Charity Begins in Committee Room Five

Press Release From Newport Pagnellshire Adult Social Care Majestum:


“From Sunday 31st July 2016, all social care services previously provided by Newport Pagnellshire Social Care Majestum will be transfered to the new organisation who have taken responsibility for service provision.

All services will now come under the umbrella (Ella, Ella, Ella) of our newly formed Charity – Total Integrity & Transparency Solutions (TITS).

The Charity’s newly appointed CEO, Deidre Trussell, may be a name familiar to our partners. Deidre was until this coming Sunday the director of adult social care for Newport Pagnellshire and went through a very thorough selection process for her new post (It’s a sign of real HSJ award winning leadership being able to butter three cream crackers whilst dancing the Macarena).

As befitting a Charity named after its two core values details of the CEO’s salary and perks will be available on our website when it goes live in 2023.

Deidre has already secured the provision of a decade’s supply of Spit hoods for all our supported living schemes for the cost effective sum of £50,000.00. It goes without saying that the total cost may rise to £7,000,000.00 over the term of the contract, if we can divert the governor’s attention to more important matters, like Brillo pad procurement.

We wish to say with total Integrity that the Newport Pagnellshire Bugle’s scurrilous report that Ms Trussell and the CEO of Restraint Clothing 4 Us, Bob Bibb were associates in previous careers is totally wide of the mark. The fact they shared a bowl of olives in a Greek taverna in 1997 is neither here nor there.

As we are now a Charity, all our income will come in the form of donations (Read that, Mr Taxman) and being a donation it must be completely voluntary. We are thankful to the local agency, Thugs For Hire, for its generous donation of £6.5m to provide all the local prone Restraint services. Service users will be asked for a donation for receiving this service, say perhaps £12000 per week. Failure to donate could result in a two hour session face down rather than 30 minutes.

I’m sure all our customers will have many questions about our new Charitable venture. We would like to draw your attention to our recently drawn up, Client led service level agreement:

1. Do not attempt to ask any questions of the Charity.

2. Repeated questioning will result in emotional blackmail, followed by veiled legal threats.

3. Send persistent questioners to Coventry (I.e. block them on social media, use their letters to line the Budgie cage etc).

4. Issue a press release implies the questioner has lost their marbles and our integrity and transparency is beyond question.

We’re learning fast.


The Lido Shuffle

I’ve had a dream. An ambition. I don’t like the phrase “Bucket List”.

About 10 years ago I had the crazy idea that I wanted to visit all the outdoor swimming pools and lidos in the UK. We were on holiday at the time and Steven and I had just braved the freezing cold water in Brightlingsea Pool in Essex.

It’s in my DNA. I was born and brought up in Southall and at the end of our road was Southall Recreation Ground and pride of place in the centre of the Rec went to the fabulous unheated open air swimming pool. From May to September, I was there every day. So many rites of passage in that place. Here’s a lovely Pathe News recording of some swimming lessons from the pool back in 1961:

In my bedroom, when I first got married, I had my three favourite swimming pool photos on the wall, from back in the day:

western super mare poolBlackpool poolmorecombe pool

They were taken at Western Super Mare, Blackpool and Morecombe respectively. All long gone.

There are exactly 100 outdoor pools left in the country – 75 of which are only open between May and September. My original idea was to do the Grand Tour in 2 years but that is going to be pushing it a bit. I’d have to do one a week. Perhaps it needs to be a ten year project. I’ve done four already: Uxbridge Pool, Hampton Pool, Shoalstone Pool in Brixham and the one in Essex.

There is something so natural about an outdoor pool. You don’t get it with the indoor ones. The noises are different. Steven gets very agitated by the metallic voices and noises in a municipal indoor pool. I always come out of an outdoor pool both mentally and physically invigorated. The smells are different too.

I’m going to start once Steven has moved into his new home (probably mid September). You’re welcome to join me. I’m not a strong swimmer, so it’ll only be a couple of lengths in each pool, a photo, an ice cream and perhaps a cup of Bovril. I plan to do a pictorial journal of the adventure.

