Calm Songs – Not For Silly Heads

I’m not sure if it was a throwaway remark or a gauntlet being thrown but on Twitter the other day, somebody suggested that Steven compile the playlist for Sara and Rich to help them with the inquest which starts next week.

Steven knows what happened to LB and I told him that we needed to chose some songs for LB’s Mum and Dad who had a horrible job to do next week. I suggested that he chose songs that “keep us calm and make us smile”. Double checking, that he’s got the criteria, Steven asked, “Not songs for silly heads?” (Silly heads are what we have on during a meltdown or times of big anxiety).

Well. Steven’s turned this into a major project. The following morning, he woke me up at 5.30 to announce – “Dad – we’ll have Hello Dolly on LB’s music. Louis Armstrong singing”.

So, without further ado, here are Steven’s top 10 songs to keep us calm whilst we’re doing a horrible job.

  1. We’ll start with a bit of Agnetha. She doesn’t give Steven a silly head but she does make him go a bit soppy.

2. Up next, The Pet Shop Boys. I asked Steven why this was a calm song and he replied it was because Chris Lowe has got a nice jacket on.

3. Now, some Style Council. Because they’re singing on a bus.

4. As teased earlier, here’s a bit of Louis.

5. There has to be a Mr Bean connection. Here’s a track from Mr Bean’s Holiday.

6. Steven chose a bit of Beautiful South. Because ” Paul Heaton is massive calm on the elephant”.

7. Steven does like a man in a frock.  It was either this or Dame Edna doing Waltzing Matilda.

8. I knew he would chose this one. Don’t forget you have to change the words to “Al in his army tank” and “Betty Hislop”.

9. Some Coral. Because we sang this on the balcony of the Uxbridge house the day the Olympic torch came by.

10. I love it that Steven loves this track. His support worker taught him what the African lyrics mean. It’s a staple of the Wednesday morning disco.

11. One for the road. Steven’s not that impressed but he knows it makes his Dad smile.

We’ll be thinking of you next week Sara and Rich. Lots of love from Steven & Mark.


DoLs Mixtures

Yesterday, I was invited to speak at the Court of Protection annual conference. I planned to just deliver the Get Steven Home story, with an emphasis on the three court hearings. The theme of the conference was “Reform”. There were some wonderful speakers. Some brilliant minds with formidable hearts.

So why did I feel so flat?

The first reason was obvious to me. One of the speakers was from the Office of the Public Guardian and I found myself feeling irritated as she spoke about the role of the OPG. I know I’m very sensitive to these issues but it sounded to me like a fair bit of ” othering” going on. The overall message that I heard was that families were the bad guys when it comes to financial abuse of incapacitated people. Professionals act with integrity – families are the villains. On the spur of the moment, I decided to change my speech and finished by talking about our ongoing relationship with the Court. I mentioned that I’ve recently done some calculations. I am meant to manage Steven’s finances and every penny I spend has to be in his best interests. That’s fine, even though I find it stressful not knowing how buying Steven a new CD will be interpreted. But here’s the rub. Even if I never spend another penny of Steven’s money, by a combination of the OPG fees and care charges, in seven years all of his money will be gone. Add into that the fact that LAs are charging people £85 a day to attend a day centre and private companies are charging £3500 per week for being in an ATU, I think financial abuse is just as likely from the State as from the family.

That only explains half of my flatness. The other half is trickier. It’s that awful sinking feeling I get when I experience how huge the industry is that’s built up around DoLs. I listen to some fabulous discussions about DoLs but I can’t place Steven’s life anywhere in the narrative. DoLs have become about lots of things but have become less about P. So, I get confused because I hear some wonderfully committed people debating the DoLs scheme but it feels alien to the life we inhabit. Legal professionals, social care peeps, academics, even philosophers wrestle with the Safeguards and for their good intentions, the industry expands.

Here is the thought that kept me awake most of last night. Would it be such a bad idea if the whole DoLs scheme was scrapped and we forget the idea of introducing a replacement scheme? Despite concordats, task forces, vanguards and Bubb breakfasts, the number of people coming out of ATUs has hardly moved an inch. Have DoLs helped the 3000+ people languishing in ATUs? Whether we apply an acid test or the Clapham omnibus test, people still get admitted to ATUs as frequently as the pre Cheshire West days.

