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Charity Begins At (Care) Home

For thirteen years I worked for a counselling charity. A very small, local charity. I won’t name them in case HMRC are reading. The 25 or so counsellors had to be self employed. We had five counselling rooms, provided rent free by the church who also gave the charity an annual grant. The counsellors received a fixed sessional rate of pay. The tricky bit was what the clients paid us. We had to call it a “donation”. It was drummed into us that we couldn’t use words like ” charge” or “fee” or “payment”. Trouble is that the word ” donation” suggests flexibility and choice. Whatever you donate could vary from one session to another and in fact, you could chose not to donate anything at all. Of course, the reality was nothing like that and as times got harder, we could only accept clients who offered a donation starting from £20.

What’s my work history got to do with anything? Yesterday, the CQC published an inspection report of another care home being given an “inadequate” rating. My eyes were drawn to the report because the home is in Hillingdon. The first shock was that the home was run (owned?) by Mencap. I didn’t know that Mencap run care homes. In fact, they have 130 across the country (that doesn’t include supported living) and have 3 in Hillingdon. The responsible individual for all three local properties is Janine Tregelles. I only mention that because this is the same Janine who regularly teams up with the Challenging Behaviour Foundation to issue a condemning statement whenever a scandal in the social care world breaks. Here’s a flavour:

“Mencap & the Challenging Behaviour Foundation call on the government to urgently address systemic failings in the care of people with learning disabilities” (4.9.2012).

The CQC report makes for dreadful reading. I sat there with tears welling up and a boiling rage. I just want to focus on one of the failings because I think it’s the perfect illustration of the chasm between the presentation and the reality. And sadly, I think it demonstrates the impoverished lives lived by the residents in a place run by a charity that proclaims to be “the voice of learning disability”. The CQC noted that the care plans of the four residents (the service can take up to five people) showed that they needed 2:1 support when they were out and about in the community. The staffing records show that between 7am and 10pm each day, only two staff are on duty. The figures don’t square up. If the two staff on duty took a person out, the other three residents would be left home alone. The ” activity ” records reveal that during May, one resident went out five times. For 26 days in May, he had to stay indoors all day. Another resident went out 7 times, although three of those trips were to do the house shopping. One resident has on their person centred plan that he loves going bowling but a staff member interviewed admitted they can never take him because there aren’t enough staff. It’s just so fucking depressing. I checked the CQC reports of the other two Mencap care homes in the borough and the staffing levels look exactly the same. 15 learning disabled people in three placements (you can’t possibly call the places a home) confined because the country’s “leading learning disability charity are unwilling to adequately staff its services. Needless to say, there were no DoLs authorisations for any of the people in the inadequate Precinct Road care home.

Click on the Mencap website today and you’ll see it is splashing its annual Dodgeball Day (Tickets at £27.50 plus booking fee). What chance have the poor sods who live at Precinct Road got of going to a Dodgeball Day? If they’re very very lucky, one of them might be able to pop out to the newsagent to buy the house milk.

I don’t understand how the business, erm sorry, charity works. Presumably Hillingdon council Commissions Mencap to provide this service. Do they give them a donation? Once commissioned, do they just leave them to get on with it?

In the Mencap accounts, it records an income of £175m and 80 to 90% of that income (donation?) comes from central or local government contracts.

It’s easy to see why Mencap want to cosy up to Bubb and his buildings based plans to get people out of ATUs. More ” donations” to the Mencap coffers, regardless of the type of lives its clients will end up living in a Mencap service. It makes all the press releases from Mencap & CBF ring a bit hollow. Oh, and by the way, Mencap issued a statement about the Precinct Road report. Without the CBF. Harold without Hilda. There were no trumpets. No calls on the government to act. Just a rather grudging Apology with extraordinary language like “Mencap is committed to enabling learning disabled people to live the lives they chose to live.” They chose to live? Doesn’t seem much choice at Precinct Road. It’s bastard, not our fault guv, language. From the leading charity that gives learning disabled people a voice.

Wouldn’t it be great if those four people at Precinct Road had a voice and said: “Hello Mencap. We would all like to live our life as we chose and go to your Dodgeball contest today”.

Words and actions. The void.

One Glove & Pete Burns

Steven became totally institutionalized around bed times during the year he was in the ATU. He’d have his bath and be in his pyjamas by 6pm and then take himself off to bed at 9pm. The things he used to do when he was younger, going to a midweek match, or the monthly disco, disappeared off his radar. Try as we might to encourage him, they’ve never reappeared on the radar.

On Friday, he saw a trailer for the ITV special “The Greatest Number 1s of the 80s, which aired last night at 9pm. Right up Steven’s street but a break from routine. He spent the whole day working out how to accommodate the programme. It was as detailed as a military manoeuvre.

