2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

4,329 films were submitted to the 2012 Cannes Film Festival. This blog had 13,000 views in 2012. If each view were a film, this blog would power 3 Film Festivals

Click here to see the complete report.

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In Your Service

What’s with all the hostility from those in public service? It seems more and more to me that the starting position is usually a defensive one and it goes downhill from there. Trying to have a conversation with someone in authority these days reminds me of those moments when as a kid you are expecting to be caught out by your parent (“Can you come in the living room a minute Mark?” – “I haven’t done anything Mum”).

Every statement I read from the DWP is un-necessarily aggressive. Their statements usually appear at the end of some report where the DWP official figures or statistics have been revealed to be dodgy or downright lies. The DWP response is often quite wordy but might just as well say “Fuck off – who the hell do you think you are”.

Today I got a letter from the Tax office informing me that I may have not sent my self assessment back in April. That is the opening sentence and the use of the word “may” suggests a pleasant discussion may next take place. No siree. From that point on, the letter is a succession of threats. Threats of penalties that get increasingly severe. I’m surprised the letter doesn’t end with the threat of castration. For the record, I submitted my tax return on 8th April with a covering letter and thankfully sent it by recorded delivery because Mr Paranoid thinks this might be a new way for HMRC to make a bit of money – tell people they didn’t submit a return and then give them a £10 per day penalty. But my point is, after the placid opening sentence, the attack is launched and there is never the possibility that perhaps the error may be at the official end.

This brings me to my fabulous conversation with the direct payments officer at Hillingdon the week before Christmas. The direct payments were due on 17th December. It’s an important month; not only do the workers want their money for Christmas (not unreasonable) but the PAYE is due at the end of December and if the attitude in the above paragraph is anything to go by, I don’t want to run the risk of incurring a fine. So, I checked the DP account on 17th – nothing there. Checked it again the following day – nothing there. I phoned the council and was promised a call back later that day after they looked into it. No call came, so I phoned again on 19th (after checking the account again). I waited 35 minutes to be put through and before I even got to end of my opening sentence was told, “I’ve checked. It has definitely been processed. There’s nothing more I can do”. End of conversation. I phoned the bank again just to see if the credit had disappeared into some sort of “pending ether” but to no avail. Five minutes later, the bank phoned me back. The very helpful woman had checked and the direct payments had been paid into my personal account (it hadn’t occurred to me to look there!). I thought I’d better phone the direct payment team back to tell them:

Me: Guess what. I’ve found it.

DP: I’ve already told you it was processed on time.

Me: It was in my personal account.

DP: (suspicious) How did it get there? All transactions have to take place from the one account for the direct payment audit.

Me: How did it get there! I guess you sent it there.

DP: That couldn’t happen.

Me: But you pay me. I don’t have anything to do with it until it’s in the account.

DP: We don’t have access to your personal account. (that’s not strictly true. They overpaid my housing benefit once and went straight into the account the next day and took it back).

Me: Don’t worry about it. I’ve transferred it into the DP account now.

DP: You must have changed the bank details.

Me: Look. Have you got any record, Phone call, letter from me giving alternative bank details?

DP: I shall have to change it back straightaway. We can’t have this happen again Mr Neary.

Me; Just a thought. I’ve just had a payment into my personal account from your homeless team to cover my housing benefit. Could the bank details have been altered by them?

DP: You gave my colleague in housing different bank details?

Me: Of course. The rent can’t go into the Dp account.

DP: Ah. See. That’s where the misunderstanding occurred. Leave it with me Mr Neary – I’ll get it sorted by next month’s payment.

The inference during the whole conversation was that I done something wrong. Worse – something suspicious. Was I trying to pocket the direct payment? That’s what it felt like. What obviously happened is that the council must have this one massive payment system and it can’t handle different payments going into different accounts. Where’s the shame in her saying: “Mr Neary, the truth is, we’ve got a computer system that dates back to the time that Showwaddywaddy were having hit records. You may have to start playing pass the parcel every month and transfer the payments from one account to another. And next time you’re in Greggs – have a cream cake on me for the inconvenience”.

When did this change in attitude happen? Someone, somewhere must have decided that it was a good policy to adopt with members of public; people using the service. Now it seems to me pretty endemic.

