Trust and The Trust

Some blog posts are hard to write – this is one of them. It is also my 200th post on this blog. For the first time, I’m writing, not to tell a story or to make a point, but to sort my head out.

At the time of writing “Pathways and Cul-De-Sacs” on Saturday, I was disillusioned and desperate. Learning that the NHS Trust’s learning disability nurse only works one day a week and comparing that to the spin put on her role by the Trust was the final straw. How could all those medical people involved in Steven’s care be so dis-interested in his pain? Why didn’t I know that a learning disability nurse would be such tokenism and another cul-de-sac? Why are all the caring systems such utter shite?

In my meditations over the past couple of months, the same message keeps coming up – Immediacy. You must act now. Not just about Steven’s health but about everything. I can’t remember another time in my life when there has been such a sense of urgency to act – to take charge. It also feels that if I don’t heed the message, it will soon be too late.

With all these thoughts swimming into my consciousness, I arranged for Steven to go to a private clinic on Sunday. The attitude couldn’t have been more different to what we’ve encountered at the GP surgery and at A&E. In the space of four hours, Steven was examined, had blood and urine tests and a CAT scan. It was through the latter, that after four weeks of awful pain, we finally got a diagnosis in one day. It would have taken at least another month of agony & pain induced meltdowns if we’d continued down the road we’d been sent down.

The diagnosis is Stage 2 non-alcoholic steatotapatitis (NASH) – fat deposits on the liver that can cause aching pain in the abdomen and relentless tiredness. Exactly what Steven has been trying to tell everyone for the last four weeks. The big problem is that it can’t receive direct treatment – it is caused by excess weight and will only really correct itself with weight loss. He can have pain relief in the meantime.

And at this point, I’m back in court in 2010/11 and having to deal with Hillingdon’s “belief” that I don’t take food issues seriously. And I get scared because my imagination pictures it all happening again. And if I start to push what I truly believe that it’s not fundamentally a food issue but an anti-psychotic medication issue, then it becomes a safeguarding issue for someone who thinks that they know better.

And then I go back to, “why the fuck is he on medication in the first place?” How can his weight double in six years of being on tablets and nobody sees the link? The latest psychiatrist report showed no signs of any mental health issue, yet here we are, shovelling anti psychotic medication into him. And I also go back to his time in the Unit and the lies they told to justify why Steven lost some weight whilst there. Steven has told me – because he often went days without any food at all.

And then I remember the meditation. Immediacy. Act now. And I separate who is useful to Steven and who is useless and ruthlessly remove the useless. There is too much at stake to be faffing around with the system. I’ve been doing the same thing for months with the housing situation and the care package, this is just another version of the same. Only this is a matter of life and death. The psychiatrist who agreed with Hillingdon’s plan to send Steven away to Wales retired in early 2012 and since then, Steven has seen a series of “keep taking the tablets” locums. No use whatsoever when you’re dealing with a life threatening condition. Having lost trust in the NHS Trust, I went elsewhere on Sunday and immediately a light began to shine. I said to a friend on Monday: “I wish I could find a psychiatrist who specialises in autism”. Ten minutes later I suddenly realised that I knew one – the psychiatrist who was appointed as the court expert back in 2010. I managed to track him down and spoke to his secretary. Hopefully he will be prepared to take us on and I can get a second opinion about the connection between the medication and the weight gain that doesn’t ignore the bleeding obvious.

I took a couple of hours out on Monday night. It wasn’t a respite night but I really needed some breathing space and asked the support worker to stay on late. I went into Uxbridge for something to eat and decided to drop the clinic’s report into the GP surgery. The clinic had also given me a CD of the scan. It was infuriating. The receptionist kept giggling about the slowness of their new computer system and she wasn’t sure if the message she was sending through to the doctor was getting through. I said, “But this report is about Steven possibly dying” but that didn’t register. Whilst there, I also asked how the blood tests that Steven had recently didn’t show this up. It turned out that the bloods he had taken at the hospital hadn’t been passed on to the GP. Or perhaps they had and their sodding new computer system had lost them in a haemotology void somewhere.

