Story Twenty Three - The Duke

One of Steven's long term workers called Steven "The Duke of Uxbridge".

Steven loved that. And everytime they greeted each other, they sang a quick burst of:

"Duke, Duke, Duke, Duke of Uxbridge......."

When the cat was out of Hillingdon's bag and we knew that they had no plans to let Steven come home, the support worker was called into the office one day and told that Steven may get upset and confused by the song as he won't be returning to Uxbridge. Seriously. The Unit were seriously screwing him over every day but one song had become a no-no.

Did it work? Of course bloody not. They still sing it today, except Steven has become the Duke of Cowley.

Darts have been good for Steven. They taught him that a black woman can marry a white man. I told him the story of seeing Darts at the Palladium in 1979 and Den Hegarty falling from the Royal Box, so Steven now knows that you don't climb when you're in the theatre. And he once told a man at the bus stop that "Mark Neary thinks Griff Fender is a very cool dude"

Anyway, let's forget those bastards in the Unit and have a sing song:

Story Twenty Two - 22

I've been looking forward to this post. 22 is Steven's favourite number.

22 boxes in Deal or No Deal

Manuel took 22 rolls of toilet paper up to Mrs Richards's room in Fawlty Towers.

Steven changes the words of 10 Green Bottles to "22 Take That Songs" and we sing a line for each of their hits.

Coincidentally, day 22 of Steven's time in the Unit was the second time in those first few weeks that I got blocked from speaking to the outside world. I chronicled earlier, the story of how the social worker stopped me from speaking to the regular support workers.

On day 22, Steven had an appointment with the psychiatrist. I hadn't been allowed to speak to Steven up until then, so I was determined to go to the appointment. I wanted to let the psychiatrist know what had happened and hoped that his experience of Steven would make the social worker and the Unit see sense.

I arrived half an hour early for the appointment. After just five minutes of waiting outside the hospital, Steven, the Unit manager and two Unit staff emerged from inside it. They had brought the appointment forward but not told me. In 22 days, I was no longer able to speak to the doctor I had known for about 5 years.

They stitched things up very nicely at that appointment. It wasn't until the Court case 11 months later that I saw that the psychiatrist had been told that the reason Steven was in the Unit was because I couldn't cope with his behaviour.

It's very hard to convince someone nearly a year later that wasn't the case at all.

#107days #justiceforLB

Story Twenty One - Morrissey

I'd forgotten this story. Steven reminded me of it this afternoon during one of our marathon Saturday afternoon tape sessions.

I remember at the time, Steven's normal support worker was furious at the attitude of the staff at the Unit but was impressed with Steven's way of averting a meltdown.

It was June 2010. The Unit were still persisting with their use of the Timer. Steven was having to use it everyday in order for him to watch Countdown. One of the staff would set the Timer about 2.30 and Steven would sit and watch it intently for the next hour until his programme started.

This particular day was during the 2010 World Cup. And 10 minutes before Countdown was due to start, one of the Unit staff changed channels as the staff wanted to watch the Italy match. Steven got up and changed the channel back to 4. One of the staff took the remote control off Steven and put the football back on. This went on for about five minutes, with Steven getting more and more worked up, until he eventually burst into tears. A couple of the staff thought this was very amusing and started to mock Steven.

One of them said: "Oh look. The little baby's miserable now".

Steven perked up.

"Miserable. Like Morrissey".

Blank response

"Like Hang the DJ".

Blank response

"Like Charlie Hawtrey".

Steven's lateral thinking was getting in the way of them watching the match.

"Shut up Steven".

"Miserable. Like 4 men Smiths".

Steven was sent to his room until the match finished. The log recorded, Steven's behaviour being "especially challenging this afternoon" but no mention of Countdown or Morrissey.

#107days #justiceforLB

Story Twenty - Lavender

The Unit grew a whole list of "behaviours" they deemed "inappropriate" and needed stamping out.

One that I had a big problem with was over Steven smelling hair. He only ever does it with two people - me and his long term support worker.

Ever since Steven was tiny, he greets me with a handshake and then smells and kisses my head. It has always felt to me to be a genuine show of affection. A moment of intimacy. Is that wrong? Is it inappropriate?

The same with Chris, his support worker. I remember how it started with Chris. Steven had been doing "smells" at school and got very excited one day that Chris's shampoo smelt of lavender - one of the smells he had learned at school that day. Ever since, Steven greets Chris with a quick sniff and says "lavender".

Like most things at the Unit, Steven was passed through a judgemental filter - an appropriateness panel. And the outcome can only be one thing when a group of people exercise such power - Steven would have to stop doing something that was important to him.

