Do More. Be More. Love More.

I’ve been feeling pretty wasted the last few days. It’s been a horrible week on Planet Social Care. The disappointing outcome to the Richard Handley inquest where a team of barristers for the professional “interested parties” managed to convince the Coroner that a verdict of “neglect” cannot be handed down if several parties all had a contributory part to play in a cumulative neglect. That was followed by the dreadful scandal at the National Autistic Society run home, Mendip House. Quite appalling abuse of the people living took place but no criminal prosecutions will be taking place. And the NAS has shown utter contempt for those residents, their families and the charity’s many supporters by first trying to hush up the scandal over a number of years and then once the serious case review was published they created a separate Twitter account to respond to peoples’ concerns. In the midst of these two major media stories, there has also been the latest chapter in Steven’s Community DoLS adventure.

The first two stories trigger off a familiar response in me. Do you remember the chant that Charlie Dalton used to give in the cave in the film Dead Poets Society? “Got to do more. Got to be more”. I hear a similar voice in my head when one of these monstrous scandals breaks. I have to do something about it. NOW. I lay awake for hours on Friday night trying to think of something that I could do, even imagining forming a new charity that would operate with the integrity that so many of the big ones lack. Fortunately a good dream that night stopped that one in its tracks. In the dream, I was with a group of people surveying some land with the intention of building something new in the space. The land we were inspecting had previously been a grand estate but was now just a wasteland. In the centre of this estate was a large void. One of the group got into the void for further inspection and got trapped there amidst the blood, gore and wreckage of the hundreds of bodies that had been buried there at one time. We wisely decided that this was no place to make our home and moved off to find our own space. The big charities are not of this time. They have no relevance anymore. But they will continue to occupy a rotting space and it would be foolish to try and muscle in on that space. More wise words from George Julian on Twitter yesterday and I calmed down. I do enough. That’s good enough.

Whilst pondering the Community DoLS yesterday evening and the fact that the assessor has concluded that Steven lacks the capacity to consent to his support arrangements and is therefore deprived of his liberty, I came across a fantastic piece of writing from Rob Mitchell. It’s a five star composition (and gets an extra star because he name checks me and Steven):

Where is love in the DoLS scheme? Okay, I’m a comedian. It’s nowhere and it ain’t going to find its way into a mental capacity assessment. I’ve written before but I feel that capacity assessments are loaded against learning disabled people. By their very nature, an assessment is totally head centred. Feelings and intuition don’t register. Love wouldn’t appear anywhere on the form.

Steven challenged this absence of love during the assessment on Tuesday. The assessor was trying to find out if Steven knew why the support workers go with him to the shop. The care plan reason is to support Steven with road safety; help him with the money; protect him from himself if a dog suddenly starts barking. Steven thought about the question for a while and answered “Cos Alan and Des are Steven Neary’s friends”. Now that’s not an example of Steven’s limited understanding or his lack of language. Yes, he wouldn’t consider the “official” reasons but that’s exactly how he sees it. They go with him to the shop because that’s what friends do.

I had further clarification of this yesterday afternoon. Steven and I were doing our Saturday taping session and were playing George Michael’s “Outside”. In two weeks time, we’re going to see a Wham! tribute band. I reminded Steven of this and he immediately checked out who was going with him. When I said me and Alan and Michael, the smile couldn’t have been bigger. He went bounding off into the hall singing “Club Tropicana, drinks are free”. I don’t want to over interpret his reaction but it reminded me of those times when I’ve been getting ready to meet up with friends and that moment when your heart sings a silly song in recognition of the friendship you’re about to experience.

That’s love.

And you don’t need to do more.

9 thoughts on “Do More. Be More. Love More.”

  1. Mark .. again..excellent.

    My son has been in hospital since before Christmas. He very nearly died. And he was further injured by acccident in the hospital, and this is extending this.

    I have been by his bedside all day, for most of this time. The staff have learned to know him; have got to know him and have all commented on what a stoical, interesting, funny and wise person he is.

    People visiting other patients have commented variously. But all pleasantt. Many stop to chat with him. Others seem bemused at our constant sharing with each other – and our laughing together – our mutual love and enjoyment; some have asked me if I am ‘his’ mum.

    My son has attended the same day centre for nearly 30 years. He is very sad that not one visit or telephone call has been made to him or about him, from this centre – not one. .Not one whiff of human contact from the people he has viewed as being pretty central to his life.

    He felt wrongly..that he has had a place in theirs.

    Paid people – paid to pretend to relate ..from 9-4pm..

    Our sons and daughters will always give so much more than they will ever too many people whose livelhood rests on them for their etc. 9-4 pm, paid for,…. pretending.

    1. It’s horrible but true what you say. Hope someone contacts you from reading this to improve your son’s and your situation and faith in people.
      Really, it’s not that difficult to be good to each other, so what is wrong with these people?

  2. Hi Mark.
    There’s a draft consultation for Decision-making and Mental Capacity on NICE’s website which we all need to comment on.
    I used to work as an IMCA and have commented already on this, and wonder if any others here have seen this.

    You’ll find on page 6 the recommendation that ‘1.2.2 Practitioners supporting a person’s decision-making should build and maintain a trusting relationship with them’.
    This I believe is important detail, and wasn’t demonstrated in your son’s encounter with the social workers. It is difficult to do in practice, but is vital and necessary.
    I wouldn’t want strangers questioning me about my life and wouldn’t be able to think clearly.

  3. Re my comment above. For balance:

    Day care (and social care in general) has been slashed to the bone, with many day centres closed over the last decade. There is some truth in that some centres were little more than daytime warehouses for vulnerable people.

    However these closures and the reduction in day (and other) support has had a massive impact on vulnerable people who need support and the people paid to support them.

    Many people so employed, have been through the huge stress of multiple redundancy culls. New staff employed with little if any experience of caring; many also employed on short term contract with poor pay and little or no job security. Agencies are currently very busy ptoviding people by the day, to fill in for sickness, annual leave, and people leaving the care sector..

    All this must contribute to the lack of warmth/ relationship we can see between managers and staff in their care of our sons and daughters.

    It can explain …but not excuse it..for Statutory employed people are well paid to ensure..lead and do, much better than this.

  4. Weary Mother so much of what you say is so true.

    When my son’s day centre went in 2006, he tried all the alternative opportunities put in its place, but was damaged by the indifference shown to him by one particular member of staff employed by one of the new ‘not for profit ‘ organisations replacing the day centre. They were no way as good as the staff in his old day centre. He finally left the service altogether and stayed at home with us for five years. Luckily he had a wonderful key worker, who kept in regular touch with us the whole of the five years.

    My son is back in the system, and back using the last remaining day centre left in the borough. He has changed, and is very challenging at times. He has been back home with us for the last month, very agitated and so very unlike the man he used to be. His new key worker has contacted us twice to ask after him (unlike your son’s experience with the day centre he went to for the last 30 years). So sad for him.

    My son’s day centre is now run by a new ‘not for profit’ organisation. They have, in all honesty, been very supportive to us, and I feel so grateful that they want to help us to get my son better. I can only hope and pray that he does get better because I do understand that looking after someone who can be aggressive is so very hard. Eventually the carer begins to dislike the person and then it all breaks down. What quality of life is there for the person when everybody loathes them? Incidentally a life ruined by over medication of drugs.

  5. Hi, i dont know where you are , if you are near south of london, orchard hill college are highly skilled. patient people, who sometimes run an adult evening session. Id drive 30 miles in evening to give son something structured to do.He has been going on and off ,for a long time. This is the only day organisation that has been any good at all.

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