Oh, and on the entrance steps, I’ll be playing The Lido Shuffle by Boz Scaggs.

If you’re coming, you’d better learn the words:


Is Social Work Human Rights?

The week before last I attended a conference called “Social Work is Human Rights”. It was a stonking do. All the speakers were informative, entertaining and passionate about their subject.

In the week that has passed since the event, I keep asking myself: “Is social work human rights?”

Of course it is. But there’s a very big BUT.

In my experience and knowing the stories of the guys from 7 Days of Action, plus the ones we’re gathering for the next push of the campaign, there are hundreds of dudes denied their human rights. In fact, their human rights don’t come into their current “care” plans at all. Rather than being the defenders of the dudes’ human rights, the State in the form of social services or the NHS, are the chief perpetrators of removing/blatantly ignoring their human rights.

I suppose it’s that same old conundrum that I’ve written about many times before – you’ve got to be seen as human in order to have human rights.

This week has been another shocking week for Jack Smith, the dude from Day Two of 7 Days of Action. You may recall that just under a month ago, Jack was discharged from the ATU. He wasn’t allowed to go back to his family home and instead was “placed” in a mish mash of a supported living/group home arrangement. It has been a total balls up from day one. This week, the police have been called to the unit twice and Jack’s mother found Jack repeatedly pissed (He has never drunk before this admission). Despite needing 2:1 support when he goes out, his mum discovered that Jack has been spending most of his money on booze and has been getting through several cans a day. Things came to a head yesterday and Jack was moved to another placement, a former respite home that was lying empty.

It’s difficult to know where to start in listing all the many things that have gone wrong in Jack’s care. But one thing is for sure, none of the decision makers can possibly see Jack as human. They can’t or they wouldn’t put him through such terror. They can’t or they might recognise his deep distress. They can’t or they might recognise their total abandonment of Jack’s Article 8 Human Rights.

I felt really low last night. We had been promised news about Steven’s housing by the end of the day but the end of the day came and we’re still none the wiser. No phone call; no email. When I get into that low place, I get bogged down with our human rights and how all the major decisions in mine and Steven’s life are either made or influenced by the State. For example:

  1. Where we live.
  2. What support we get.
  3. Whether I can work or not.
  4. Whether Steven is allowed his liberty.
  5. Whether he is allowed contact with family and friends.
  6. What money he is allowed to have for himself.

These are all pretty major life decisions. The stuff of life. The things that give us a foundation stone to our lives. Without these, or with these things at risk of being taken away, we have no base. We have no rights.

The only time, I get nervous of Steven not being seen as human is when we have contact with Services. Everywhere else, whether it be in Ranjit’s sweet shop, the cab drivers who take Steven from A to B, the people at the water aerobics groups, everyone everywhere see Steven as a human being. Services don’t.

He is a service user. He is in a placement. He accesses the community. He is case number 24991.


It’s been two weeks since I posted the news that Steven’s name was being out forward for a two bedroom, first floor flat on a new build development, very close to where we currently live.

Today, we got a bit of an update but still nothing definite. The “handover” from the property developers to the Housing Association will be happening mid August. Then the people who have been selected will be invited for a viewing. If we like the property and wish to pursue a tenancy, the Housing Association then do the necessary checks they are obliged to carry out. As long as the checks are okay, Steven is then offered a tenancy to sign.

End of September? October? Who knows.

The one thing I don’t understand is why neither myself nor Jayne, our housing advocate have got an answer to the simple question – “Do you put the names forward of more people than there are available flats?” Nobody will answer that question, which seems to us to be crucial. Basically, it means will Steven still have to go through a selection process, even after he’s viewed the property and expressed his wish to move in? If that’s the case, that will be very tough on Steven. It won’t just be a case of building his hopes up. It means he will be forced to enter into a process where there is no certainty about the outcome, something he always finds very troubling.

