Monday, 31 March 2014

Story Sixteen - Timer

After a few weeks in the Unit, they introduced a couple of ideas "to help Steven with his anxiety". They sailed straight past the point that his anxiety was caused by him being there in the first place. Yesterday's story about only using four word sentences with Steven was one of the "innovations". Another was the timer......

The Unit felt that Steven didn't manage the anxiety around time very well. They introduced a timer which they'd set for a specific time and when the alarm went off, that signalled the start (or ending) of the activity. I was confused because at home, Steven had never had much problem with gauging time - "Steve, going when swimming when Jeremy Kyle starts". "Steve, going on holiday in two more Mondays". Life at home was constructed around the routines that Steven so desperately needs, that timing never became an issue. He was used to having his tea as Come Dine With Me starts and then going up for his bath as the 6 o'clock news begins.

It was different at the Unit because the needs of the staff and other residents had to be taken into account. The house rules became the driver. Steven was expected to suddenly learn a whole set of negotiation skills that had never been relevant before. Every time he wanted to do something, he had to negotiate with everyone - if he wanted to watch Countdown, he had to ask all the staff and other residents if he could.

Steven had been to a car boot sale and picked up an old Mr Bean video. It was one he had at home but he was very excited at this discovery. The sale was on a Sunday - the staff promised him he could watch the video the following Saturday. Goodness knows why he had to wait 6 days.

He woke up early on the Saturday morning and the shift leader that day was another of the "I'm more important than you" crowd. She set the timer for four hours hence. She told Steven and his support worker that they needed to let the staff and other residents do their normal Saturday morning stuff before he could watch the video. Of course, there was no reason why he couldn't have watched the video straight away but this was all about power.

At about 11 o'clock, and with the alarm due to go off at 12 o'clock, the shift leader decided that Steven needed to go to the shop to get some milk. Steven had been watching the timer intently for the past three hours and wasn't keen on going. It wasn't open to negotiation. By the time they got back from the shop, the alarm had been stopped and as they were now into preparing lunch, the shift leader made Steven set the alarm for another three hours. He kicked off.

I arrived at 1 o'clock for my normal visit, and not knowing any of what had gone on, tried to encourage Steven to get on with his music tape. Of course, he was expecting Mr Bean. By this time he had been waiting five and a half hours. He was in a serious meltdown.

When his meltdown was logged there was no mention of the Alarm or Mr Bean in the "antecedents". It was just logged as another example of Steven's behaviour "that needs further assessment".

#107days #justiceforLB

Sunday, 30 March 2014

Story Fifteen - Toasted Cheese Sandwich

Upon admission to the Unit, a whole army of professionals entered our life. We had psychologists, Speach & Language therapists, occupational therapists. And more behaviourists than you could possibly shake a stick at. A whole troop of people sprung into action to assess why Steven's behaviour at the Unit was so challenging and to develop strategies for dealing with it ("SEND HIM HOME"). One of my theories about why Assessment & Treatment units exist is to fund the enormous troop of people that spring into action. The salaries alone must run into hundreds of thousands of pounds.

This is the story of one of our adventures with the SALT. She was a great believer in symbol programmes. Every aspect of Steven's life could be covered by symbols.

One Moday afternoon during one of the home visists as part of the fake transition home plan, the SALT turned up to demonstrate her symbol and verbal programme for supporting Steven in making a toasted cheese sandwich. Steven had been making his own toasted cheese sandwiches for ages and I’d never seen him become anxious whilst doing so. Once again, it was a case of ignoring the little things that are so important to Steven – he always had a ham sandwich on a Monday home visit; toasted cheese sandwiches didn’t fir into his Monday schedule. The SALT wanted to observe me supporting Steven with the meal and gave me instructions on how to verbally communicate the steps to Steven. Basically, it was never use more than four words: “GET BREAD FROM CUPBOARD”, “PUT BREAD IN TOASTER”. I cam a cropper on “CUT CHEESE WITH KNIFE” and was reminded to draw the word “cheese” out as if I was “stretching a piece of plasticine”. Steven thought that I’d gone mad. I could see that he was confused by me telling him how to do something he already knew. But more alarmingly for him, I was talking in a strange voice. During “SPREAD BUTTER ON TOAST”, he said, “Dad’s talking like…..?” trying to understand what I was playing at or who I was impersonating.