The time is now. When I came up for air, I hope I started to see things a lot clearer. The systems that are meant to help us and serve us are dead. I’ve written about this before but in the past, I’ve meant they’re spiritually and ethically dead. Now it feels a lot more literal. There is no effective life force in them. And if I engage with a dead system, then Steven might be dead.


“A Preventable Death” – Some Questions

The report into the death of LB at Oxford’s STAT unit was harrowing reading. Even before the dreadful events of 4th July, there were horrid stories of restraint that have absolutely no place in care in 2014 (if ever!).

I’ve got some questions:

1) Something happens to our young autistic dudes around the age that LB was. Why do the professionals always give it a mental health label? For me, it is a developmental crisis and makes perfect sense in the context of autistic condition. For most autistic dudes, routine and predictability are the foundations of their life and then all of a sudden, you start to get wind of the fact that this all going to change. Everything you’ve known for the past 10/12 years is going to change overnight. I remember Steven getting horribly confused and anxious in his mid teens about what happens to all his friends who left school in the summer. We had one really upsetting night when he was convinced that they had all died. BUt when adult social care get involved for “transition”, a strange mental health filter starts to appear and a certainty that places like STAT will sort things out. Bollocks.

2) What is the purpose of assessment and treatment units? Is there any evidence that they do what they claim to do? Is there any evidence that they are a success? Most people I know who have been in one of these places, either stay there for ages or get moved on to another residential establishment, usually hundreds of miles from their families and friends. I’ve said it before but I think these places are just warehouses. They’re “we dont want to pay for a home support package” pen. And because these places exist, they have to be filled. I’m sure that was one of the reasons why Steven was moved to the Unit back in 2010. Its is a 4 bed warehouse and one of the guys was due to move out – they desperately needed another person to move in to keep the place going.

3) It probably follows on from question one but what is it with the prescribing of anti psychotic medication for our dudes? I’ll blog about it another day but Steven is now experiencing major health problems that I’m sure is down to the tablets he’s been on for the past seven years. In seven years of anti psychotics, his weight has doubled. His food intake had reduced considerably and he still does the same amount of exercise. Where is the evidence that this medication is really useful? And even if it is, does it outweight the side effects that will seriously affect the person’s health or quality of life.

4) Why are care plans so crap and inhuman? They tell us very little about the person they’re meant to be about.

5) Why are families considered the enemy as soon as our dudes move into adult social care? A lifetime of knowledge is instantly dismissed and the professionals invariably adopt a “we know best” position. The way in which Sara Ryan was sidelined and criticised by Southern Health is deplorable. I’ve told the story before but when Steven was the Unit, I didn’t even warrant being his next of kin on his “patient passport” – that went to his keyworker at the unit. Don’t they consider that by freezing families out, the person is actually being put at risk.

6) Why are there not criminal prosecutions in LB’s case and others we have heard about? Some of the people involved in Steven’s unlawful deprivation of liberty have received several promotions since the event. Where is the responsibility and accountability?

7) One thing that has struck me today has been the lack of comment by the big disability organisations. In 2010, I couldn’t get any help from any of them but following the court judgement, the rent a quotes went into overdrive. Are they frightened of upsetting their funders? Aren’t they meant to be on our side? Their silence today is inexcusable.

A great young man died. And a great young man’s family has been ripped apart. We owe it to LB and his family to do everything we can to turn the piss awful state of adult social care around.

Pathways & Cul-De-Sacs

I don’t like the word “Pathways”. It’s another example of bollocks speak.

