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Above My Station

This morning I read a lovely piece by Ermintrude, reflecting on her ambition and her relationship with leadership. Like all her writing, it’s straightforward, honest and full of humility. And like all good writing, it’s had me preoccupied all morning reflecting on where I stand on the themes the piece raises.

As a kid, I received mixed messages about ambition. On the one hand, my parents, like many of their generation were all too familiar with thwarted ambition and encouraged me to follow through on anything I showed an interest in. They didn’t let the constraints they experienced growing up during the war colour their attitude to the opportunities that were open to me. They were very aware though of their place in the social order which led to the mixed messages. Any success for me was always grounded with “We don’t want you getting ideas above your station” and being caught out “blowing your own trumpet” carried deep shame, especially if your trumpet blowing was witnessed publicly. I used to love appearing in the school plays but I could see my parents in the second row switch from heartfelt pride to deep felt embarrassment when the applause started. It wasn’t that big a deal though – far more doors were opened than remained closed.

My first job after leaving school was with Nat West Bank. Goodness knows how I ended up in a bank. Lots of my peers from school found themselves against their better nature in a bank. I think the careers master was on a commission. It was generally accepted that in your first year as a junior bank clerk you were expected to do all the menial jobs in the machine room and when the new cohort started the following year, you could start doing one of the more specialist jobs. This was 1977/78 and there was a strange attitude that there were “men’s jobs” and there were “women’s jobs” and never the twain should meet. I never understood what differentiated one from the other. For example, men were given the standing orders clerk role whilst the women did the opening of new accounts. I was no rebel, just eager to try everything and so pushed back against this odd stereotyping and in my second year had a bash at both the men’s and women’s jobs. One other attitude was just plain offensive. It was 40 years ago but came straight from another century. I worked in the Southall branch and there were several Asian women working there. The manager decided that their real names were too difficult to pronounce and gave them all English names. I’m not kidding. Paramjeet and Anooka became Pam and Annie. I couldn’t do it but it set up several collisions because the women themselves generally accepted the manager’s insult. My time at the bank ended unceremoniously. I came back from my August holiday with my ear pierced. The assistant manager called me into his office and informed me that the customers would be offended by my piercing (it was only a stud). “Let’s face it Mark. For the last two years we’ve been trying to fit your square peg into a round hole”. At the time my great ambition was to be a super cool Mod rather than a super cool standing orders clerk, so we went our separate ways.

From there, I joined the Civil Service, namely the DHSS. Their dress code was astonishingly lax compared to the bank. In 1979, I wouldn’t have been seen dead not wearing my tonic suit and tassle brogues, so still stuck out like a sore thumb for the opposite reasons to Nat West. On my very first day, I encountered the bizarre hierarchical structures that exist within the civil service. There were four of us who started on the same day and we were allocated a bank of desks just inside the door of a huge open plan office. This was to be our home for the 13 weeks of our induction period. We were given a huge pile of manuals that we were expected to work through. Coming back from lunch that first day, I discovered my chair had gone missing. The training manager came out of her room carrying a new chair. She was very apologetic and told me that I’d been allocated the wrong chair that morning – “EOs can have chairs with arms. COs have armless chairs”. Neither me, nor my fellow newcomers had realised we were different grades. They were all EOs (Executive Officers). I was one ring down the ladder – a Clerical Officer and a chair with arms is a chair above my station. There were no men’s and women’s jobs within the DHSS and I was still eager to try everything. I did my six months on the front desk, did six months visiting pensioners in their homes helping them review their claims. It was great fun. I did buy into the hierarchical structure and twice applied unsuccessfully for promotion to a chair with arms. They let me “act up” for 18 months but my eventual rise to permanent EO came about rather oddly. I was having my annual appraisal and my manager announced that he was recommending me for promotion. I asked him what I’d done differently and he told me that he was having his tea break in the rest room whilst I was directing a rehearsal of the staff Christmas show! “You convinced me you have the necessary leadership qualities”. It was the first time I’d heard the word “leadership” mentioned. It was bollocks of course. I wasn’t leading the cast: I just knew how to deliver a funny line.