That Old Familiar December Feeling

And so it has started. It happened at this time last year and yesterday saw the start of this year’s late December traumatic anxiety surfacing for Steven. December is always a difficult time for Steven because being autistic, his normal routines are the foundation stones of his life and his piece of mind and in December they are severely disrupted. The anxiety starts as soon as Countdown goes off the air in the second week in December; it is the first of the routines being dismantled. Then for three days from Christmas Eve to Boxing Day a calm descends because the yearly routine of these three days is that there is no routine which is a routine in itself. These days certainly don’t have the same routine as the other 362 days. Since Steven returned home on Christmas Eve 2010, we now have a new, overwhelming anxiety that will grip from 27th December and probably last until Countdown returns on 7th January.

Last night we went to bed just before 10pm. Between 10 and 11, Steven called me into his room 17 times, seeking reassurance that he’s “not going back to M House for a massive break next Wednesday” (It was a Wednesday that he went away in 2009. It’s not surprising that for someone who remembers that he ate jelly tots on the train on a Thursday in 1996, that he remembers the significance of this particular Wednesday). At 12.30, I was woken by the sound of him sobbing and sat on his bed for half an hour. he was pleading with me to “stay in the Uxbridge house with Dad forever and ever”. This lasted until 1.15 when he fell asleep. At 2.30am, he came rushing into my bedroom, grabbed my arm and nearly pulled me out of bed in his desperation – “Dad’s not putting Steven’s clothes in the bag for a break?” I showed him the empty suitcase and his clothes hanging in his wardrobe but it took until 3.15 before he calmed down and went back to bed. At 4.30. I was awoken again by Steven screaming. This time it was a combination of “not going to M House after Christmas” and “want to stay with Mark Neary all days”. This lasted until 5.15, during which time, Steven became so agitated he wet himself. Neither of us were able to get back to sleep and at 6am the support worker arrived to take charge of the morning bath. Steven manfully got on with his Friday routine of watching a Men Behaving Badly DVD; I got on with my Friday routine of the weekly Sainsbury’s shop at 7am and work at 10am. Later, Steven refused to get out of the car when they got to his Friday day centre because the manager of the positive behaviour unit goes there and “don’t want Dave (name change) to take Steven to M House”.

Let’s not talk about social stories, picture charts and behaviour logs – they don’t even touch the sides when we’re talking this degree of trauma. There is no point in seeking the input from the professionals involved in Steven’s care – they are not allowed to acknowledge how traumatized Steven has been because that (in their eyes) infers liability and that is the thing that matters the most. I don’t give a fuck about liability; I just want a good night’s sleep for the both of us. Whilst I am sitting with Steven, comforting and reassuring him, I am able to bracket off my feelings. Once he is asleep and I am back in my bed, bracketing becomes impossible and the deep sadness of seeing my son so distressed overwhelms me. Despite the obvious drive to avoid any sense of responsibility for their actions, I don’t understand the professional’s position about the trauma. Whenever I have raised the issue over the past year, the attitude I’ve received is of dissmissiveness – they haven’t witnessed it, so I must be exaggerating. But of course, despite everything that happened in 2010, I am still the person that Steven trusts the most; communicates his most frightening anxieties to, so obviously I’m the person who is going to get the full extent of his December anxiety. Basic psychology –  we reveal the most to the people we trust the most. I guess it reveals the enormous chasm within the social care system – where the need to protect the service leads to the denial of the service user’s most basic, natural human experience.

In the midst of all this, yesterday I received Hillingdon’s bundle that they’ve submitted to the first tier tribunal for the Housing Benefit appeal. I need to write a response statement but it’s hard to find the time or motivation when you’re drying a pissed mattress. I’d quite like to watch my new “Dark Knight Rises” DVD before I give attention to a  Housing Benefit appeal, that is, like the DoL of 2010, a complete sham – a state decision used as a cover for a more unseemly action.

Post deprivation of liberty trauma; a vacuous housing benefit appeal; Batman. Happy New Year. We had a fantastic time on Boxing Day. Steven, me and two of the support workers went to Hampton open air swimming pool (incidentally, one of the things rejected on Steven’s person centred plan wish list for being too dangerous). We swam. We froze. We whizzed down the water slide. We sang The Beautiful South songs underwater. We felt alive for two hours. Social care systems can kill the soul; they have nothing to do with living. And how on earth do we begin to address that tragedy?

