Mightiness & Maggots

I’ve been booked to give a talk tomorrow morning for one of the big care agencies in our neighbouring borough. It was arranged ages ago and I contacted them today to double check the arrangements. It was a good job I did. I assumed that they wanted me to do my Get Steven Home talk. They didn’t. They heard that one two years ago. They want something more specific to their audience and have given me the title “What Makes A Good Support Worker”.

Coincidentally, I’ve been collating the stories for Seven days of Action and one of the excuses that comes up time and again as to why people stay so long in ATUs is that they can’t find appropriate, trained staff to support the home care package. I always feel my hackled being raised whenever I hear that excuse.

My job specification consists fundamentally of five “qualities”:

  1. Be interested in Steven.
  2. Be authentic
  3. Engage
  4. Be funny
  5. Be professional.

In that order. Steven doesn’t need manual handling, so you don’t need to go on a manual handling course. I can run Mental Capacity Act training for the support workers. In fact, we just had a very lively session on the five principles. And I don’t need someone who can write a comprehensive risk assessment of the Mencap Pool or the gym.

One story that I will tell tomorrow to illustrate all of the above.

For Steven’s recent birthday, I managed to get him the missing Gladiators VHS tape that he was missing from his collection. We have tapes with five of the eight first round heats from the 1993 series, the four quarter final episodes and the semi final and grand final. Amazon came up trumps with a VHS that contained heats 6 to 8 from the 1993 series.

Gladiators is Steven’s “centering” viewing on a Thursday morning. Each day, Steven will watch an episode from a favourite TV show after his breakfast and it focuses him on the day ahead. We’ve learned over a number of years that if Steven has unfilled time first thing in the morning, he can get very agitated and a meltdown is never far away. So, Wednesdays is an episode of Mr Bean, Friday is Fawlty Towers etc etc. Steven has had the same support worker on Thursday mornings for the past three years.

So there we were on birthday morning, Steven slips in the VHS and up pop contenders that we are familiar with from the later quarter final programmes. Michael, the support worker, immediately said:

“Hey Steven. Look who it is. It’s Sirleen – the mighty maggot”.

A huge grin spread over Steven’s face. He got up and started doing his Tigger bounce around the living room. He was excited because the support worker had recognised the contender and in that recognition, Steven’s and Michael’s worlds met. It was beautiful and very moving.

Someone told me a long time ago that if you wait for someone with autism to enter your world, you’ll be waiting a bloody long time. Best thing to do, if you want to connect, is to enter their world and then, you might engage.

For the past three years between 7am and 8am, the support worker hasn’t been on his phone. He’s not been reading the paper. He has been interested enough in what interests Steven, engaged enough, to recognise Sirleen Clark – the Mighty Maggot.

That’s what makes a good support worker.

Gladdies

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Be A Ninja. Do The Ninja.

This is a shameless plug alert but I hope you’ll forgive me.

A few weeks back, I was invited to join a social media group that is made up, in the main, of mothers of children who are trapped in ATUs. Despite some good stuff going on behind the scenes, it was felt that an extra push was needed to bring these people home, or to a new home of their own. Out of several discussions, Seven Days of Action was born.

Seven Days of Action will start on Monday 18th April and will run each day until the 24th. To anchor the campaign, a blog has been produced. Each day during the week of action, a different story will feature on the blog. Five of the stories centre on dudes who are currently being held in ATUs, one day will be devoted to Thomas Rawnsley and the final day will look at the stories of some people who are now home after spending years in ATUs.

To get a brief flavour, here is a link to the home page of the blog, which includes some songs and films about life in an ATU:

https://theatuscandal.wordpress.com/about/

We have also published early, a poem by Nina Ni, whose son Tianze, has just been moved to his fourth ATU in two years. One day, just before Christmas, Nina went to visit Tianze. He was upset as he wasn’t allowed to come home for Christmas. All visits were supervised and the family weren’t allowed to go out into the grounds. At one point, Tianze became agitated and five members of staff pinned him down on the floor. His parents were immediately ordered to leave. As she was being pushed through the door, Nina looked back at Tianze. The look in his eyes, inspired this poem:

https://theatuscandal.wordpress.com/seven-days-of-atu-action-a-mothers-words/

The week is called Seven days of Action and boy, do we need some action. We will be attempting to get a lot of press and media attention for the blog and the stories it contains. If you have any press or media contacts, please send the link to the blog to them and ask them to get involved.