Next stop career wise was a local authority. If I’d been ambitious, I was in the wrong job. Whereas in the civil service you can move between the DHSS and the Home Office for example, in a local council you can’t even move from housing benefit to town planning within the same council. It’s a very limiting ladder. After three years, I applied and got the job as Training Manager. It was a higher grade and more money but that wasn’t the motivation. I was challenging myself but my instinct was that I would be good at it. And as the DHSS Christmas shows had shown, I do like playing to an audience. I quickly learned that it was a job that really suited me. Being responsible for everyone’s induction training, I realised that I could have a huge influence over how people did their job without the power or responsibility of being a manager. I know that “manager” was in my job title but that said more about the council’s propensity to self importance than it said about what I actually did. This was 1988 and I suppose was the start of what is now endemic within councils – everyone is a manager. As the years passed my role expanded and I was able to run courses on personal and professional development. I even ran several “leadership” courses. The staff liked them: the management less so. Their ideas about leadership were very different to mine.

Nowadays leaders are expected to announce what makes them great leaders to the world. There’s a doctor on Twitter who bursts uninvited to any thread to announce his leadership credentials and why his ways work. I find him very funny but he is deadly serious. You cannot be a 2018 leader if you don’t tell the world what you’re passionate about. No Leader’s Twitter profile is complete without a cacophony of trumpets announcing that you’re passionate about this, that or the other. Back in 1998, the audience for your pompous vanity was much smaller. I recall sitting in check in during my counselling diploma training. The peacocks quickly learn that check in an opportunity to strut your stuff, show you’ve mastered the lingo and score several points at your peer’s expense. On this particular day, one of my peers made this astonishing claim: ” I’ve been processing my process and discovered that I am able to give 100% unconditional positive regard to every person in my life”. In the ensuing silence, you could see everyone else’s unconditional positive regard go for a burton as 29 checkmated counselling students wrestled with the same thought, “Oh for goodness sake. Shut the fuck up”. It’s not enough anymore to have ambitions or to achieve your ambitions. Now you need your achievements and ambitions witnessed and validated by the entire world. My parents would be bewildered.

Ermintrude’s post focused on work and I have followed the same. The older I get though, I find I haven’t changed much at all from that eager junior clerk except that my ambitions and challenges are likely to lie elsewhere other than work. This year, I’ve been fiercely motivated around my weight training. Last week I decided to try and write a farce. The challenge in plotting a farce is enormous and I’m loving every minute of it. I’m often asked to take on writing/speaking/advocacy projects and my criteria for acceptance is very different from how it might have been 25 years ago. Nowadays I’ll take on stuff if it’s going to be good fun and/or I’ll learn something from the experience. That’s my criteria.

And I still have no wish to be a leader. Horses for courses.

Having written this post, I’m not sure how much it’s got to do with Ermintrude’s piece from earlier. I think I’ve just rambled on trying to find reasons why I’ve shied away from being a leader. But I also feel that ambition is in the eye of the beholder and never needs justification. My favourite part of my job is when I get my clients on to their interests and what they can do to make their life more fulfilling. Every response is totally unique and often comes as a surprise to the person who’s mouth the words have just left. Whatever they come up with, it rarely involves climbing up the career ladder.

View story at Medium.com

View story at Medium.com

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Collector’s Items

The other day I wrote about Jack Moore and how he’s ended up with a criminal record when the real criminals, Cedar House management, got off Scott free for providing such poor staffing levels they must be breaching the patient’s human rights.

I mentioned Jack’s contribution to the Rightful Lives exhibition and I was looking through his photos again this morning. As I said in the first post, I’m not going to spoil the surprise but basically it’s a series of photos of Jack’s collection of ??? It’s a totally unique collection and Jack has converted his whole bedroom at home to house and display his collection.

It’s got me thinking about the nature of collections and how important they can be in our lives. At Steven’s yesterday, I watched him going through his photo albums. Before he started going through them individually he stood by the shelves and gently stroked the spines of each one. It was like a loving caress. He eventually settled on one that doesn’t include him. It’s the one that has all the black and white photos of my childhood and is populated by relatives that were long gone before Steven arrived. He knows who they all are of course but he has no personal memories of many of the cast. Nevertheless a photo (probably circa 1964) of me and my mum standing outside a sentry booth at Windsor Castle had him purring with contentment. He does the same thing with his CD collection. He pulls up a dining table chair to the CD player and after much deliberation and caressing, takes out a CD. He then can spend up to half an hour looking through the sleeve and may not get round to putting the CD on. The whole performance is accompanied with regular sighs and sounds of deep pleasure.