 Eventually the toasted cheese sandwich was completed and the SALT told Steven to take the plate into the living room (she actually used six words for this instruction but I thought it impolite to point that out) whilst she “debriefed” me in the kitchen. She told me to encourage all his support workers to use this approach; four word sentences with every syllable stretched out. When we got back in the living room, the sandwich was sitting uneaten on the dining table like a piece of modern art. She asked Steven if he was going to eat it, to which he replied, “just have ham”. As I was showing her out, Steven legged it into the kitchen; threw the sandwich of the toasted cheese variety in the bin and set about making a ham one. Unaided. The support workers who had been stifling laughter all through the visit, collapsed on to their chairs. My instruction to them: STOP LAUGHING YOU BASTAAAAAARDS”.

Saturday, 29 March 2014

Story Fourteen: Blocked (Part One)

It was one week after Steven went away that I was visited by the social worker and the manager of the Unit. Stupidly, I had already agreed to extend the three days respite to a fortnight but what they were insisting now was terrifying. They wanted an indefinite period of "assessment".

In just one week, they had recorded 28 incidents of Steven lashing out. Through my tears I tried to say that Steven must be in such a state of distress for this to be happening.

The mood changed. It became very threatening. If I didn't agree to their plans, "Steven's care package would have to be reviewed". And, I had "to put a very good case for his return home". I was scared. There had been no previous concerns about life at home. There was no safeguarding alerts. It was all based on Steven's behaviour in that first week that they were convinced was the norm.

I said that before I agreed to anything, I wanted to speak to all of Steven's normal support workers who had been with him for the past week. This didn't go down well. After they left, I phoned all the guys and arranged for them to come round at 4 o'clock that day.

At 3.45pm, the social worker phoned. They had discussed the matter and all felt that a meeting would be "divisive", so she had cancelled the meeting. The guys would not be allowed to speak to me. In future, any questions I had must be addressed to either her or the Unit manager.

I wasn't allowed to speak to my trusted lieutenants.

We actually kept up this order for about two weeks. They guys would turn up for their wages and I'd leave them on the doorstep. We'd exchange a few awkward words about the football or the weather and that was that. After about 2 weeks, I think we all had an unconscious "fuck this" moment and we started speaking again.

I never understood why the Unit adopted these tactics. They weren't the slightest bit interested in speaking to the people who knew Steven best. They didn't want to know about his life before the Unit (a week earlier). They didn't ant any input from the key people in Steven's life. Is that arrogance? Ignorance? I've no idea.

#107days #justiceforLB

Friday, 28 March 2014

Story Thirteen - Capacity

"Want to live in the Uxbridge house"

"Want to live with Mark Neary"

"Want to go home"

"Steven Neary likes the Uxbridge house"

"Steven Neary has good things in the Uxbridge house. Computer. Music. DVDs. Crisps. Singing. Videos".

"Steven Neary talks to Mark Neary about Mr Bean"

"Don't like M House"

These were Steven's responses at his Mental Capacity Assessment. An assessment to decide if he had the capacity to decide where he wanted to live. An assessment to decide if he can develop a reasoned argument for his choices.

The psychiatrist failed him.

Steven realised words didn't get him freedom, so he took to escaping instead.

#107days #justiceforLB

Wednesday, 26 March 2014

Story Twelve - Geoff

In Story 2 (Shoes) I mentioned that delightful creature, Geoff. This is the story of how Geoff got his comeuppance.

In the summer of 2010, I received a call from the social worker needing to see me urgently. She turned up with her manager and hour later.

The story was Steven had been assaulted at The Unit that morning. He had been kicked three times on the leg and had a cup of coffee thrown over him. Steven was due to come for a home visit that evening and the social worker asked me to check the bruises.

She left a very important part of the story out. And shame on me - I assumed it was one of the other residents.

"What you done to your leg Steve?"
"Geoff did a massive kick on Steven Neary's leg".

I don't know who I was more angry with - Geoff for the attack or the social worker for deliberately misleading me.

