Rounding The Final DoLS Bend

I’m travelling up to Nottingham tomorrow to deliver the Get Steven Home talk for what may probably be the last time. This is the gig I’ve been to twice a year for the last seven years. It’s organised by Birmingham University and is part of their Best Interest Assessors induction course. The trainer, Wendy Silberman, always manages to book some great speakers. I’ve met Justices Baker and Eldergill there and of course it was two years ago that Wendy organised my emotional reunion with Justice Peter Jackson.

When Wendy told me the date I genuinely didn’t know whether I’d still be alive but life moves on even if we’re in the death throes of the deprivation of liberty safeguards. By the time the next course comes around in September, it’s more than likely that DoLS will have been replaced by the Liberty Protection Safeguards and Steven’s story will have passed into history. I don’t feel sad about that but I do feel sad that we might be back to square one with the pigs ear that is the LPS legislation. The fact that providers will be able to authorise a detention and that independent advocacy and scrutiny is going to be very thin on the ground leaves me terrified that 2010 could easily happen all over again but without the positive outcome. It feels like we have turned the clock back to pre Bournwood and it feels inevitable that within a few weeks of the new legislation being introduced we’ll be hearing about the 2019 incarnation of HL.

Knowing they’re coming to an end, as is my part in talking about them, I’ve been thinking back to my experiences of telling the Get Steven Home story over the past 8 years. The first gig I was booked for was the Legal Action Group conference a few months after the court case. I was invited to speak along with our barrister Amanda and our solicitor. As it happened I didn’t get a word in. I just sat at the end of the table like Exhibit A. The  solicitor had left his chambers by this point and the head of the firm came in his place and did all the talking. I didn’t get a chance to speak until the Q&A and it was a bit of a rude awakening. Sir James Munby had been the keynote speaker in the morning and he had now taken his place in the audience. Suddenly he stood up and said: “Question for Mr Neary. DoLS. A good thing or a bad thing?” I think my answer was along the lines of: “Well erm, your erm honour. Yes, Sir. DoLS erm. Haha. Yes. Thank erm you….” I did manage to say that for all the inherent problems with DoLS, they did ultimately save Steven’s life because without them we would never have gained access to the court system. Hillingdon’s actions would have remained unscrutinised and Steven would have ended up permanently in a hospital in Wales. I got a round of applause and saved that line which I still use to finish the talk on.

The bookings grew. For some reason I’m quite popular in Yorkshire and the Midlands so that started my love/hate relationship with Virgin Trains from Euston station. I did discover a taste for Aeros again on the long journey but also became reacquainted with haemorrhoids again due to their godawful seats. I’ve also stayed in some great hotels and some that would never get past the casting agent for Four In A Bed. I love the hotel opposite the station in Derby that serves the most delightful chicken in mushroom sauce dish and the coldest Guiness you’ve ever drank. I had the trip down memory lane in Cleethorpes where I ate in the same cafe that we took Steven to during our “introduction week” with him, 20 years earlier. There was the unsettling B&B in Poole with the 17 knitted mauve cats lurking in my room and the “crispy local sourced bacon” that had come in disguise as Parma ham. You’ll notice that food plays a big part of my galavanting. One day I’ll compile my list of Top 10 complimentary biscuits. The posh hotel in Manchester won’t be winning that award as after I’d finished off a pair of shortbread biscuits I noticed they came with a price tag of £5.50.

I’ve never been heckled. Not outright. There was the MCA conference in Bracknell where the psychiatrists monopolized the centre table and sat with their backs to me the whole time I spoke. Actually, that’s not quite true. They put away their laptops or stopped speaking amongst themselves about 15 minutes from the end of my talk and made a beeline for the buffet that was just opening. They returned as I was getting to the “DoLS saved Steven’s life” bit and provided a soundtrack of munching celery sticks and sucking vol au vents whilst I reached my deflated encore. Then there was the awful head of the OPG at the Court of Protection conference who did quite a performance of walking out as I was being introduced and stood talking on her phone loudly just outside the door for the duration of my turn. Inevitably there is usually someone (always male and often wearing a tie that clashes terribly with their shirt) who will pipe up during question time and say, “This isn’t really a question, more an observation……” and then keep going for so long that nobody else gets a word in edgeways.

