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Glasses Raised For Anna Raccoon

This morning I came across the sad news that the prolific and inspirational blogger, Anna Raccoon, passed away in August.

Anna was diagnosed with a rare form of soft tissue cancer six years ago and was given a prognosis of one year to live. True to her ballsy character, she stretched that out for another five.

I first encountered Anna during the Get Steven Home campaign back in 2010. A supporter of the campaign had alerted her to our fight and she emailed me one day in October asking for a chat. We spoke for the first time the following day. She explained that earlier in her career she had worked for the Office of the Public Guardian and one of the reasons she had started her blog was her frustration at the lack of transparency in the Court of Protection. She had been looking for a case to write about for a very long time and as I had already made our battle public, she thought we might be just the case she had been looking for. I guess we met at a mutually convenient time for both of us. That day, I spoke to Anna on the phone for over three hours. I hadn’t laughed much in the previous ten months but she had me creased up with her hilarious stories of life as a court visitor. I knew I had found an angel. A thoroughly politically incorrect angel.

Anna published a piece about Steven the next day and continued to follow his story right up to the time of her death. Here is the piece she wrote the day the court judgment was handed down in June 2011:

A couple of years later I was, deservedly, on the receiving end of Anna’s ire. It was the time we were made homeless and Anna had read my blog on the matter. She phoned me and promised to fix up an interview with one of the broadsheets. Later that day, I took a phone call from the Sunday Times and they did a very long interview for a double page spread the following weekend. I didn’t really understand the rules of “an exclusive” and when a journalist from the daily Times contacted me to discuss the homelessness, I gave him an interview too. Anna went ballistic. Her hard work and that of the Sunday Times journalists had been for nothing as I had allowed them to be scooped. I felt guilty and worried that I had damaged our relationship. I needn’t have worried. After I posted a Tweet a few months later that Steven had been found a new home, one of the first people who phoned to congratulate me was Anna.

I hadn’t heard from Anna for a couple of years. I heard a rumour about this time last year that her blog had been seriously hacked and years of incredible writing had been lost. Thankfully, her army of supporters came together and managed to restore her formidable output.

Then, back in the Spring, I picked up a voicemail. The voice was breathless and broken and I couldn’t make out a word of the message. On another day I might have ignored the message but something made me return the call. It was about four hours after the original message and early evening. Anna answered the call. She hadn’t long had a shot of ketamine which she’d been prescribed to keep the pain of the spreading cancer at bay. She said that she wouldn’t be able to talk for long, or at least, make much sense for long but wanted to ask me a favour. She then told me the fantastic story that she was intending to stand at the forthcoming election. The issue of how much the NHS put aside from the annual budget (over 50%) to deal with legal claims had gotten her going and that was what she was going to fight the seat on. By now, Anna was paralysed from the chest down and would be campaigning from her bed at her beautiful Norfolk cottage that she’d returned home from France to. She found it hysterical that she was “standing” for parliament in her current horizontal position and as usual, the phone conversation was full of belly laughs. I promised to help her but such was her legion of supporters that by the time I phoned her back two days later having accomplished my mission, another friend had already sorted her problem out.

That was the last time we spoke. She continued on Twitter after the election under the brilliant title “Not Dead Yet”. She eventually passed away in August. With her family. In her beloved cottage.

I made a photo album for Steven a couple of years back entitled “People That Saved Steven Neary’s Life”. Anna was on page two (just after Justice Jackson).

I’m going to miss you, old friend.

The blogging world has a huge hole in it now.

There are lots of photos around of Anna in her last few weeks in her hospital bed that were used for her election campaign. I quite like this one that was taken  45 years earlier when she was 23:

Anna Raccoon

Rest easy Ms Raccoon.



Talking Sense

I don’t normally do plugs on this blog. Well, apart from plugs for my own shit and there’s plenty of that sort of plugging on here.

I’ve started to follow the most amazing podcasts. They are the work of Tom Ryan (Connor Sparrowhawk’s younger brother) and a couple of his mates.

I’m slightly uncomfortable writing too much about them for fear of coming across as patronising old geezer.

However, I get invited to many professional conferences and the clarity of thought and the uncorrupted language in these podcasts blows any “professional” conference debate off the pitch.

So, if you want to get inspired and get your brain juices flowing, put the kettle on, dig out the Jaffa Cakes and listen to three spot on dudes hanging out.

