I Need A Whoopi

Short post.

I had my recurring dream again last night. I tend to have the dream, or a variation thereof, after I’ve had some great quality time with Steven.

I guess the dream is inspired by the film, Ghost. Unfortunately, in the dream there is no Whoopi Goldberg to connect me to the person I love.

The Dream:

It is six months after my death. Needless to say, the council have moved Steven from his home to an ATU.

He is heavily drugged and having difficulty walking but his spirit is hanging in there.

My sister and Wayne visit and Steven rips Wayne’s shirt as he pleads with him to stay.

Alan, the support worker, visits and as it’s a Wednesday, Steven wants a Wednesday morning disco, like they have done every Wednesday for the past four years. Unfortunately music isn’t allowed in the communal lounge.

Steven’s collection of 24 photo albums are in a skip outside the back door.

I walk past a charity shop and all Steven’s DVDs are in the shop window.

The end.

I have this dream at least once a fortnight.


Costner & McCubbin

The first two days of the latest 7 Days of Action campaign have been incredible. A collective coming together of humanity, rage, brains and fierce determination.

The campaign has received a tremendous boost from the brilliant BBC journalist, Jayne McCubbin, who managed to secure slots on two consecutive days to highlight the issues that we are campaigning about. On the first day, Jayne featured Tony Hickmott who has been in an ATU for 16 years and Eddie Hanlon who is currently in Newcastle ATU when his family home is in Bristol.

Today, Jayne focused on the excellent report from Lancaster University which raised the ever growing private provision of ATUs and in patient services. People with learning disabilities are now “exported” from their home areas and “imported” to the private facility. The report pulls no punches. Our children are commodities. We are in a new era of modern slavery.

Most distressing today was the images of the late Stephanie Bincliffe, locked in a cell for 18 months without windows, toilet facilities and fed through a hatch. She died, although the coroner judged that neglect didn’t play a part in her death. The providers were the Huntercombe group (Yes, them again) who gave the BBC a statement basically blaming Stephanie and her “complex needs” for her care and subsequent death. Stephanie’s mother revealed that Huntercombe charged £13000 per week for this “expert care”.

Huntercombe’s statement showed precisely the difficulty any campaign for change is up against. The dehumanising is complete. The providers are the victims of a person’s complex needs. The statement also reveals the chasm between attitudes to professional providers of care and families. Just imagine if I’d made this statement to the social worker at Steven’s care review last week:

“Yeah. For the last 18 months we’ve locked Steven in the box room. He never comes out: we never go in. I’ve cut a hole in the door to pass his food through. In the morning I pass a packet of wet wipes through the hatch for his personal care. He’s become ever so aggressive, so we can’t let him out of his room to exercise. And would you believe it, he’s put on 10 stone under this new care regime”.

Immediate safeguarding alert. Police investigation. Prison sentence for abuse and neglect. The newspapers will call me “The Most Evil Father in Britain”.

Yet, the Huntercombe Group can trouser £13000 for doing this, get a good CQC report and the Department of Health and NHS England will claim they are doing an expert job in difficult circumstances.

It stinks.

As if she wasn’t fabulous enough, after her film Jayne joined the presenters on the sofa for an interview and referenced my favourite film, Field of Dreams. She quoted one of the report’s authors Chris Hatton and said that the private providers adopt the Kevin Costner principle – if you build it, they will come.

All day long I’ve been reflecting on how we can break through this. Now that 52% of provision is in private hands, the task feels more difficult than ever. The barriers will be higher; the accountability much less.

Needing to switch my brain off, I put on Field of Dreams. Everyone remembers the “if you build it, he will come” line but often forgotten is that Costner hears two other messages:

“Ease his pain”.

& “Go the distance”.

And that’s exactly what we have to do.


A Friday Quiz

Here’s a little quiz for you to end the week. No prizes I’m afraid because I’m going to be skint again for the next four weeks.


At the beginning of March, I asked for Steven’s personal budget to be reviewed to take into account his growing push for independence.

The social worker informed me that Panel had approved the increase in April.

The Personal Budget is paid into account on a Friday, every four weeks, to cover the period starting on the following Monday. For example, the last payment was paid on Friday 26th May to cover the period 29th May to 25th June.

Since March, the new rate hasn’t been paid yet.