The last couple of years I’ve experimented a bit and have often winged the talk. At the National Advocacy Conference, it seemed logical to structure the talk so the emphasis was “where was Steven’s and my voice?” There was another gig where the host was the comedian Jake Mills. I liked him and I liked his act, so decided to tell mainly the funny stories of 2010 and for the first time told the Take That and Lulu story. I know the parts of the story that make people gasp. I know when they will cry. I know when I’ll see steam coming out of their ears. But I like to make them laugh more than anything. I definitely don’t present Steven or me as a victim and I can get quite peevy with members of the audience if they frame us that way. It’s just a story. But it’s a bloody good story.

One odd development that’s happened in the past few years is that I’ve started getting requests. I think it’s because some people have heard the story before and moved on to another council where they’ve booked me again. The first time it happened I was completely thrown. I’d finished and the senior DoLS lead took the mic and said, “Mark, we’ve got five minutes to spare. Can you tell us the risk assessment folder and the balcony incident? I love that story”. I thought, “Crikey. I’ve got some greatest hits that people expect to hear”. I’d never be able to present the equivalent of an acoustic version of my set. I’d be interupted with “Hurry up with that rubbish. We’ve paid to hear you do the being thrown out of the mental capacity assessment story”.

So, it’s coming to an end. I’ve had a blast. I’ve met so many great people, some have even become really good friends. I’ve learned a huge amount about the law, the games that are played and how to shape and deliver a funny anecdote.

I don’t want to talk myself out of any future work though. DoLS may be dead but Steven’s story is just as much about the Human Rights Act as the Mental Capacity Act. I can come to your event and talk about Personal Budgets, or Building a good support team, or even the difficulties inherent of getting an accurate blood pressure reading over a turquoise safari suit.

Besides, I haven’t been to Cromer yet.

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Clearance

I feel like I can resurface. Yesterday, I had my follow up appointment with the urologist and it was great news. I was given the all clear. The biopsies showed no trace of cancer. From now on, I just need to go for two CT scans a year and a camera up the willy jobbie once a year.

I had a strange physical reaction to the news. I got home about lunchtime and couldn’t stop shivering for nearly two hours. Right through my bones. I snuggled up under the duvet on the sofa and didn’t move for hours. I couldn’t handle any noise from the TV or music. I went to bed at 8pm and didn’t wake up until 8 this morning. And today, I’ve been bursting with energy. It feels like 8 months of stress and anxiety working it’s way through.

The doctor reitterated again how lucky I’ve been. Because the tumour was located in the urachus, it helped to contain it in the one place. “Imagine a small melon in a football sock” was the image the doctor painted. It really was that big too. The doctor admitted that the mistakes they made at the first operation was that when they looked at the bladder scans, they mistook my tumour for my bladder. They were very similar in size. The whole business of fitting a second catheter didn’t need to happen. As the doctor was flicking through my file, I noticed a page with four photos on. Top right was my bladder pre operation. Top left was the tumour. There was very little difference in size. The bottom two photos were my bladder post operative, with a quarter of it cut away. Whilst we were examining the pictures, I noticed the nurse doing a mime behind the doctor’s back. She was suggesting I ask for a copy of the photos. I couldn’t think of anything worse. It’s not exactly Instagram material. I couldn’t imagine whipping a snap out at the Borough surveyor’s cheese and sausage mingle and asking, “Does anyone want to see my tumour? It’s a big one”. No. That’s one snap that won’t be going in the family album.

One thing that I’m left with is having to let go of so many unanswerable questions. How didn’t I realise the tumour was there as it had grown so large? What was that totally unrelated problem that took me to the doctor in the first place and that had cleared up by the time I went for the first scan? Who was “the assassin” who took over an hour to fit the second catheter? Was my heart attack two days later directly related to the trauma of the catheter experience? Why don’t I look good in green pyjamas? I went for a little walk up to the lock earlier and visualised me casting these questions into the water. There’s lots of things to be getting on with that I’ve put on hold for several months, so now isn’t the time to unduly ponder.

I’ve been immersed in the NHS for 8 months and have seen the very good and the very bad. I switched on my tablet this morning and the first tweet on my timeline was from one of those NHS Leader types. You know the sort – the boat rockers, the viral quality merchants. It made me think that I didn’t come across any of those Leaders whilst I was on the wards. I don’t think the stuff they bang on about even touches the lives of those working on the coalface. It seems to me that NHS Leaders and all that FAB nonsense have become a thing that exists entirely in its own self inflated bubble. Another world, completely seperate from the world of hourly observations and green flanalette pyjamas. And thank goodness that’s the case. I couldn’t imagine my lovely down to earth surgeon having much truck with counting how many apples he’s tipped from the cart this morning. And not a single member of staff I encountered would ever dream of writing on their underpants.