Geoff and the Unit's shift leader tried to cover it. But fortunately, two bank agency staff witnessed it and reported it to both their own manager and the police. The CPS prosecuted. The two guts told me later that between then and the trial they received lots of intimidation to try and get them to change their story.

I went to Geoff's trial. He tried to claim provocation but the judge wouldn't let him have it. He kicked Steven three times on his shin and threw a hot cup of coffee over him.

He was found guilty. I never got to know what his sentence was. I asked the social worker but she couldn't tell me in case it breached Geoff's confidentiality.

Story Eleven - Costs

Steven was taken to the Unit on 30th December 2009.

When we received all the social work records for the court hearing a year later, we discovered a one line email from the social worker's manager dated 31st December 2009 (the day after he moved):

"D - the costs in this case are escalating fast - what can we do about it?"

That was quick.

There was no written response to the email but in the next few weeks they tried to stop Steven's direct payment package which would have meant all his normal support workers would have been laid off. And they classified him as "resident" in the Unit which meant they could start charging him for the privilege of being there.

I never understood the "costs" thing. The cost of the Unit was three times the amount of his normal support package.

But then of course, his normal support package didn't include all the expensive managers and therapists who suddenly came on board. Their jobs and salaries have to be justified I suppose.

Sunday, 23 March 2014

Story Ten - Escape

Robbie Williams rejoined Take That in the year that Steven was away. During a home visit, Steven saw a picture of the group on the front of the paper and spent half an hour dancing round the living room, declaring: "Steven Neary's a happy man now". For the next few weeks, he would go up to anyone he met and let them in on the news. There was a lot of hype about their first TV appearance as a five piece - it was going to be on The X Factor. Steven was bursting with excitement.

It's now the end of October and Steven had been held in the Unit for 10 months. The council had just accepted a tender from a hospital in Wales for Steven's long term care and, unbeknown to us at the time, had submitted an application to the Court of Protection to be appointed Steven's welfare deputy. That would have given them the power to carry out their plan without any chance of redress from us.

Steven had taken to sitting on his own in the dining room to watch the telly. He found the communal living room too stressful. I suspect everyone else was in the living room watching the X Factor and Steven saw his window of opportunity. He was in his pyjamas and he didn't even stop to put on his shoes. He bolted out of the front door, unlocked the front gate, crossed two main roads and was found about 25 minutes later in the car park of a transport cafe. None of the staff on duty realised the significance of this but the cafe was at the top of the road where we used to live. They didn't realise that Steven was about five minutes away from freedom.

The following day, Steven told me his plan:

"Steven Neary was going to Julie Neary's house.
Julie Neary will speak to Mark Neary on the phone
Mark Neary will take Steven home in the car"

A few weeks beforehand Steven had failed a mental capacity assessment. Pah! I think he'd constructed a genius plan, that very nearly came off.

It certainly marked a huge change and from that point on, things moved very quickly in our favour.

A few months ago, I met a screenwriter who has read my book and said that the "escape" scene would be one of the pivotal scenes of a film - with a Take That soundtrack to the scene.

So, here we go. Watch the clip and try and picture Steven in his pyjamas, making his great escape.

Story Nine - The Surgery

One of Steven's support workers was reblog last night and reminded me of a very weird story that I'd completely forgotten about.

One of the Unit's objectives for Steven's time there was to get him to understand the concept of "task completion". They often linked this in with another objective: "increase independence skills". Not a bad idea at face value, but like everything, Steven has to understand the project or else he won't/can't invest in it.

This particular Wednesday morning was a disaster waiting to happen. Steven had two fairly inexperienced support workers working with him and the Unit's shift leader that day was a woman the support staff christened "Eva Braun" - a woman slightly intoxicated by the power she held over these vulnerable men in her charge.

Anyway, she decided that Steven needed to go and pick up his prescription. She also decided that Steven needed the exercise, so they had to walk there rather than take the bus. Not a great start. It was a good 30 minute walk to the GPs. Unfortunately, neither support worker had been to the surgery before and went in completely the opposite direction. After walking for about an hour they realised this and turned round. Steven must have been very confused by this point - to him, each trip must have a purpose and this didn't seem to have one. Eva had also given the guys instructions not to go into any shops, so when Steven decided he wanted to pop into the newsagents for a drink, they had a real struggle stopping him entering.