I’m clinging onto the fact that we’ve been told, Steven now falls into their “direct allocation” criteria. Also, the original email specifically mentions a “first floor flat”, which must be promising. Perhaps?

I’m not taking this personally. I don’t think the LA are being deliberately obtuse. I think it’s just another of their completely inflexible systems that takes no account whatsoever of the needs of an autistic person.

In the meantime, I’m still having to bid for properties on the LA’s housing options bidding list. This week, there was just one property in the whole borough – a 1 bedroom flat in sheltered housing for the over 60s. That’s the second week running, there was nothing to bid for. Even if Steven is still number 42 on their list.

Today, Steven had his six monthly psychiatrist’s check up and the brilliant news is that he’s lost a further four stone since the last appointment. Since, we started to reduce the medication over 18 months ago, Steven has lost 8 stone. We’re now in the final phase. At the moment he only takes .5mg every evening. The next step is to stop it completely. I know he will experience a reaction to the withdrawal – everybody does, so the timing has to be right. If we had a bit of certainty about the new flat, it would really help with that planning.

In the meantime, we’ll continue dangling.

Like a dingle dangle scarecrow with a flippy floppy hat.

The Six Monthly Check Up

Sorry. It’s a Groundhog Day post.

Steven has got his half yearly appointment with the psychiatrist on Thursday morning. I completely forgot the last one back in April. It’s a sign of how normal our life is now, and how free we are from professionals, that the last appointment didn’t register with me at all.

I don’t go to the appointments anymore. It’s partly since I got thrown out of the mental capacity assessment by the psychiatrist for “leading Steven” when I was trying to explain to the psychiatrist that Steven doesn’t understand the meaning of the word “better” in its comparative sense. Although, it’s not the same psychiatrist these days, my presence puts Steven at risk from them mis-interpreting him. When I’m around, Steven can always find something to talk about and I know that previous doctors have got intolerant as Steven starts discussing Sybil Fawlty’s wigs with me. So, I write a letter and leave the actual visit to the support workers.

Once again, that question comes up for me – why do people with learning disabilities get lumbered with a psychiatrist when they hit 18? Steven had a paediatrician until he was 16. The he went into that black hole for two years because children services end at 16 and adult services don’t start until 18. And then a month after Steven’s 18th birthday, we received an appointment letter to see a psychiatrist. 8 years on, I still don’t understand why.

I wrote my letter this morning. I mention how calm and settled Steven has been. I mention the massive breakthrough Steven made by finding the language and the insight to spot the triggers for his sensory overload. I ask whether it is time to stop all the anti psychotic medication. For the past six months, we’ve been in the final phase – .5mg once a day. That is so piddling, I’m not convinced it has any effect at all.

I know exactly what the psychiatrist’s post appointment report to the GP will say. Every single one for the last four years has said exactly the same thing. The first paragraph will comment on how nicely Steven is turned out and that his personal hygiene is good. The second paragraph will state that he cannot see any indicators of mental illness. The third and final paragraph will state that “it might be wise” to continue with the medication for the “time being” and to review in six months time. The cut and paste world of risperidone.

Needless to say, Steven cuts straight to the chase in his “why don’t you talk properly” way. I was preparing him for the visit earlier. He went away to think about and came back and asked:

“Steven Neary will talk to Dr T about…..?”

Steven doesn’t get why he has to go there. With the dentist, it’s very clear cut – “Dr F will look at Steven Neary’s teeth and talk about good brushing”.

With the GP, it’s less obvious because Steven’s history has shown him that the GP serves many different functions. The two that spring to Steven’s mind are: “Go and see Dr S and Dr S put a needle in Steven Neary’s arm”, and “Go and see Dr S and Dr S will talk to Steven about chicken pies and massive bellies”.

But he hasn’t got a clue what the psychiatrist will talk about. Probably because most of the language goes right over his head. He talks about “challenging behaviour” – Steven talks about “having my silly head on”.

It was in the psychiatrist’s office that one of my favourite conversations took place:

Psychiatrist: “Have you been out on your community programme this morning Steven?”