For the last operation, I was in hospital for 6 days. Three days in intensive care and three days on a general ward. Six floors seperated the two wards but they could have been in different hospitals on different planets. Intensive care was a very reassuring, affirming experience. Sure, I witnessed more deaths than I’d have liked but I guess that’s the nature of that word. But, my God, the staff worked so well together. There was a mutually supportive culture that at times was very moving to observe. They had their hands full with life and death situations but nothing was ever too much trouble. The patients weren’t seen as an inconvenience, stopping the smooth running of the ward. I felt totally safe.

After 3 days, I was moved up to the general ward and it was like an ascent to hell. There were good staff but there was nowhere like the cohesion of the previous ward. The lack of care made it a terrifying place to be. One night, unable to sleep, I walked up and down the corridor for about 20 minutes and didn’t see a single member of staff. An alarm was going off in one ward; a woman in a private room was screaming in pain but nobody appeared. In that atmosphere, fragile egos were given carte blanche to flourish. Within seconds of arriving on the ward, the sister took exception to the speed my bladder flush was running. Despite it being discussed on the ward round in intensive care a couple of hours earlier, she made the unilateral decision to increase the speed. It was a shock to the system in more ways than one.

The worst example of the fragile ego was with a male nightshift nurse who thought it would be great fun to publicly humiliate me two nights running. Both occasions were when I was at my most exposed, my most vulnerable. The first time he shouted at me for having a skidmark on my pyjama bottoms and the following night be scolded me for emptying my bladder bag (which another nurse had just asked me to do). What absolute prick decides to demonstrate his authority to an embarrassed audience of fellow patients after you’ve just shit yourself? The ward was full of male and female patients who all had extremely uncomfortable surgery with their waterworks. Accidents were commonplace. Walking about carrying about to burst bags of your own piss because there wasn’t enough staff to empty them. I took to carrying mine over my elbow like Mrs Thatcher. It was pitiful watching us all cling to the last remnants of our dignity and to be mocked was shameful.

The fragile egos and the pricks were in the minority though. I don’t go in for the “Nurses are angels” trope but there were some lovely examples of humanity though. The nurse in intensive care who picked me up a bacon sandwich on the way back from her break. The doctor, keenly aware of my trauma over catheters, fitted a new one in 90 seconds flat with a big grin on his face when I grabbed his arm and emotionally declared him “my absolute hero”. One of the most touching moments happened the day after the operation. The physiotherapist arrived and wanted me out of bed and off for a walk. As I gingerly navigated the ward with my drips and bladder bag, I heard a voice say “Hello Mark”. It was the nurse from the cardiac fitness group that I had been attending prior to the operation. She remembered when I was having my surgery and had taken time out of her day to pop in and see me. There were dozens of examples of that sort of thoughtful, kind care. And it makes all the difference.

What now?

Who knows?

But it feels bloody good to even be contemplating the question.

Participation

I’m so glad there isn’t someone following me around and reading my diary so they can judge that what I get up to is of some value. I don’t have a learning disability so I’m not going to be subjected to those sort of value judgements. A learning disabled person has to constantly demonstrate to the state that they are doing something meaningful whereas I can get away with living a completely meaningless life. If I want to. Measurable outcomes of care plans all hinge on a professional judging that the person has done something meaningful. Personal Budgets and the continuation of financial and personal support depend on a care planners meaning of meaningful. The consequences of a meaningless activity can turn the person’s life upside down. Care planners like learning disabled people going shopping or running round with the hoover. That adds value to their life. Meeting friends, having a music session, going to a football match can lead to dangerous territory.

Learning disabled people have to “participate” too. They can’t “do”. And they certainly “can’t do”. Their diaries are crammed with entries like “He participated in a meaningful community activity”. This probably means he went to the supermarket to buy a spatula. When Gordon Banks lined up in goal was he participating in a meaningful community activity? When the care planning pops into the post office to buy a book of stamps is she participating in a meaningful activity? If she described it in those terms, you’d think she’d lost her marbles.