Steven has now been in pain for four weeks. He is in terrible agony when he sits down, although the pain seems to ease on laying down or standing up. In the past week we have been to the GPs four times; had four consultations with them over the phone and been to A&E four times. We still don’t have a diagnosis. Yesterday, Steven went to have another XRay. The car journey was agony and brought on a pain induced meltdown. It took ten minutes for him to get out of the car because he was in so much discomfort. A paramedic stood and watched the whole arrival and on the point of Steven stepping out of the car, she chose to walk in front of him through a very small space. Unfortunately, Steven kicked her. She called security who wanted to push for Steven’s arrest. Thankfully, one of the staff in the hospital allowed him through for the XRay and by this time, the pain subsided and Steven calmed down. As they were leaving the hospital, security had called the police and there were 8 officers waiting for him. The police were great and saw what was happening immediately. They allowed Steven to get straight back in the car and come home. No further action. By the police. Who knows about medical further action? We’ve now got to wait for those results and then for an appointment with the urologist to do a scan. As one of the support workers shouted at the security guard, “THIS …..IS….. ABOUT……PAIN”. Nobody seems that bothered about that.

I’ve learned a lot of the past couple of years about “reasonable adjustments”, so when I got home, I checked out the Trust’s policy for the learning disabled. There are three pages on Hillingdon Hospital’s website devoted to its policy and a whole page devoted to the “role of the learning disability nurse”. A learning disability nurse? This could be the answer to our prayers. On the website, it talks about her role as “creating pathways”. There’s a lot of facilitating and co-ordinating going on. She/he is the bridge between the patient, the carers and the medical staff. She can arrange things that will cut down the anxiety the patient might feel having a hospital experience. It couldn’t be better, could it. I thought I might ask her if she could push through the scan; perhaps arrange an ambulance for Steven to get to the hospital so he can lie down and perhaps avoid the possibility of a pain triggered meltdown before he’s even seen by the staff. I decided to phone her this morning.

The learning disabled nurse only works on Thursday. There is only one of her. And much of her time is spent in meetings.

That was the final straw. I started to search for private clinics. As we still haven’t had a diagnosis, it’s hard to find the right service but Steven shows all the symptoms of a kidney stone (or stones), so that seemed the best place to start. I’ve found one who can see him tomorrow. There’s a consultation fee, a charge for the scan and then we discuss the fee for whatever treatment is needed.

I spoke to a friend about it earlier and whether I should use Steven’s damages to expedite this. I can moan all I like about the service at Hillingdon but it’s not going to get Steven any better. Over the last year, my idea that the money would be important for Steven’s future has taken a big knock. As my friend said, “there is no future”. Such is the nature of our life and the systems we find ourselves in, there is only a present tense.

The big irony is that the State had to pay Steven that money for a horrendous failure. Steven is now having to use his money to deal with one enormous failure after another. But if it restores him to health, that is the most important thing.

Don’t be fooled by fancy talk of “pathways” – they are dead ends. They are certainly not designed with the patient/client in mind. Re-reading the “roles of the learning disability nurse”, I can see that it is all lip service. It is all “promoting” and “partnership working” – nothing hands on that might be useful to someone in pain.

A Slice of Personalisation Reality

Remember that phrase – “Just so Steven can go swimming”?

Here is my diary for next week. Every day is a 6am start to let the support worker in.

A.M – Direct payments pay day and quarterly return to LA
P.M – Direct payment worker on leave. No money in budget to pay replacement, so have to take afternoon off work. Mr Bean session.
Evening – Not a respite week, so probably have a Muriel’s Wedding evening.

A.M. – Meeting with cab firm to discuss fares and contracts after personal budget implemented.
P.M. – Visit from Office of Public Guardian to look at accounts and discuss property & affairs deputy.
Evening – Marathon music video & dvd session

A.M. – Chase up the council refunding the overpaid council tax. Chase up ex-landlady over return of deposit on old flat. Finish writing contracts for support workers for post personal budget.
P.M. & Evening – At work

9am to 2pm – Work
P.M. – Weekly Shopping & book hotel for next week’s conference
Evening – Fawlty Towers session

9am to 3pm – Work
P.M. Chase up results of Steven’s XRAY and chase up date for ultra sound scan
Evening – Book cabs for next week. Meeting with support worker to discuss his time keeping.