I am the same. Last night I did a little experiment. My theory is that our collections take us back to a time when our world’s felt safer. The bigger the collection, the bigger the illusory comfort blanket. I went to my collection of Southall FC programmes from the 1970s and in the way a magician says “pick a card, any card”, picked out a random programme. I made a powerful selection. It was a cup game Vs Dulwich Hamlet from the day after my 17th birthday in 1976. Now this wasn’t a safe time in my life at all. Seven weeks earlier my mum had died and at the time felt like the most precarious point of my life. I read the programme cover to cover. The league table with names I’ve long forgotten: Lewes, Epsom & Ewell. The team sheet was always on the back cover and one name set me off into a Steven like purr. Junior Cressford Jones. He had joined the club recently following the sale of Alan Devonshire to West Ham. He could have been as good as Devonshire but he was a belligerent bastard. Always getting sent off or in what was unheard of back in 1976, trying to get others sent off. One slight touch and he’d be rolling around the pitch screaming. It wasn’t a becoming sight. Anyway, there was something about seeing that name and having my entire programme collection around me that made everything right in my world again. I’m still ill and without a diagnosis. I’ve still got the same hang ups that I had before selecting that programme but suddenly, my world felt more manageable again. Perhaps unconsciously I was reminded of the strength I’ve built up since 1976. Who knows. Who cares. It did the trick.

I also think collections represent anchors. And if we don’t have anchors we’re all at sea. I’ve got the entire collection of Agatha Christies on my bookshelf. I haven’t read any of them for years but it’s important to me to know they’re there. Whenever I dust them my mind goes back to the first one I ever brought. It was 1984 on the platform at Reading station enroute to a holiday in Paignton. I nipped into WH Smith’s to find something to read on the train. The publishers had just reissued The Murder of Roger Ackroyd and there was a display of them just inside the door. That particular novel is considered one of the top three books Christie ever wrote, so it was a good introduction to her canon. In the space of three years I’d purchased the entire set. I’m a bit manic when I start collecting a set of something. I’m never entirely happy until the whole set is complete so I go completely overboard and nearly bankrupt myself in a couple of months.

I hardly ever look at my collections. But I like to know they’re there.

Coming full circle back to Jack, I wonder if any of the professionals consider what it must be like to be deprived of your anchors for years at a time. You cannot find new anchors in an ATU, the set up doesn’t lend itself to such valuable things. In fact, when Steven was away, the management we’re proud that they’d removed all his anchors claiming he needed to be broken down as part of the “treatment”. I know that when he came home he immediately put back all the anchors he had before his detention. But it was a long, laborious and painful process for him to trust those anchors again. My fear for Jack is that he has been away from his collection for so long now, it will cease to have the properties it once had. But perhaps I’m undermining Jack. He’s built of very strong stock.

I’ve got a free afternoon today. I’ll phone the hospital for an update after lunch and then I’m going to work my way through my collection of Just A Minute CDs.

And I can promise in advance, whatever the outcome of the phone call,  that I will purr like a good ”un when I hear Kenneth Williams complain to Nicholas Parsons, “I’ve come all the way from Great Portland Street”.

“You’re Not On The ERS System”

The year that Steven was in the ATU, I had a really good commentary dream. It helped me enormously throughout the year make some sort of sense of the hideous system. In the dream, I was in the audience watching a grotesque Shakespearian parody. All the actors are standing on slightly raised circular platforms that are spinning dangerously out of control. As the platforms speed up, the actors become madder and madder but for some reason they can’t get off. I go under the stage to investigate and there are a series of badly designed and even more badly connected huge Heath Robinson like machines. I’m no engineer but even I can see that it is the poor design and faulty connections that is causing the serious system malfunction. One thing is for sure, I know that whatever I do, I must not get on the stage.