Steven: “No. Been swimming”.

One of the support workers talks about “The Gang”. In his eyes, it’s a gang that always has the threat of admittance to an ATU one clinical, bureaucratic decision away. The Gang, amongst others, consists of the psychiatrist and the challenging behaviour experts.

I’ve been putting out a call that instead of labelling people, “People with challenging behaviour”, we change that to “People in deep distress”. I know that might throw a hand grenade into The Gang and might push some inward reflection as to the part they are playing in the deep distress.

But probably not.

More than likely it will lead to a report that comments on the person’s “unkempt presentation”, overflowing logs of recorded challenging behaviour and the suggestion to keep taking the tablets and if nothing changes, “we can always try olanzapine”.

I won’t do an update post after Thursday’s appointment.

You’ve just read it.

Welcome To Cowley Andrea Leadsom

I’ve been getting into a bit of a tizzy all week about the appallingly offensive statement from Andrea Leadsom when someone asked for her wisdom on employing care staff. Here’s what she said:

“As an employer we’re not, let’s face it, most of us don’t employ men as nannies, most of us don’t,” she said. “Now you can call that sexist, I call that cautious and very sensible when you look at the stats. Your odds are stacked against you if you employ a man. We know paedophiles are attracted to working with children. I’m sorry but they’re the facts.”

There is definitely a shortage of male support workers in the industry and the former Prime Ministerial candidate is hardly likely to attract more with filth like that.

It’s all part of the dangerous woman’s belief system that fuelled her Brexit fire and one that had a strange appeal to many of the leave voters. Because let’s face it, now that we’ve got our country back and send all the overseas care staff back “home”, the industry would collapse. In nine years of advertising and interviewing staff to join Steven’s support team, there have only been two British applicants.

At the conference on Friday, we were discussing Ms Leadsom’s comments and one of the delegates remarked that she felt that two of Steven’s photos that I have posted have incredibly powerful images. It’s these two:


The delegate went on to say that they are powerful because it is extremely rare to see an all male support team. And, daring to speak its name, they are mostly black as well. Lots of conversations I’ve heard before and since Brexit has revealed that a huge number of people couldn’t give a monkeys about the East European workers. It’s the black faces they want shot of.

The four honorary Cowley men who support Steven are miracles that entered our lives. They have an interest in Steven that I have never encountered from any other support worker. I think they love him. Steven is a very lucky young man to have that love and I am blessed that they are around.

It would be hard for us to have female support workers. Steven is assessed as needing 2:1 when he is out in the community and since most of his activities involve visiting a changing room, it wouldn’t be practical or safe to have a female worker for those times.

At the ATU, Steven got into terrible trouble by asking for male staff to do his personal care. It was never respected. One day I arrived for a visit to be told that one of the female staff was down in A&E. It was an all female rota that morning and she had drawn the short straw and was allocated Steven’s bathing. When she tried to put his eczema cream on his groin, Steven kicked out. She tripped over the rug in his bedroom and hit her head on the door. It could all have been avoided if Steven’s wishes had been respected.

When Steven came home, the support agency we had at the time tried to introduce a female worker. The plan was that she would be used to teach cooking skills every Wednesday. It was pointless and also meant I had to sacrifice hours elsewhere during the week to fit her into the schedule. It wasn’t even a politically correct move – she was the sister of the agency’s owner. Just recently, both Steven and I have been learning to make cakes and pies under the instructions of the chap sitting between Steven and me in the spa pool.

Ms Leadsom – men can care. Men can love. Men can show empathy without getting their dicks out.


The Human Equilibrium

Yesterday, I spoke at a conference in York. The conference was titled: “Social Work is Human Rights”. One of the speakers was the excellent Gavin Harding from NHS England Transforming Care team. Gavin, who has a learning disability and has spent time held in an ATU, is also the Mayor of Selby ( He gave a rousing talk and ended with the great parting shot: “You lot don’t get placed in ATUs. Why should people with learning disabilities?”

