I guess it’s common knowledge now that last Thursday I went into Hillingdon Hospital to have the tumour removed from my bladder. I was discharged on Saturday but at midnight on Sunday I had a heart attack and was rushed to Harefield Hospital for emergency surgery. I’m back at home now feeling mightily relieved that (a) the tumour was benign, and (b) I’m still alive.
The two experiences couldn’t have been more different. There were brilliant staff in both hospitals. But there were some not so good ones, located solely at the first hospital. I’m sure it was down to the cultures of the places. Although in the same borough, they were different trusts. Hillingdon was characterized by a threatening chaos, whilst Harefield (which is a specialist trust with the Royal Brompton) was heavenly in its quiet authority. Hillingdon seemed to be run on a skeleton staff made up in the main of bank staff and locums: Harefield had plenty of staff around and as one nurse said to me, “When you work here, you never want to leave to go somewhere else”.
Here are a few vignettes of people I encountered over the past week:
It didn’t get off to a very good start. The admissions nurse wasn’t paying an awful lot of attention and kept writing something down that was completely different to what I’d told her. Several times she told me how much better her life would be if she won the lottery. This scanty attention to detail was there from beginning to end. When I got home on Saturday I had a closer read of my discharge form and in the section about my GP, they’d put the practice we left over 25 years ago. I have no idea where they dug that up from. I must have given my GP’s details to at least 12 different people over the past few weeks, including the admissions nurse. The scary thing though is that my diagnosis, surgery and follow up treatment would have disappeared into the void if I hadn’t had noticed.
The manager of the recovery room was fascinating. Clearly playing a part he had based his character on one of those belligerent New York detectives that shout a lot in Murder She Wrote. “I WANT BED 7 MOVED NOW. GO. GO. GO”. Although I was out of my head on drugs, I was fascinated by this pillock. Compare that to Harefield. As the ambulance pulled up, the crash team were waiting for me in the car park. Nobody shouted. Inside the theatre each member of the team got on with their prep whilst the surgeon pulled up a chair, rested a calming hand on my shoulder and explained what he was going to do.
The strangest, most sinister person I encountered was the ??? who appeared out of the blue on Friday. Hello my name is had completely passed her by. In fact she only spoke to me twice in the hour she worked on me. She decided to remove my catheter and fit a larger one. She was rude and arrogant. At one point when the pain was so bad I was screaming and punching the bed, the assisting nurse came and held my hand. That didn’t go down well – “Nurse, remember why you are here. Your role is to assist to me”. But the oddest thing was that nobody seemed to know who she was. The assisting nurse didn’t know. I asked other staff on the ward and they didn’t know either. I don’t remember seeing her before or after the catheter assault. Someone suggested she was the on call ward locum doctor. I called her “the assassin” and I’m only slightly joking. I’m convinced it was that traumatic experience that led to the heart attack two days later.
Fast forward two days and I’m in Harefield and it was like chalk and cheese. Touching humane care. On Monday I wasn’t allowed out of bed all day and had to use one of those cardboard bottles for peeing in situ. After the assassin’s work it felt like I had razor blades inside my knob. One of the night nurses sat with me for over half an hour as I struggled to produce a drop and we had a lovely conversation comparing musicals we have seen. Then there was another nurse who went off in search of a BIC razor after my own razor snapped in half in my toiletries bag. Or there was the rehab nurse who gave me nearly two hours of her time yesterday morning and we shared stories of raising our autistic sons. There was always something for them to do but they gave the precious commodity of time. I’ve cried quite a lot since Sunday, but they were those good tears when you’re profoundly moved by someone’s humanity.
One final thing that made my week – on Tuesday I was pushed in a wheelchair to have an echocardiogram. I discovered new parts of the hospital I’d missed when I was being trollied to theatre on that opening night. We went through a pair of double swing doors and the venue for the echocardiogram was the Eric Morecambe Suite. I thought that was delightful.
This is probably the last I’ll write on the subject of my hospital experiences. I’m not a huge fan of medical blogs. I know I wrote a couple of weeks back about my childhood message of not blowing my own trumpet but I am quite proud of how I’ve dealt with the last week. The work I’ve done this year both in the gym and on the meditation couch has definitely paid off and stood me in good stead this week.