Straight From The Gut 2

Following last week’s blog post on determining mental capacity ( and the blog by Lucy Series that inspired it), I have been blown away by the messages I’ve received and the conversations that have followed from it. There appears to be a very real interest in incorporating gut/intuitive responses into mental capacity assessments alongside the more measurable, cognitive responses. The general view is that this has to become part of the MCA so that it levels the playing field for the learning disabled. In fact, as one professional from the field commented, it has to happen because as things stand at the moment, to solely rely on cognitive decision-making functioning is discriminatory. The non learning disabled can draw on many processes when making decisions; why can’t the learning disabled?

The very nature of a mental capacity assessment and the fact that they tend to be applied to the very big life decisions puts an enormous unfair burden on the person being assessed. The MCA requires a person to be able to express and explain their cognitive process about the important decision to a collection of professionals, who may have already judged what they believe the “right” decision to be.

Just imagine that you were required to consult, be assessed and get agreement from a body of professionals if you had to make any of the following decisions:

  • where you want to live.
  • how you spend your money.
  • whether, and where you go on holiday.
  • whether you can marry the partner of your choice.
  • whether you can have sex with the partner of your choice.

Even if the non learning disabled were prepared to put themselves through this rigorous scrutiny, think how night impossible it would be if you had to produce a cognitive, reasoned balance sheet for all of these decisions. You can’t bring intuition into it; you can’t bring feelings into it – your reasoning parameters are extremely narrow. But this is the requirement for the learning disabled, albeit borne out of an incentive to protect them.

I am advocating that assessment encompasses other processes by which people make decisions; namely their gut intuition and their feelings. Not only should the assessment include these processes but that they should carry as equal a weight as the more measurable, cognitive processes.

Perhaps the big problem is the fundamental perception of an “assessment”. An assessor asks a question and the assessed is expected to supply an answer. This happens usually in the stark setting of a psychiatrist’s office. That may be a tiny bit restrictive! by all means, ask questions but be prepared to accept that some of the responses may be hard to articulate from a reasoned position. Because the answers come from the gut or the heart and not from the head.

I would suggest that it’s futile to try to determine something as important as mental capacity in a formal 90 minute interview. It requires much more time in both formal and informal environments; carefully recording the person’s verbal, physical, emotional, intuitive, behavioural reactions. If a learning disabled person doesn’t understand or respond to your question, possibly, just possibly, the problem may be in the way you’ve asked the question.

We need a new model in assessing mental capacity. Anyone interested?

 

Postscript:

Here is a conversation I heard on the bus this afternoon between Betty and May:

Betty: “I still can’t decide if we’re having turkey or pork”.

May: “You’re cutting it a bit fine”.

Betty: “I like the taste of pork but I’m not too keen on the smell”,

May: “Have turkey then”.

Betty: “Bob’s gone off it. Do you remember that year he was queer on it?”

May: “We’re having a duck”.

Betty: “DUCK?”

(Long pause)

Betty: “What you having duck for?”

May: “My mother loved a nice duck”.

Betty: “Ah. There you go then”.

 

An analysis of their decision reasoning:

No to pork – unpleasant smell.

Not to turkey – turned Bob queer.

Yes to duck – mother loved it.

Straight From The Gut

Lucy Series wrote another wonderful piece yesterday on mental capacity and making decisions. It might seem that I’m forever latching on to her ideas but I do find her writing so inspirational. For the whole post, see here (http://thesmallplaces.blogspot.co.uk/2012/12/thought-provoking-papers-on-capacity.html)