Gavin’s talk made me hastily change how I was going to present mine. I usually tell the Get Steven Home story as a chronological narrative. I still did that, to a fashion, but bearing in mind the title of the conference, I wanted to stress more than ever the “humanness” of Steven. How a normal human being with autism could get caught up in a horrendous and dangerous situation for a year of his life. Why should he end up in an ATU, when you lot don’t?

On the train I home, I was feeling pretty good and then foolishly clicked on the following link:

A 28 bed (!!!) unit for people with autism has been put into special measures after failing another CQC inspection. Lots of questions started floating around my head:

  • How did those 28 people end up there?
  • How will they get out and start to leave fulfilling lives like Gavin and Steven?
  • How do the owners get away with it?

This morning, I found the actual CQC inspection report. I’m not normally lily livered but I could only get about 2/3rds of the way through it. It is distressing reading ( A few lowlights:

Five patients were prescribed high doses of antipsychotic medication without this being identified and there were no monitoring guidelines for high dose antipsychotic treatment. There were no monitoring guidelines for rapid tranquillisation.

How can this be? Giving people medication that they haven’t been prescribed! Isn’t that a crime? Please don’t give me the argument that they probably lack the capacity to decide about their medication. Without prescription from a clinician, what makes this any different from them being given heroin?

We reviewed the legal files for five patients during this inspection. Of these, four contained evidence of periods of detention without this being legally authorised, whereby the patient was not subject to detention under the Mental Health Act or subject to a Deprivation of Liberty Safeguards (DoLS) authorisation. The patients had not been aware of this, had not been allowed to leave and had continued to be given treatment. 

How can this be? Illegal detentions. Don’t blame the MHA, MCA or DoLs for this. The residents won’t get anywhere those pieces of legislation because the management of the unit don’t want them near the legislation. It is a conscious decision not to apply the law. Where does this law breaking go from here? Bear in mind, this was a CQC report and they are only adopting special measures, can one call in the police to investigate at least two possible breaches of law? Doesn’t seem much point in taking out a safeguarding referral – the professional safe guarders will be from the same organisation that commissioned the service and sent the 28 people to their doom.

On all the wards, the kitchen areas were locked and so patients had to ask staff for access to the kitchen. This meant that patients had no access to drinks except when staff let them into the kitchen. Some patients told us they tended to purchase and keep snacks and drinks in their bedrooms but this was dependent on finances and access to leave.

The above may not be illegal in itself, although it probably falls into the deprivation of liberty category. What it does show though is the crux of all this. The owners of Bigfoot Hospital (WTF) are a company called Equilibrium (why do these companies have such darkly ironic names? The 28 residents can’t possibly have any equilibrium in their lives, although there is probably plenty of equilibrium in the owner’s bank accounts). The big feet at Equilibrium can’t possibly see their residents as human. And if you don’t see somebody as human, then their human rights aren’t going to figure on the radar.

They’re not alone though. The UK has a weird relationship with human rights. There is a deep unease and suspicion about the Human Rights Act. Me and several other people with positive human rights stories were plastered all over the London underground last year and on billboards throughout the country. However, for most people that I speak to outside of the disability world, human rights begins and ends with Abu Qatadar and Theresa May’s cat story. This Daily Mail type distrust allows companies like Equilibrium break the law. They can treat their residents with contempt because they hold the law that protects people with contempt.

For people who have followed the Justice for LB campaign, the actions and responses of Equilibrium must ring a few bells. It’s the same attitude that allows Southern Health, despite report after report, inquest after inquest, governor’s resignation after governor’s resignation, to treat their public with sneering, arrogant contempt. The Chair and CEO can respond to fears expressed by My Life, My Choice that they can’t use Southern Health services because they might die, with talk of learning lessons, action plans, people and family engagement. It’s all bollocks. It’s further contempt. Because out comes another report this week of another death in their service and the company statement is exactly the same as all the other statements they have made in the last four years:

It’s not enough to be human to have human rights.

You have to fight a system that refuses to see you as human.

That’s why you lot never go to ATUs.