The Stench of Bad Psychology

How do you get rid of a destructive, manipulative psychologist? No, it’s not the opening line of a joke. It’s a question I’ve been wrestling with for over a year.

In February 2011, the psychologist expert appointed by the Court of Protection to report on Steven and his best interests wrote an excellent report. It was instrumental in the judge’s decision that Steven could live in his own home permanently. In his report, he identified some areas that he believed would benefit Steven, input from external professionals, like occupational therapy, speech therapy and, psychology. Absolutely fine and welcome. Unfortunately, the matter was left with Hillingdon to arrange the input and where they have an in-house service, they will not look for a more appropriate resource elsewhere. You may remember the year long battle I have had to arrange respite. Hillingdon assessed a need for respite but the only option they would fund was the very unit where Steven was detained for a whole year against his Article 5 & 8 Human Rights. Thankfully that is all sorted but there has been a more insidious, troublesome issue rumbling away.

An in-house psychologist was appointed to Steven’s care team in the autumn of 2010. Steven was still in the positive behaviour unit at the time and the council were well into their plan of moving him to the hospital in Wales. It was never clear what her role was at the time; lots of talk about “coordinating processes” and “facilitating dialogues”. One of the dialogues she had with one of the workers at the unit, who fortunately hadn’t left their integrity at the door when they clocked on was that “Mr Neary is the tough nut we have to crack”. And I was duly called to meet her for the first time. I think I would have preferred to have had four wisdom teeth extracted with a spoon. It was a deeply dispiriting experience and she wouldn’t let me leave the room until I came up with five positive things about Steven’s experience in the positive behaviour unit. Fortunately, I put my SAS training to good use and scaled the Civic centre walls and made my escape.

Fast forward six months and Steven was now at home and a team was assembled to deliver his care. All agreed that this psychologist would have a valuable role in coordinating all the support and her input on Steven’s behaviour would be important.

One area where she has had considerable input has been in form design. We now have a log for daily purposes. This log has to include; what Steven has ate, what activities he has done, what independent tasks he has carried out, what his mood and behaviour has been like; how have the support staff and myself dealt with any difficult behaviours. I now have over 500 of these sheets. 500 statements like “Had pears, bananas, grapes, satsumas for breakfast”, “Put his pyjamas in the washing machine”, “Watched Countdown calmly”. And every month the team pour over these sheets suggesting how the forms could be amended to produce more useful data.

On top of the daily log, we have an “incident log” and an “incident log summary”. The incident log is an A4 document that is intended to describe any incidents of challenging behaviour that occur. This form has been through many versions. The summary is a table for each month that looks like this:

Date Incident Near Miss Description
1.5.12 0 0  
2.5.12 0 0  
3.5.12 0 1 Steven attempted to throw book at Dad
4.5.12 0 0  
5.5.12 0 0  

And so on and so forth….. Our friend is then meant to analyse the documents and offer her professional support in changing or managing whatever she identifies as amiss.

This might be a productive exercise if she didn’t have such an obvious hidden agenda. Sadly, she is still trying to crack that tough nut. She is a corporate tool, still in a litigatious place, where the function is to find fault at anyone involved in Steven’s care (outside of the council’s own staff). All the dialogue seems geared to one thing – a return to court and Hillingdon being able to say “We told you so”. Never mind that this tactic failed horribly for them a year ago and the judge berated them for trying to find evidence to support a theory they had invented and after a year in their care, they had been unable to build any evidence that was truthful.

Here’s a flavour of what I mean. I sometimes forget to send the logs off. Remiss of me I know but sometimes I might prefer to be watching a DVD or having a music session with Steven. In March, I was a month behind, so submitted two months worth of logs. I was shocked to find that the psychologist had arranged an urgent meeting on receipt of the logs to:” review how incidents are being recorded and managed, given the recent escalation in aggressive behaviours and review how anxiety is being recorded and managed”. And what was this “recent escalation in aggressive behaviours”? Well, in February we had three incidents; in March we had four! Fuck – batten down the hatches, things are escalating out of control. (For those statisticians reading this, in April we had two incidents by the way).

A week later, the psychologist suddenly turned up at my meeting with Steven’s dietician. Do psychologists do that?

A few days later, she requested dates and times of all Steven’s community activities, so she could “observe” the support staff dealing with him. There was no way I could put Steven’s hard working team in that position because the agenda is so murky.

