I’ve just had a very full on three days. On Wednesday I travelled up to Halifax to speak at a forum for social workers on Thursday morning. On Thursday afternoon, I was whisked across the borough to meet a group of best interest assessors. Then I travelled to Birmingham to speak at a training event for BIAs yesterday morning.
I met some fantastic people. I’m always slightly nervous that I may meet some hostility, only because I was involved in a battle with the system and the audience is made up of people from the system. My anxiety is always unfounded. At these two events, like previous ones, I received a warm welcome and the feedback after was very heartening.
After the Halifax talk, I laid in bed on Thursday evening, trying to understand why I get the response that I do. It’s been 4 years now since the unlawful deprivation of liberty and three years since the High Court, so I guess that I am more emotionally distanced from the story. It feels weird to see the audience experience such a range of emotional responses to the speech. I see people crying when I talk about the night Steven used the return of Robbie Williams to Take That and escaped from the Unit in his pyjamas. A few minutes later, I see people laughing out loud when I tell them about Steven lobbing the risk assessment and daily log binders off the balcony and Hillingdon’s response that we didn’t have a risk assessment for the risk assessment folder. And I see people start to get angry when I talk about the “fake transition home plan” and how constantly disappointed Steven was by the ever shifting goalposts. The audience may go through the emotional wringer but I usually feel quite calm during the delivery.
Until yesterday. And I had to seek refuge in the garden as I became a blubbering wreck. In Birmingham, I shared the speakers platform with Justice Johnathon Baker. Since I’ve become a DoLs’ geek, I’ve read lots of his judgements and become a big fan. In his introduction he talked about why his work is important to him and for him it is because “people matter”. His humanity underpinned his whole talk. After my talk, he had to leave and we had a farewell chat. We shook hands and he said: “Peter sends his regards”. I was slightly confused – “Peter?” Then it became clear that he meant Justice Peter Jackson, the judge in our case. With that, he left and I crumbled. When I’m talking, I’m in control but that lovely warm comment came so unexpectedly, that it cut through all my self protection. Fortunately it was the lunch break and I hid in the garden to compose myself.
Changing the subject, I had a recurring thought during both events. It struck me how very alone and isolated the best interest assessors can be. They may have regular(ish) forums like the one I was attending and training days but neither of the groups seem to have the opportunity for immediate support. This wasn’t unusual – it’s been like that with every BIA team I have met across the country. In my world of counselling, I have weekly supervision and if I have a difficult session I can have immediate access to a peer to work through whatever is going on for me. Often it’s more about my stuff that is triggered off by the client’s material, or simply offloading the load of being with someone else’s pain. BIA’s must hear some terrible stories. The people I meet at these conferences are great decent people with endless humanity. Who supports them through the emotional side of a best interests assessment? It made me think of any of the BIAs in the Neary case. She’s just been and had a harrowing two hours with a distraught father and a persistent IMCA – how does she get her head together after she’s left our flat? It seems a big gaping hole in the process to me. And may possibly offer an explanation for bad assessments – the lack of support may grind the BIA down. They may be unwilling to stick their neck out, knowing that they could be in for a rough ride with the supervisory body. They may not be willing to go that extra step for P because that may require an emotional resource that they are drained of.
I often read people in the social care world on Twitter bemoaning the loss of “reflective practice” in their work. That seems a real shame to me if that door is now pretty much closed for people who genuinely want to do the best by their clients.
As Justice Baker said – “people matter”. And without the important matter of reflective practice, both worker and client must surely suffer.
Finally, thank you to Brian, Mark, Helen and Karen in Halifax and Wendy in Birmingham for looking after me and to all the pople who spoke to me during the breaks with really positive feedback.
I’m off to Halifax in a couple of hours to speak at a social work conference tomorrow. And then when that is over, travel on to Birmingham for an event with some best interests assessors on Friday. Although it is work and there is a hell of a lot of travelling, I am trying to treat it like a break as well.
As I was finishing off my notes this morning, I realised that at the point I will be starting my talk tomorrow, it will be exactly the 4th anniversary of the meeting I attended with Hillingdon where they set up the fake “transition home plan”. They had been “assessing” Steven for 8 weeks but i wasn’t allowed to read their reports until I arrived for the meeting. It was very upsetting to read everything they had logged and understanding how distressed Steven must have been at being there. It was also at this point that they started to talk about not believing me – they were so convinced by their 8 week picture of who Steven was, that they discounted my 20 years experience before that. Their view was that if Steven is like this in the Unit, then he must be like it all the time and I must underplay or not report incidents with him at home. You really can’t fight that sort of attitude.
It will be odd telling the whole story again tomorrow. The scars are still there for me and Steven but it has to be said that by going through that awful experience has given me the opportunity to speak at events like the next two days. By fighting the door closing on Steven and him being incarcerated permanently in a hospital in Wales, doors have opened and it feels okay to walk through those doors.
When I go away on these trips, we always tell Steven that “Dad is sleeping at counselling work”. A couple of weeks ago, he said to me – “Dad doesn’t sleep at counselling work anymore” (I haven’t been away since October). I wasn’t sure if he was saying this as a good or bad thing but I was a bit nervous about mentioning this trip. I needn’t have bothered. Steven has been busy making plans with his support workers and has got the next two days nailed. Here are some of the highlights:
This afternoon – visiting his mother to read his old photo albums.