On similar lines but slightly raising the value bar, a learning disabled person has to “engage” as well. It suggests a little bit more value than participating. Handing the money to the cashier for the spatula implies engagement and that scores a few bonus points. A learning disabled person can’t go to a Mental Capacity conference and switch off when they’re talking about DoLS. They have to remain engaged throughout. Engagement leads to meaningfulness. A box ticked.

Most days of the year, this isn’t a problem. But in the build up to the care plan review it becomes all important. You scour the learning disabled person’s day and erase anything that might suggest non engagement or lack of meaning. Self occupying carries a big risk even though for the rest of the year you’ve viewed it as a positive achievement. Swimming trips have to be reframed as healthy activities and singing Queen songs underwater dropped from the narrative because you don’t want to be seen as living a frivolous life. It could be the difference between retaining your support and losing it.

I’m about to sort out my socks drawer. I’m not engaging or participating in a sock stock taking activity.

Cry Freedom

I mentioned, nervously, in passing a few weeks back that I was planning on using my convalescence to write a jukebox musical. As you do.

The idea came from a collision of two events the day after I came home from hospital. I watched one of Steven’s favourite films – Sunshine on Leith. It’s a lovely little film, played with sincerity and of course a brilliant Proclaimers’ soundtrack. Later I received an email from a woman who had just finished my latest book and wanted to let me know that her favourite bits were where Steven uses songs to get his message across or to crack a joke. She particularly liked the chapter about how The Beautiful South have provided the soundtrack and language tools throughout Steven’s life. A seed was planted and it’s been growing quickly ever since.

The musical is not mine and Steven’s story. I have lifted stories from our life and the opening scene is pretty true to an event that took place in August 1995, a few weeks after we adopted Steven.

Me and Julie were sitting on the patio at a hastily arranged meeting with a psychiatrist, a social worker and a speach therapist. Steven was in a familiar position, sitting cross legged in the middle of the living room, constructing a tower out of several CDs. The tone and the content of the meeting was pretty grim. The psychiatrist was reporting back after observing Steven for an hour in his bleak office. The speach therapist had visited us at home the previous week for an hour. From the living room, I could hear Steven picking out CDs to build his tower:

“Neil Tennant and Chris Lowe.

Annie Lennox and Dave Stewart.

Andy Bell and Vince Clark.

George Michael and Andrew Ridgeley.

George Michael and Elton John.

Two George Michaels.

Craig Reid and Charlie Reid……..”

This carried on for some time. Back in the garden, a very different picture was being painted:

Psychiatrist: “From my observations, I conclude that it is likely that Steven will never be able to speak”.

Me: “But he can speak. He pointed out a tractor this morning”.

Psychiatrist: “I meant a conversation. Being able to construct a sentence. Make himself understood”.

Julie: “I can understand him….”

Psychiatrist: “I suspect you’re seeing what you want to see. Hearing what you want to hear”.

Me: “He’s talking now. Can’t you hear him?”

Psychiatrist: “It’s not relational. It’s just words. I’m sorry”.

The meeting carried on in much the same vein for a further 20 minutes. They left. After showing them out, I sat in the porch, smoking and trying to make sense of this prognosis. From the living room, I heard a sort of hissing sound. I poked my head round the door and watched Steven plug the microphone into the stereo system. He put on The Beautiful South’s first album and started singing into the Mike:

“Cry Freedom. For the woman in the wall.

Cry Freedom. Because she has no voice at all….”

I sprinted out of the front door but the professional party were driving off round the corner. And I came to my senses because I realised I hadn’t a clue what to say to them even if I managed to catch up with their car. Needless to say, I had no idea that the meeting set the tone for all future meetings over the next 24 years. One life being viewed through totally different lenses.

Despite the futility of the story, I reckon it makes for a cracking opening scene. Only another 50+ scenes to go.

The Not To Be Trusted Family

Three stories from the last three days, all with the same theme – how the State has a deep seated distrust of families.

A client arrived for her session confused and distressed. Her autistic son will be 18 in May and social services have belatedly got round to “transition planning”. My client was bewildered when the social worker announced that when the son hits 18, “I will be making all the decisions in his life”. This had never occurred to my client before and she was left shaking with fear over what this might entail. The social worker said that  she wanted to see a monthly spreadsheet breaking down every penny that my client spent of her son’s money. “I don’t understand what I’ve done to be so distrusted”. I tried to reassure her that this wasn’t personal and that it said more about the exercise of power than distrust but she wasn’t convinced. How could she be? It’s such a shock to the system when you meet a transition social worker for the first time. My client had never heard of the Mental Capacity Act before and felt extremely threatened to hear the transition manager say, “You don’t want to be accused of breaking the law do you?”