Measurable Outcomes & Brookside

One thing that all families with a learning disabled member learns very early on is that when you ask for services you have to enter the professionals’ world. They don’t enter yours. Your life becomes framed and narrated in a way that you have never done before. It is expected that you learn the language and the processes. If you don’t, you’re in completely alien territory even though that territory is your life.

You are led to think in terms of tasks, of measurable outcomes, of action plans. It’s a business speak that is very hard to fit with the way you live your life.

I remember a story from the time Steven was in the Unit. I had to attend an update review meeting about two months after Steven was detained. One thing I brought up was Steven’s clothes. All the ones he went away with had either been lost, damaged or shrunk beyond wearing. It was tense because the professionals went on the defensive. We had a long discussion about replacements and I offered to order a new wardrobe that evening & Steven would have the new clothes by the weekend. A few days later I was sent an “action plan” resulting from the meeting. One paragraph was:

“Task – To buy new clothes for SN”.

“Tasked to – MN”

“Completion Date – 26.2.10”

“Outcome – To improve SN’s choice of clothing”.

A normal everyday job that didn’t even merit recording was turned into corporate cobblers.

For years after Steven transitioned into adult services (I can speak the lingo) I was asked when I saw the time when Steven would be living independently. A major life development had to be reduced to a “task, completion and outcome” box. I could never answer the question in a way that I was expected to. I’d mumble something like, “Well, I’m sure it will happen when it happens. When Steven is ready”. I knew it was the wrong answer although it was the only right answer I could envisage. I knew I was right because Steven’s whole life had progressed like that. He learns things when he’s ready to learn them.

Today is a perfect, albeit minor example of this. Earlier I told Steven about an episode of Morse that I thought he might be interested in that was being repeated on ITV3 this afternoon. To coin a phrase, “They’re all in it”. Lots of actors that Steven would recognise from other shows. He likes that when familiar faces turn up in other shows. I gave him some clues:

“The man from One Foot In The Grave & Mr Bean’s dentist”.

(Easy peasy) ” Richard Wilson? And?”

“That naughty man from Brookside”.

“Robert Pugh”.

Good grief! He didn’t say John Clarke. Clarke was the character in Brookside who held the nurses hostage back in 1984, finally shooting Kate and then himself. Steven has watched the video many times and can quote many of the lines.

But he knew the actor’s name and that he was playing a part. It’s the first time he’s differentiated between an actor and the part he plays.

It’s taken 27 1/2 years. Perhaps, he’s known that for years and hasn’t been able to articulate it before. Who knows? Whatever, he’s done it in his own time without any recourse to an action plan.

That’s how we live our lives.

Random Investigations

I’ve been following the NMC fitness to practice hearing into the conduct of the nurse from Winterbourne View who broke the jaw of one of the patients. The outcome was so utterly depressing as the panel decided that the nurse was able to continue practicing in the nursing field. Steve Scown from Dimensions has written a cracking post on the subject:

There are two other ongoing investigations by professional bodies as well. Next week sees the resumption of the GMC hearing into Dr Valerie Murphy, the responsible clinician for Connor Sparrowhawk. The way the hearing has gone so far, it is impossible to predict what the outcome might be.

Last week also saw the HCPC held a hearing into the conduct of the social worker, Linda Fraser. Ms Fraser had been found by the Judge in a Family care proceedings case to have altered care records to present the parents in the case in a worse light and to have lied about the matter in court. She is still working in the same role. Once again, the evidence at the HCPC hearing has been so removed from the court ruling that the outcome could go any way.

All these case has taken me back to the time Steven was assaulted by one of the shift leaders when he was in the Unit. I thought it then, and I feel even more certain about it now – any investigation into an assault, or even worse, a death of a learning disabled person is completely random. Despite armies of professional bodies, safeguarding agencies, the police, the matter can be investigated or totally shut down. It’s the toss of a coin. A positive outcome relies more on luck than process.

The day Steven was assaulted, he was lucky. (I can’t believe I’ve just wrote that). The shift leader turned up for work. From the evidence in his trial, it seemed likely that he was hungover from the night before. Steven was in the garden with two agency staff waiting for the shift leader before they could go out. The agency staff had no agency at all and couldn’t do anything without the say so of the shift leader. I imagine it was pretty tense in that garden. The shift leader appeared in the garden with a cup of coffee. Steven asked him when they were going out. The shift leader didn’t respond. At some point, Steven hit the shift leader on the arm. The shift leader kicked Steven three times and threw the coffee over him.