And to the latest encounter that has prompted this piece. Yesterday was the latest two monthly meeting. “Incidents” have remained at 2/3 per month. It would be great if it was 0 but we are dealing with someone with autism here and the awful meltdowns that accompany the condition. Unfortunately one of the recent incidents happened in the day centre Steven attends each Friday and was witnessed by the new speech therapist. So, off we’re launched again. Redesign of forms for clearer data; training for all the staff; observations etc etc etc. The support worker had completed the daily log form and one of the day centre’s own incident reports but had forgotten to do our own incident report. Bring back hanging eh? In the midst of all the earnest discussion, the psychologist said “and of course, we don’t want another airport incident”. It was low, and mean, and possibly unethical. The judge pulled them up on it last year; firstly for the lack of supervision during the incident and secondly in how Hillingdon tried to use the incident to smear Steven in that appalling press release they circulated. And one year one, they are still doing it. I pointed out to her that not only was she dismissing the work done by myself, the support staff and Steven himself but also her own colleagues who have worked hard in the five years since the airport incident. She just smiled.

I have made two complaints now and said that I will not be engaging with her but each meeting she bounces back like an aggressive Tigger. I’ve thought about reporting her to her professional body; as a counsellor myself, I am aware of the ethical standards that exists within the various bodies and I’m sure she must be breaking several of hers.

It is sickening that after being crucified by a High Court judge, being pilloried in the press and as I found out last week at the DoLs conference, being used nationally as the worst example of bad practice, nothing fundamentally changes in the attitude.

And as usual, we’re left with not having a service that could actually be quite useful to Steven.

 

Advertisements

I’ve Fallen For A Girl Called System

I’m not sure what happened to this post – its seemed to get lost somewhere. I wrote it after a frustrating morning in Boots at the end of May.

I’ve Fallen For A Girl Called System

May 26, 2012

The other day, I went to collect Steven’s medication from Boots. I arrived at 9.10am and was asked whether I minded that the labels would be hand written as the “system was down”. I didn’t mind at all and was told my order would be ready in 15 minutes. So, I went and browsed the nearest shelves, trying to decide whether I should take a speculative punt on a packet of corn plasters. I noticed that the woman who served me was now engaged in an engrossing conversation with one of the colleagues at the back of the pharmacy and neither seemed to be attending to my order. Their pose suggested that they were discussing something social; they definately weren’t hand writing labels. Other customers came and went and after half an hour, I checked out the progress of my order with a new member of staff who had just showed up. After much searching, my unattended prescription was found by the sink. My friend and her friend, continued with their absorbing discourse and didnt even give a glance in my direction.The new woman profusely apologised, collected the meds and brought them to the front counter and set about writing the labels. At this point, a customer arrived, announcing that she had a blue prescription. She handed it over to my lady who then disappeared into the pharmacy and started dispensing long glasses of medicine. My unlabelled packages lay expectantly where theyhad been abandoned. Ten more minutes passed; my first friend is still deep in conversation; my second friend is still pouring blue medicine for the blue prescription woman. And I think Im about to go bang. A third person arrived to tidy up the counter and piles my four packets into a neat little stack. She ignores me and the queue and disappears again. A fourth person, smiling, possibly fortified by a skinny latte arrived and asked if she could help me. I explain the story. She reddens and puts my order into a little plastic tupperware box and takes it two her two chatterbox colleagues round the back. They look rather peeved that their yarn has been curtailed by me wanting to be served. They shoot me a resentful glance and 55 minutes after telling me that my order would be 15 minutes, the original woman starts to write the labels. Then the telephone rings and my woman moves my package back to the sink area and answers the fucking phone (See – Im getting very ratty by this stage). I shout “oi” but to no avail. The woman who has been mixing up the blue medicine, puts on her coat and wishes everyone goodbye for the day (it’s only 9.55 in the morning). There are nine of us waiting at the counter. Old ladies are arm wrestling over who can have the three available chairs. And then out of the blue, three new staff appear and in five minutes the queue has gone. Except for me. A man, wearing the badge “pharmacy manager” asks if Im being seen to. I tell him the whole sage and inform him that I have now been waiting for one hour and five minutes. Its at this point, I blow. “Sorry sir, but we’ve been having terrible problems with our system this morning”. I won’t have that. “No. No. Its got nothing to do with your system – its about the crap staff you employ.”

