What Is Community?

This morning, NHS England & ADASS released their plans to close 50% of learning disability in patient services by 2019. There is some good stuff in the report, not least that NHS England and ADASS seem to be singing from the same hymn sheet. But why 2019. That’s a bloody long time if you’re trapped in an ATU. And why only 50%? That sounds like (literally) half measures to me. Where is the evidence that the remaining 50% still need the services of an inpatient facility?

The thing that bothers me greatly though is this statement: “NHS England is hopeful of jump starting the building of new community resources with its £45m fund”. Twitter has been awash with discussions about co-production, joined up practices, partnership working etc etc….

What is a community? A learning disabled person is the community. Their community already exists. A person leaving an ATU will either return to their community they left before their incarceration or they will move to a new community. A community exists with or without us. We build and shape our community from within. It is a work in progress. You can’t build it in advance. Communities are good and bad and we take from them what we need. And a community already has its resources.

Before I left for work this morning, I sat with Steven and ran through the plans he’s made for today. They were: go to Ranjit’s shop for a Flake; have a Fawlty Towers marathon; go for a pub lunch; search YouTube for the clips he wants for his radio programme on Monday; go swimming at our local Mencap pool. It’s important to point out that if Steven was still in the ATU, he wouldn’t be able or allowed to do any of those things. But the more important point is Steven’s day is his community. The ” resources” are either there, or Steven has built them. It’s not rocket science -it’s just a dead normal life. Steven lives in a normal 2 bedroom house, in a normal street. He’ll have a normal conversation with Ranjit’s whilst buying his Flake. He’ll have an orange juice and a bag of Cheddars in the pub, just like the other Friday customers.

Yes, he needs good quality support to enable some of this but here’s another thing – his five support workers are dead normal blokes as well. They might have a Flake too. They care about him and are interested in him. I think that’s a bloody good basis to life.

Please don’t sabotage the potential of today’s report by over complicating something fairly simple.

After all, we’re just talking about human beings. With human rights. And human needs. That’s it.

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Committee Room Five Response To Media Outcry

“You may have noticed that an assessment and treatment unit, run by Newport Pagnellshire Social Care Majestum has been in the news recently. Basically, for four weeks in August, the Unit was overrun by an infestation of vampires. Most of the service users lost a lot of blood, but I should point out, that this was a humane plague of vampires and none of the residents were entirely drained. The toxic sister of one of the residents bypassed the usual internal incident reporting procedures and went straight to the CQC who in their wisdom put the Unit into special measures.

We take all concerns raised about our services extremely seriously. We immediately instigated an independent internal investigation, headed by myself. The investigation found the management of the Unit to be entirely blameless and beyond reproach. However, the report did reveal minor, albeit serious failings on the part of one of the zero hour agency night staff. This minion had failed to familiarize herself with the organization’s vampire risk assessment protocols. This member of staff has been disciplined and sent to Coventry by all her senior colleagues. It is also worth noting that the investigation found that the above mentioned toxic sister had not supplied her service user brother with a clove of garlic on admission, which in our view, was an unfortunate lapse in her judgement.

As a result of the wideranging independent internal investigation, we are reviewing all our processes, particularly around the risks posed by mythical creatures. Lessons have been learned and if any mistakes have been made (which is unlikely), we can assure the press that they won’t happen again as long as you are camped outside our door. Positive Vampire Support training will now form an obligatory module to all further induction training. We hope that families won’t mind paying extra for their loved one’s care charges to cover this award winning training. It will be a small price to pay (probably an extra £499.99 per week) for the reassurance that their relatives are in safe and skilled hands.

The safety of the people in our care is always our top priority (that goes without saying) and we reject completely the suggestion that we put the reputation of the organisation and the shareholder’s dividends before the vulnerable people in our care. It is purely coincidental that on the night of the most serious vampire attack, the senior management team were able to evacuate themselves before the residents. They were perfectly understandably distracted by the cocktail party they were shortly to attend.

Finally, we would like to offer our most sincere condolences to anyone affected by this tragedy, even though our transparent investigation highlights that nothing tragic actually happened.