” Dad – have my lovely packet of Chewits before all the good songs show?”

“Dad – do my goodnight wee when the adverts are on?”

“Dad – no goodnight talking later. Straight to sleep?”

Plan in place. Adam Ant, we’re ready for you.

The support worker was in awe. There was no artist or group Steven didn’t know. It was one of those talking heads sort of shows with the usual suspects (Pete Waterman, Stewart Copeland) and he knew all of them too. He occassionaly got thrown by how different people looked in their old age (“Nick Kershaw’s got a grey beard. He’s an old man now”). Or looking different just because you’re Pete Burns. (“No more patches. Pete Burns’ eye is all better”).

As the countdown to number one built, the excitement cranked up.

“Gordon Bennett. It’s The Human League. Phil Oakey’s washed his lipstick off”, or

” Michael Jackson’s just got one glove on. That’s a bit silly Michael. Where’s your two gloves? Michael Jackson dropped his glove at Windsor when he went to feed the swans”.

As my mum used to say, “They’re all in it”. The Pet Shop Boys, Wham, Culture Club, all of them with their own Steven Neary back story. The support worker got a bit choked up in a combination of nostalgia and impressiveness at Steven’s invention.

All in all, a nice break from the routine. Steven coped with his own change and we all got a lay in this morning. And it’s supplied a soundtrack to today as well. Whilst having his bath this morning, I heard Steven say: ” Francis. Good joke. Come on Eileen Grimshaw”.

And just now: “When two tribes go to Ranjit’s sweet shop”.

All, so much nicer and normal than being packed off to bed at 9.

O

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Editors Note:

For those who think I’ve taken leave of my senses with this post, here is the link to the Storify about the latest NHS initiative, Q – https://storify.com/HealthFdn/the-q-initiative

Outcomes

It’s coming up to that time of year that I dread. No, not the return of the X Factor. It’s the annual review of whether Steven has achieved the outcomes set by his care plan.

I have to admit that I only look at the “Outcomes” a couple of weeks before the appraisal. For the rest of the 50 weeks of the year, the care plan gathers dust in a lever arch file under my desk. It’s not me being rebellious. It’s just that the care plan objectives are so sterile, so far removed from the way in which Steven and I view his life, as to be meaningless. I write in this blog often of some of the great things Steven gets up to – his jokes, his inventive discos, his conversations, his adventures with the support workers. None of those things make it to the review because, as hard as I might try, I can’t shoehorn them into the four categories we are expected to pay attention to.

Last night, I amused myself in the bath. No, I didn’t do unspeakable things with a soap on a rope. I’d been reacquainting myself with the outcomes and wondered how I might do during an appraisal if I applied them to my life. How did I do?

1. Reduce Risk Behaviours:

Astutely, I spotted that the loaf of bread in my flat was out of date. Risk of food poisoning reduced. I decided to feed the bread to the ducks and wandered down to the towpath. This carried considerable risk as I encountered a man deeply engrossed in his two phones and had to throw myself into the hedge to avoid collision with him. It was either that or risk being catapulted into the canal. The man didn’t see me at all. Clearly, I need a new risk assessment for this activity.

2. Access the Community Safely:

I will be accessing the community after I finish work at 2pm. I will be getting the bus into Uxbridge as I’ve been summoned to the Civic Centre. Last month’s personal budget audit revealed that I had missed off three cab receipts and I need to prove that I didn’t purloin the £24 cab fares I recorded for my own ends. Will I manage this safely? Well, I remember Tufty’s highway code instructions, so as long as I don’t encounter the man with two phones again, I think I’ll be alright.

3. Attend to Personal Hygeine:

Shit! I’m out of Brut.

4. Increase Independence Skills:

This has come along in leaps and bounds and I’m hoping to score highly. When I get back from accessing the community, rather than watch Gladiators with Steven, I will independently be doing the support workers’ wages from the personal budget. Over time, I’ve become much more independent at filing their tax returns and don’t have to seek out the Help page on the HMRC website.

And that’s it. My life in four outcomes. I think I measure up pretty well, don’t you. It would be nice if someone sets me some new outcomes for next year but I expect I’ll have the same four to work towards again.

Herrings (Mainly Red Ones)

Yesterday, the LBBillers met up with NHS England & the Department of Health. On the one hand, it was pretty depressing as we learned once again just how difficult it is going to be to get the #LBBill through Parliament. I’m new to this, but the amount of politics involved in Politics is incredible. And all with a huge question mark whether there is the political will to see disabled people get the same rights as everyone else.

However, it was interesting to hear what work NHS England are already deeply involved in around the ATU problem. They are well into their care and treatment plan review and lots of important information is being revealed. In some respects, they are keeping it very simple and asking the most obvious questions: Why is the person in an ATU? What assessment and treatment is taking place? And perhaps most importantly, have they got a date for discharge and what is their discharge plan?