Here’s the lucky bit. The two agency staff had integrity. They phoned their manager and told her what they’d just witnessed. Another stroke of luck was that the manager was unable to contact the social worker nor the manager of the unit, so phoned the police. That meant the police arrived before any shutdown had started to happen. The shift leader and the chap he was taking over from had started the cover up and already got Steven out of his wet clothes but they couldn’t hide the cuts and bruises on his leg. Fortunately, the agency staff witnessed all this and weren’t prepared to keep quiet.

I didn’t know any of this until later that day. The social worker and her manager visited me and told me that Steven had been attacked. What they left out of the story was that the attack had been carried out by a member of staff. They led me to believe that it was another resident at the Unit that had assaulted Steven. Another stroke of luck was that about an hour after they left, I took a phone call from a policewoman, who had already started investigating. She told me that she would be interviewing Steven that evening and would I like to be present? The social worker and the manager of the Unit didn’t tell me about the police interview. Left to them, it would have happened without me.

An internal investigation started but we never found out the outcome of that. I was shown a draft copy of an interim report that was so heavily redacted it was unreadable. Thankfully, the police were more transparent and the CPS decided to prosecute. The two agency workers were the key witnesses for the prosecution. The defense was a shambles. The chief witness (the other shift leader) was late and the court clerk had to phone him to insist he appears to give evidence. The attacker made a complete pigs ear of his demonstration of how he “defended himself” and brought up stories from Steven’s past to present himself as the innocent party.

A strange thing happened at lunch. We adjourned for lunch. I could have gone home but decided to go and sit in the park and be alone with my thoughts. I nipped into Tesco to pick up a sandwich. As I leaned across the counter to pick up my egg mayonnaise roll, my hand touched another shopper. I looked up and it was the Judge. We didn’t exchange words but there was something in her glance that told me it was going to be okay.

The shift leader was found guilty and sentenced to 40 hours community service. I don’t know if his professional body took any action. I don’t know whether the internal safeguarding investigation took any action. One odd thing about sitting in court that day was the absence of any Hillingdon staff. It was like they had nothing to do with the event at all. The fact that it took place in their Unit and was carried out by their staff was lost. The whole thing was conducted in a vacuum. A Hillingdon free vacuum.

As a moving postscript to this story, when Steven came home eventually, he mentioned the shift leader’s name one day. I steeled myself to hear Steven’s version of that event. However the story Steven wanted to tell me had nothing to do with the assault and concerned something that had happened a few months before the assault. This was Steven’s story:

“N threw Steven Neary’s shoes in the garden. N pushed Steven Neary into the garden to get his shoes. Steven Neary’s socks got all muddy. N was laughing massive”.

Nobody spoke up that day.

Completely random.

Who’s Listening?

I spoke at the National Advocacy Conference on Thursday. The organiser, Kate Mercer, delivered a great rousing opening address. She called on the advocates present to have a more collective voice. Whilst acknowledging the fine work they do on a 1:1 basis, she called for people to come together and speak out about systemic issues they encounter.

It made me think of the people in Cygnet’s Cedar House that we featured in the last 7 Days of Action campaign. To different degrees they all have some form of advocacy but nobody is speaking to each other and joining up the dots and making a bigger noise. Why is nobody shouting about the inordinate length of time people stay detained in Cedar House? (We came across four people with stays between five and fourteen years).

Inspired by Kate’s presentation, I decided to change my talk at the last minute. I thought I’d change the narrative of the Get Steven Home story and frame it as “Who listened to the advocates?” I bunked off the afternoon workshop and made some new bullet points.

Steven had quite a lot of advocates during 2010. Professional and non professional. But the impact they had on getting Hillingdon to listen was negligible. Their biggest problem is they were representing Steven’s view and wishes which were completely at odds with the Hillingdon position.

What advocacy did we have:

1. Late in the day, we finally got an IMCA. Even though Justice Jackson described her report as the “first best interests decision that deserves the name”, she was ignored by Hillingdon.

2. Four Best Interests Assessors. Unfortunately they allowed themselves to be so compromised they ended up acting against Steven.

3. The independent psychologist. His report was sat on for two and a half months because he presented a different view to Hillingdon’s.

4. The learning disability nurse and the manager of the support agency. From the minutes of various meetings, both challenged the party line. And for their efforts, both were never invited to future meetings.

5. The support workers. Both Francis and Chris gave evidence in court that they were never involved in discussions and planning about Steven’s care. In fact, when Francis challenged the managers he was subjected to the most awful violence that nearly led to him losing his job and home.

