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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.

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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.

A Hole & A Scar

The word that keeps coming up for me since the operation is “released”. I’ve been released from something.

The doctors have all been of the belief that the tumour had been present in my urachus for several years. Of course, nobody can put an actual timescale on its growth but my sense is that it’s been there since 2010. I named the tumour D****, after the social worker from 2010 and part of the release is that I feel a huge part of her legacy from that awful experience has now been exorcised.

Yesterday I had the staples removed and last night I was able to have my first bath in a fortnight. I laid there for ages with a flannel gently massaging the scar and a whole kaleidoscope of memories swirled around the bubbles.

I remembered all the times in 2010 I had to be completely inauthentic in order to survive the wrath of the LA. I recalled having to dilute myself in meetings to try and guarantee Steven’s safety. I recalled having to present a tiny, miniscule version of myself because anything larger was far too threatening. And then there were the odd occasions when I was totally authentic and how dire the consequences were for Steven. There were two occasions in meetings when I spontaneously laughed at the ridiculousness of what I was hearing and realising instantly from the reactions that I had just knifed them through the heart. Then there was the time I launched into a long speech about the several ways they were breaking the law but immediately saw that I was making a huge mistake in making such a huge, articulate challenge. The price that both Steven and I paid for my congruence was dire.

I dabbed myself dry after the bath and realised under the scar feels very different. There is a hole. A space that had been filled by the tumour of inauthenticity. I’ve been released of it and I’m buggared if I’m going to let it grow back.

I haven’t taken leave of my senses. I’ve still got to deal with the LA in the future and know that truth is very problematic for them. Tactics are necessary for survival and to prevent revenge attacks and it will be appropriate to present a Neary lite version of me at times. My mission now is to work out how to do that without turning myself into a character from Lilliput. The good news is that I don’t have to deal with the 2010 gang anymore so there is less chance of old stuff being reactivated.

The other question I’ve asked myself is how much I’ve been feeding the tumour. Obviously there has been painful shit to work through and some of the scars will never go completely. I still yearn for five minutes in a room with Whistler’s Mother, especially if that room is a conservatory and I have a candlestick in my hand. She tried to destroy my beautiful, trusting son and revenge is never too far away. But is that feeding the cancer?

At the moment, I can’t imagine ever telling the Get Steven Home story publicly again. It feels like that motivation came out during the operation too. And let’s face it, the Deprivation of Liberty Safeguards are shortly going to be replaced by the Liberty Protection Safeguards, so it’s an irrelevant story anyway. As all relevant stories should, we’ve become a museum piece and that’s fine with me. I’ve got this large internal space where the urachus and the tumour once homed and that space is mirrored externally – what do I write and talk about now?

My apologies if this all reads as self indulgent bollocks. That’s my point. I’ve come to see myself as a writer and a speaker and I no longer have a clue what to write or speak about. Please bear with me whilst I experiment in filling the new space.

I still keep wrestling with the idea of writing a very black comedy. It would take the Committee Room Five stories into an area that would shock even Deidre Trussell. I fancy writing a fiction based on all those fascinating stories I uncovered whilst researching my family tree. I speculate whether I could ever carry off a stand up routine. Is the world ready for some Squatty poetry? Or do I carry on writing about the stuff I’ve always written about. Writing this blog has never felt like a component of the tumour.

The answer, I guess, has been the mantra of the past six months – who the fuck knows where this is heading so just experience the ride.

No Time To Waste.

I’m home from the surgery. The brief headlines of the experience are that I am now minus a quarter of my bladder, my urachus, my belly button and most importantly, the tumour, which one of the surgeons described as the size of a small melon. I won’t know until the biopsy results are back in a couple of weeks if I’m now clear of cancer but the consultant seems engagingly upbeat about how the procedure went and the future.

I can’t write much more about the experience. So much has happened in the past seven days that I’m not sure I’ll ever truly get my head round everything. There were moments of awesome inspiration. But there were also moments so disturbing or degrading or frightening that I don’t think I can write about them. They are too unbearably private. The marked differences between the two wards was just one of the disturbing aspects. The first two days when I was in intensive care felt safe and compassionate. There were lots of deaths to witness and although my health felt more stable than most of the patients there, I still had to accept there was a good reason for being in ICU. On the third day I was moved to a general ward and the mood was completely different. Frankly, I was terrified and felt very unsafe. One night, unable to sleep, I spent an hour walking up and down the corridor and didn’t see a single member of staff during the entire promenade. Alarms were going off. A female patient was screaming the ward down but we were totally alone. I couldn’t wait to get away.

I’ve had a lot of time to think. I’m trying to learn who I am now. There were lots of messages that went way beyond just little old me and I thought a lot about the world of learning disability and my roles and responsibilities in the future. One thing happened during the second day in Intensive Care. I had been following Sara Ryan’s life tweeting of the Human Rights Committee gathering with the NHSE and CQC top dogs. It was depressing reading. As one MP despaired, “They’re just talking gobbledygook and theory”. I was interupted when a physiotherapist arrived, wanting to take me for my first post operation walk. When we got back my 1:1 nurse had changed my sheets. A few minutes later the nurse realised she’d misplaced her watch and during the ensuing search she even went through the waste bag with my dirty sheets in. I was back laying down and resumed following Sara’s tweets and saw a large message appear before me – No Time To Waste. (By the way, the watch was eventually found. She’d left it in my newly made bed and I was sitting on it). Learning disabilities is attracting a lot of press and media attention and we’ve got to make these precious openings count. And firstly we have to know who is of use. I’d say people fall broadly into three categories: the allies, the completely ineffectives and the enemies. The allies come in all shapes and sizes but to me, they are obvious. Ian Birrell who has published an article every week for the past few weeks. Jayne McCubbin and her relentless, human reporting on BBC breakfast. People like George Julian who do goundbreaking work without resorting to trumpets. And even quieter in the background, folk like Kate Mercer, Sam Sly and several others who just get it and get on with the job. They make a contribution and by heck, do they make a difference.