A great social media friend received a visit from the Court of Protection visitor the other day. She receives no State support and is the 24/7 carer for her son. He likes nothing more than to have a daily bet on the horses. He is able to go through the paper and pick out his horses but can’t quite manage the process of placing the bet. His mum does that for him. The Visitor didn’t like this. It wasn’t clear whether she was objecting to an autistic man having a flutter but she insisted the mother kept tighter records of the money she withdraws for the betting. No direct accusations of mismanagement but understandably my friend felt soiled by the tone of the encounter.

To complete the hattrick, I received an email from the Office of the Public Guardian. Because of my operation, I’d submitted Steven’s annual deputy audit report a week early. The good news is that the report has been signed off and there is nothing more I need to do. However, in the “Changes” section of the report I’d mentioned something that hasn’t gone down at all well. Just before my first operation last October, I changed all the bank accounts (Mine, Steven’s and the Direct Payment account) into joint accounts with my sister as the second account holder. This was a precautionary move in case something happened to me and in light of my heart attack four days after the operation, it felt in hindsight to be a wise move. Without a second person being able to step in the fundamentals of Steven’s life would be at risk and the worst possible outcome (Back to an ATU) loomed large. How would he be able to pay for his weekly shopping and bills? How would the support workers get paid? With my sister as a second signatory, should I not survive the operation, Steven’s practical life could carry on fairly seemlessly.

During my recent operation which involved a longer stay in hospital, this precautionary arrangement with the accounts proved useful. I booked Steven’s online shopping in advance and set up transfers for the support workers’ wages. However, I needed to rely on my sister to draw out Steven’s weekly money for his transport and his trips out to buy a strawberry milkshake and the Radio Times. It’s the sort of thing that families do for each other during times of upheavel. It comes from a place of love and duty. The OPG doesn’t like this though and I was told in no uncertain terms in the email that as my sister is not Steven’s official deputy, she shouldn’t have access to his bank account. Never mind that this was a temporary measure whilst I had an operation for cancer. Never mind that his life would have come to a dangerous grinding halt without this intervention. Deputy rules are rules. It was always my intention to apply to add my sister as a joint and several deputy at some point soon. I haven’t got round to it yet partly because I’m resentful of having to use another £400 of Steven’s money for the priviledge.

There’s the rub. Putting on a bet or buying a strawberry milkshake runs the risk of accusations of financial abuse. Before you know it, you can find yourself subject to a safeguarding investigation. But it is prefectly okay for the State to take £400 off the disabled person in the name of protecting them from family financial abuse. My client lives a very hand to mouth existence and neither she nor her son could afford the court fees. She is terrified of where this is all heading because she has had an alarming introduction to where the power lies.

For the week I was in hospital, I didn’t hear from a professional soul about whether I needed their input. I didn’t want or need it but nobody was interested in Steven’s care for the duration of my absence. They must have assumed that I had put plans in place and whether those plans broke the OPG rules were irrelevent, even if they occurred to anyone.

Whilst I’m having a moan, something in a similar vein also came up last week. I received an email from someone who works as a self advocate and had just finished reading my latest book. She was critical of some of the things I do for him and my chapter about buying Steven Paul Heaton’s recent CD prompted this – “Why do you not let him find things out for himself? Why don’t you engage an advocate to help him discover new things? Why does it always have to be you?” I started to type a response, along the lines that Steven would never find out that the album existed without external input and it would take someone who cared enough and knew enough about his likes and dislikes to even begin to go looking for stuff he might like. Then I got cross when I realised I was justifying a perfectly normal act of love. I didn’t send a reply.

But it reminded me once again that nobody gets judged more than a learning disabled person and their family. It is seen as perfectly okay for the world and his wife to express an opinion on every aspect of the family life and that the normal “rules” of human engagement count for nought when judging the life of a family with a learning disabled member. Suspicion becomes the norm and is so easily legitamised.

Basically, it’s another prominent factor in turning the learning disabled person and by association, their family into being not human.

And we all know where that leads.