For families, friends and allies – we need you to pass on details of the action week to as many people as possible. Write to your MPs. Contact your local charities. Badger your local commissioning groups. Invite as many people as you can think of to step up for some Ninja action.

For social care & mental health professionals – please put aside an hour in your team meeting that week and discuss the stories in the blog. Reflect on your own practice. Consider what you could be doing to help these people return home.

For legal people – likewise, please put some time aside to look at the legal issues that these stories throw up. Human Rights don’t seem to be on the radar in any of the cases. Please consider how best these families can challenge the detentions.

For academics – contained in these stories are plenty of material for some pretty meaty research projects. Is this something you could contribute to the campaign?

For advocates – Is there any support or advice you can offer to the families? As I help compile these stories, decent advocacy seems to be sorely lacking in several of the cases.

We can all do something.

Please pencil the 18th April into your diaries and sign up to follow the blog. It won’t be an easy read. The stories are horrific in their brutality. But they need to be read and heard and acted upon.

Thank you.

And finally, some tidy Ninja steps for you all to practice for Seven Days of Action:

The Responsible Clinician

I’ve got a bit of a theory about multi disciplinary teams. It’s this. The more people in a multi disciplinary team, the smaller the concentration of power. In fact, I believe there’s quite a bit of evidence that shows that although the team may consist of dozens of professionals, the power is often held by just one person. And often that person is the responsible clinician. You hear professionals bang on about “flattened hierarchies” but that’s normally a fog hiding a lethal, centralised power base. I remember the uncomfortable hour in court when the social care manager, armed with four A4 landscaped charts stapled together, trying to explain to Justice Jackson how the decision making process worked. After an incomprehensible narrative, Justice Jackson threw his arms in the air and cried “this is impenetrable”. The Judge voiced what everyone in that courtroom was thinking – the explanation, rather than illuminate, clouded.

A couple of examples. I’ve written recently about the plight of Jack Smith, trapped in an ATU in Birmingham. Jack had been looking forward to some home leave over the Easter weekend. Understandably, his hope carried a huge anxiety and on Wednesday he found that anxiety impossible to contain. The Responsible Clinician, the psychiatrist, immediately cancelled Jack’s home leave. Her rationale? ” To teach him about boundaries”. Eve’s posts became increasingly heartbreaking as she reported how Jack went into a cleaning frenzy, (his room, the communal dining room) in an attempt to win the psychiatrist over. At the time of writing, this hasn’t been successful. Despite the recent support Eve has received from NHSE, everyone shrugged their shoulders and said they couldn’t intervene. The CCG, the LA, the social worker, all bowing to the power of the psychiatrist. I find this incredible. When the 15 odd members of Jack’s multi disciplinary team turn up for the next review meeting, do none of them question the wisdom, or psychological validity of this decision? It would appear not. One person’s decision is final.

I sat in court at LB’s Inquest for the tail end of Dr Valerie Murphy’s evidence. She was the psychiatrist and responsible Clinician. It was Dr Murphy, who had decided that Connor hadn’t been having seizures and she was clinging onto that position in court. Her position led directly to Connor’s death. She was followed in court by another psychiatrist from the MD team, although she didn’t carry the power of Dr Murphy. Despite the obvious coaching she’d received from Southern Health’s consultants, her evidence was both deeply uncomfortable and infuriating. It was clear that she disagreed with the responsible Clinician but didn’t have the bottle to challenge her. Another position that led directly to Connor’s death.