6. The press and media. They were met with the usual “we cannot comment on individual cases”. Until the court case, when Hillingdon decided to use the press by issuing their press release that presented Steven appallingly.

7. 5000 Facebook supporters. They were seen as people manipulated by me to back a one sided story.

8. Me. All my advocacy was turned against me and framed as “uncooperative, passive aggressive, unable to support Steven” with questions raised about my mental stability and integrity.

The point I wanted to make in the talk was that Steven’s biggest and best advocate was/is himself. If only he’d been respected enough to be listened to then the cast of characters above wouldn’t have been needed. Let’s look at how he self advocated:

1. In polite words. Several times a day for 358 days he would say to whoever he felt might listen, “want to live in the Uxbridge house with Dad”.

2. In making plans. He would seek the help of others to get him away. The unit had a rodent problem and one day Steven asked the Rentokil man, “Take Steven Neary in your van to the Uxbridge house”.

3. In song. Where verbal requests failed, Steven drew on his vast repertoire of songs to express his wishes. He would greet the manager daily with I Want To Break Free or Sloop John B (“I feel so broke up. I want to go home”). Nobody had the imagination or honesty to hear this.

4. In behaviour. As was glibly repeated by the unit, “all behaviour is communication”, they completely ignored the obvious message Steven was communicating.

5. By escaping. When all else fails, make a break for it. As the year wore on, Steven’s escapes became more intricately planned by him.

Where Steven shot himself in the foot was with his direct honesty and inability to play the game. All the people I mentioned above, having tried the direct approach, then moved to more tactical manoeuvres. Steven can’t do tactics. So what you get is, BOOM, in your face, truth. He paid a terrible price for that. State bodies cannot handle that level of truth and their only response is shocking violence against the truthsayer. Whether it was covering up Steven throwing his broccoli in the bin or matters more serious, his truthful actions were seen as a great threat. After Steven’s nighttime, barefoot escape, the social worker dismissed it as Steven being “terribly confused”. Yet to everyone not trying to hide the truth, they saw it as Steven having the capacity to plan and execute his dream.

Steven is perfectly capable of advocating for himself on most matters.

He only needs advocates because he’s seen by the State as not quite human and is subsequently not listened to.

But when Steven and a whole army of advocates aren’t listened to, what can the collective response be?

Kate? Any of the delegates? We need you but what can you do?


(Not) Joining The Dots

We hear a lot in social care about joined up thinking. Joined up working is pretty popular too. It’s such a shame that not much effort goes into joining up the dots. This post is a clumsy attempt at joining the dots of a few recent social care/ ATU stories.

There have been a number of news reports about the Cygnet owned hospital in Woking. This is the place that Matthew Garnett’s family fought like mad to get him moved from as they were so horrified by how much Matthew deteriorated whilst there. This week the CQC published their latest inspection report with an horrific overall rating of “inadequate”. Please read the report below. It makes for very distressing reading though:

The report is expertly hidden on the Cygnet website but what takes pride of place is the news of a second unit currently being built in Harrow. This new 14 bed unit adds to the existing 44 bed unit on the same site. The most recent CQC inspection report for the current Harrow Unit carried a “Requires Improvement” rating.

Cygnet are clearly on an expansion roll. The new Harrow Unit follows their new 56 bed hospital that opened in Coventry back in April.

Another private company currently on an upward trajectory (profit wise) are ASC Healthcare. Back in August they opened an 18 bed unit in Manchester. Now, they have announced that building work has started on a 54 bed unit in Wrexham. I don’t know about you but that seems quite an investment to me. Local commissioners have distanced themselves from the project but you know the catchphrase from A Trade in People – “If you build it, they will come….”

Arcadia is the huge American company that recently snapped up all the Priory Group facilities. They have are also the parent company of Partnerships in Care. You may remember Stephen Andrade, one of the original dudes from the first 7 Days of Action campaign. Stephen has been in one of the Partnership in Care units for nearly five years. Back in March, the hospital received a “Requires Improvement” CQC rating. This week Stephen’s mother, Leo, posted a very disturbing update on her petition page. A police investigation is currently taking place so it would be inappropriate to comment further than the details Leo has already disclosed. It was recently discovered that Stephen’s clavicle was broken. Clavicles don’t just suddenly break for no reason. CCT footage has shown constant use of physical restraint, which appears to be the cause of the injury. Will the dots be joined on this one? What has happened in the six months since the “requires improvement” report? Will local safeguarding take this seriously?