A.M. – Work
P.M – Do a cover versions tape with Steven and then watch Gladiators video
Evening – Another marathon music video and dvd session

A.M. – Housework, followed by Mencap Pool
P.M. – Do the follow up paperwork for the direct payment tax return.
Evening – Write up final contracts and my plan for the personal budget for the support planner’s approval.

Obviously, each day includes doing Steven’s baths and cooking the meals. And there may have to be room made some time during the week if (a) the appointment for the scan comes through, or (b) Steven’s pain gets worse and we’ll have to go back again to the GPs

I’d like this to be my last post with “Personalisation” in the title. I don’t want to hear any more from the personalisation crowd about how “liberating”, “joyful” and “full of choice and freedom” it is to have a personal budget.

Thank you.

Steven Neary Gets His Doctorate

Steven is my greatest teacher. I learn so many lessons from him. And yesterday, he delivered what could turn out to be one of his most important teachings.

For a long time now I’ve struggled with the idea that autism as a disability. Instead of a nice neat “disability” label that firmly establishes the power dynamic, I’ve started to see Steven’s autism just as a difference. Different framing. Different relatedness. Different communication. Different priorities. Different frequency. Different connectedness to the world around him. It’s easier for us to categorise this as a disability because to think any other way forces us to challenge our notions of reality. We may have to reconsider our ideas about how we frame, how we relate, on what frequency we operate.

I wrote in the last blog post “spent” about our experiences at A&E on Tuesday. Last night, I had a short dream where Steven was at a university, fully gowned up, collecting an honorary doctorate for his “outstanding contribution to the world of communication”. I could see the pun in “doctorate” – we’ve been surrounded by doctors for the past three weeks.

When we arrived at the hospital, Steven was having a pain induced meltdown. It was very noisy, very intruding and potentially aggressive and oh so easy to dismiss into a conveniently labelled box called “challenging behaviour”. We’ve got it arse about face. Steven’s reaction to the pain was 100% authentic. he was not encumbered by social niceties. The challenging behaviour came from everyone else by them not being able to tune in to this incredibly direct communication. The doctor wouldn’t start examining Steven until he had been sedated (Steven not the doctor). And then worse, once Steven was calmer and by chemically moved into the more acceptable world, the doctor still chose to address me rather than Steven, although Steven was making himself very clear. How’s this for clarity: “Steven Neary’s got a bad pain. Want doctor to get his machine and make Steven Neary all better”. There was nothing aggressive about his words or actions but I could see the staff were slightly threatened by this level of directness. Compare this to me. I was reasonably assertive but rather hand wringingly polite and kept, unnecessarily expressing my gratitude. Last night I wrote a letter to the GP in preparation for Steven’s appointment with him today but when I woke up this morning, I tore it up. I was playing the part of the “grateful father” when all that was really needed was “please do an urgent referral to the urologist”.

We get so uncomfortable with real communication – it seems to threaten our very core. When Steven used to go to the respite centre, there was a female member of staff that he didn’t want to have anything to do with. At a meeting with several professionals, Steven told us why – “K does massive smelly farts”. People squirmed. People tried to dismiss it as a joke. People tried to use it to teach Steven about acceptance. But what bliss to be able to express your complete phenomenological experience of someone/something. And how confusing to have others try and distort that experience because they can. Because you are “disabled” and need to learn the rules.

A lot of my writing is about language and communication. I write a lot about my confusion of the language of the social care world. I understand it better now. Not the words. But I understand the intent, which as I see it, is to hide, to conceal, to distort. Steven uses langauge to illuminate – in the social care world they use language to fog.

To deal with the threat of such authentic relating, the social care world (and the wider world probably) has had to devise systems to lessen the impact of the communication. The autistic person’s wave frequency gets blocked or scrambled into something the wider world can cope with. It doesn’t matter where that leaves the autistic person – more than likely it will lead to meltdown which of course, confirms fits like a glove into the system the world wants.

But just supposing, Steven has got it right and we have all got it wrong. That would be a turn up for the books.


I’ve never felt more exhausted that I have the past few days. And there doesn’t seem to be any let up on the horizon either.