The guys decided to return to the Unit as by this time Steven is in meltdown. They got back and Eva wasn't happy. The task hadn't been completed, so she sent them straight back out again. This time, they went the right way but it was still another very long walk, By now, Steven is howling. It must have been a very difficult walk for all of them.

Later that day, I was contacted by the manager of the Unit to inform there had been an incident at the surgery. Apparently, Steven kicked a woman in the surgery, who just happened to be a council employee and she reported it back to the social worker. The support workers were asked to write incident reports but they both claimed that nothing serious had happened. Bizarrely, one of Steven's regular cab drivers just happened to be in the surgery at the same time and he confirmed the workers' story.

Nonetheless, both workers were suspended. Their reports weren't believed. The lovely cab driver, quite independently, wrote a report but that was ignored.

A couple of week's later, Steven was under a DoL authorisation, the two guys were sacked and Eva rose to greater heights.

Saturday, 22 March 2014

Story Eight - Beards

Cranking up the scare tactics. by the summer of 2010, the Unit compiled a list of "vulnerable groups", who they claimed were at risk from Steven.

The vulnerable groups included:

  1. People with hats
  2. People with glasses
  3. People with beards
  4. Old people
  5. Dogs
  6. Muslim women
  7. Parked cars
Above is a video of Steven whilst he was at the Unit, visiting the gym for his Wednesday football session. Each week he met his vulnerable friend, the bearded wheel clamper, Simon.

#107days #justiceforLB

Friday, 21 March 2014

Story Seven - Window

I arrived for a visit one afternoon to see one of the windows at the front of the house all boarded up.

I'm ashamed to say that my first reaction was for my heart to sink as the thought appeared: "Oh no - what has he done now?"

When I was let in, Steven was upstairs in the toilet but the living room was full of people - managers, staff, Steven's support worker and two of the other inmates.

Deciding to take the bull by the horns, I asked brazenly: "What happened to the window?"

Everybody was a bit sheepish and the manager replied: "Bit of an accident today - nothing to do with Steven".

Steven came bounding down the stairs - "Dad - Dad - Eunice had her silly head on this morning".

The manager int erupted him and ushered both Steven and I into the dining room and shut the door on us. We got on with discussing matters of life and death - Did Vince Clark go to Erasure before Depeche Mode? And why you must wear a T shirt in the car or else the seatbelt might scratch your nipples. Normal Steven Neary conversation.

When I reasoned the coast was clear, I pressed him more about Eunice's silly head but all Steven would say was that Eunice and Gordon were shouting "very massive loud".

After I left, Steven's regular support worker caught me up and told me they had all been instructed to keep quiet on the incident. But that morning, two members of staff, Eunice and Gordon had a blazing row and Eunice picked up  a heavy folder and threw it at Gordon. It missed Gordon by a mile and went smash through the window. All witnessed by Steven and the other guys in the Unit. And no consequences for Eunice or Gordon.

When I got home, there was another report from the Unit waiting for me. It was the latest month's log of "challenging behaviour that needed further assessment". In a hospital. In Wales, 250 miles away.

But I guess if the cap fits......

#107days #justiceforLB

Thursday, 20 March 2014

Story Six - Home

On the 16th April 2010, the professionals held a minuted meeting. There are four action points at the end of the minutes:

  1. Steven will not be allowed to return home to either parent.
  2. The council will start looking at long term secure residential placements for Steven
  3. Mr Neary senior must not be informed of this.
  4. The Unit manager to consider implementing the deprivation of liberty safeguards for Steven.

One of the Unit's staff told me once that one method they use to change thinking or behaviour is "subliminal messaging". Steven's language is very direct (frighteningly so at times), so it struck me as interesting that the professionals would use a covert, some might say, manipulative approach to deal with this.

It started straightaway after 16th April.

Steven always refer ed to his home as either "home" or "the Uxbridge house". On the care plan for the fake transition home plan, it had always refer ed to Monday afternoons as: "Steven's visit home". That all changed and home suddenly became "Dad's house". (and later, when they were trying to destabilise our relationship - "Mark Neary's house"). I would never buy into this and insisted the support workers still used the word "home".