Yesterday morning I decided to chase up my hospital appointment. I haven’t heard anything and it is seven days since my GP told me he was doing an urgent referral. I phoned the hospital first but they knew nothing about me. They told me to phone the GP and get more information about the referral. I did and was given the email address the referral was sent to. They also gave me a 25 digit booking reference number. I phoned the hospital back and the woman said, “Ah. That’s why you haven’t heard anything. They didn’t send it via the ERS system”. “What does that mean?” I asked. “That email wouldn’t even be looked at. We’re a paperless system now. All referrals must be made via the ERS system”. I wanted to scream at her – “I don’t care whether it’s an ERS or a STFU system. I just want to know whether I’m dying of cancer”. After an hour of me having to go backwards and forwards between the surgery and the hospital it eventually got sorted and I’m waiting for a phone call today with an appointment for a CT scan. It’s as stark as that. My life and/or death coming secondary to computer systems that can’t talk to each other.

Let’s face it. This stuff is endemic now and we waste enormous amounts of energy trying to navigate the malfunctioning machine. Accept a Personal Budget and you automatically become an employer and have to deal with HMRC. In five years, I’ve never once spoken automatically to the person I need to speak to. Phone the generic number for the employer’s helpline and you land in a call centre in Scotland. It’s undoubtedly been outsourced to a Capita, or an Artist, or a Blowjobsforthehedgefundmanagers sort of set up. I’ve not spoken to one person on the helpline that know the Dedicated Carers team exists. Worse, they infer you’re making it up. I guess that passing a call on to another team damages their performance targets. This Kafkaesque dance is replicated to a T if you ever need to contact the Department of Work and Pensions. A few months back I had to phone the council to sort out a mix up between Steven’s updated care assessment and his direct payments. Complete stalemate because two systems, albeit both connected to social care, couldn’t communicate with each other. And I knew for a fact that the two officers I was talking to sit about 100 yards apart in the open plan Civic Centre offices.

One last example. Yesterday Sara Ryan tweeted the latest social care whizzy idea that everyone needing services gets a “named social worker”. Have we become so trapped on the spinning platforms that is considered a great innovation? 10, or 15 years ago, everyone needing social care had a social worker you saw fairly regularly. You were part of their caseload. Now, in these days of duty teams and hot desking, a one to one relationship is considered revolutionary. It’s complete cosmetic bollocks, designed to make you grateful that you’re getting something special. Out of the ordinary.

Since I fell ill, I’ve been toying with the idea of writing something different. I’m a bit weary of mining my life for material. I fancy a bit more privacy. I’ve played with the idea of a whodunnit and even have a plot I quite like. Whatever I write, it will be set in area that I’m familiar with. Last night, I fell into a YouTube wormhole and found a clip of John Cleese discussing farce. I’ve always loved the manic nature of a good farce. I like how it can make the audience fall about laughing whilst feeling deeply uncomfortable at the same time. Cleese was talking about The Anniversary episode of Fawlty Towers. It’s my favourite episode and in my opinion is sublime farce. It’s the one where Sybil goes off in a huff just before some friends are due to arrive for a surprise party. Basil, being Basil, starts with the lie that Sybil is upstairs ill in bed and the farce builds as he cannot back down from that lie. By the end, the farce is so perilous that even the normally unflappable, feet on the ground Polly punches one of the guests in desperation. It’s a work of genius and as Cleese explains, all farce starts with a lie and builds because the protagonist believes they have to defend that lie at all costs.

Social care and all our malfunctioning systems are ripe ground for farce. A dirty great black Joe Orton of a farce.

I’m on to it. I wonder if they’ll let me take a notebook and pen into the CT scan with me?

Standing With Jack

I’ve never met Jack Moore but, by golly, I love that guy. I first heard about Jack during last year’s 7 Days of Action campaign and my admiration for him grows with every story I hear about this stoic young man. In a few week’s time you’ll all see Jack’s contribution to the Rightful Lives online exhibition. I’m not going to give the game away but when you see his exhibit, it’ll break your heart and have you doing fist pumps simultaneously. He’s a truly wonderful chap.

This morning the press reported on a court case Jack was involved in last week. I suggest you read the report before proceeding with this post:

https://www.kentlive.news/news/kent-news/autistic-patient-punched-staff-nurse-1865703.amp?__twitter_impression=true

Cedar House again. That hellhole where you can go for six months assessment and be imprisoned for 10 years. The same place where Jason died last year after swallowing batteries which Cedar House tried to pass off as “natural causes”. Here is my post about Jason’s death:

https://markneary1dotcom1.wordpress.com/2018/05/29/jason/

I don’t know what evidence was presented in court to arrive at Jack’s guilty verdict but I think some context is important that was missing from the newspaper report.