This morning, the social worker came to update Steven’s care assessment and confirmed that all the paperwork had long since been signed off by her department.

The Quiz:

How much was paid into the Direct Payment account today?

A. The new increased rate?

B. The old rate (still no increase)?

C. Nothing at all?

The Answer:


I phoned the direct payment team. She confirmed that Panel had agreed the new rate but there were two more steps the process takes before Steven gets paid. Firstly, Panel’s decision has to go before “Budgetry Approval” and once they have ticked the box, “Invoice Control” have their two penny’s worth.

I nearly cried. A cry of complete frustration.

24 weeks and counting. No promises that it will be paid in four weeks time for 24th July. Another four weeks of me having to make up the support workers’ wages by £125 per week.

Another little piece of my soul died this afternoon.

Trading & Trousering

Monday 26th June sees the start of the next 7 Days of Action campaign. The title of this campaign is “A Trade in People”. The writers have brilliantly delivered the evidence of something our instinct has long told us – that our learning disabled family members are extremely profitable cash cows in a care industry that has become more and more privatised and where our children are seen as only having a value when it comes to their bottom line profits. I’m not going to give away anything else about the material that will be published next week but when terms like “importers” and “exporters” are now commonplace in social care when deciding where someone should live, you know we’ve got the bottom of a stinking cesspit of a barrel.

The night before last I didn’t sleep at all. Partly the heat: partly my unease about Danny Tozer’s death. By the time the clock hit 3.30am I decided to give up on sleep and got up. I had to be somewhere at 9am and didn’t want to oversleep.

I found myself watching the Brian Blessed episode of Who Do You Think You Are. (If you can find it on iPlayer or YouTube, I really recommend it. The twist in the final five minutes will have you cheering and howling like a baby).

Blessed started his search by focusing on his great grandfather X3, Barnabus. In the early 1800s, he was a successful book binder and stationer and had a shop, just off the Strand in London. The family (by now with 4 children) moved to Portsmouth and for a year continued to thrive. Then the Napoleonic War ended and Barnabus’s career nose dived. Within a year, his status had gone from “bookbinder” to “pauper”. Then in 1822, within six months of each other, Barnabus and his wife died. They left 4 children: a 14 year old daughter classified on the workhouse records as “an idiot”, 2 sons aged 8 and 6 and a 20 month old baby. Within three days of their father dying, all four children were moved on a cart from Portsmouth back to London and into the workhouse at St Pancras. When Blessed asked the geneologist why they were moved so quickly, the reply was:

“If the children were seen as a financial burden to the Parish, the State would have been keen to move them elsewhere”.

Within a week of the move, the 14 year old disabled daughter and the baby had also died.

Just short of 200 years, has there been much change?

People aren’t taken to ATUs on a cart but the framing a learning disabled person as a thing to be exported is as strong as ever.

What next week’s campaign will present in horrific technicolour is that whilst the State (the exporter) still wants to rid itself of its financial burden, unlike 1822, there is now a huge army of importers ready to trouser millions from our families.

Also, unlike 1822, the exporters and importers don’t wait for a tragedy before they start to conduct their deals. Nowadays, they are hovering, waiting to exploit a situation that could be dealt with in the person’s home. A care provider pulling out of their contract, a father going down with flu, the person having a developmental crisis is worth millions to the money grabbing importer.

I discovered that the derivation of the saying “going to hell in a hand cart” came from the practice of moving people to the workhouse on the back of a cart.

What would the 2017 equivalent be?

Not The Voice

Can’t sleep.

Having watched the Dispatches programme about the BUPA care homes, followed by the Panorama programme on Grenfell Tower, perhaps that’s not surprising. What is keeping me tossing and turning though is the report today about Danny Tozer’s death in a Mencap run supported living home.

The piece in the York Press is here:


The story has distressing echoes of Connor Sparrowhawk’s death in STATT. Scroll down the article to the statement from Mencap and it feels like fucking Groundhog Day. Following a well established template, the Mencap statement has the same nauseating mixture of PR spin and damage limitation as Southern Health at their very worst.