I’m home.
Last night’s dream:
I, and a handful of people board an Edwardian cliff railway, like the ones at Babacombe and Folkestone. The carriage sets off but instead of going down the cliff it goes inside the cliff. It is pitch black for a while and then we stop at what appears to be a cave. Only the walls, roof and floor of the cave are blood red and fleshy and muscly. At first we don’t notice them but eventually see lots of people stuck to one another. Their bodies are red raw and they have lash marks on their backs. One of the passengers spots a black mass on one of the recesses. “What is that?” he asks. The tour guide replies, “It’s not a that. It’s a they” and raps on the window of the carriage. The mass disperses and we see it is made up of creatures that are one third rodent, one third beetle and one third bat. Some of the creatures fly off out of the cliff; some scurry off and exit the cave through an apperture in the cliff; the others are dead and drop to the ground. The carriage returns to the top of the cliff. End of dream.
I know the message of the dream.
When he found out he was dying of pancreatic cancer, Dennis Potter named his tumour Rupert (after Murdoch). I’ve named mine too. Unfortunately I can’t tell you it’s name because of that sodding court order. It’s named after the woman Steven calls Whistler’s Mother.
My anger from 2010 had to go somewhere. A lot of it was useful. It was the fuel to fight to get Steven home. But an awful lot of it couldn’t be expressed. It would have been too dangerous to. It had to be pushed down and it became embedded. And as it made a home, I lashed myself raw. I went bat(ty).
I’ll blog again when I get back home.
It’s been 10 days since the Rightful Lives exhibition opened and I’ve been reflecting a lot on the responses to the exhibition and whether I’m being ridiculously foolish in hoping it can have any impact. We know what we were trying to achieve by stressing the “Human” and “Rights” theme of the exhibition but does it actually change anything? We’ve tried from the start to not make any grand claims about the exhibition and have genuinely seen it as “doing our bit”. But there’s a part of me that feels that for all the people doing their bit, our bits are woefully inadequate.
Yesterday the Radio 4 programme, File on 4, ran a piece reviewing the Transforming Care scheme. The programme started with Bethany singing her favourite song to her father down the telephone. It was the Bob Marley song, Three Little Birds. “Don’t worry. About a thing. Because every little things gonna be alright”. Bethany is in a seclusion room in St Andrews. She hasn’t been out of the room for 21 months. The room consists of a bed and a chair and Bethany. She is fed through a hatch. Her father is only allowed to talk to her through the hatch. We don’t know if she washes. She is clinically obese. She has had a biro embedded in her arm for three months and the hospital deem she is too dangerous to have the pen removed. Someone is paying £12k per week for this assessment and treatment.
The BBC published an article on their website to accompany the programme:
https://www.bbc.com/news/amp/uk-45652339?__twitter_impression=true
The opening sentence that the use of restraint in assessment and treatment units has shot up by 50% in the past year. I’ve seen 100s of retweets of the article and the two most common adjectives used to describe this new statistic have been “unfortunate” and “disappointing”. The usual suspects have been crying their usual cry – “This must stop”.
I’ll tell you what’s got to fucking stop.
We’ve got to stop being so fucking reasonable. It’s “unfortunate” that I’ve run out of Frosties for my breakfast. It’s “disappointing” that I’ve got to go into Uxbridge later because the cash point is out of order. We’ve got to stop mincing words. What is happening to Bethany and 1000s of others is violence. Prone restraint is an assault. The “treatment” is abuse.
Imagine if Bethany was a dog. Or a horse. Trapped in a cage 24/7 for near on two years. With a dangerous object stuck in their paw. There would be petitions all over social media. The animal’s plight would be the lead story on the national news, not stuck away in the evening on Radio 4. Paul O’Grady/Joanna Lumley/ John Nettles would be fronting a national appeal. We often say that learning disabled people are seen as “not quite human”. Perhaps it’s worse. Perhaps it’s “less than animal”.