Jack and Jason were mates. They had shared time on the same wards and had discovered things in common. In a move that reeks of Southern Health banning baths for all residents after Connor Sparrowhawk’s death, Cedar House’s immediate response to Jason’s death was to remove all patient’s possessions that used batteries. I learned a couple of weeks ago that they confiscated a patient’s hearing aid for several weeks because it was run by a battery. Jack’s MP3 player is very important to him. He loves music and it also proves to be extremely useful when Jack is feeling agitated as a way of calming him down. But no, it needed a battery so was taken off him just a short while after his friend had  died in the most appalling manner. I’m pretty sure that it is the MP3 player that is indirectly referred to in the newspaper report but its importance isn’t emphasised.

The ward was clearly in chaos. It was in “lockdown”. I’d consider that unsurprising when all the patients had seen their valuable, coping possessions removed. But without the background, it’s easy to assume that it’s those complex needs non humans running havoc.

The report also includes very differing statements about the staffing levels on the wards. In her victim statement, the member of staff who was hit doesn’t mention Jack at all but devotes her attention to the dangerously low staffing levels. And from her statement it’s clear that this wasn’t a one off on that particular day but a regular, repeated pattern across the company. The management, in their statement, diss the victim statement and insist there was a full staff compliment. I know who I believe. I’ve heard from two other people with insider knowledge of Cedar House and extremely low staff levels are a common occurrence.

Why doesn’t anyone join the dots? The CQC? The commissioners who are sending people to their doom? NHS England? There are mountains of evidence that Cedar House is an unsafe, dangerous place whose main motivation is the £8k they receive each week for each patient.

One last thing and I was almost tempted not to mention it because it has become so commonplace – the report plunges into that deeply offensive void again – the difficult world of learning disabilities. Jack’s “complex needs” are used as the trump card to get Cedar House off the hook. It doesn’t matter that it’s a specialist service. It doesn’t matter that it boasts a staff team, trained and qualified to deal with anything. It doesn’t matter that they earn an absolute fortune every week for their “expertise”. None of that even matters when you want to turn one of your patients into the villian of the piece; the agent of his own downfall. It stinks.

It’s become a common mantra during the inquests of Danny Tozer and Richard Handley. It came up during the GMC hearing of Dr Valerie Murphy, the responsible clinician for Connor Sparrowhawk.

He died? Yes, but he did have complex needs. Oh, that’s okay then.

His records show he is subject to prone restraint on a daily basis? Yes, but he’s got extremely complex needs. Oh, that’s okay then.

Cedar House will continue to grow and grow. The shareholders need their dividends so our sons and daughters will continue to be fed into its machine.

Hang in there Jack. You’ve got a lot of life to catch up on. But you will. You’ve got too much spirit not to.

Four Days

Four days ago this was going to be a very different kind of post. Four days ago I was told by a doctor to prepare myself for my imminent death. Four days on I know that I’m not out of the woods and there could still  be something very serious going on but I do feel able to come up for air.

I’ve been going downhill fast ever since my short break in Torquay. The second evening there I was watching the World Cup semi final in my room and in the space of half an hour went from feeling dizzy, to extremely nauseas, to the most painful stomach cramps to an hour on the toilet where my arse exploded. All this whilst absolutely drenched in sweat. It sounds daft but I had a ready explanation – after a year of very healthy eating I’d had two days of cream teas, chips, cooked breakfasts, beer and ice creams. The next morning the stomach still felt dodgy and I had no appetite but I felt fit and still did an hour in the gym followed by a morning in the pool.

This has become the almost permanent state for the past two weeks. The stomach has felt fine when I wake up and during the morning Ive felt ravenously hungry but come mid afternoon the pain takes hold so come evening I’ve been climbing the walls. My pee looks like Lucozade and my stools have become huge but with all the colour drained out of them. Despite all this I’ve still had plenty of energy and have been to the gym daily and last week had the satisfying manly pleasure of chopping the tree back in Steven’s garden.

I guess things came to a head last weekend at Steven’s. I tried to give my greatest acting performance of a fit and healthy man but he is incredibly intuitive. He has no tolerance for other people feeling poorly but with me, it taps into all his anxiety about being taken away again because Dad is sick. I was up and down all night in the toilet and that disturbed him. I left earlier than usual on Sunday and by the evening I was bent double in pain.