It seems that the old smokescreens are being blown away. The same old excuses are being given for lack of discharge – The person is “ill”, the person is dangerous, there is inadequate community support for the person, the person needs to be in the ATU to keep them out of the criminal justice system, the person can’t be discharged for “clinical reasons. Fair play to NHSE. They have pushed for clarification on the “clinical reasons” position and found that in most cases, it turns out that these people also fall into the “inadequate community support” category as well.

We talked about the other reasons. The DoH has expressed concern about the clauses in the LBBill that want to remove autism & learning disability from the Mental Health Act because it will put the person at risk of ending up in prison. Stark choice then – ATU or prison? I asked whether the review had shown up how many people in ATUs had committed a crime and were at the ATU instead of jail. The answer? Zero. (In fairness, they may be in other high secure units but there are no figures to corroborate that but in an ATU – a big fat zilch). So, let’s gobble up that herring. The case always put forward is that people are safer in an ATU than in jail. I readily admit that it’s a terrible Hobson’s choice but at least in jail, you have a release date at the end of your sentence. You are unlikely to be left in jail for years at a time, unlike people in ATUs.

What about people being in ATUS because they are “ill”? This, for me, is the drawback of NHS England carrying out this work. Inevitably they are going to view things through a medical lens. Thank goodness they are doing something because the silence and absence of ADASS and LGA is chilling. It just means the results are always going to have a health leaning rather than a social care leaning.

Are people ill? I’ve written about this so often before that I’m in danger in boring for Britain on the subject but I’m disappointed that nobody seems to have done any research on what seems so obvious to me. Besides Steven. Besides Connor, there are a number of high profile cases of learning disabled people in ATUs and there are certain similarities. Something seems to happen to young autistic people as they reach that point of transferring from children’s to adult services. I’ve called it before an existential crisis. I’m going to make a sweeping generalisation now (and you can shoot me down in flames for it) but of all the people with autism that I know, there are some commonalities:

  • They drive straight through bullshit.
  • They have a disarmingly direct way of communication (whether verbally or by behaviour)
  • They are acutely alert to danger to themselves or their wellbeing.

Now these three traits (?) will be extremely challenging to the professionals. I think it’s no coincidence that it’s at these times that people start to get labelled as having challenging behaviour. At the time, the State is being most challenged, flip it over, so the person becomes the challenging one. Most people and families that have been through the transition process into adult services knows that most of it is based on an illusion. Most of the process is designed to hide the reality that there are no services. The autistic person will pick up on this and naturally feel that their very foundation is under threat. Bang. Diagnosis. Medicate, Incarcerate. Better to classify the person as “ill” rather than they are having a perfectly normal reaction to a grim reality. We shouldn’t be surprised. It’s happened to the wider population as well. The drive is to medicalise and pathologise, normal aspects of the human condition.

Question marks about “ill”. What are we left with? One main reason for people being deprived of their liberty and having their Article 5 & 8 Human Rights breached. Lack of appropriate community services. Even that phrase is a bit of a catch all. What are we talking about here? Bubb would like us to believe that we are talking about buildings. But as we all know, Sir Bubb does love his breakfasts, with lashings of herrings. Of course, the bloody buildings are there. People had a home before they went into the ATU. Even if they can’t go back there, I don’t believe there is nowhere for them to go.

So is it people? Are there not enough people out there willing to work and support disabled people in their community? Another herring methinks. We know that the State is neither willing to pay for home care and lacks the will to go looking for home care. Perhaps this is where families need to step up to the plate more. I’ve written in nanu detail about our experience with a personal budget. It is a horrible experience for me but it has saved Steven’s care package. Perhaps we need to bite the bullet, and for all that is wrong with it, accept that we have to put in some leg work. What’s the alternative? Leave the person in an ATU whilst we wait for an agency to turn up? They might never. Out of Steven’s five support workers, only one of them had experience of autism before they started working with him. It hasn’t mattered. As long as people have got good values and are interested in the person they are supporting, they can be trained to do the job. We have to stop waiting for these magical experts. Put an advertisement in the local paper. Put a shout out on the internet. If you build it, they will come.

We know more about the ATU situation than we have ever known. We know that it is predominantly down to lack of will. Perhaps we should use judicial review more. The State might find the will if faced with having their inaction scrutinised by a court.

Whatever we do, let’s stop swallowing all the herrings.

Message At The Waters Edge

A couple of weeks ago, one of my clients got up to leave and said that as it was a lovely day, he’d spend a couple of hours at the waters edge. He is a fisherman, so I assumed that he was popping home to get his rods and come back and do some fishing.