We hope that everyone involved can now draw a line under their blood loss and trauma and move on”.

Haggling & Blaming

There’s a couple of social care issues that I’ve been mulling over the past few days. I’m not sure I have any answers but it’ll be good to put them out there.

We’ve got a couple of significant anniversaries coming up in the next two weeks. On Sunday, it will be two years to the day that Steven finally got his own home. After a horrid 18 months of facing being homeless, Steven got allocated the home that hopefully will be his for as long as he wants it. Then, the following week, will see the first anniversary of me getting the keys to my flat. It’s been a year of big adjustments for me but it has been wonderful to have a space that is restful and creative.

Steven’s care plan is due to be reviewed in December and I’ve been wondering whether I should revisit something that has been unresolved since I got the flat. Obviously having the flat means that I want to use it and not just for my work. Last November I took advice and told social services that I would not be available to provide Steven’s care three nights each week. I also tried to play them at their own game, stressing how valuable this additional independence will be to Steven. Now, here’s the first issue – why does everything in social care have to be haggled? At first, I was told that I would only be “awarded” one night per week. I challenged that decision and it was increased to two nights. It had nothing to do with Steven’s needs and how they are met. The transaction was reduced to a car boot sale transaction – “I’ll give you £1.50 for that Elvis print mate”. Meeting a need was reduced to haggling and even then, the full need was not met. I haven’t told social services this but I’m getting my third night and paying for it myself. But I’m not going to be able to afford it forever. What strikes me though is that, even after I’d made a categoric statement, there was no attempt to consider Steven’s needs. Not then or since. I wondered whether a safeguarding official would turn up to see if I’d gone off and left Steven on his own. But of course, they know I’m never going to do that and that is why they can haggle away to providing the bare minimum. Nobody is going to check or reconsider their decision because they know that I’ll step in. I’ll rearrange my plans because I have to. Perhaps that is why haggling is so commonplace.

The other issue is parent blaming. I wrote about this a couple of weeks back and since then I’ve been following several conversations on the subject. It seems that mother blaming is far more prominent than father blaming. Certainly at LB’s inquest, Sara got a much harder time than Rich and it was racked up to such an extent that she became a “toxic” woman that one of the psychiatrists refused to work with. Earwigging these conversations led to me to reflect on how I’ve been shifted dramatically from one box to another by Hillingdon’s social care team. When I was married, my wife definitely came off worse from the professionals. She would challenge them and then be completely ignored. Then the professionals would turn to me, as if I was seen as more reasonable and more objective. Looking back, there were plenty of times when they played Julie and me off against each other and it was deeply uncomfortable. I’ve got old reports describing my wife as “the problematic mother” and “too controlling” but I get off fairly lightly. Until we split up and then I suddenly found myself saddled with those roles. I became “problematic”, “uncooperative” and “passive aggressive”. It’s damn hard not to take it personally but I always felt that for the social care illusion to hold up, someone has to be given that role. It’s like the old psychology chestnut of the drama triangle where the three roles are played by the victim, the aggressor and the rescuer. Social care likes to see itself as the rescuer no matter how nonsensical that is in reality. But when two parents become one, the fragile illusion becomes very shaky and the social care position switches to the victim. The parent, whether it is a mother or father, is forced into the role of the aggressor. It’s the only way for the fake edifice to sustain itself. I think a very useful rule of thumb is that the more you are painted as the aggressor, the more likely truth is that you are on the receiving end of an underground aggressive attack.

The other thing I’ve noticed in my limited experience of blaming is that whether it is the female or male parent on the receiving end, it tends to be the female professional doing the blaming. I don’t think the blaming game has ever happened to me with a male professional. They criticised me but it has been upfront. I think the trick with this blaming is to go straight for the things that the parent values most. Julie was often blamed by Whistler’s Mother for being too nurturing or too pushy. The blame on me was different. I remember a meeting with just me, Whistler’s Mother and one of her senior female managers. Between them, they couldn’t think of one thing I do right in being Steven’s father. By the end of the meeting, I felt like my balls had been sliced off. I remember I had them when I walked into the meeting but somewhere during the meeting, they had been surgically removed. Probably because the values I hold dear as a man and as a father were shredded.