During his time in the ATU, Steven didn’t have a responsible Clinician. It wasn’t run by the NHS. Justice Jackson expressed his constant frustration in not being able to unravel who made the decisions. The Hillingdon witnesses tried to present a united, clouding front. That somehow things moved along with a momentum that had nothing to do with any one individual. I’ve never bought into that presentation. Clearly, decisions were made. Hundreds of them. The two big ones were, (1) Steven must be held in the ATU and not come home, and (2), he would be moved to the hospital in Wales. Somebody, at a MD meeting, must have spoken those words, made those suggestions. One thing is clear from the social care records, is that if anyone in the MD team disagreed with any of the decisions, they were removed from the team. The learning disability nurse, the support agency manager show up in the many minutes as challenging decisions. They then mysteriously disappeared from future meetings. My belief is that all the major decisions were made by the social worker.

But this throws up two different propositions. Dr Valerie Murphy was obviously an egotist, with a terrifying self belief. Plus, in terms of her hierarchal position, she held an enormous power. People speaking up against her would have a lot to lose. She could end careers. It was quite different with Steven’s social worker. She was a long way from being the most senior member of the MD team. But I know other members of that team, both above and below her, and they were very weak individuals. I’m not just talking about people prepared to compromise their integrity. It’s something more basic than that. Fundamental human weakness. You may remember my dream about the social worker on her pink inflatable, sailing down The Thames. Now, a pink inflatable is not exactly the most robust material on which to build your power base, but if your followers are weak, it serves its purpose.

I had a client who I saw for several years. He was a lovely bloke who had collected several mental health labels over the years. He had an MD team “working” for him. I saw him, first and last, as a survivor. Medicated to the eyeballs, he continued to hold down a full time job. His Responsible Clinician didn’t see him that way at all. She saw him as an “unstable, manipulative man”. From her reports, she obviously didn’t like him. My client was terrified of her. Every encounter he had with her brought on a dreadful threat of being sectioned, of losing his job, of losing his independence. She once told him, ” I have more say than your manager over whether you keep your job”. When it came to his three monthly appointments with the psychiatrist, my client would meet me the day before for some “coaching” (I’d hear myself saying – “You can’t tell her that. She’ll have your guts for garters) and we’d meet the day after for a debriefing. In the end, she won. He swore at her. She doubled his medication. This made driving unsafe. He couldn’t get to work. An example of the Responsible Clinician acting totally irresponsibly.

I don’t know the answer. But as they say, power corrupts. And when all the power is in the hands of one individual, we are in very rocky waters. The Mental Capacity Act is no help in these situations because the Responsible Clinician will be using the full clout of the Mental Health Act to wield power and silence dissenters. And we can’t seem refuge in Carl Rogers and person centred powers.

My client believed in karma. It was one of the things I used to try and dissuade him from discussing with the psychiatrist. Perhaps he was right. Perhaps, we just have karma as our only hope for equalisation.

£18

First the good news. I got the outcome of my carers assessment yesterday and for the first time in seven carers assessments, it actually produced an outcome. It didn’t stop with signposting me to services that I might find useful.

I requested the assessment with only one aim in mind. I wanted an extra respite night. Not to do anything flash with (Night time potholing, dinner dates with Jay from Bucks Fizz). No, it was just to try and get another night’s sleep. So, all my focus during the questioning was in trying to demonstrate how useful an extra night’s sleep could be. I tried to pass all the other questions through a sleep filter. “What is your exercise regime like?” “Too knackered”. That sort of thing.

Yesterday, I received an email from the Carers Champion with a copy of the full assessment and the decision in a paragraph at the end. I’ve been awarded £18 per week, subject on Panel agreement to what I decide to spend it on.

£18 is a quarter of a night shift rate. I could use it to cover 1 hour and 55 minutes each week, or save it up and get an extra night’s sleep once a month. If panel agree that is wise use of public funds.

I think I’ve been RAS’d. £18 seems such a random figure. It doesn’t bear relation to anything.

Here is the key paragraph from the accompanying letter:

“The Carer’s Assessment does not generate a budget amounting to the cost of an extra night’s respite per week, but I have sent the Carer’s Assessment to my line manager, which he has signed off and agreed. You do have a Carer’s budget of £18 per week, this is only indicative and subject to agreement at panel. However, from our discussion the other week, you may wish to consider requesting use of this budget for something like a gym membership via your own direct payment?”