One thing I’m prepared to bet is that, regardless of whether the 3000+ people are under a DoL, it is more than likely their Article 8 (and Article 5) Human Rights are being breached. But the HRA seldom comes into the equation. I don’t understand that. We have an existing law that could sufficiently serve detained people but we’d rather give endless energy deliberating what exactly is a deprivation of liberty.

If I could wave a magic wand, #LBBill would become law tomorrow. That would promote the person’s autonomy and make unlawful incarcerations so much more difficult. And for the people who slip through the #LBBill net, or for those people already detained, throw away your DoL schedules and view their detention through an Article 8 lens. I’m pretty sure that if we shifted the framing, people would receive justice quicker and more fairly.

Until of course, the Article 8 industry builds up.

Blips & Bollocks

Personal budget Tax bill for August paid on 18th September?


Support workers’ wages for last week paid on 21st September?


Personal Budget paid into account on 21st September?

Was it heckaslike.

Four months since transferring from having the personal budget paid onto a prepaid card and having it paid into a designated bank account instead, how is the old personalisation machine running? Well, after the first month when the payment was over a week late, the last two months has been plain sailing. A dastardly lulling into a false sense of security manoeuvre.

I phoned the Direct Payments manager both yesterday and today and was eventually informed that the matter is now sorted and it will be three working days before the money, that was due on Monday, will be paid into the account. Tough shit that the account is now overdrawn (She didn’t say that actually but that was the tone). Why, in the days, of internet banking, do we still have to encounter this ridiculous three working days rubbish? If you’ve made a mistake, and it’s people’s wages at stake, you pull out all the stops to remedy your error.

Two tips for Direct Payment managers:

  1. After listening to your customer explain what has happened, don’t respond with, “It is probably just a blip”.
  2. It is not particularly helpful to tell your customer, “We in the Direct Payments team have processed the payment. The delay is with the Finance Department”. The customer doesn’t care where the delay is. He is more concerned in how he is going to tell five support workers that their pay could be late. You might as well say, “We have processed the payment but Noddy Holder hasn’t had his sideburns trimmed this week”. It is as meaningful as the tripe you offer as an explanation.

So, this is where we are personalisation wise. You either accept a commissioned service, which doesn’t cover the client’s assessed needs because the LA aren’t prepared to pay the rates the provider charges. Or, you accept a personal budget. Become a manager. Become an employer and have to deal with the taxman. And then you are still reliant on an antiquated system clunking into life and doing what it is meant to do. In the meantime, you have to visit your GP and discuss a medication regime to manage the stress of every month bringing a will they, won’t they anxiety.

Sometimes you just want to say rude words.

“Ma’s out. Pa’s out. Let’s talk rude. Pee. Po. Knickers. Bum. Drawers”.

Lessons Learned

Here’s a conversation (announcement) from Steven from earlier this afternoon:

“Don’t drop your bag on the muddy grass.

You’ll make your bag all dirty.

Have to put your bag in the washing machine

Are you going to be a ninckenpoop all your life?

You can drop your bag on the carpet in the hall but you can’t drop your bag on the muddy grass”.

An invaluable life lesson learned.

I’ve no idea when Steven learned this lesson. Or who taught him the lesson. He could have remembered this conversation from any time over the past twenty five years.

But I think the field of potential teachers can be reduced because of the use of the word “ninckenpoop”. Who uses a word like that these days, whether as a joke or in seriousness? It can’t be any of the current support workers. They are all African and I don’t think ninckenpoop is in their vocabulary. I don’t think it was me. I love it when Steven comes out with phrases like “Gordon Bennett” and “Steven Neary’s been a soppy old sausage”, I don’t think I would have encouraged ninckenpoop.

My guess is that it was a classroom assistant. I don’t have anyone in particular in mind but Steven absorbs everything. His hard drive is packed with things people have said to him at various points in his history. Back then, he would have heard the words and stored them. Later, he would have tried to make sense of them. And now, he is announcing the lessons he’s learned from these chance encounters and taking it upon himself to teach others (me, the support workers, Uncle Wayne) these important lessons.

One thing I do know is that I trust Steven when he states he ahs learned a lesson much much much more than I do then when I hear a Public body trot out a “lessons learned, processes reviewed, blah, blah, blah” statement.