A couple of weeks after 16th April, Steven had his first mental capacity assessment to determine if he had the capacity to decide where he should live. In the assessment, Steven was asked lots of comparative questions - "which is better - M House or Dad's house?". Bearing in mind that the MCA code of practice says that people should be supported through this process and be given every opportunity to demonstrate their capacity, the Unit had a cunning plan. To aid their questions, they had a photo of the Unit, a photo of the respite house and........ a clip art picture of an anonymous house which they called "Dad's house". We've got tons of photos of Steven at home, inside and out - they only needed to ask.

I found it very scary that, in order to carry out their plan, they had to change all of Steven's thinking as to what a "home" is and turn it into an abstract concept. Of course, it also gave him the subliminal message - "Steven - you don't have a home".

#107days #justiceforLB

Wednesday, 19 March 2014

Story Five - Birthday

Today is Steven's birthday. Four years ago at the Unit, it was a very different, tense, damp squib sort of birthday.

I arrived first thing with Steven's birthday presents. The day got off to a bad start. The DVD player at the Unit had packed up months before and hadn't been repaired. So, all the DVDs I'd got couldn't be watched. The same with the computer games I'd brought - the Unit didn't have a computer for the service users, so the games remained unplayed. I took Steven's ghetto blaster with me so at least we could listen to the new CDs but it all felt a terrible anti-climax. Steven didn't want to keep any of his presents at the Unit and made me bring them home with me.

I'd got tickets for us to go to Abba World, an exhibition of all things Abba that was being held at Earls Court that week. By now, Steven had been at the Unit three months and they were well into their "building up a case" position. They had logged 218 incidents of Steven lashing out or "engaging in behaviours that need further understanding" and RISK was the watchword, written and spoken about in capital letters. For days, the Unit were considering whether Steven could go the exhibition, factoring in the risk to others if he went. I'd hatched a plan withe the support workers that we'd pretend to be going swimming that morning and once in the cab, speed off towards Olympia. We'd deal with the consequences later. As it happened, they had a last minute change of heart and we were allowed to go.

Steven had a great time. We performed on stage with holograms of the band. We sat in the helicopter from the cover of "Arrival" and Steven was delighted to see Bjorn and Benny's recording studio recreated with views across the archipelago. I felt melancholy all day - sure it was fun but it was a small oasis in a turgid time

Back at the Unit, there was a small party. One of the other residents went to town and put up decorations and changed into a tie for the meal. They did make an effort but both Steven and I knew that it was not the sort of birthday he'd prefer to be having.

Here's a picture of the trip to Abba World. The Unit were unhappy about pictures of the agency staff being taken. The guy didn't mind at all, so to get round the Unit's concerns we did a little photoshopping and put Mr Bean's head on him:

Tuesday, 18 March 2014

Story Four - Bryan Ferry

There were some good people working at the Unit. One of the shift leaders (let's call her Hildegard) really tried to connect with Steven through music.

One evening she brought in a Bryan Ferry greatest hits CD. Steven loves "Let's Stick Together" and it sounds like they had a good dance together.

However, they came a cropper on "Jealous Guy". Song lyrics prompt a thousand questions for Steven as he wants a full backstory and complicated explanations for vague lyrics.

"I'm sorry that I made you cry....... Bryan Ferry's sorry because.......?"

Hidegard tried to explain the concept of jealousy to Steven but that was probably one emotional bridge too far. Steven had a more down to earth explanation for the tears:

"Bryan Ferry's crying cos he cut his finger on a tin of sausage and spaghetti hoops".

And the story has stuck.

Good on Hildegard. In other hands, in other ears, this could have led to Steven being signed up for a whole series of "emotional literacy" classes.

It didn't because one of the staff tried to tune in & accepted Steven's view of the world.

Very rare.

Monday, 17 March 2014

Story Three - Privacy

There were some house rules in the Unit that made having private time very difficult.

There was an official rule that visitors weren't allowed in the "resident's" bedroom. And an unofficial one that "residents" were discouraged from going into their bedrooms during the day.

That played havoc with visiting times.