Does that make sense to anyone? I have no idea what it means. I’m guessing that I’ve been through the RAS machine because of words like “generate” and “indicative”. The decision box on the form says that I’ve come out as a “Band Three”. What does that mean? How many bands are there? Is £18 the standard, set figure for all of us Band Three Carers? Who knows?

It’s funny how gym membership came up. I mentioned a couple of times that I haven’t been to the gym for ages but I didn’t ask to have my gym membership fees covered. I don’t want them to. If I want to go to the gym, I can afford that myself. I wanted a respite night.

So, what else could the £18 be used for? If it’s for any kind of night time treat (?), then there isn’t really £18. Supposing I asked Panel if I could use it to go to the cinema once a week (Not that I want to), I would still have to pay a carer to be with Steven whilst accessing the Odeon. That’s £10 for the support worker’s wages. That leaves me £8. Popcorn is out. I could sneak a Kia Ora from home. And I’d have to leave halfway through the film as the “award” would only cover the support worker wages for an hour. (I might use the first £18 to buy a pair of roller skates as I’m going to have to move myself to get there and back within an hour). Basically, whatever I decide to spend it on, I’ve got £8 to play with because anything I chose will require paying a support worker during my absence.

What happens next? I need to report back to the social worker what I want to use the £18 for and she will take my decision to Panel, who will decide if my decision is worthy. And whilst this bureaucratic steamroller trundles along, I’ll try and catch 40 winks whenever, wherever I can.

Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

 

Update: 19.3.2016 18.49

I’ve been rereading the carers assessment. I don’t want to, obviously. But it’s a bit like spotting a dog turd on the floor in Burger King. You want to get on with eating your Whopper but your eyes keep getting drawn to the package.

There is one glaring omission from the 7 page form. No mention anywhere despite me bringing it up at least four times during the assessment. My time each day/week is comprehensively detailed but there is no account at all of all the time I spent managing the Personal Budget and the Deputyship stuff. It’s a huge chunk of time every week. Take this week. I spent 90 minutes of my respite on Monday phoning the tax office. The hour I have free before work on Wednesday was spent meeting the lovely lady from DASH who helped me sorting out the new tax codes. Today I received letters from HMRC superseding the tax codes they sent me last night, which meant I had to calculate the figures all over again. Oh, and half an hour on Friday phoning the Office of the Public Guardian to pay Steven’s annual supervision fees. Actually, quite a quiet week as I’d got ahead of myself last week and did the council’s monthly Personal Budget audit. None of this is recorded, so presumably is not factored into the RAS system. Daily detail of when I eat but nothing about the mountains of bureaucracy.

It annoys me because it sort of perpetuates a lie. The burden on the carer in having a Personal Budget is never mentioned. You read a lot about the benefits for the person receiving the budget but the schmuck carer doing all the admin is airbrushed out of the story. Like my assessment.

Call me a stubborn Sidney but I want this acknowledged and recorded in the final document.

I could be waiting a few more weeks before I get my £18.

Unwise Decisions, Isle of Wight & Jack Smith

Yesterday was a very confusing day if you happen to be the parent of someone with autism and learning disabilities. I had quite a busy day but several times popped into social media to follow three events that were unfolding. I went through a kaleidoscope of feelings from irritation, frustration, hope to deep sadness. 24 hours on and those same feelings are still sitting firmly in my melting pot.

It was Mental Capacity Action Day and a number of professional groups had joined up to focus on Principle Three – Unwise Decisions. Subsequently, Twitter was awash with photos of people holding up cards with an unwise decision they had made at some point in their lives. There were some very funny ones and it was good to see people able to send themselves up. But there was something about the exercise that took me back to last year’s NHS Q Initiative and the “writing on your underpants” exercise. A jolly jape, possibly raising awareness of something much bigger but how does one move from underpants (or unwise decisions cards) on to the more important stuff? I didn’t see one card that had the unwise decision, “I didn’t authorise additional support for the family during the crisis, so the dude ended up in an ATU”. Or, “I didn’t challenge the contrivance of a mental health section, so the dude remained in an ATU for six years”. I know. Call me a party pooper but I can’t see how the jump is made from an awareness game into something more valuable for the people the MCA is intended to be for.

