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Whose Home Is It Anyway?

Two stories hit the news this week that beg the question, if you are living in a care home, is it your home? Or are you a guest in the provider’s home? Or are you an object to be managed within a service?

The first case is about an information document published by the law firm Ridouts to assist the providers of care homes on their powers to exclude family members from visiting someone resident in the home. The full article is here, under the title, “ASK THE EXPERT – Managing The Relative From Hell”:

From the title onwards, the language is chillingly adversarial. “It is your home”. “The visitor, effectively has no rights”. “The expression next of kin has no meaning and carries no rights”. Regardless of its legal rightness, would you want someone with such an aggressive attitude to be running the home your loved one is living in?

Those often used expressions like “working together” and “experts by experience” hold no truck for Ridouts. The home is a thing that takes priority over the people living there and phrases like “It is your home” expose where the power lays. To quote Lloyd Grossman – “who would live in a house like this?” It’s not person centred care – it’s Basil Fawlty care.

The second story is even more alarming because it’s not about excluding visitors; it’s about excluding the resident! John Pring has written an excellent article describing the sorry situation:

Lakhvinder Kaur, a disabled woman in her twenties, explains clearly what she wants from her life: to live in her own home, manage her support and engage in a social life. Surely the aspirations of many people her age, disabled or not. For seven years Ms Kaur has been a resident in a care home. This means she has no tenancy agreement, no choice in the staff who support her, no choice in how she lives her life within the home.

What has Ms Kaur done that has prompted the home to try and evict her? She’s invited friends back for late night visits. Most people of her age do that all the time. She’s insisted only female staff attend to her personal care. In other words, she’s asserted her dignity. There are other indignities but in short, they all add up to a provider affronted because one of their (paying) residents wants to put their life ahead of the needs of the service.

These two stories may be extreme cases but I don’t think so. They may stand out because of the language and the degree of professional violence. But as recent campaigns have shown, there are so many insidious ways that a resident learns that their home is not really their home. Sadly most disabled people whether they be in supported living or assessment and treatment units will have stories of where the power really lies in their home.

Stories like these make me realise how lucky Steven is. Tonight we’re going to see a Queen tribute band. Because he employs his own staff, he hasn’t got to worry about not having enough staff on duty to enable him to go. He hasn’t got to leave the concert early for a shift handover. If he wanted to, he could invite Freddie Mercury back for a late night drink without fear of breaking the house rules. A normal life of a twenty something.

Others are not so lucky. Their home is in A home. That’s a very different kettle of fish.

Independenceonly happens if it fits in with the service.


Tenacious & Squatty

On Monday I gave an interview to the British Association of Social Workers. They wanted a human rights angle to include in their magazine in December to celebrate International Human Rights Day. I really liked the interviewer and he seemed to fully get my repeated insistence that for me, human rights only exist in the “small places”. All the little things in Steven’s life like popping out to buy a pie or choosing his daily DVD viewing wouldn’t be possible without his right to liberty and his right to a private & family life.

At one point during the interview, the interviewer described me as “tenacious” and I experienced a strong emotional reaction. After he left, I even had a little weep over the word. It was only later in the evening that I remembered why. I’ve got an old press cutting from the mid 1950s about my Dad. He was an above average non league player. He used to play inside right and was blessed with a blistering turn of speed. In the Gazette report he is described as “the tenacious Neary”. I’m very like my Dad in lots of ways and so unlike him in many others but I guess that throwaway comment from the journalist got me because it made a connection that I think my Dad would have liked.

The tenacious Neary became a bit of a nickname for my Dad for a while. Slightly sending up but with a great deal of love and respect for him. I can hear my Mum saying to him, “Oi Tenacious. When are you going to mow the back lawn?”

As a kid (and for much longer after) I always wanted a nickname. Most of my mates had one but I could never get one that stuck. Nicknames tend to be appointed by others: you can’t give yourself one and my circle seemed happy with me being Mark. It took me 45 years to get a nickname. Another thing me and my Dad had in common is that we both had our physical strength in our legs. He was quite trim above the waist but had the most enormous quads. They housed the power that propelled his speed and his tenacity. I never had the speed but I had the power. At the gym, I could do deep squats with pretty heavy weights. And that’s where my nickname came from. One morning, I was in the middle of a set of squats and a guy walked in and said, “Hey. It’s Squatty, putting us all to shame”. And the name stuck. For the next few years, in the gym at least, I became Squatty.

Assumptions. Back to the interview. The interviewer told me that his Communications Director wasn’t sure about doing the interview because, given my history, it might turn into “social worker bashing”. Correct me if I’m wrong but I don’t think I do social worker bashing. I bash Steven’s 2010 social worker but she deserves it. I think I’ve made some good online friends with social workers. It was an unfair assumption.

After the interview, and still a bit cheesed off over the bashing assumption, I went off to the gym. It was a Legs & Shoulders session. This is my fifth week of being back in the gym and to date I hadn’t done any squats. This is partly because I know I’m approaching hip replacement material and I’m not sure my hips are up to such a pounding. But moreover, it’s pride. Squatty’s squatting heyday is over and that’s a rather bitter pill to swallow. Foolishly I also didn’t want a public showing of Squatty’s demise. Another stupid assumption. I wrote before that, at 58, I’m invisible in the gym. It’s a different gym and nobody knows Squatty anyway. So ignoring the audience that only exists in my head, I loaded some piddling plates onto the bar and squatted for the first time since 2012. A bit less vanity and a bit more tenacity.

I remember a conversation with my Dad a few months before he died. He’d been out for a lunchtime drink with his partner and on the walk home, someone came up behind them and snatched her handbag. Instinctively my Dad set off in chase. Tenacious to the last but at 63, his speed had gone and the robber got away. He was cowed as he told me the story. Cowed by the deepest shame. It was very sad and no words could make it right for him.

I didn’t really get it at the time but I do now. It goes beyond pride. It’s a part of our identity. Part of our self belief. It may be built on ever shifting sands but it’s part of who we are. My Dad was Tenacious to the very end – just not in a way that he recognised of himself.

And Squatty will exist, long after I can no longer touch the floor with my arse as I complete my third set of squats.

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 takenĀ  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?