I phoned the surgery on Monday morning and an hour later found myself being seen by a locum. Her immediate reaction shocked me. “You’re very jaundiced” she said. She asked me to take off my shirt and said, “Look. You’re glowing”. It didn’t carry the same positive tone as when you’re complimenting a pregnant woman. She reeled off a series of questions; her tone becoming more grave with every answer I gave. She sent me off to have a blood test (11 barrels) and a urine sample. I’m a control freak and when I got back, I wanted to know what she was thinking. She’d already said that I would need an urgent referral after the blood results were back but I pushed her for her opinion. She turned her computer screen towards me and I saw the list of symptoms were exactly what we’d just been going through. Then I saw the title of the page – “Liver Cancer”. “You think I’ve got liver cancer?” And she replied, “Mr Neary, you need to prepare yourself for that possibility”. There was something about her inflection that made me think there was an “and” to that sentence that she hadn’t said. I pushed her again and she told me that liver cancers are often secondarys and I needed the urgent referral to determine if the cancer was anywhere else. She booked me in again for Friday morning and told me to keep the whole day clear so I could go immediately to the hospital. And that was that.

I left reeling. I was shaking. I walked into a wall by Debenhams. Uxbridge High Street was packed with kids enjoying their summer holiday. I didn’t want to cry and make a spectacle of myself. I realised I’d missed breakfast and was starving so went to my favourite pub for lunch. I didn’t want alcohol so had a glass of water and a steak sandwich. Then I had the overwhelming desire to get home.

Over the next three days, I only mentioned the “c” word to three people. I told a few others and the support workers that something serious was going down. I looked up the same NHS page the locum had been reading and was hit by the further news that prognosis is poor – a few months at best. I could be dead by Christmas. I started to feel angry. Ever since my 59th birthday in March, I’ve been really looking forward to hitting 60. I want to know what that feels like. I want to experience that decade. On Wednesday I woke up to a very cheery email from my former employer, gleefully informing me that my pension has been calculated and what I can expect to receive next March.

My practical nature kicked in and I returned to the death plan I wrote last year. Although, everything is now documented for whoever picks up Steven’s care baton, I hadn’t actually acted on a few things. The plan has always been to turn my bank accounts into joint accounts with my sister, so that Steven’s money and the support workers wages don’t get frozen for ages during probate. That felt the most pressing aspect of tending to my affairs but amidst the fog, I got a few other things sorted too.

The pain persisted though, especially at night. By Thursday morning I phoned the surgery again because I needed better pain relief than paracetamol. They agreed to bring the appointment forward to late that afternoon and by a stroke of good fortune, booked me in to see the old senior partner from the practice. He retired a couple of years back but keeps his hand in with a couple of slots each week. I’d never seen him about my health before but he had always been Steven’s favourite doctor there and they’d built up quite a rapport.

“I think this is gallstones Mark”.

He went through the 24 blood results and all the ones related to the liver were clear. He said there were a couple of “confusing abnormalities” with some of the other tests and he did an urgent referral for a scan which I should hear about by the middle of next week. The rest of the appointment was taken up by me bringing him “up to speed” about “that great young man Steven”. I was back home within the hour. I looked up gallstones on the same NHS website and the symptoms are exactly the same! But with a better prognosis obviously.

That has been my four days. My head is completely fucked. I still don’t know exactly where I am or what’s wrong with me. I’m not a fool so know that I could be facing something life threatening. I want to believe it’s gallstones and nothing terminal but until I know for sure, that cloud will persist.

I’ve burdened a few people this week but it’s shown me again that I’ve got some fantastic people in my life. Given our family history, my sister has been shaken to the core but her practical nature has kicked in. My best mate Val has been the solid rock she has been for the past 20 years. The support workers have rallied like kings. One of them turned up yesterday before his shift with Steven and said he’d come to collect my dirty washing. He’s bringing it back this morning after he finishes his night shift. I’m very blessed.

Who knows what will happen next. I’m hopeful of having Christmas with Steven, although I’ll probably wrap all his presents up next week to be on the safe side. Me and my sister are off to the bank on Monday morning to sort out the accounts. I might even allow myself to speculate what to treat myself to when I get my lump sum pension next March but I’d better sort out who will be my beneficiary whilst I’m fantasising.