At the same time, a safeguarding conference was taking place on the Isle of Wight. Two of the guest speakers were Sara Ryan and Graham Enderby. There was life tweeting of the event. I’ve had this conversation with both Sara and Graham before but it left me questioning again, how does one make a leap from hearing a horror story at a conference to changing professional practice. Does hearing a family member tell their story cut the mustard in terms of raising awareness of the MCA. I sometimes wonder, especially with Graham’s and my story whether the audience are cushioned by the fact that the story has a happy ending. Hopefully without sounding too arrogant, I think both Graham and I are good speakers – we can take people on an emotional journey and people will rage and laugh and cry. But the stories are in the past and that creates a protective distance. I hate to think it but from time to time, I wonder if it is the same with Sara’s story too. I wonder as more horror happens post inquest and Mazars, another cushion appears. The bad guys become so obvious and the focus that we can forget the obvious question for the audience of professionals – what the bloody hell was Connor doing in an ATU? Where was his Mental Capacity Act? Where were his Human Rights? I hope this isn’t too jaundiced but as I say, it pops into my head every now and again. Whatever you hear in Harry’s, Steven’s or Connor’s stories, the narrative is awash with unwise decisions that wouldn’t make their way onto a held up card.

And then the killer. Eve Smith got back from her son Jack’s review meeting and posted on Facebook that his Mental health section has been extended for another two months. No matter that he has been having weekend home visits for several months now without problem (apart from the distress of going back to the ATU). The section has been extended because there is nowhere for him to go. Whilst the CCG are footing the bill for the ATU, the LA are dragging their feet about setting up a home support package. The plan (!) is that Jack will get his own flat but another of the delays is that they are unable to find suitable providers trained in autism. (There’s a simple answer to that one – get some people who are able to be Jack trained). So, in the meantime, the section is renewed with no concrete plan for the next two months, increasing the possibility that in two months time, it will be extended again. Later in the evening, Eve posted about her nightly phone call from Jack. To deal with his distress over the bad news, the staff had given him extra medication. Medication that leaves him disorientated, confused and incontinent. Where is Jack’s MCA?

A couple of months ago, I posted the idea about assembling 3500 Ninjas to try and spring the 3500+ people from ATU purgatory. Ninjas with the MCA and Human Rights embedded into their capes. The outcome reminded of that episode of The Good Life when they collected their first harvest. The episode starts with Tom and Barbara in the pub and all the pub regulars pledging their support to help gather the harvest. By the end of the episode, Tom has done his back in and the garden is a quagmire after a bad storm. All the pledgers have disappeared leaving only Jerry with a broken leg and Margo in a yellow windsheeter pitching in. I got 82 Ninja pledges. That was a good start. The MCA in action. But nothing since. Dreadful films like the one Leo Andrade took of her two sons having a cuddle with the iron gate of an ATU between them don’t seem to be enough to rattle the necessary cages. I don’t know what it takes.

Then again, I am open to the probability that the Ninja plan may have just been a shit idea.

I don’t know how to join the dots. I don’t know how to move from people holding up cards about the unwiseness of having a fourth pint in the pub to getting Stephen Andrade’s human rights respected. I’m beginning to think it may be impossible.

In the meantime, I’ll hold up another card. This card has a photo of Jack Smith at his home visit last weekend enjoying a cooked breakfast:

Jack1

And just ask again. What can the MCA Awareness day do for Jack?

 

Update 1.15:

Just heard from Jack’s mother that she’s been phoned by the Unit who have changed their “care plan” in response to Jack’s distress over yesterday’s decision. For the foreseeable future, all home leave has been cancelled.

I ask again. Where is Jack’s MCA?

Beta Blockers & Well Being

It’s a respite day. And I havent felt as low as this for a long time. Low for myself and low for the world (not that the world is any of my responsibility).