Although, the two issues I have raised here are very different, I think both whether you’re dealing with haggling or blaming, you have to be on your toes all the time. Nothing is straight forward. Nothing is as it is presented. And nothing is like your reality.

In Steven’s music blog, I’ve written how he likes to change the lyrics of songs to reflect his personal experience. So, on that note, next time you hear the Jackson Five, you might want to sing this chorus:

“Don’t blame it on the mother.

Don’t blame it on the father.

Don’t blame it on Steven Neary

Blame it on Whistler’s Mother”.

Love Baffles

George Julian did a fantastic job live tweeting the LB Inquest. To have that level of detail so closely recorded will be an important record for years to come. One of the many discussions that has occurred since the verdict has been the psychiatrist’s real loathing of Dr Sara Ryan. I was in the courtroom for the second part of Dr M’s evidence and her disquiet was visible. Even on video link, it was shocking to see her freeze every time Sara’s name was mentioned. Why?

I think it’s about love. Or the complete incapacity to recognise and understand love. Every time Sara talked her love for Connor, and indeed her ability to love from a very deep place, came through very powerfully. This is extremely threatening. The minute professionals who build such a fragile façade are confronted with love, the entire edifice comes crumbling down. The ensuing exposure often results in aggressive attack.

I have my own experience of this. I took a friend to a meeting which included nine professionals. The main agenda point of the meeting was the LA’s plan to move Steven to Wales. As usual, I put up my normal argument that if they let Steven come home, all the challenging behaviour would disappear. The chair of the meeting said: “Mr Neary. Why do you believe your opinion is more valid than any of the professionals sat around this table?”. I responded, “Because I know him. Because I love him”.

At this point, my friend nudged me in the ribs. I looked across and the social worker was laughing. Love had become laughable. It was invalid. So consequently, if knowledge arises from love, then that knowledge becomes laughable too.

On a surface level, my expression of love was sneered at but on a deeper level, it must have pricked something. From that point on, the tone of the meeting became very aggressive (on their part). An already frosty atmosphere became a Siberian winter. I had said something very unsettling and the only response was to attack.

Love has no place in social care. You dare not speak its name. Even worse, you better not imply love by your expression or behaviour. Love is as relevant to person centred plans, one page profiles, risk assessments as a stale Jaffa cake.

I’m not saying this is true of all professionals in social care. Obviously it is not and I’ve met lots of people who exude love and maintain their professionalism. But be very afraid if you come across one who doesn’t recognise what it is like to love or be loved. Your love will wound them and, unconsciously, they will want to wound back.

What Dr M needs more than anything is several sessions on her own couch.

“Why Was Connor In Hospital?”

Yesterday was a remarkable day. After two and a half years of Sara Ryan and her family being on the receiving end of the most abhorrent behaviour from Southern Health NHS Foundation Trust, the jury at the inquest of Connor Sparrowhawk delivered its verdict. I was at a conference in Croydon but I wasn’t really there. Whilst the other speakers delivered their presentations, I was glued to Twitter, waiting for the verdict to come in. Death by drowning with a contributory factor being neglect. And a list of “serious failings” as long as an 8ft man’s very long arm. I cried all the way home on the train. I got back to Uxbridge and found a secluded spot in the Slug & Lettuce and cried some more. The relief that the jury saw through the appalling tactics of Sloven merging with the unspeakable sadness that a young man’s life had been so needlessly lost. I got back home and couldn’t tear myself away from the news bulletins and Twitter for the rest of the evening. More tears came when I read a tweet from a mother who had just broken the news to her two kids. One of them asked: “But why was Connor in hospital?”

That is the big question. I appreciate that at the pre-inquest hearings it was agreed that the question was outside the scope of the inquest but I hope that one day it is answered. I find it incredible that more time was devoted at the inquest to Sara’s “Dr Crapshite” blogpost than it was to the role Oxford Commissioners played in the preventable death. In fact, they didn’t appear at all. I’d like to try and answer that little boy’s question.