Tonight – listen to his Blood Brothers CD. This will probably mean Steven and Michael having to act out the final death scene and singing “Tell Me It’s Not True” very loudly.
Tomorrow after swimming – Mrs Doubtfire, with the support worker having to make sure there’s no cream around for the “face pack in the fridge” scene.
And my favourite – I just heard Steven telling Alan – “Alan, after pepperoni pizza on Friday, Steven Neary and Alan will be singing Petula Clark songs”. (I’m glad I remembered to book a hotel or I could be sleeping in the subway).
It’s great not to be needed.
Still don’t get it.
As the JusticeforLB campaign gathers inspirational and very moving momentum, there are important pockets of the LD world that remain resolutely silent.
To be honest we shouldn’t be surprised by the response from Southern Health. They set out their modus operandi from the very beginning by trying to pass LB’s death off as “natural causes” and they’ve been as relentlessly shitty ever since. From the missing CEO to the latest dodge of waiting for the results of the inquest, they have continued to lower the bar to new depths of contempt. Image over humanity.
But what of the commissioners? I don’t even know who they are. I remember Sara Ryan getting hold of the leaked email a while back that revealed they were putting the blame firmly at the door of Southern Health but didn’t want to say so publicly for fear of denting the confidence in one of their major providers. That’s nice of them and shows which side their bread is buttered. Image over humanity. It’s cheering to know that when push comes to shove, you are backing your providers at the expense of the vulnerable people needing your service.
And where are the major charities? Planning their next conferences? Checking their funding applications? Who knows? They’re not supporting the JusticeforLB campaign in any meaningful way. This echoes my experience whilst Steven was held in the Unit. I couldn’t get any of them interested when I needed them. But after the Court judgement, you couldn’t move for them putting their twopennyworth in. Image over humanity.
And who is taking these dreadful assessment and treatment Units by the scruff of the neck. I’ve been trying to read my history on how these places developed but I must be missing something. They get discredited time and time again and yet still, they seem to be the prefered option of some commissioners. Backhanders? It can’t be ignorance.
It can’t even be about costs savings. I’ve just had all the final paperwork and figures through for Steven’s personal budget. It’s a very good package and covers 2:1 support when Steven is out and about, 1:1 support at home whilst I’m at work, 42 nights respite per year and his full transport costs paid. It’s comprehensive and not cheap. BUt it’s still 57% cheaper than the cost of a week in an assessment and treatment unit. What is it all about?
Southern Health, The Commissioners, the Charities – none of them come out of this at all well. BUt it’s useful for families and carers to know this. Good to know where we stand. And good to remember when it gets to National Carers Week and we see one of the big guns on the Daybreak sofa telling us what their organisation is doing to help their clients. Image over humanity.
Since getting the private medical report and a diagnosis for Steven’s pain a week ago today, we’ve experienced the sublime and the ridiculous of the medical profession.
I managed to track down the psychiatrist who spoke in court in 2011 and he wrote me a lovely letter on Friday. He remembered me and Steven and was willing to help.
Ironically the day before he contacted me and after a week of trying to make contact with Steven’s own psychiatrist, I got a phone call from her. She had read the report and I was really shocked that she was taking it seriously. She has agreed to accelerate the reduction in the medication (hopefully with the outcome of Steven coming off them all) and we had a great conversation about how to do that and what to have in place if we encounter any problems during the weaning off period. It was all very encouraging.
And now the not so encouraging, I waited all day on Tuesday for the GP to phone me back. Nothing happened. I phoned late on Tuesday afternoon and was told me he would phone me, either after his surgery that evening or Wednesday morning. Nothing. I phoned on lunchtime on Wednesday to be told that he had the day off and to try again on Thursday. Come Thursday, nothing happened, so it took more calls from me and he eventually phoned back at 4.30pm. I could tell instantly that he was miffed. He had read the report and I guess that he didn’t like us going to the clinic to speed up the process. His first comment threw me: “There is nothing in the report about his gall bladder. They may have missed that”. I said that it was a full body scan and if they had found a problem in the gall bladder they would have mentioned it. I reminded him that they had found a problem (in the liver) and that’s where we should be concentrating.
And then came the killer line:
“Mr Neary, have you ever heard of a thing called imagined pain?”
I was speaking from the hall at the time. Steven was in the kitchen having his hair cut. As he was sitting down, he was yelping with the pain. I stuck the phone round the kitchen door and said – “Does that sound imaginary to you?” He then delivered a short lecture on how people can have a pain originally (“Steven did have a kidney infection to bein with”) but once the pain subsides, they become convinced the pain is still there.
I wanted to hit him. A full CT scan has revealed a serious problem and he wants to dismiss it as imagined pain.
I write last blog post that I have a current mission to separate all the people involved in Steven’s care into the useful and the use-less and cut out the latter. They take up so much energy for nothing. In fact, if I continue to engage with this prat, it could have life threatening consequences for Steven. He has to go.
Actually he’s got precious little to offer at the moment. I’m sure the problem is with the medication and it’s the psychiatrist we need on side and thankfully we have that.
After I came off the phone on Thursday, I was ranting to the support worker about the insensitivity of the GP – “He’s putting it down to imagination”. Steven burst the ball of rage:
“Okay Dad. I’ll do it”.
He went over to the stereo and found “Just an Illusion” by Imagination and we sang and danced our way out of my fury.
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.
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.
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.