I’ve had a problem ever since Steven had a mental capacity assessment in 2010, to assess whether he had the capacity to decide where he wanted to live. It was the first time in my life that I’ve seen decision making under such scrutiny; a professional panel not only judging if somone has the capacity to make a certain decision but insisting the person demonstrate their decision making function. And even then, there was the strongest feeling that the professinal may decide the wrong decision has been made for the wrong reasons. It felt very scary.  It seemed very clear to me that Steven was making himself very clear what his opinion was, albeit that it was not the decision the LA wanted him to make. He didn’t even need to be asked; he expressed his opinion that he “wanted to live in the Uxbridge house” several times each day and every day. I didn’t know until we went to court, how the referral from the LA to the psychiatrist had been made; it turned out both the social worker and her manager wrote to the psychiatrist. This is what Justice Peter Jackson had to say about the referrals in his judgement:

 77. “Again on 21 April, the social worker wrote to Steven’s psychiatrist, seeking advice. The letter said

    1. “my overall concern is that Mr Neary wants Steven home. I have spoken to the other professionals involved in Steven’s support and the general views are that Steven would be better supported in an environment that could offer him clear boundaries, structured approach, as well as staff that could manage the behaviours that Steven presents.” The team manager wrote to the psychiatrist on 26 April in the same vein, saying: “Mr Neary snr is challenging most aspects of what is taking place; it is increasingly likely that this will end up in the Court of Protection as we have major concerns about the idea of Steven returning home to Dad’s to live. It is much more likely that we will be looking for a longterm placement for Steven as we feel that this would be in his best interests.” These letters hardly provided a neutral summary of events as a basis for professional advice. “

And when we got to the assessment, the psychiatrist phrased the options to Steven in several different ways but on 24 occasions, Steven answered that he wanted to live in the Uxbridge house. He came unstuck once when the doctor asked him: “which is better; the Uxbridge house or M House?”. It was the only time Steven didn’t answer the Uxbridge house but as I said to the psychiatrist, I think he was confused by the question – to him “better” is what you become after you’ve been ill. Steven was also challenged to give reasons why he liked the Uxbridge house and he came up with five reasons: like to  live with Dad; like to watch my DVDs; like to listen to my CDs; like to play on my computer; like to see my friends. He only came up with one reason for M House (watching TV – which is the only answer he could have given because that is all he did there). So, by the end of the 2 hour assessment, I believed that not only had Steven been very clear in making a decision; he had also been able to demonstrate that he could explain the reasons behind his preference. He failed the assessment.

It appears to me that the emphasis in a mental capacity assessment is always on a cognitive decision-making process; a feeling based decision or a gut based decision is not considered worthy of capacity. And that’s my big problem because that is a ludicrous way of expecting any human being to make a decision.

I work as a counsellor, and typically in that field the two stock, cliché questions from counsellor to client are: “how do you feel about that?” or “what do you think about that?”. The more I do this work, I know that the question that I ask the most is: “what does your gut have to say about that?”. The head, the heart and the gut – we have to use all three and listen to all three when making a major life decision. Obviously we have to engage the head and look at the pros and cons of the options open to us. But our head can’t be the only organ used because it edits stuff. Likewise, it’s important to engage the heart and consider how we feel about the choices but we can get overwhelmed by our feelings and sometimes can’t see the wood for the trees. For me, the gut is the most reliable of the organs we use in our decision-making process – it’s where our truth lies. We may not always hear the answer we want but we will receive the truth. It gets tricky though because sometimes it’s very hard to communicate to others what we have heard from our gut, as the gut has a language all of its own. And if I’m in a mental capacity assessment, I know that I’ve got to do my best to express myself and lets face it, professionals tend to be at their most comfortable with a cognitive argument.

Every day for the past 14 years I have sat in a counselling room with people wrestling with huge life changing decisions; do I leave my wife; do I change my career; do I move to be nearer the family; do I give up drugs; do I want to confront the person who sexually abused me; do I try to get to grips with my obsessive compulsive disorder (The list is endless)? I don’t have any formal research statistics to support this statement but the vast majority of people I have seen, end up following their gut decision, wherever that decision may lead them. I have been seeing a woman who has been trying to decide whether to resolve a nasty work situation by going to an industrial tribunal. We’ve spent weeks weighing up the pros and cons of that option, and she often ends up thinking that she probably wouldn’t be successful. We’ve examined how she feels about the choice and then her feelings of rage, sadness and impotency overpower her. The other day, I asked her to see if her gut had a take on all of this. She immediately looked startled. She smiled and said the response she got was: “Go for it. It’s going to be bloody hard and you may get bruised but you may come out of it a much stronger, wiser person”. And that is what she is going to do. I wonder how that would stand up at a mental capacity assessment.