The report points out that there was no immediate investigation by Mencap following Danny’s death. This is the charity that started the Death by Indifference campaign. This is the charity who issued the following statement following the Mazars report finding about the number of uninvestigated deaths in Southern Health services –


With the backdrop of such awful pain and loss at Grenfell Tower, one thing that I have found incredibly moving is the awesome directness of the community’s speech. Each person interviewed is profoundly direct and refuses to engage with the bullshit officialdom is pedalling.

We, in the learning disabled community need to take a leaf out of their book. We can’t afford not to. Last year, when I wrote about the Mencap run, Hillingdon care home getting a CQC “Requires Improvement” rating, I was blocked on Twitter by Mencap’s CEO. Que sera, sera.

Please Mencap. You can no longer claim to be “the voice of learning disability”. Your integrity is shot. Local branches may still do wonderful things for their communities but nationally, you have sold out. You aren’t the voice. In fact, you take away people’s voices. Because you have created an “expert” platform for yourselves, your opinion is regularly sought by the media and in taking up the media invitation, you deny other people the opportunity to speak for themselves. Your Harold and Hilda public statements cloak you with credibility. That creates an unfair illusion.

Please Mencap. You cannot be the voice of learning disability and employ the same shoddy practices that you openly criticise in others. Dangerously low staffing levels, barren lives for the residents are common themes in your residential services. You cannot promise in your response to the report that you are working on improving services and engaging with families because this is so basic, a charity of your standing should never get this wrong.

Please Mencap. I’m actually becoming quite scared of you. Having homes in my area, I feel frightened that my son will end up in one of them, one day. The disconnect between your words and your actions is starting to feel sinister. It’s not a good picture to present to your clients.

I’m not sure what I’m asking of you Mencap. I’m no good at calling for things, which is your modus operandi. I do feel that you cannot be the voice of learning disability AND a major service provider. You’ve already been fatally compromised. Perhaps you could decide where your priorities lie and put your eggs in just the one basket.

One immediate thing you could do Mencap. Danny’s family will not be entitled to legal aid to fund legal representation at his inquest. If you want to really experience what it is like to be voiceless, you could forego your own legal representation. Or alternatively, you could demonstrate you’re the voice of learning disability and fund Danny’s legal representation, so at least the inquest will be conducted on a level playing field.

I hope Danny gets his inquest. I hope the family get the truth and the justice Danny deserves.

Everything feels at a crossroads at the moment. We can take a right turn, further along the road to hell that allows Danny to die a needless death and the ensuing nightmare of trying to discover the truth amidst dreadful official stonewalling and intimidation.

Or we can take a left turn and future Dannys might have a life worth living.

Three Letters & An Email

Yesterday, I received three letters and an email. All of them came from the council. From four different teams who clearly don’t speak a word to each other.

Letter One:

The first letter was from the Housing Benefit department and a response to my complaint from six weeks ago. You may recall that I received a notification out of the blue from them, informing me that “due to a notification we’ve been alerted to”, they were stopping Steven’s housing benefit back to the date he moved into his new home in October 2016. When I phoned them, they told me that an “indicator” had appeared on their system, alerting them that Steven had never moved into the flat. By a strange quirk of fate, they sent out the first letter on the same day that the Housing Manager came to meet Steven for the first time.

Anyway, yesterday’s letter informs me that the overpayment was caused by and error on their part and has now been corrected. From allegedly owing £4080.57, Steven now correctly owes nothing. In fact, he is £23.60 in credit because I have paid his service charge in advance.

Letter Two:

The second cab off the rank was from the direct payments team. Three weeks ago when I queried with the social worker what was happening to the Personal Budget increase, she told me the paperwork was with the direct payments team awaiting processing. I wrote to them in an attempt to speed the matter up as it is now 22 weeks that the Personal Budget has been underpaid by £135. Today’s letter (3 weeks later) was just letting me know they have received my letter and the matter will be attended to in due course.

Letter Three:

Last Monday, I received a strange email from Steven’s social worker. Once again, this was a response to me chasing her up about the Personal Budget shortfall. She replied that the financial services team had been trying to contact Steven to do an up to date financial assessment (the last one was done in October 2016) but their letters had been returned “not known at this address”. It turns out they had been sending them to Steven’s old address. The following morning, I woke up with the thought, “Hang about. I’ve got all the post on redirection for a year”. If it had been sent to the old address, the Royal Mail would have forwarded it on as they have done with many other letters.