Sorry to end this blog on a personal note. My heart went out to Bethany’s dad. I recognised myself in him. He was so bloody reasonable. Since the tumour was diagnosed in my bladder I’ve had lots of dreams and have been doing lots of meditation. One thing that keeps coming up is it’s my tumour of shame. The shame of Steven gripping onto me as visiting time came to an end and ripping my coat and how I didn’t look back as three members of staff descended on him. The shame that I left as I was asked the day another resident was smashing the place up, leaving Steven to be possibly smashed up too. The shame that I bit my tongue so often. The shame that I couldn’t be as honest as my son.
I’m having the tumour removed tomorrow. I’ve got absolutely no idea what it will take to remove the tumour of such appalling violence towards learning disabled people.
One of the most heart warming aspects of working on the Rightful Lives exhibition has been the input of our legal friends. Keen to be involved, we’ve been blown away by how much of their time and expertise they’ve been willing to give.
A few weeks ago we organised a meeting between families and lawyers to collect information that may be pertinent to a legal challenge on the grounds of human rights abuses or equality act breaches of people detained in assessment and treatment units. On Tuesday a couple of members of the Rightful Lives team met with the lawyers for an update of their thoughts having reflected upon the earlier anecdotal evidence.
I hope people will understand that at the moment it feels prudent to keep the nature of any potential legal challenge under wraps so as not to alert any organisation/body/charity that we’re on their case. However, it is fair to say, that the possible legal actions on the table are akin to a Polaris being fired off. And any legal challenge will be a collective action so that no individual will be expected to put their arse on the line.
Here is another call to arms:
For the second 7 Days of Action campaign we asked a series of basic questions about ATU experiences and the published responses proved to have one of the most powerful impacts of that campaign. The original blog is here:
https://theatuscandal.wordpress.com/2016/08/18/the-launch-why-where-how-long/
For the current legal challenge we are asking for something similar. The lawyers need as much basic evidence as possible when considering the nature of the claim.
We’d like to hear from people and families who currently have a family member detained in an ATU. We’d also like to hear from people and families where the person has been in an ATU but has since been discharged.
The information you give will not be published but will be passed onto the legal experts. It is okay if you wish to remain anonymous. If the person who is/has been detained, you should consider if they have the capacity to consent to this information being disclosed and if they lack capacity, if it’s in their best interests to supply the information.
These are the questions we would like to collect answers on:
1: Name
2: Who is the commissioning body responsible for the placement?
3: Who is the LA where the person normally lives?
4: Who is the provider of the ATU placement?
5: In a sentence, what was the reason for the admission?
6: How long has/was the person been in the ATU?
7: How far is the ATU from the person’s home?
8: In what ways do you consider the person’s human rights have been breached?
9: What are the reasons given as to why the person hasn’t been discharged?
10. If the person has been discharged, what signs are there of any ongoing trauma?
If you wish to contribute to this action, please email your evidence to: markneary@rightfullives.net .
Wow. As we say in Cowley, “By ‘eck. Thee don’t do things by ‘ arf”
I set my alarm for 6am but found myself awake by 5.30 anyway. It was Rightful Lives launch day. The exhibition encouraging visitors to reflect on the relationship between human rights and people with autism and/or learning disabilities. The exhibition has been five months in the making and the sheer creativity of the project and the contributions has been an absolute joy.
As I watched the reactions unfold, I realised I’d become almost blase. I’ve looked at every exhibit daily for several weeks and have moved from awe to comfy familiarity. Reading the feedback brought me back to the emotional impact every single one of the exhibits carries. For me, on many levels. Each exhibit is so deeply personal it moves me profoundly. I love the ordinariness as much as I love the extraordinary. To see an exhibit from a young guy with learning disabilities sitting alongside the contribution of a social worker is powerfully touching. The meeting of history with the now brings us together in a way that I’ve never experienced before. Bottom line: it’s been a stonking experience.
It’s been awesome working with Julie and Mark on the project. I’ve always been slightly envious of those close working relationships like Starsky & Hutch, Morse & Lewis, Cagney & Lacey. I feel I’ve now had that experience having worked with those two stars. We’ve laughed like drains regularly, we’ve cried and we’ve raged. Good buddies.