Perhaps the strangest announcement of the week is the news of a 22 bed unit opening in Oxfordshire. What makes this one stand out is it’s an NHS unit. Qué Transforming Care? The mantra of TC is that it is about closing beds. Building 22 new ones doesn’t make any sense. We know that STATT was closed after the preventable death of Connor Sparrowhawk. We know of Oxford families who have campaigned tirelessly for crisis support. I think they had in mind at home support or short term respite provision. I don’t think they were after another 22 bed institution.

The awesome Julie Newcombe expressed her dismay on Twitter and asked for the rationale behind the build. She received the following reply from Anne Webster of NHS England:

“It’s part of the overall plan to reduce the overall number of hospital beds whilst being closer to home. A secure hospital closer to home = shorter length of stay & maintains relationships with family & community easier. Closures in other regions. It’s not alternative to crisis beds which would be part of CCG (non secure services) planning as alternative to admission to ATUs  “.

I find that baffling. Do you reduce beds by building 22 new ones? Local doesn’t mean shorter stays or maintaining relationships. Steven Neary was in a unit about half a mile from his home but was still kept there for a year. STATT was just down the road from Connor’s home and we all know how difficult the Unit made it for Connor to maintain his family relationships. I can’t find any logic in the response to Julie’s question.

Hard to know where all this leaves learning disabled people and their families. As I’ve been writing this, Steven has been listening to The Beautiful South song “Hold On To What”. He likes this song because it’s got a cheeky swear word in the lyric:

“Many years of service with a smile.

Up shit creek and down the Rhine”.

The Broccoli’s In The Bin

Something rather wonderful was suggested on Twitter this morning. Inspired by yesterday’s post “The Advocacy Games”, @ChoiceAdvocacy put forward the idea that we need a new metaphor to call out the spin of social care. A 2017 version of “Hey, the king’s not wearing any clothes”. The suggestion was that we adopt Steven’s response when he exposed the lie of the Unit’s food logging system:

“The broccoli is in the bin”.

Don’t get involved in a debate with the spinner. Disengage from the nonsense. Just simply tweet back, “Lol. The broccoli is in the bin”.

There were two fantastic examples of where this response would be the perfect reply earlier. The only reply, frankly.

There seems to be a gamut of social care conferences this week. It’s impossible to keep up. I saw a tweet from one where the delegates were assembling for a “Keeping it Real” plenary. I have a small tip for the organisers – your client’s lives are very real. It’s when you come along that they become unreal. Take Steven’s Community DoL. What could be more real than a man going off to Brighton with his mates to have a swim and meet up with an old friend? Just imagine a quaint version of Quadrophenia. In the eyes of the state, that trip, because it involved support workers amongst the Brighton bathers, constitutes Steven being deprived of his liberty. Perhaps the conference session should be titled, “Turning the Real into the Unreal”.

“Lol. The broccoli is in the bin”.

A quick scroll down by Twitter timeline and another conference, another tweet: “There is a long way to go before service users and their families accept partnership working”. Oi, Mr Tweeter. Families don’t want partners. Whatever happened to Munby’s famous quote about the state being the servants and not the masters? Partnerships is such a self important idea. When these people are in their own homes and their toilet floods, do they consider themselves in partnership with the plumber? It’s making out a level of input that is far more valuable than it really is. What do we want? We want you to provide services and we want you to provide the money to pay for the support. That’s it. Off you go now. Thanks.

“Lol. The broccoli is in the bin”.

Not a day goes by without an NHS Leaders conference. They always come up with prime material for the nation’s new catchphrase. Here’s just two from this week:

A call for “Disruptive Innovators”. Or it could have been “Innovative Disrupters”. I’ve forgotten already.

How about the great and the good going through a “Leadermorphis”? Altogether now….

“Lol. The broccoli is in the bin”.

If you’re actually in the same room and hear one of these gems, you need to act out the “Lol”. Bend double. Clutch your sides. Wipe your eyes. Impersonate the laughing policeman. Much more satisfying than debating the finer points of Leadermorphis.

If the disruptive innovator gets pissed off by your collapse into mirth, just say, “Look. We’re a partnership. I see our partnership along the same lines as Morecombe and Wise. You’re Eric, the comedian and I’m Ernie and my job is to crack up at your jokes”.

All catchphrases have to start somewhere. Even Bruce had to work his “Nice to see you, to see you nice” before it caught on.

Steven is watching.