’s phone number to call when he arrived. I saw my last client and then found four missed calls from the cleaner, claiming to have been and waited an hour. It was a clear lie. He wanted me to rebook for Saturday morning but I told him to sling his hook. A few people had said it was a waste of money anyway as the decorator was prepared to clean down before he started and we’ll have to do the floors again before the carpets are laid.
Steven has been so agitated since he came to see the house on Thursday. I think the move became very real for him in that moment. We had a three hour meltdown on Thursday night. On Friday, a neighbour called the police as he was making so much noise. And yesterday, was a horrible, draining meltdown from midday until about 5pm. Thank you BBC schedulers for putting on Toy Story 2 at 5.30. He needs constant reassurance that we are definitely moving there (“Yes Steve. Moving to the new Cowley house in four more Mondays”). Then he remembers something that is important to him and we have half an hour reassuring him that we won’t leave The Proclaimers’s CDs behind (Don’t worry yourself Steve. Letter From America is going in the box for the new Cowley house). Three more weeks of 24/7 conversations like that!
Tomorrow is full on. Off to Uxbridge early to get the extra keys cut and then a houseful of visitors throughout the day. The council’s gasman is finally coming to uncap the gas supply. Seven whole days after picking up the keys! And why didn’t they tell me the supply had been capped last Monday? That would have been far too helpful. But just imagine if we’d moved in last Monday – seven days without any hot water. In the afternoon, we’ve got someone arriving to measure up for the carpets. Oh, and the new higher fence will be installed – the housing officer finally gave her permission for that to be erected but stressed it was down to me to fund. Nothing like reasonable adjustments in Hillingdon.
And late afternoon, I’ve pressurised the social worker to pop round. I’m not sure why I asked. I think I want someone official to bear witness to how bad the place is. I want to watch her face as she goes from room to room. I want her to step up and really be Steven’s advocate.
Yesterday, I got a letter from the Housing benefit department about my request for the rent on both properties to be covered until we move in. I’d written them a long letter on Tuesday but that was apparently not good enough. They want further explanation of why we can’t move in straightaway and need this extra time. I didn’t know what else to say. I wrote another letter and attached all the photos, asking whether there was a single member of the HB team prepared to live in such squalor. The appeals officer is the chap who had to represent Hillingdon at the Tribunal for our appeal back in 2013. He got his arse whooped that day and I’m just hoping he doesn’t want to go through the same experience again and does the right thing. But there I go again. I shouldn’t have to rely on hope – there are regulations that should make this straightforward.
To end on a positive note, the donation page that Steven’s friend set up is doing well. I am incredibly moved by people’s acts of kindness. The money raised will pay for the carpets and curtains, the gardeners, the new fence and possibly the removal men.
Thank you so much.