One other thought – we are also allowed not to make a choice too. And we’re allowed to go for any easy option because we don’t want the hassle of the harder one. Or perhaps we are too fearful to make a decision. That is okay too.

But a disabled person, undergoing a mental capacity assessment isn’t allowed these human traits of uncertainty, decisions based on fear, and most importantly, decisions from the gut. I could choose tomorrow, to leave everything I know and go and travel the world in a camper van. It could be a terrible decision but i can do it. A disabled person wouldn’t be allowed to make that decision. That can’t be right.

We Wish You A Person Centred Christmas

‘Tis the season to be jolly, so just for once, I thought I’d write a blog brimming with Yuletide cheer. The decorations are up and the tree is dressed here at our current residential placement. On the big day, we will be toasting our independence and celebrating the choice and flexibility in our lives by chosing between a tub of Cheeselets and a tub of cheese footballs (or “cheesy bollocks” as Steven calls them, in tribute to Neil Morrisey from Men Behaving Badly). Daringly, in the finest person centred tradition, we may even opt to eat both tubs. And to hell with the Pringles.

I’ve self assessed our Christmas needs; turkey, trifle, Mr Bean DVD and fed them into the resource allocation system. And guess what? Out popped a tin of spam, a tapioca pudding and a cine film of Benny Hill on the beach at Frinton on Sea. Unfortunately, Panel are out on their Christmas Do, but if the spam doesn’t completely meet our needs, I can always enter into negotiations with an alternative service provider for an equitable chunk of luncheon meat.

Before the big day arrives, we anticipate the visit of three wise men bearing their own seasonal gifts. The transformation manager will arrive with a gift wrapped indicative budget, empowering us to creatively cut back on the support we receive next year. The housing manager will descend angelically with an eviction notice, but don’t worry, I’ve got my eye on a well-appointed supported living stable. And bringing up the rear will be the Personalisation Champion with a lovely Christmassy bill from the fairer charging policy team, wishing us a prosperous 2013. It will be a delightful gathering and too much to hope that they’ll stay and join in with our “Stop The Cavalry” karaoke.

Amidst the cards we receive from our family, friends and circle of support will be a glorious parcel from our cuddly in-house psychologist; a selection of festive logs. Behaviour logs. Diet Logs. Incident Report logs. Goodness me, we’ll be well replenished with all those logs.

Christmas wouldn’t be Christmas without a nice board game. No Cluedo or Operation for us at the community living unit. We’ve got a personalised occupational therapy game – “How To Unwrap a Present in 24 Monitored Stages”. It’s absorbing. You score the service user on a scale from 0 to 5 taking factors into account like: concentration capacity; degree of independence shown; understanding of task. Imagine my glee if I can score Steven a resounding “5” as he unwraps his Gipsy Kings’ CD (Don’t ask – he’s been requesting it for months). It’s a shame that Christmas Day is for one day only because I won’t get the chance to test him on the advanced level – ribbons!

Sadly, my carers assessment hasn’t delivered anything festive; in fact it hasn’t delivered anything at all. But bon voyage to all at the staff at the carers centre as they sail off for a well-earned Christmas break on the Algarve. Compared to the funds of the carers grant, Steven’s £10 DLA Christmas bonus may seem small change but it will pay for him to top up his tan for ten minutes at the Virgin Active. And like a shepherd, I will watch over my flock on Christmas night, as I do every other night, as the respite allocation manager has gone on a fact finding respite trip to Lapland to find out how the Laplanders allocate their respite. He’ll report back in April, apparently.

I’ll be rushed off my feet with all the preparations. I’ve risk assessed the living room for tinsel hazards; I’ve got a behaviour management plan on standby in case the new Coldplay DVD induces a meltdown. And if it should snow, we might access the community and go out on our balcony and lob a snowball at a jolly neighbour in the spirit of positive social interaction. Remember kids – inclusion is for life, not just at Christmas.

It’s going to be a great day though. The support workers have the day off, so it’ll just be me and Steven. We’ll eat what we want, watch as much Abba and Fawlty Towers as we want and sing our hearts out to the Gipsy Kings. Just for one day out of 365, we will experience a truly person centred day. Join me in an advocaat.