The discredited, unlicensed (in the UK) psychiatrist said in her evidence that people are admitted to STATT because they are “very unwell”. In one respect, you can’t blame a psychiatrist to see the person through a medical lens. That is her training and it certainly serves her purpose to see young men like Connor as “very unwell”. But from the starting point of seeing Connor as “very unwell” a whole train of events were set in motion that ultimately led to his death. Needless to say, the psychiatrist’s first action was to change his medication, riding roughshod over the family’s concern that Connor never reacted well to medication changes. The evidence from court suggests it is highly likely that the change in medication led to an increase in Connor’s seizure activity. Even that might have been manageable if the arrogant doctor hadn’t dismissed the family’s concern and decided that what was clearly an increase in seizure activity was nothing of the sort. The fatal, dreadful consequence of that decision was that Connor had a seizure in the bath and drowned. To compound this horror up to the very last minute, the psychiatrist’s counsel proceeded to try and discredit not only Sara but the court appointed epilepsy expert.

I’ve written about this many times before but I have a real huge question mark over this idea of “very unwell”. I’d love someone in the autism field to take up the cudgels and do some serious research into what happens to our young dudes sometime during mid puberty. Like Steven at 17, Connor became very unsettled. We have heard many many similar stories online of young autistic men and women struggling and in distress. Is it a psychiatric crisis? Or is it an existential crisis? If, as I believe, it’s the latter, it doesn’t necessarily need medication intervention and it certainly doesn’t need the person to be taken away from everything they know and treasure. I use the word “treasure” as I’ve tried to understand how Steven made sense of his time in the ATU. From his autistic perspective, the things he treasures are his routine and his familiar surroundings and people. For all those things to disappear overnight must be the greatest terror in the world. I’d suggest that the word “routine” and its importance to someone with autism holds the clue to the crisis. I can only really speak for Steven but I know he is very alert to potential change, very sensitive to the possibility of his foundation stones being rocked. And here’s the thing. You go through school and around 16, you start to get wind that everything you have known for the past 12 years is about to change. You may not understand the word “transition” but a whole army of new professionals suddenly enter your life. I imagine, that no matter how sensitive those new professionals may be, the danger signals are flashing. People start discussing new ideas, either with you but more probably, around you. New words like “work”, “college”, “placements”, “day activities”, “support teams” hang dangerously in this new, frightening space. Connor, like Steven, clearly had a very well tuned bullshit radar, that is probably going to pick up the shams and the spin long before the parents have twigged. All the ingredients of a terrifying existential crisis. But not “very unwell”. Enter at this point the likes of Dr M who will blithely diagnose a chemical imbalance and prescribe some anti psychotics to correct the imbalance. Shamefully being too conceited to acknowledge that her prescription is creating the imbalance whilst surrounding herself with staff too shit scared to question the judgement of the senior. And all this has to take place on the psychiatrist’s own territory. For the “patient” this is a territory of terror. The original crisis increasing tenfold.

I think that is why Connor was in hospital. It was why Steven was in hospital. And is probably the reason why others like Chris, Tizane, Stephen and Eden are trapped there.

I wish I had both the brain and the money to research this more thoroughly. There must be someone, some organisation out there who could provide this crucial service.

I don’t want to end on that note. I want to end with my own thanks and expression of admiration to the following:

On Monday, in court, I found myself sitting in the row behind Connor’s brothers and sister. Every few minutes I had to swallow hard to hold back the emotion of witnessing these incredibly courageous, dignified young people.

George Julian is a phenomenon. I have never witnessed anything like her live tweeting and I think I have witnessed history being made. Things will never be the same again after George’s incredible achievement.

And Sara and Rich. Carrying such unspeakable pain but both with hearts as big as the world. You mean the world to me, and I’m sure all the @justiceforLB supporters.

I tried to break the news to Steven last night. The concept of “neglect” was a bit beyond him. I asked him if there was anything he wanted to do for Connor and his family. Steven has never really been into lorries or buses but one area where he and Connor resonate is….. cake.