And that got me thinking. he was, of course, talking about his computer system. But there is also a much wider, bigger “system” that many of us are caught up in. What strikes me though is how ready people are to humanise the system and give it such awesome powers to hide behind.

In our case, Neary vs Hillingdon, we heard a lot about the failure of the system. And yes, adult social care is one of the biggest systems we have to deal with. In the imagery work I did to help me get through the awful experience, the system was represented by a massive malfunctioning server, out of sight under the stage in a theatre. And on stage, the players were becomingly increasingly madder as the dias they were standing on, were at the mercy of the faulty server. That made a lot of sense to me, until one day, I asked the image two questions: “who controls the server?” and “who can fix the fault”. The interesting response was that it is the actions of the people on the stage that are causing the problem. They are responsible for programming the server but they have allowed the machine to control them even though it is their duty to control the server.

In our judgement, the judge talked about “collective misjudgement”. That is true and certainly happened once the machine cranked into action. But systems dont make decisions – people do and it was individual people that made the decisions that laid the course for Hillingdon’s plan. In April 2010, a group pf professionals got together and decided that neither Steven, nor myself, must be told of their plan to move Steven hundreds of miles away. That was a decision, probably suggested by one person and agreed upon by the others. My point is – it was a human decision, not a system decision.

It was subsequently decided by the judge that the council had acted illegally on several counts. This is where a person, or a group of professionals suddenly morph into “the council”. “Hillingdon” is born but is it male or female? And it lets those individuals off the hook because no one individual can be held to account; the illegal acts were committed by the council! Minor distractions like individual accountability and personal integrity can be swept away and all we are left with is the get out position that the system fucked up.

A similar situation happened last year in the case of Peggy Davies, an 82 year old woman who for years had taken cruise holidays with her partner. Now in a care home, officials decided that her latest planned cruise posed too great a risk. To give them the neccessary leverage to support their decision not to allow her to go on the cruise, officers at Cardiff council declared that Peggy lacked the mental capacity to make such a decision for herself and slapped a deprivation of liberty order on her. Fortunately, a few days before the boat was to set sail, the court of protection lifted the DoL and Mrs Davies went off on her hols. However, in all the commentaries I’ve read on the case, the focus has been on the “risk averse system” and the system “protecting Mrs Davies’s best interests. People made the decision. Probably one person had the thought one day: “I dont think its a good idea for Peggy to go on the cruise” And from that initial thought, a momentum takes hold and a group of people go into a DoL frenzy. The system may support the frenzy; the system may actually encourage it but it is a frenzy generated by human beings.

It’s endemic. Last week, I visited my new workplace to get a feel of the area. Whilst there I started to chat with one of the gardeners. He pointed out some serious ivy was growing out of hand up the back wall. “Do you know, we’re not allowed to climb up a ladder anymore. Health and safety. The system’s gone mad”. No, it was a group of people sitting around a table who decided that gardeners cant climb up ladders anymore. A risk averse bunch of middle managers, more than likely.

We’re all in systems. In fact, most of us are in so many systems, it is a struggle to hold to a sense of personal autonomy. Systems may be designed to keep us in line; to distort our view of our world but we should try really hard to resist the temptation to use the system as an excuse to avoid responsibility for our own actions. Every time we succumb to that weakness, we lose another part of our selves and thats a shame.

There’ll Be Some Sweet Sounds, Coming Down, From The Night Shift

Thank you so much everyone for your messages and posts after yesterday’s blog post about the SALT and the social story.

I woke up this morning and it was quite clear. The problem with the story was not just the language and the vague content but more importantly, that the context of the story was all wrong. Steven doesn’t get worried about my health out of empathy for me; he worries about what it means for him. And after the experience of 2009, he always worries that he is going to be taken away. The health thing is a red herring – if ever I’m away, it prompts anxiety in him.

So, I’ve completely re-written the social story and the focus is on “Night Shift”. Why do we have a support worker stay over to do a night shift; who does it, and what happens to Steven when a night shift happens. As our whole live is a musical, we end the story with a quick burst of the Commodores (I know it doesn’t quite scan but if we sing fast, it’ll work).

This is it:

Night Shift

 

 

 

What Is Night Shift?