The odd thing is since Thursday, a couple of things have improved. My stools have returned to normal colour. And last night was the first pain free night for three weeks.

I wasn’t sure whether to write this post. Even now, I’m not sure I’ve done the right thing. Despite having laid our life bare for the last seven years and you may roll your eyes when you read this, I am by nature a very private person. My sense is that even though I’m still in the middle of this, nothing has changed and everything has changed. Things always change for me in my last year of a decade. I became a teacher at 29. I became a counsellor at 39 and a writer at 49.

I went to Torquay for a message and perhaps this is it.

Rightful Lives: The Meeting

It’s been a topsy turvy few weeks for the Rightful Lives exhibition. The constant, daily attacks by just one person have been incredibly wearing but this has been more than compensated by people’s contributions that arrive on a daily basis. I just want to burst into silly song when I see how people, without ego and fanfare, step up to the plate and deliver exhibits of breathtaking creativity. I’ve also realised that I was right to step down from the curating team. Frankly, I’m crap at the diplomacy stuff and it’s been a relief to just get on with the day to day stuff of putting the exhibition together.

A few days after my original blog about the exhibition we were contacted by Dr Oliver Lewis, a lawyer from Doughty Street Chambers. Oliver has human rights running through his veins and he was proposing setting up a meeting between families, lawyers and other interested parties and allies to look at ways in which the legal world could help people trapped in the ATU scandal. In a way, it was Oliver and the legal world’s contribution to the exhibition.

Yesterday was the day of the meeting and by crikey, it was the perfect exhibit. It was highly creative and it brought together an incredibly diverse group of people in a way that I’ve only experienced once before and that was with Justice for LB.

There were about 60 people in the room. A large chunk of family members who have a son/daughter/sibling currently in an ATU. There were several people with learning disabilities present, two of whom have experienced life in an ATU first hand. The brilliant Kate Mercer arrived. Five minutes in Kate’s company and you truly believe advocates can change the world. There were people from the CQC, the EHRC, Respond & Dimensions present. All equal. All sharing their experiences and wisdom to achieve something good.

And finally there were ten lawyers there. I fucking love lawyers, especially those who work in human rights and mental capacity. The combination of phenomenal professional expertise, total humility, great humour and absolute selflessness grabs my soul everytime. On a personal level an extra emotional punch was carried in that Aswini was there, Steven’s barrister from his court case. I hadn’t seen her since we said goodbye the day the judgment was handed down seven years ago. I couldn’t help sharing with the group that Steven has a photo album with a section called “People who saved Steven’s life” and Aswini’s photo is one of the main pictures in that section. I must admit I neglected my duties as facilitator of one of the exercises as Aswini and I spent half an hour catching up. It was lovely.

The meeting agreed to Chatham House rules which means I can’t share any individual stories here. However, there was one theme that came up on three occasions where the simplicity of the lawyers’ suggested solutions had me reeling. Basically, people shared stories of very common human rights abuses that probably occur in most ATUs. Stupid practices and rules that are service led and trample all over the person’s human rights, if they’re even considered at all. You know the sort of thing I’m getting it. Anyone who followed George Julian’s incredible live tweeting of the recent inquests will remember the utterly bleak life Danny Tozer lived in the Mencap facility before his death. I don’t think the concept of Danny’s human rights figured on the radar of any of the decision makers in that godawful place. Those sort of stories were replicated by family members yesterday. Anyway, the lawyers’ responses to three of these stories was that more often than not, a single letter from a solicitor resolves the issue by simply asking the question how are X’s human rights upheld by these practices. A letter is also a shot across the bow as well. And it sends a meta message – you are being scrutinized. We are on to you.

I thought this was fabulous and I could see that several other attendees felt the same way. No grand gestures. No costly, time consuming court cases. We were expecting discussions around group actions against specific providers or consistently offending local authorities and in fairness, both those courses of action are still on the table. But the idea that one single letter could change everything floored me. It’s a perfect work of art.