I don’t believe there are many out and out enemies. Most of the harm done is by people doing nothing. Keeping quiet even when their job depends on them doing otherwise. But we must spot the enemies and at least keep our third eyes on them to watch what they’re up to.

The biggest group is the ineffectives. Talkers, not walkers. I feel very strongly that we need to disengage with them. If there is no time to lose, these people use precious energy and that is unnecessarily costly. You don’t have to feel bad about disengaging. The ineffectives will always find someone to engage with. It just doesn’t have to be you. One note of caution is that some people by virtue of their position may appear ineffective but are actually in the harmful category. Watching Ray James give evidence to the Human Rights Committee, he came across about as useful as a fart in a paper bag. But when you remember that he is head of learning disability for NHS England, his ineffectiveness is shameful. By not doing his job from a position of great power, he can be seen as an enemy rather than an ineffective.

The most I slept each night in hospital was two hours. Partly because of the noise, lights and constant interruptions. Partly because of the terror of feeling so unsafe. Last night, back home, I slept for over ten hours. I had a short snippet of a dream that seems to fit in with this post. In the dream, a group of families and people with learning disabilities were going on an old fashioned charabanc day trip to the seaside. Late afternoon some of us meet up in a pub for a relaxing get together. A drink, a chat and possibly for the daring, a game of bingo. The group were purloined in the pub by a well known social media commentator trying to engage us in a discussion on the potential of personal budgets. Somebody put some Style Council on the jukebox for a singsong but this guy droned on and eventually we all gave up and joined in with his agenda. It couldn’t have been a more ineffective use of our time.

Allies – come on board. Ineffectives – sod off on some other trip please.

The Last Institutions?

I’ve been thinking about the UK’s great love affair with institutions. Large or small, although we used to prefer them the larger the better. Different types of institutions but generally designed to meet the same principle – anything we don’t like seeing on the outside, send them in so we don’t have to unsettled ourselves by a daily encounter.

I was watching the Robert Rinder episode of Who Do You Think You Are. He was looking into the history of his great grandfather who came to London from Latvia at the age of 19 already traumatised by early experiences of unrest in his homeland. By the age of 29 and by now married with a few children, he was admitted to Frimwell Green lunatic asylum. The admission notes presented to Robert clearly showed his great grandfather suffered from what we would now call paranoid schizophrenia. He remained in the asylum for the rest of his life, dying 14 years later at the age of 43. The case notes in his last years became fewer and fewer and Robert sadly realised that the world gave up on him. The family had long stopped talking about him and the hospital had lost any interest in treating him, beyond a barren containment.

This story reminded me of my maternal great grandfather’s X 2 story. William Worley was born in 1800 and his life took a turn for the worse in 1833 when his young 29 year old wife died, shortly after the birth of their seventh child. One by one the children were taken in by various neighbours in the village as William turned to crime, presumably to support his family. He was out of prison by the mid 1850s but leading a solitary life until he was admitted to the Amersham Union workhouse in 1857. He lived there until he died in 1873. 16 years in such a wretched institution. They weren’t designed for such long periods of habitation (placement?) so one is left wondering how he came to be there for so long. A workhouse is different from an asylum although the Amersham workhouse seemed to have a wide clientele. William was classified as a “pauper” but James in the next bed to him was recorded as an “idiot”. Perhaps what they had uncommon was their unsavouriness to the sensitive Victorian eye and therefore had to be kept out of sight. Time became immaterial. The institutions were about containment rather than treatment or rehabilitation.

The Neary family had two further brushes with institutions in the 1950s and 1960s. My two cousins spent their childhood in the Margate residential school for the deaf. My Uncle Frank, who I’m pretty sure had a learning disability, spent the last two years of his life in Derby’s asylum from 1953 to 1955. Looking at the publicity material of both places from that time neither of them saw themselves as institutions, certainly not in the negative way asylums and workhouses had begun to be viewed. Spin was a less sophisticated affair back them but it’s pretty clear that both Margate and Derby believed they were providing a very positive service. The benefits tended to focus on the physical but nonetheless the general message was, “This is a good place for you. You’ll be better off here than anywhere else”.

On a side note, I’ve always wondered how Uncle Frank ended up in Derby, so far from his home in Southall. Now we know from 2018 experiences that placing someone 100s of miles from their home is commonplace but why Derby? The other day I discovered that two of the founders of the Derby asylum were previously superintendents at St Bernards Asylum. In Southall. It’s possible that Uncle Frank was known to them from their work at St Bernards and when they needed patients for this top of the new range facility, they traded in people from their old stomping ground.

Workhouses and asylums have long gone. But in the shape of assessment and treatment units, the nation’s attraction to institutions continues. Are ATUs the last vestiges of a particular British preference? Are we in the last knockings of that feature from the shadow of the British psyche – repulsion of disability and the disabled? Frankly, the Victorians were repulsed by pretty much everything so it’s not surprising that instititutions became so popular. Nowadays we are meant to be all inclusive with a warm empathy to the “unseemlier” members of our society. We’re not of course. The only thing that’s happened is for that repulsion to be pushed deeper into the unconscious shadows but it can’t suddenly disappear.  It’s got to go somewhere. We’ve got to hang on to something to project the worst of our disability intolerance on to. ATUs serve a very useful purpose on that score.

1873, 1953 or 2018? Everything has changed. And nothing has changed.