Bed

Sorry. My apologies. This is another post about the nightmare of being caught up in systems. Systems that are about support. And by God, I’ve got a full house of systems: the social care system; the benefits system; the legal system. You name a system and it’s probably playing a part in controlling my life.

I’ve never felt so physically unwell as I have in the last two months since the housing benefit problem blew up. I am permanently exhausted; I’ve passed out twice recently and I’ve lost about a stone in weight. I’ve seen the doctor and had the blood tests, and apart from high blood pressure, they can’t find anything else untoward, so it has to be the stress I’ve been going through. For the first time in my life, at the age of 52, I’ve been worried about my health.

This morning, I had a fantastic guided meditation with a friend and I was shocked by her summing up: “It’s appalling Mark. In the last four years, Hillingdon have threatened every single human right you can name”. In 2009, they brought about the end of my marriage by making me chose between my wife and my son. In 2010, they breached my son’s (and therefore mine as well) right to a family life by keeping him away from his home for a year. Now, through their vindictive ( a barrister’s word) interpretation of the housing benefit regulations, they are compromising my home. And throughout the four years, they have abruptly cancelled Steven’s support package so many times, they have stopped me working. (I did a rough calculation and I’ve probably lost about £22,000 in earnings since I’ve been entrapped by the support system). Marriage, family, home, work – pretty fundamental things and all lost or screwed up because I got caught up in the system.

I’ve got a chance next year of earning, for me, a considerable amount of money for a time investment that will fit in with my caring responsibilities. I have 90 minutes free on a Friday night and my plan last Friday was to get cracking on the proposal for this project. However, I got home from work to find an email from the brilliant barrister who has been instructed to deal with the housing benefit problem. It needed a reply that obviously took priority over anything else. On Saturday, I get an interputed two hours whilst Steven does a music session, so adjourned the business project until then. Only, that two hours was taken up having to reply to Hillingdon’s nonsensical response to my appeal; it was completely pointless but unavoidable and another two hours wasted to the system. Tomorrow, I have another two hours free in the morning whilst Steven goes to his water aerobics but our bath is leaking water through the light fitting in the living room. Today, Steven got an electric shock and the lights fused, so that time tomorrow will be spent dealing with the plumber. And that’s it; the 5 1/2 hours when I’m not either caring or working has gone and the business proposal, which could lead to me being almost self-sufficient and away from some of the systems, is put to bed for another week.

The other system that I’m finding difficult right now is the legal system, even though it has been my saviour for the past two years. It’s 18 months since our court case and Steven still hasn’t been paid his damages; he has to wait until I’m appointed his financial and affairs deputy and goodness knows when that will come through. His bed is broken; I can’t swap it with mine as mine is even more broken than his. I have been asking the solicitor for months if a tiny amount of his damages can be released to buy a new bed but I’ve been told that the money cannot be made available until after the hearing. I’ve been praised by a high court judge for my committment to my son but I’m not trusted with a few hundred pounds of his damages until I’m rubber stamped by the court. Another system.

Have you noticed that none of this is about Steven. Despite the meltdowns and the fact that his December anxiety (“Not going on a break to M House after Christmas”) has kicked in early this year, looking after Steven is chicken feed compared to the stress caused by being in the support systems. Steven has now been home for 707 days and I’ve not had a problem with him in those 707 days that I cannot handle; I wish I could say the same for the external input.

I have made a decision though. As soon as the damages are paid out, we’re moving away from Hillingdon. That may be fraught with difficulties and could be a case of out of the frying pan into the fire, but nothing can be as bad as we’ve experienced the last four years. My marriage has gone; I’ll never be able to earn a decent living but I may be able to hold what’s left of my family together. If my health holds, it may even be quite exciting. I can even make a good best interests decision for Steven for the move, despite the upheaval.

Last week, I didn’t go to my best mate’s wedding. As my housing benefit has been stopped, I couldn’t afford to lose two days work and pay a support worker for an overnight and some extra daytime hours. I hope our relationship gets through his disappointment and my shame at letting him down. That’s what life in the system is all about.