Was this a white lie? Was it just another blatant delaying tactic to hold off paying the additional £135? Trouble is, you can’t call these things out – you immediately become the villain. So, I let the matter go.

Yesterday, a letter arrived from the Financial Services team, informing me that they have done a new financial assessment anyway based on the figures I gave them six months ago. Fine by me. And the upshot was, another “no change”. No financial contribution towards the care package.

The Email:

Buoyed by the information in the three letters, I ate my breakfast believing that there was nothing now to stop the Personal Budget increase being paid. The next payment is due on 26th and they are bound to say it is too late to make that payment run but I started to foolishly feel confident that it might make the July run.

Then I got the email. Social worker wants to come and visit on Friday to update Steven’s needs assessment. It hasn’t been updated since the old social worker did a reassessment, the week Steven moved last year. Apparently the Personal Budget has been agreed by Panel but can’t be actioned until the needs assessment is brought up to date.

What has changed? Nothing in relation to Steven’s needs. He still has exactly the same eligible needs as he had last October. The only change is that the needs that I was meeting when I was at Steven’s are now being met by the support staff on the days I’m not there. Alan is helping Steven with his teeth cleaning on Wednesday and Friday instead of me.

Of course, it is a heap of bureaucratic nonsense. It is incompetence. It is the complete opposite of multi disciplinary working.

It is also shameful delay tactics. It will probably take the social worker a few weeks to write up her reassessment, so it now seems unlikely that I’ll  get the new rate of PB in July.

Oh, and by the way, every time I’ve checked whether the increase will be backdated to the original date of request, my question is ignored. I’ve already had to pay out £2750 from mine and Steven’s savings to cover the shortfall as the support workers still need to be paid. I might not get that back.


Don’t Keep Taking The Tablets

Last Friday was the sixth anniversary of Steven’s court case. It was marked by a short film from Rights Info and an article in Community Care magazine.

This week sees another anniversary. This is a more private one and is unlikely to receive the same fanfare. In my eyes though, it is an even more important anniversary than the High Court. I’ve often said myself that Justice Peter Jackson’s ruling saved Steven’s life but Thursday is truly a life or death anniversary.

It will be a year to the day that Steven last took any anti psychotic medication.

He was first prescribed risperidone a month after his 16th birthday. He was 26 when he stopped. At 24 we learned that Steven’s liver was failing and he would almost certainly face his death by middle age. At 16, Steven weighed 13 stone. At the clinic where his liver condition was diagnosed, he weighed 30 stone. It took two years, carefully reducing the dosage by .5mg every three months for eight years of damage to start repairing.

At his last check up, there were good signs that Steven’s liver is repairing itself. At a weigh-in last week, Steven came in at 19 stone. There is still a long way to go but the trajectory is positive.

Clinicians who prescribe anti psychotic medication to learning disabled people will tell you that they are correcting a chemical imbalance. THEY ARE WRONG. They are creating a chemical imbalance.

If you think this is an outrageous claim, think of where your head and emotional space was at when you were 16. And then compare it to where it was at, at 26. It’s two different worlds. Things need to be played out. Maturity needs to take its natural course. Life experiences, good or bad, need to be learned how they’re managed. Medication blocks or supresses these processes.

At 16, Steven was going through “transition”. Teams of new professionals were entering his life. It was the epitome of a coalition of chaos. In the ensuing ten years, Steven has moved home four times. He spent a year in an ATU. His mother died. 90% of the people he knew post 16 are no longer in his life. This is typical for someone with learning disabilities.

I met Steven’s old learning disability nurse last week. He is brilliant. So reassuring and reasonable. One of the noticeable changes in Steven over the last year is that his auditory senses are more sensitive. It takes him longer to string a sentence together. He is completely intolerant of external noise if he is concentrating on something. The other day we were enjoying doing a compilation tape together. Steven was focused and calm. The support worker’s phone rang. Steven tensed up. The support worker started talking on the phone. Within five minutes Steven had thrown the CD case he was reading and I had a cup of orange juice hurled at me.

This is not challenging behaviour. This is the chemical imbalance correcting itself. I’ve been told it can take up to two years for the brain to learn this new way of functioning.

It’s hard. I see Steven struggle with things that the medication would have dumbed down.

It’s called being alive.