I’ve had one reservation about the meeting since Oliver first suggested it and it has niggled away since and remained during and after the meeting. We have been very clear since day one that Rightful Lives is not a campaign. Rightful Lives actually only exists as the name of the exhibition. We have to be very careful that we don’t give people false expectations about what we can achieve and have to continually remind where the boundaries lie. We are a very small group with absolutely no resources and any work for the exhibition has to be fitted around caring, work and other responsibilities. It was because of our limitations that the idea of an exhibition appealed. Basically, we have tried to say from the outset – “Here is a space. Please use that space for your creative expression” and our responsibility goes no further than that. This was challenged at one point during the meeting. There had been discussion around funding for legal action and one of the delegates said: “What you need to do is set up a crowdfunding campaign to raise funds for this”. Obviously that’s a great idea but we had to nip in quick to say that the Rightful Lives team couldn’t possibly take on the responsibility of such a major project. So, I just want to apologize if the fact that exhibition exists sets up false hope in people but we have to be honest about our capabilities.

I don’t want to end on that note after such a positive experience. To be part of such a collective, creative encounter will stay with me for a very long time.

And if Channel 5 ever run a special Barrister’s Blind Date, put me down as a contestant. Or as Sarah Brightman may have sang – “I lost my heart to a human rights lawyer….”

Fuck Off Personal Budgets: Episode 81

My apologies but I’m writing this post to stop me hurling myself off the roof in complete frustration and anger. Please bear with me, it’s a long story.

Just after Christmas I started to receive very threatening letters from HMRC every Saturday morning claiming I owed them £560 for the financial year 2016/17. I didn’t but nobody was interested and the letters became more and more sinister, threatening court action and the bailiffs. I was terrified because despite repeated phone calls to the debt management team and the employer’s helpline, nobody was prepared to entertain the idea that they may have got it wrong. And as Steven’s support workers all became self employed at the start of 2017, I didn’t have the money to pay off the “debt” anyway.

Then all of a sudden, four weeks after the letters started, I received a phone call from HMRC’s dedicated carers team. We spent ages arguing the toss over the money owing and then she dropped the bombshell – “Do you realise Mr Neary that you are actually owed quite a substantial sum of money from us?” Unbeknownst to me, in 2015 HMRC introduced an “employers allowance” that they kept very quiet about and which I’d never claimed for in the two subsequent annual tax years. I was informed that it wasn’t too late to claim and that I would be due in the region of £5k. I was gobsmacked. I put in an immediate claim and received a letter on 9th February telling me that the claim had been successful and I would receive a refund shortly.

It got to the end of April and I hadn’t heard a dicky bird. I phoned up. Each call takes well over an hour because the call centre who handle the employer’s helpline don’t actually know that the Dedicated carers team exists and as an example of undedication, the dedicated carers team don’t give out their phone number for you to call directly. So every phone call entails acting out the charade of “I’ve never heard of a carers team before” until 30 minutes later, you hear a giggle and a confession of “Well, you learn something new everyday”. Eventually, I spoke to a carers team member who informed me that a credit was sitting on my account and would stay there as I hadn’t formally requested a refund. I did so immediately and was promised that the outsourced team who deal with refunds have a service level agreement to make payments within six weeks and my deadline was 2nd June.

The 2nd June came and went. Another hour long call. Another learn something new everyday performance. Even though nothing had happened, my latest phone call prompted a new SLA and a new deadline date – the 2nd July.

The 2nd July came and went. Another hour long call. Apologies for the delay. The payment had been raised and was waiting the authorisation of a manager. A new deadline date – the 23rd July.

Today’s the third deadline date. What a fool I feel for feeling a sense of anticipation as I check my bank account. Nothing there. Another hour long call. Another you learn something new everyday tango. “How peculiar” was the call centre’s employee’s initial reaction after looking at my account. On the 4th July, two days after my last call, three postal orders were raised (who on earth still issues postal orders?). They were authorised by a manager on the same day. And then the postal orders came a cropper. Sums over £2k need a second authorisation and that hasn’t been done. A new deadline date – 7 Days time on 30th July.

I said to the woman, it’s hard to imagine if the boot was on the other foot, HMRC affording me 7 and a half months grace in making a payment. They were talking bailiffs after three weeks.

I don’t think I’m actually going to see this money. I’d make a complaint but I suspect that would slow it down even further. They have still deducted the debt that I don’t owe but I’ve lost the will to challenge that and will be more than happy if they ever cough up what they’ve promised.

This is the reality of personal budgets. Just so Steven can go swimming.