Ever since Steven was 11, we have always done a C90 compilation tape on a Saturday afternoon. It used to be preparation for the week ahead - he would listen to his Walkman at breaktimes to help him manage the anxiety of that unfilled space. Since leaving school, we have continued with the tape and Steven listens to it back on a Sunday morning before swimming.

So I would turn up at the Unit at 2pm on a Saturday afternoon with the tape all prepared and we had a choice of going into the main communal living room or the dining room. Steven chose the dining room as it was slightly more private. I think he also quite liked the time alone with me so he could chat about all the things he would normally chat about at home during a tape session (What colour trousers Gary Barlow wears in Patience, Why it's not a good idea for Tommo to play his saxophone underwater in It Must Be Love. Why Boy George is in urgent need of a plaster in Bow Down Mister).

It was impossible. Staff would be in and out getting things from the freezer or the overflow filing cabinets. Other service users would pop in to join in with Hey Jude. And the more that people came in, the more agitated Steven became. Once he kicked another service user who came in for a bop during Witch Doctor and that was immediately logged as another "unexplained" incident of challenging behaviour. I just became frozen. Trying to give Steven a good time but constantly tense about how our interactions were being recorded.

Two hours later it was time to leave. I'd get the bus home, go to the Slug & Lettuce and get pissed and have a good cry.

Sunday, 16 March 2014

Story Two - Vegetables

After a while I became very distrustful of anything recorded in the Unit's logs. It became clear that the logs weren't being used for "assessment" - their purpose was about building up a case to back up their plan to send Steven away. This was litigation - not assessment.

The social worker kept talking excitedly about all the new vegetables Steven was eating - "This is something you must continue when Steven comes home Mark".

Steven told the truth.

I was looking through the log one day (I was having to sneak a look as I wasn't allowed to read any of the Unit's records):

"Oh - you had steak and broccoli last night Steve?"

"No - just steak. Threw the broccoli in the bin".

They were recording what they dished up rather than what he ate.

But they kept up the lie about vegetables and how "Mr Neary doesn't take food issues seriously" right until we got to court.

Don't assume honest recording in assessment & treatment units - they have a line to follow. The image of the Unit comes before the people in them. They have to be seen to be doing the "right thing" even if the reality is very different.

#107days #justiceforLB

Friday, 14 March 2014

Story One - Shoes

Steven told me this story about a year after returning home.

When Steven tells a long story, he tells it in short sentences. He expects me to repeat back what he's just said before moving on to the next part of the story. That's how I've presented it here.

The court forbid naming places and people involved in the year in the Unit, so I've called the member of staff, Geoff.

Over to Steven:

"It was massive raining on Tuesday"

"Geoff threw Steven Neary's shoes in the garden"

"Steven Neary been to go in the garden to pick up his shoes"

"Geoff was laughing massive"

"Steven Neary's socks were all wet and muddy"

"Steven Neary had muddy socks all Tuesday till bathtime"

As Steven tried to escape so many times, the Unit took to locking Steven's shoes away in a cupboard in the hall. He had to ask whenever he wanted to put his shoes on.

I don't think there was any comeback for Geoff for this incident. There must have been other staff there who witnessed it but I don't think it was even reported.

You're a real man Geoff.

#107days     #justiceforLB

#Justice for LB - 107 Days

Been thinking long and hard about what I can add to the #107 days campaign.

I find myself repeatedly asking the question - whats the bloody point of assessment and treatment units? The judge in our case slammed the unit for its absence of assessment and there was certainly no treatment taking place.

I'd like a serious review to look at the purpose of these places and if necessary, close the sodding things down.

Steven went away for 3 days respite on 30th December 2009. The following day I stupidly agreed to him being moved to an assessment and treatment unit. 3 days turned into 2 weeks and it finally took 358 days for him to be returned home. In his time in the hellhole, he was unlawfully deprived his Article 5 & Article 8 human rights. The scars are still there for him and me.

I'd like to keep assessment and treatment units in the news until they're gone for good.

For the next 107 days, I will post stories of Steven's time in the Unit. Some will be positive stories of his stoism - some will be about how I fought to get him home - and there will be some horrible stories of the things he had to endure whilst there.

I hope it helps.