I’ve been trying to process the events of the weekend, in particular being blocked on Twitter by Jan Tregelles, the £130k+ per year CEO of Mencap. I’m in good company because she blocked Sara Ryan, George Julian, Neil Crowther & Justice For LB as well. Yesterday, a well meaning chap from the Wales branch of Mencap suggested that all the people who’ve been blocked should reflect on the part they played in Jan’s actions. I’ve tried. I’ve really tried to have an objective reflection but I’m still left with the thought, “what a total shit”. Laying in bed last night, I dreamed up a new sit-com, black comedy called ” Cut From The Same Cloth”. I had been rewatching Victoria Wood’s brilliant play, Pat and Margaret, about the two sisters, separated when they were 10. “Cut From The Same Cloth” starts with the same premise, only in this story, the two sisters go on to have identical careers as award winning CEOs. They, Jan and Katrina, will do anything to protect themselves and their empires by most notably, crapping all over the poor sods who enable their empires to exist. Sorry nice man from Wales – that’s about as objective my reflections can get at the moment.

I contrived to start my respite early today as I had to phone HMRC for their help with the support workers’ tax returns. HMRC have sent me new tax codes for two of the support workers and I haven’t a clue what they mean. So I got away from Steven’s at 10, instead of 2. I was on the phone 85 minutes. I spoke to three different people in three different teams, in between several choruses of Vivaldi. The last person said, “Oh. What you need is our dedicated carers support helpline. I’ll put you through”. 17 minutes later the same woman was back on very apologetic that nobody in the dedicated carers support team was available but as stated in the dedicated carers support service level agreement, a dedicated carers support advisor would get back to me by 1pm on Wednesday. I tried explaining that I only have respite today and for the rest of the week, I’ll be up to my wrists in, er….  dedicated caring. It made no difference. The realities of being a carer clearly not fully grasped by the dedicated carers support help desk.

This is what respite is like. Huge chunks of it disappear in dealing with the bureaucratic bullshittery of Personalisation.

Whilst on my 7th track of Vivaldi, my mind drifted to the carers assessment the other week. All those questions about what you’d like to do with some time away from caring if Panel agree to allow you to have some. Courses. Coffee mornings. Zumba classes. Pampering afternoons. One thing that you’re not asked about is whether you’d like to do sod all. I’ve scoured the Care Act and all its references to Carers’ well being and nowhere can I find any mention that a carers well being might be improved by doing sod all. That’s all I want to do for the rest of the day. Sod all. Laying on the sofa in my flat, perhaps watching The Lady In The Van, but ostensibly doing sod all. It would improve my well being no end.

There is a link to this seemingly random rant. I think I can join the dots. There is a direct hierarchal line that goes from me on the phone to HMRC and Jan & Katrina. Their empire is built from it. For them to exist, a huge Maelstrom of pointless activity has to be taking place beneath them. They inflate in direct correlation to the amount of nonsense those beneficiaries beneath them get caught up in.

Because here’s a thought. If my well being outcomes were measured by my capacity to do sod all, and just live, just be, then their entire empires would come crashing to the ground. There would be no need for Jans and Katrinas.

Cue end credits with final score by The Brighouse Brass Band.

What Makes A Man

Back in 2000, Westlife posed the question “What Makes A Man?” They had to man up pretty quickly because they were pipped to the Christmas Number One by Bob The Builder.

This morning, Steven and I were discussing his upcoming 26th birthday:

“Birthday on Saturday Steve”.

” Steven Neary is 26 on happy birthday”.

“You’re getting quite an old man now Steve”.

” Steven Neary has had lots of men’s birthdays. No boy’s birthdays since Moorcroft”.

“Do you like men’s birthdays Steve?”

“Yes. Men’s birthdays are massive groovy”.

” What is best Steve – men’s birthdays or boy’s birthdays?”

“Men’s birthdays”.

” Men’s birthdays are best Steve cos…..?”

“Cos men get Mr. Bean DVDs for men’s birthdays. No more Fireman Sam videos for boys”.

That, Kian Egan, is what makes a man.