 

 

Night shift is when our friends sleep downstairs in the Uxbridge house

 

Steven Neary sleeps upstairs in his bedroom in the Uxbridge house

 

 

Who Does Night Shift?

 

 

  • § Chris U does night shift at the Uxbridge house

 

 

  • § Alan does night shift at the Uxbridge house

 

 

  • § Ishmael does night shift at the Uxbridge house

We Have Night Shift When ……

 

  • § Dad goes to his meeting with Ian

 

  • § Dad is sleeping at counselling work

 

  • § Dad has a nasty cold

 

  • § Our friend’s bed is broken

 

Where Is Steven Neary?

 

 

When our friends do night shift, Steven Neary sleeps in his bedroom upstairs in the Uxbridge house.

 

 

Steven Neary sleeps in the Uxbridge house every day.

 

 

 

 

Night Shift by The Commodores

 

 

“And if Dad’s not at home

 

Steven’s not on his own

 

Ishmael’s on the nightshift”

 

Taken With A Pinch of SALT

This morning I had a meeting with Steven’s sixth speech and language therapist (commonly known as a SALT) in two years. The purpose of the meeting was to introduce a new social story to Steven. Since my last spell of illness in 2009 that led to Steven being kept away from his home for a year, he understandably has an ongoing anxiety about me becoming sick again. I regularly have to deal with the anxious enquiry if ever I cough or sneeze: “Dad’s not getting that flu again?” The idea of this latest social story is to help Steven manage his anxiety around illness.

Help, No seriously, please help. I have no idea, despite years of practice, of how to deal with absurdities like this. I feel like I’ve taken a serum of nonsense and become paralysed as a result.

The SALT laid the terms of this project by reassuring me that it was a collaborative process and how important it was that I and the support workers take the lead in introducing the story to Steven and monitoring its impact. She then presented me with the story she’d already written; a list of instructions in how to deliver it and a reporting log to record Steven’s reaction to the story and measure outcomes. There was also a subtext during this induction. The SALT had observed two of Steven’s support workers working with him whilst he was making his Friday pizza and she was concerned that they “related to him in different ways”. I know what I’m meant to say at this point but instead I said that I think it is fabulous that Steven, a man with severe autism, is able to build completely unique, individual relationships with each of his support workers and I’m proud that he can relate to them as individuals. That was the wrong answer.

The social story is called: “When Someone Is Ill” and consists of the following five pages:

Page one: “When someone is ill their body can feel many different things”.

Page two: “Their body might hurt. This can include one or more of the following: headache, sore throat, chest hurts, stomach ache, backache”.

Page three: “They might have a snottty nose or they might have a cough”.

Page four: “When someone starts to feel ill there are many ways to help them feel better. They might need to: get some rest, see a doctor, take some medicine”.

Page five: “These things are for helping them to feel better so they can go back to finishing their work and doing fun activities”.

Accepting the invitation that “your feedback is welcome Mr Neary”, I tentatively suggested that Steven would struggle with the length of the sentences and several of the words contained therein. It is not the language he uses and the vague terms are ones he finds very hard to follow. That was the wrong feedback. Meeting arranged for a weeks time to review how the introduction has gone.

We end the meeting with the SALT informing me that there is “no right or wrong way in how Steven reacts to the story”, alerting me immediately that there is a right and wrong way in her eyes. I didn’t want to burden the support workers with the first read through, but remembering that one of the instructions is to only read the story when Steven is in a receptive and settled mood, I spot a window of opportunity for later. Steven’s morning support worker clocks off at 2.30 and the other worker who will be covering for my respite night will be clocking on at 5pm. Steven has already planned that he and I watch the Fawlty Towers episode “Gourmet Night” (“Ducks off”) which he finds hysterical. I decide to read the story between Basil and Countdown starting. I read the story verbatim and when we’ve got to page two, Steven said “Put it away Dad”. My instinct tells me that this will be seen as a wrong reaction and if I stop reading my reaction will be wrong too, so I persist. By the time I get to the end, Steven has said “put it away Dad” four times and by the time Countdown starts, his mood is much less settled. Where is his empathy: doesn’t he realise I’ve got a monitoring form to complete and describing what has happened is likely to be problematic come next week’s meeting.

Here are a few random thoughts I’ve had since Johnathon solved today’s Countdown conundrum:

1) Is it okay to change the content and language of the story?

2) Will the outcome be another tick in the box of Mr Neary being an uncooperative parent?