Connor. This is for you mate: cake

Dignity, My Arse

Yesterday at @LBInquest we heard the lead psychiatrist talk about the fine balancing act between respecting dignity and safe bath care. If it hadn’t been for all the preceding testimony, it may have sounded genuine. But of course, it wasn’t.

The trouble with a broken social care is that it repeatedly takes important words and ideas and sucks them of any life and meaning. Fundamental values like dignity become corrupted, so their only value to the corrupted professional is to mislead or cover their own arse. Or both. Whether you see it as doublespeak or nothing speak, it kills the very idea of being human.

I don’t think the psychiatrist really gave a toss about her patient’s dignity. I’m not sure it even registered. You have to have very skewed logic to believe that it is dignified to leave someone with epilepsy alone in the bath, whilst at the same time promoting the idea of pinning someone to the floor by four people on their first night in the ATU. You either treat someone with dignity or you don’t. It’s not a selective activity.

Like many things in social care, dignity gets trotted out when the intention is to obscure. Yesterday it was announced that a new “Unit” is being built in Wiltshire for people with learning disabilities. It talked about patients and beds whilst presenting itself as a home that will give people their respect and dignity. Let’s cut to the chase. Despite Valuing People and Post Winterbourne View, it’s a new fucking ATU. They might call it “The Daisy” and bang on about dignity but it’s still another long stay unit. Even if the owners get their dignity gig spot on, it is still pretty undignified being sent to a place like that when you could be living in your own home.

Southern Health in their undignified witness evidence are mistreating humanity. They are perpetuating the worst indignity – that people with a learning disability are not quite human. Read the tweets of the psychiatrist’s evidence and try to find any trace of her according Connor the dignity of being spoken of as a person. It’s not there. Dignity dilemmas are a get out clause for their deathly care.

I despair every time I hear professionals talk about dignity. Even the well intentioned make my bum cheeks clench. I hear people talk excitedly about the possibilities of the One Page Profile. I would consider it pretty undignified if my life was reduced to one page. I bet the writer of the 1PP would too.

I have a fairly sound picture of the construct of my dignity. And Steven’s too. It is nothing like the social care world picture.

It’s dignity Jim. But not as we know it.

Parent Blaming

I wasn’t going to write about LB’s Inquest until it finishes. But yesterday’s recording triggered off such painful memories from my time in court, I wanted to set some thoughts down here.

The Ministry of Justice continually states that an Inquest is a non adversarial process. They usually trot out this line to justify not awarding legal aid to the families of the bereaved. So if an Inquest is non adversarial, what place is there for parent blaming?

Yesterday, one of the witnesses was asked if she was “scared” of Dr Sara Ryan. The witness said “no” but the reply was almost irrelevant. The aim was to paint a negative picture of Connor’s mother. There are 8 legal counsel present and only 1 representing the family. That’s seven opportunities to attack the family. The attacks had started the day before. Connor was “difficult” to build a relationship with. Patient difficult, Mother scary.

At our hearing, the Hillingdon barrister seemed obsessed with intimidation. One of his first questions to me was, “Are you intimidated by Steven?” My spontaneous, incredulous reply of “Intimidated!?” (Imagine Lady Bracknell saying “A Handbag”) should have put an end to it but he persisted for a horrible 15 minutes. Then, with all the other witnesses, especially Steven’s two support workers, he switched his questioning to, ” are you intimidated by Mr Neary?” Although everyone said “no”, he had set something up.

As a line of attack, it is psychology unsound. She is feeling intimidated. Ergo, you are intimidating. It’s nonsense. The reason you may be feeling intimidated may actually lie in you. Sorry to namedrop but last year I was introduced to Sir James Munby. I felt buttock clenchingly intimidated. Sir James couldn’t have been nicer. My intimidation had nothing to do with him. It was all my stuff around class, education, power etc.

In the bearpit of Oxford Coroner’s Court, it’s too much to expect people to ” own your shit”. That’s not the point of parent blaming. And patient blaming.

In the non adversarial process, even though a young man died whilst in State care, it is seen as acceptable for the State to attack the dead man’s family. It is just collateral damage as the NHS Trust attempts to protect its reputation. And it’s future earning power.

Mr Gove?