At the back of my flat there are some steps that lead up to the riverbank. Ever since I moved here last November, I climb the steps and turn right, heading towards the lock and the cafe and beautiful pub. I don’t know why but last week I turned left and headed off upstream. After walking for about 10 minutes, I came across a pub nestling by the marina. It’s called The Waters Edge. It’s idyllic.

I’ve been sitting here for the past couple of hours, lost deep in thought whilst watching the life of the river. My attention is caught by the barge that is moored right next to where I’m sitting. The boat is named, “The Voyager’s Energy”. There is something written underneath the name and I get out of my seat to have a closer look. It says, ” Give your energy to the voyage that matters”.

Shit. A few cosmic tumblers click into place. I’d been thinking how bleak this week has been on Planet Social Care. The Bubb report. The ATU dismay template. The depressing news that only 4 people turned up for the Justice for LB session at JSWEC. The utter self indulgence of all those people on the inside of social care who aren’t the slightest bit interested in changing things. I could go on for hours and I probably will.

I’ve had a few conference invites that I haven’t responded to yet. I know why I’ve been putting off replying. I don’t want to offend anyone who organizes or attends these events but I’ve had a growing unease. I’m a good narrator. I know the Get Steven Home story moves people. I know its a very real, human experience. But I don’t think it changes anything. You can be engaged but be cushioned by the belief that “it could never happen here”. I’m beginning to wonder if, the more horrific the story, the less likely it will lead to anything changing. Then a passing swan bites me on the arse and says, ” Don’t be so arrogant Neary. You’re not an agent of change. You’re just a turn”. And I think the swan is right. Because whether it’s ego or blind hope, I’ve assumed that something good might come out of telling the story. But that presupposes social care is interested in the people it is meant to serve. That it is interested in changing things for its customers. There’s not a lot of evidence to support my assumption.

What is my voyage? Where should my energy be going? The waitress brings me my tower burger. And I think of all the people I know, who I neglect, who I’d like to be sharing my tower burger with. Even Steven. He would love the pub and the setting and the bacon. It might not be changing the world but then again, its pointless energy if the world you want to change doesn’t want to change.

I might sit here another hour. It’s a good place for reflection. And sometimes you have to go right to the waters edge to see the reflection.

The Genius of the ATU Dismay Template

I was just watching a debate in the House of Commons. An hour later, I can’t even remember what they were discussing but it was probably something like a review of the review into the levels of Bovril on Bovril crisps. The pattern is always the same. The Minister for Crisps will give the House an update on the progress of the review. The Shadow Minister for Crisps will express his dismay at the slow speed of progress of the review. The Minister for Crisps will remind the Shadow Minister for Crisps that under the previous Government, levels of Bovril went down to their lowest since 1937. Then a back bench minister from the Minister’s side will thank the Minister for the progress made and ask whether his constituents in Newport Pagnellshire can be reassured that the review will reach a conclusion by 2017. The Minister for Crisps delivers that reassurance whilst exchanging a pithy joke about the regions relationship with Bovril. And it will all end with everyone calling for a taskforce/concordat/vanguard to be set up to look into why the progress has been great but very slow. The taskforce/concordat/vanguards will report back in 2019.

Sounds familiar? It is the exact same format used whenever the thorny subject of Post Winterbourne comes up. On Tuesday, Sir Stephen Bubb published his 6 month review of his review. In one breath he declared dismay at the slow progress of change and two seconds later, he congratulated Simon Stevens on the considerable progress made so far. Then, bang on cue, some charity leaders chip in with exactly the same sentiments of dismay and gratitude. The media report on the matter. They start with a headline of the pitifulness of the slow progress and then interview an NHS or DoH bod about the remarkable progress they’ve already made. They then urge us to stand by our TVs for the review of the review of the review in six months time.

It’s absolute genius. It’s beyond challenge. In bemoaning the lack of progress whilst celebrating the progress made, you cover everything. There is nowhere for any challenger to go. All bases have been covered.

It’s also endemic. It is everywhere. It’s a template that fits every political/social/psychological dilemma.

Nobody who has signed up for the template are too bothered about change. Slow progress is to be encouraged – it enables their important work to continue until hell freezes over. The most important thing is to not let the people who have a genuine interest in whatever the issue is, on to the playing field. As Mark Brown pointed out the other day in his blog, (https://thetiredoptimist.wordpress.com/2015/07/14/the-formula/) from time to time, someone will crash through and wander onto the playing field – a death in an NHS setting, a high profile Court case. But even these are dealt with pretty promptly by the template. And before you know it, the person is ejected from the playing field and the spotlight has moved on to more slow progress/fast progress analyses. Usually, the person is gobbled up and their tragedy is used by the powers that be as the latest version of the template.

Goodness knows how that changes. Progress is remarkably slow.

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