Me & Margate

Every weekend I read the upsetting posts on Facebook from Debs Evans as she sets off on the four hour journey to visit her son Eden in an ATU. Each week, Debs takes along Eden’s dog with her. Eden loves that dog and as he enters his seventh year in an ATU, I often think about what he has missed out on, particularly in relation to his relationship with his dog.

I’ve written before about all the things Steven missed out on during his year in the ATU, and although it was only a year compared to Eden’s seven years, Steven will never get that year back. I spoke at a conference on Monday and reminded myself again about the first few weeks after Steven came home and his desperate attempt to catch up on all the things he hadn’t been allowed to do in the Unit – playing on the computer, watching his favourite DVDs.

Laying in bed that night, my mind wandered to my two cousins. They are about 10 years older than me and back in the fifties, they were classified as “deaf and dumb” and were sent away for their entire childhood to a residential home in Margate. His parents, my aunt and uncle were a feisty pair and I can’t imagine they would have been too happy about this arrangement but it was a different time, and I guess the done thing. Nobody put up much resistance to these “care” arrangements. You respected your betters, who obviously knew better than you did and went along with the status quo.

I’ve got some photos of me in a buggy visiting Philip and Gordon in Margate. I have to admit, I don’t remember much about those visits but they look like proper family outings as there are several of us in the snaps. The photos tail out as my cousins hit their early teenage. I’m not sure why.

I used to spend a lot of time with Philip when he came home. He introduced me to Southall Football Club and I went with him on the team bus to all the away matches for several years in the early 70s. He told me once about how his granddad first took him to the matches when he was a toddler. That got me thinking how Philip dealt with not being able to watch his beloved team for over 10 years as he grew up. Saturday was family visiting time, so I don’t imagine he ever was allowed to go and watch Margate play as a substitute. It was great going to the game with Philip. Being deaf, he used to carry a transistor radio around with him with high volume earplugs. Whilst watching Southall, he was tuned into whatever big match the BBC were covering and would let out these almighty cheers at all the wrong times. I recall one game as we were about to take a corner and Arsenal must have scored on the radio. All the players waiting for the corner jumped out of their skins.

As well as the football, Philip used to take to the cinema. By this point, her had a girlfriend, who I don’t think was too impressed  in having an 11 year old gooseberry along for the ride. Philip loved the Carry On films, as did I, so we had lots of things to share. Again, it got me thinking – was he allowed to go to the cinema in Margate?

Philip’s brother, Gordon, who was completely deaf and without speech, carved out a very successful career as a stock car racing driver. His disability not a problem. I guess the question is whether they were held back or developed by their 11 years away from their home and family?

Times change. It’s now almost fifty years on but do things change? We are meant to be more knowledgeable. More tolerant. More person centred.

I’m not sure that things have changed that much at all.

The Best Interests Inequality

Since Friday, I’ve been stressing like mad over a decision I need to make. I’ll write more about what the decision is all about in a later post, but suffice to say, that it is basically about whether something is in Steven’s best interests.

I make best interest decisions all the time, probably more than I realise, so why is this one so difficult? Lurking beneath every decision I make on Steven’s behalf is a fear of how that decision will be interpreted by the official bodies. Families who come into contact with social care have every iota of their lives judged by professionals and I haven’t met anyone who doesn’t find this deeply threatening.

Yesterday, Sara Ryan posted some details about the Southern Health records that form part of the court bundle for the inquest. Part of them include pages of “family observations”. During the observations (which must happen whilst the family are visiting their loved one in the Unit), staff assess the family on issues like: “scapegoating” and “emotional tone”. I don’t even know what that last phrase means but I googled it and it seems to have its roots in scientology! Whatever it means, it is awful to have normal family interaction judged by a complete stranger for its emotional tone.

Back in 2010, as part of the fake transition home plan, Steven came home for three hours on a Tuesday evening. He was accompanied by one of his usual support workers and a member of staff from the Unit. Steven chose to follow the same routine that he would have been doing had he been at home on a Tuesday – namely, a music dvd session. This involves lots of singing and dancing. Three of us would be bopping away whilst the staff member from the Unit was making observational notes in a little black book. There were times when I wanted to scream at him – “What the fuck do you think you are doing! Coming into my home and judging whether our loving family interaction is appropriate”. But I never did. I just gritted my teeth and carried on with one of the most awkward weekly three hours of my life.