A big part of it all is this “Personalisation” bullshit. I’m getting a bit tired of people who like to wave the flag for personalisation, claiming that my deal with the council to secure Steven’s personal budget is a success story. It’s got buggar all to do with the principles of Personalisation. It’s about money and nothing else. The work involved in setting it all up has been phenomenal. Over the past seven days, I’ve spent ages writing contracts and job descriptions for the support workers. I’ve had steam coming off my calculator as I try and work out the different permutations of tax, national insurance and employer contributions. Yesterday, I spent 90 minutes on the phone to HMRC, just trying to clarify a simple point about the fact the workers will still be registered with the old agency, although their main employer will be me. The person couldn’t have been more unhelpful. And after 90 minutes, I still have to face the prospect of another call to their forms department because the main office don’t deal with the issue of P14s. And then theres the day to day stuff of being a manager to five staff. One of the support workers was sick last week and quite frankly, he wasn’t really well enough to come back yesterday, so I had to deal with that. I found myself putting my counselling hat for one of the others whose OCD is getting worse and could cause problems when he’s meant to caring for Steven. I’m not uncaring but looking after Steven, me, my clients at work, my friends and family I can do willingly and have the energy for that. But I don’t want to have to take on a whole new set of personal issues. And that phrase I wrote a few blogs ago keeps ringing in my head – “And just so Steven can go swimming”. Surely, it shouldn’t be this complicated; this time consuming; this incredibly involved.

I had a ruck with one of the cab drivers on Sunday. Steven was crying in pain in the car (more of that later) and I had to sit and listen to the driver complain about how much money he loses on other jobs by being given Steven’s rides. When we got to the pool, Steven was in so much pain he wouldn’t get out of the car, so I asked the driver to take us straight back home. That prompted another 15 minutes about the £27 he lost in having to do the return journey. I made a complaint to his boss and it looks like he’s had his knuckles smashed. Good.

The biggest cloud is Steven’s health. We’re now entering the fourth week of him being in real pain when he sits down. I’m becoming more and more convinced that he’s got kidney stones but it’s so hard getting the medical people to take it seriously. I keep thinking of that quote from Sara Ryan about the learning disabled being seen as “not quite human”. I’m not sure if it was you or I having this problem, we’d be treated so dismissively. Today we had our second trip to A&E in a week. The staff were great. We were fast tracked through straight into a cubicle. Steven was making a lot of noise when we arrived because he had been in agony sitting in the car. They did everything one might expect from them, except we’ve just come away with another prescription for antibiotics and told to book another with the GP at the end of the week to “review the treatment”. He’s bearing the pain very well actually but all he wants to do at home is lie on the sofa, because it is the most comfortable position. Sitting at the dining table to eat his tea is agony and he hasn’t used the computer for a fortnight because that is too painful as well. How long will it take before someone takes the bull by the horns? It took me back today to the time Steven was under a DoL and Hillingdon wouldn’t refer us to an IMCA. I knew we were entitled to one but you can’t contact the service yourself – you have to be refered. The same today – I can’t pick up the phone and call the urology department (I know because I tried) – I need a GP referral.

So, personalisation, health, suddenly becoming a manager, and a desperate lack of sleep sums up my last week. And no sign of a light at the end of the tunnel.

A Single Munchie

This works for me on many levels.

Steven was sitting on the sofa, watching Deal or No Deal and eating a packet of Munchies. His support worker, who he has a great laugh with was darning one of his socks.

M: Go on Steve – let me have one of your Munchies.

Steve: No thank you.

M: Ah – it could be my special prize for a good swim today.

Steve: A special prize?

Long pause for thought. Steven puts a single Munchie on the arm of the sofa.

Steve: Michael wants a special prize. No Munchie yet.

Another long pause whilst Steven works out his question…….

Steve: Michael – Simply Red sang a Harold Melvin & The Bluenotes song. It was a song called?………..

Sadly, Michael didn’t know the answer, so Steven ate the last Munchie himself.

To get a prize in the Cowley house, you need a thorough knowledge of pop music.