At 8am I had to drag myself away from the computer for my appointment with the urology consultant at the hospital. All the symptoms I presented to my GP nine weeks ago have disappeared and the CT scan found my liver clear and no sign of gall stones. However…
I’ve got a tumour in my bladder. It’s a “sizeable” tumour. They don’t know yet whether it’s malignant or benign. But fortunately the scan revealed that it hasn’t spread anywhere else. It’s location is contained and is in the dome of my bladder which the consultant described as the best place to have a tumour as it allows him easiest access come surgery.
This is the plan and I’m still bewildered by it. I go in to hospital on Friday and whilst under a general anaesthetic, the surgeon will stick a camera up my manhood to determine the state of the tumour; remove it; apply a single dose (?) of chemotherapy if the mass is malignant, and finally he’ll fit a 24 hour catheter. As long as there are no problems with the surgery and as long as I can pee properly once the catheter is removed, I’ll be discharged within 48 hours. A few days bed/sofa rest at home. And a check up after 3 months to make sure everything is okay. That’s it. Is it possible to deal with cancer quicker than it takes to shake off the common cold? I checked, double checked, triple checked that I’d heard correctly and I had. And when I got home I checked with Dr Google and what I read was a carbon copy of the consultant’s words. I guess I’ve been lucky. It’s pure coincidence that I had the CT scan for one set of symptoms that passed naturally but the scan revealed something for which I’ve had no symptoms at all.
I was back home by lunchtime and spent the rest of the day swinging between basking in the warmth of the exhibition response and blubbering on the phone as I told friends my news. I don’t feel upset any more. I don’t feel scared. I feel a sense of relief. I’ve imagined and rehearsed for the past 9 weeks being given the news that I’ve only got a short time to live so I feel I’ve got off lightly. Writing that feels bonkers – how can having a tumour mean getting off lightly! But that’s how I feel and my therapist’s specialist subject is denial so we’ll cross that bridge if we come to it.
I slid into bed just before midnight. In amongst all the love, humour, collectivity of the exhibition visitors, I saw a tweet from my anti fan. Needless to say I came in for a pasting. I cried. But it wasn’t because of her. She was just the straw that broke the stressed camel’s back. I was asleep within minutes.
And for the first time in about two years, and on the day I discovered I’ve got a bladder tumour, I didn’t need to get up during the night for a piss.
When I deliver the Get Steven Home story I’m often asked whether there has been any ongoing trauma as a result of Steven being kept away from home for a year. I tend to downplay my response as the positives of Steven’s life now far outweigh any negatives.
I’ve spent the morning with Steven and realised there is definitely a pre ATU and post ATU difference to how Steven verbalises his anxiety.
Prior to 2010 and as far back as I can remember, Steven had a catalogue of phrases that he would use in moments of anxiety or agitation. I really don’t like the term “meltdown” but the script would come out just prior to the meltdown reaching a crescendo. I learned early on that Steven expected you to repeat back to him what he had just said and then to offer some sort of reassurance that the worry he had wouldn’t actually happen. However, I also learned that whatever you said had little impact on whether the anxiety abated or escalated: that was entirely down to whether Steven could arrest the mounting agitation.
The script was incredibly familiar. “Want Robbie Williams go back to Take That”. “Want John Waterman (his favourite primary school teacher) go back to Grangewood”. “Want Richard Whiteley not be dead and go back to Countdown”. You can see the pattern here. It’s all about a loss or absence that Steven didn’t fully understand and the need for people to be in their expected, rightful place. The other thing was that none of these expressions were directly about Steven: they were about things he wanted to happen but weren’t about things directly happening to him.
For a few years after coming home, the anxiety expression couldn’t have been more direct or clear. We never heard of Messers Williams, Waterman or Whitely again but everything became “Don’t want to go back to M House. Steven Neary’s staying in the Uxbridge/Cowley house forever”. In some respects it was easier to offer reassurance on this matter, although we all know that ultimately we, as family, don’t really have the final say on where Steven lives. And Steven certainly doesn’t. So the script changed and became more Steven focused but the effect on Steven’s anxiety remained the same – only he could manage his own anxiety. It did feel that this anxiety that had existed since childhood had grown another layer that could be classified as trauma. Accidentally dropping a bowl of Frosties would get the immediate terrified reaction. “Not going back to M House?” Is that trauma?