Story Nineteen - Holiday

I booked our annual holiday in February 2010, expecting Steven to be home long before then. We have had a holiday every year since Steven was a nipper and it is one of the hightlights of his year. It didn't occur to me that the holiday would be a problem.

By the time the holiday was due (we were due to go on 5th July), Steven was now on his second Deprivation of Liberty authorisation.

Two weeks before the holiday I was visited by the social worker and the Unit manager. They asked me to read a letter.

This is how the judge describes that event in his final judgement:

"Two days later, on 23 June, and after much consultation had taken place in the previous weeks between the social worker, the team leader and the service manager, the unit manager wrote to Mr Neary saying that Hillingdon could not support Steven's holiday on 5 July. The reason given was because the support unit had responsibility under the DOL "order" to assess Steven's access to the community, and because "Whilst we are in the process of transition with Steven to the family home, I feel we will be placing Steven and others at risk ..." Mr Neary was understandably downcast at the lateness of this decision, which he felt would disappoint Steven, who had been looking forward to the holiday. Workers at the support unit did not feel that this was so. Nevertheless, one of the problems for Hillingdon by this stage was that Steven was becoming excited by his visits home, in accordance with the transition plan. At this stage, Hillingdon's position remained unchanged, as reflected in a message from the service manager to colleagues with reference to the holiday and generally: "In the final analysis, Mr N can take the whole matter to the C of P if he feels a DOL should not be in place."

The letter was interesting. Don't forget, the "transition home plan" was one great big lie but was still being used to keep us quiet. 

We did eventually get to Somerset, the year Steven came home but he is still confused about why he never had a holiday that year. He regularly runs through the venues of all our holidays and pauses when he gets to 2010. He throws his arms open wide and says:

"Steven Neary couldn't go to Somerset when he was in M House cos Steven Neary threw a glass of apple juice over A".

Classy behaviour from the Unit.

#107days #justiceforLB

Story Eighteen - Vamping

Steven has signature tunes for most people. Some are blindingly obvious. Some are him trying to convey a message to the other person. Some need so much de-coding you can feel your brain start to frazzle. They all make sense in a special Steven logic.

So when he greets someone, he'll shake their hand and sing their own special song.

One day at the Unit, one of the staff came up to me and said that everytime he clocks on shift, Steven comes up to him and starts singing:

"My heart starts missing a beat.
My heart starts missing a beat.
Everytime".

"Oh, that's a Pet Shop Boys song" I replied, "I'll check out with Steven why that's become your song".

Later, I asked Steven -

"Cos, he looks a bit like Dracula".

Awkward moment. The guy was waiting for me to feedback the meaning behind the serenade. How do you tell someone that Steven reckons he resembles Dracula. I bottled out and told him he looked like a character in a Pet Shop Boys video.

Take a look at the video. Would you want your personal care done by this man.......?

Story Seventeen - Something or Other

At the end of February 2010, after Steven had been in the Unit 8 weeks, I wrote to the social worker and asked her to look into the matter of Steven's clothes. They were either disappearing, being shrunk in the industrial washing machine or being ripped by one of the other residents.

I got no direct reply but here is the infamous email that she sent to other staff on Steven's case:

"There is always going to be something or other that Mr Neary will bring up and more often than not we are having to appease his needs rather than Steven's, however I want Steven to remain at [the support unit]. I know that it seems that you as a team are constantly being questioned but this will be the case because Mr Neary wants to find issues with the care that other people give Steven. We just need to ensure like we have that we are working together for the best outcome for Steven."

This is what the judge had to say about the email:

"It is now accepted by Hillingdon that Mr Neary had done nothing to deserve this disrespect. The unfortunate tone of the message demonstrates that even at this stage the expression "working together" did not include working together with Steven's father in the true sense and that Hillingdon's thinking had by this stage become adversarial. Worse, the professional view was withheld from Mr Neary, perhaps because revealing it would have provoked a renewed challenge. In the meantime, a "transition plan", ostensibly leading towards a return home, was put into place. It started on 4 March, with four phases: (1) 4/6 weeks of return home on Monday afternoons, (2) 4/6 weeks of return home on Monday and Tuesday afternoons, (3) the above plus Saturday afternoons at home, (4) the above plus a couple of overnight stays before a final return home. It was not until 8 July, by which time the four phases had been successfully accomplished, that Hillingdon told Mr Neary that it was not willing to return Steven to his care."

I'm glad the judge recognised this. I'm delighted that this part of the judgement is now regularly used on social worker training courses as an example of how not to do it.

But it is the perfect example of the nonsense of the claim that "we work in partnership with families". Like LB's time in STAT, we were sidelined as a family. I was seen, at best as a nuisance, obstructing Hillingdon's plans. At worst, I was lied to, just so that the professionals could get their own way.