3) Why, as Hillingdon close all their day centres, is it okay for so much energy to be given to stuff like this?

4) How much does the SALT earn and could that money go towards the closing day centres?

5) Does anybody understand autism?

6) Does anybody understand Steven?

7) If I pretend next week that everything went well, will I be marked down as “disguised compliance”?

8) Why, whenever I go to these meetings, does there feel like so many elephants in the room, I want to sing the Marching Song from The Jungle Book?

9) We have been under social care for the past 8 years. Why, as each year passes, does it feel that the gulf between what could be useful and what is actually delivered, seem bigger?

As I said earlier, please help. This sort of situation disturbs me and I know that my head will be full to bursting between now and next week’s meeting on how to present this at the meeting. And it doesn’t matter at all that my gut tells me that I should be giving this no energy whatsoever. Why does person centred support feel so stressful and disempowering?

Great – It’s National Carers Week

That rather muted fanfare you heard this morning, may have been heralding the start of this year’s National Carer’s Week. The annual event where the lives and needs of carers are in the spotlight (that may mean a three minute slot on Daybreak, squeezed between the weather report and Ross King’s latest news from a Hollywood red carpet). The big charities will talk about the lack of funding, the impact of caring on the carer’s health. Carers will be praised for their stoicism and the word of the week will probably be “unsung”.

What’s it like to be one of the unsung? In 2008, I was given a holiday by the Princess Royal’s Trust for Carers. I was very grateful and it was a brilliant week, even if the venue (Pontins in Blackpool) had been stuck in 1973, since 1973. What struck me as much as the stoicism and sheer dogedness of all the holidaymakers, was what a bedragled lot we were. It put me in mind of that last scene of The Posseidon Adventure, when the survivors emerge from the ship. If you want a good working defintion of the phrase “at the end of one’s tether”, go to a carer’s holiday. It’s hard to buy the latest designer labels in swimwear out of your Carers Allowance. But there was a fantastic atmosphere, in a Cameronish, we’re all in this together, sort of way.

I feel rather pessimistic about this year’s Carer’s week. Over the last year, I’ve noticed a change in attitude towards the disabled and the people who care for them. On a good day, you might get apathy but on a bad day, thanks in no small measure to those great champions of the disabled like Maria Miller and Ian Duncan Smith, you get downright hostility. And when the mood swings from apathy to hostility, it’s hardly the greatest background to bring about some kind of change.

Earlier this year, the Carers Solidarity group that I’m a member of, produced a report about the shocking use (or mis-use?) of the carers grant and how carers assessments are conducted across the country. Statiticians could pour over the report for hours but the bottom line was simple; the will isn’t there and the money that is available, is not being made available to carers. I was naive. I thought that after the media coverage I got for the Neary vs Hillingdon case last year, this report might get a bit of coverage. Sadly it didn’t, although a lady in Newport Pagnell tutted! Apathy. Or perhaps we chose a week to release the report at a time when Katie Price was having some relationship difficulties. I’ve blogged about it before but here are two statistics: 64% of the money LAs receive from Central Government for a Carers Grant do not get through to carers  (and we’re talking millions here). 72% of carers assessments carried out don’t actually lead to anything whatsoever for the carer. Can anyone think of a more pointless (and expensive) activity than that?

The bee in my bonnet is respite. After months and months of haggling, I’ve finally got it agreed that I can receive 42 nights of respite a year. As my son is still traumatised by his previous experience of respite, where he was carted off after one day to a postive behaviour unit, and didn’t return home for a year, we have our respite at home. A carer arrives at 6pm; I go out and meet friends or sit in a pub on my own and write blogs, come home about 10 and the carer takes charge if any caring is needed during the night. It works and it is cheap at £65 per night. Couldn’t the provision of respite be mandatory – the actual content of it, dependent on the circumstances. The respite arrangement has been a lifesaver to me, much more than a nice spa or an Indian head massage  once a year might have been. Wouldn’t it be fabulous if this kind of arrangement was there for everybody who needed it. The money is there; the will isn’t.

I know I’m being fanciful but I’d love National Carers week to produce something as concrete and useful as a statutory respite provision. The chances of that happening are less than zero but as a valuable alternative, we may all be offered, a person centred chiropody session.

The fanfare can stop now. Carers Week will be all over in six days.