In the last two years, the script has changed again and I think demonstrates how important Steven’s own home is to him. Enough time has now passed for the fear of a return to M House to have become less gripping. These days, the emphasis is different and Steven has a different script for different people. With Alan, he will say “Steven Neary’s not going to the police station?” With Michael, he looks for reassurance about the weekend, “Steven Neary’s doing a new tape on Saturday afternoon with Mark Neary?” With me, the focus is Thursday – “Steven Neary going to watch his dvd when he gets back from swimming on Thursday?” All of them are about seeking reassurance that life in the Cowley house will carry on just as Steven expects and wants. Today, I had to repeat the Thursday line 27 times before I left. Yesterday I only had to say it 3 times. I like Thursdays best – I don’t have to say it at all.
The first thing I noticed on my return to my flat was the DoLS form still sitting on the dining room table. (By the way, I spilled a bit of gravy on it last night. Will that prompt yet another form?) It got me pondering again how the mental capacity assessment discriminates against the very people it’s meant to be safeguarding. Steven is meant to give a cognitive explanation as to why he wants to live in his home. He is expected to demonstrate he can weigh up the pros and cons of his living situation. How he feels about it and what he intuits about it count for nothing at all. Anyone listening to him when he feels anxious can be left in no doubt how important his home is to him but that wouldn’t figure in the DoLS assessment at all. Those rules don’t apply to the rest of the world. I chose my flat because I loved the view of the canal bank from every window. I didn’t give an awful lot of time to weighing up the pros and cons of the survey results. I suspect if I was being assessed for a DoLS and I stated that I wanted to live in my flat because I love watching the barges and the ducks, my capacity might be questioned. For a learning disabled person, there is no doubt. No space for a feeling response but considerable weight given to being able to manage a tenancy.
Most people don’t really live with the fear of their home being taken from them. If you’re learning disabled it’s just another daily fear that you have to learn how to manage.
I’m humming an old tune again today. I’m sorry.
The social worker phoned me yesterday to announce that he needs to send both the Community DoLS paperwork and the latest care plan back to me as he’s had to amend one section on each and needs mine and the support workers’ signatures again. Let’s remember that they started the Community DoLS process in May 2015 and it hasn’t got to within farting distance of the court yet. The latest care plan was reviewed in April this year and still hasn’t been signed off.
The care plan hold up is because I wrote something on the last copy I signed and sent back. I took offense to the sentence, “Steven is unable to make friendships” and wrote on the form, “This is incorrect. Steven has his own definition of friendship and has many friends”. I’m glad I corrected this framing of who he is but it means the whole 12 page form has to be redone and resubmitted.
The latest hold up to the DoLS is just plain bonkers. The social worker was checking the section on Steven’s contact numbers and came across a number he didn’t recognise. It turned out it was the landline of the home we left in 2009. But he can’t tippex it out. The whole 16 page application needs to be redone and come back for me and Des and Alan to sign. Three and a half years and four social workers after the DoLS assessment started.
Two things:
I’ve written many times over the past three years that I couldn’t give a monkeys about the Community DoLS. It is a pointless exercise that says nothing and has no bearing on our life at all. I’ve tried to engage with it as little as possible. I’ve changed my tune the past few weeks. Since my health issues, I’ve worked overtime to try and secure Steven’s future after my death as best as I can. The DoLS form states several times that it is in Steven’s best interests to be living in his own home with 24 hour support. It’s the least restrictive option for his care. I agree. But I want the court to rubber stamp that. I don’t trust Hillingdon to suddenly change their mind the day after I die. I want a belt and braces approach to Steven’s future.
The second thing is the glaring reminder of the nonsense of social care and how it ties ties itself up in ridiculous knots. I have two forms sitting in front of me. The care plan describes the 24 hour support as a positive thing. It enables Steven to live a good life. This is right. However, the DoLS form sees this in a very different light and sees the 24 support as depriving Steven of his liberty. How crazy is it that one document acknowledges it gives Steven his liberty and yet the other document written by the same person determines it deprived him of his liberty?
I think the whole system lacks capacity.