Anyway, back to best interests. I am perfectly content to let a court make a best interests decision but I am desperately uneasy about the State making one. But as I wrote about in the last blog post, albeit on a different topic, the family is to be distrusted and treated with suspicion, whilst the State is faultless and a model of integrity. Every best interest decision I make for Steven goes under the microscope but the State can make far reaching best interest decisions without any scrutiny whatsoever.

I don’t think the State should be trusted with best interest decisions. Their agenda is so loaded. Day after day, we read stories of people losing their ILF payments and having their care packages slashed. There is never any mention of best interests in these decisions, although you often have it framed vaguely as “choice”. People are still being taken away from their family homes and left in ATUS for years at a time, with very little acknowledgement given to their best interests, except for the typical, receiving assessment and treatment is in the person’s best interests argument. People are having their night time support removed and left with incontinence pads instead. But that is okay and in their best interests because the pads promote their independence. When it comes to spin in order to justify a best interest decision, the family are minnows compared to the deviousness of the State.

Sad to say but “best interests” are often used to gain compliance. You’ve got to be pretty self assured when you are threatened with the court, if your idea of best interests disagrees with the social care professional. Your lifetime of experience, love and intimate knowledge rarely counts for anything when the State wants to save money or get its way and decides to use best interests as the leverage for this. My experience in 2010 was certainly that Whistler’s Mother used every possible decision I made (or Steven made) to undermine us. I remember Steven deciding that he wanted to join a health club for a swim on Tuesday and Thursday mornings. The social worker’s view was that he should be attending college on those days and wanted to sign him up for a “Community Responsibility” class. Scared of her, we took him to one of the lessons and he lasted ten minutes before he walked out, very agitated. Rather than accept that it was completely the wrong thing for Steven, the support worker and I got blamed for not being encouraging enough.

Game playing on a sinister scale.

The No Jobs

Back in the early 90s I worked for a Local Authority. I was the training officer in the Housing Benefit department. A large part of my time was spent running the four week induction course. One module was called “Public Service” and it was meant to instill in people that their primary function was to serve the ratepayers of the borough. In our case, that service was about assessing people’s entitlement to Housing Benefit and paying them on time. In the module we used to have interesting discussion around the question, “Do you see your role as paying the claimant every penny to which they’re entitled or not a penny more than they’re entitled to?” The answer, of course, is the same but it revealed people’s ideas about public service.

Fast forward 20+ plus years and I’m pretty sure that module would have been dropped from the training. In fact, the ethos behind it would be seen as laughable now. The idea of service no longer exists and the State’s view of the Public is one of sneering, suspicious contempt. Rather than provide a service, the servants role now is to say “No”. I’m aware that using the word ” servant” is likely to raise the hackles of the Public servant.

This post is prompted by another phone conversation with the direct payments manager yesterday. As usual, the call was to berate me. This time it was because I forgot to include the time sheets with the July Personal Budget audit return. Every time we speak, she feels it necessary to remind me that her job is to “protect the public purse”. The conversation reeks with distrust and threats.

But I am ” the public”. It is my purse. The biggest danger for the public servant is to turn the public into an abstract. An other species. Sadly, this is what has happened.

Yesterday I followed the live tweeting from the final pre Inquest meeting into LB’s death. It was harrowing to read, goodness knows what it must have been like to actually be present. I don’t think the concept of service even remotely registers on the Southern Health radar. Or the Oxfordshire CC radar. All their energy goes into self protection and their primary means of doing that is to discredit Sara Ryan and the family’s reality. Truth. Integrity. Service. All sacrificed to preserve some idea that the State must be faultless. How can it be otherwise with such polar opposite aims from the Inquest – the family want the truth. The public bodies want to conceal the truth. Service turned completely on his head.

Also yesterday, I phoned an LA housing department. I’m trying to support one of Steven’s support workers with his housing crisis and he put me down as a reference. Now I know there is a shortage of social housing but everything about the conversation was geared to say “No”. I was talked down to. There was nothing collaborative about our encounter. If service no longer exists, then what exactly was that woman’s job?

On the induction cause, we used real life cases. If the trainee started referring to “the claimant”, I would remind them that the case we were working on was Rupert. Or Amarjeet. Or Muriel. Real people and real lives.

I’m a dinosaur but to me, that’s all that matters.