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Pledging & Unity

June 2, 2016

I’ve felt mightily conflicted the past couple of days. Feel bemused at the level of criticism George Julian got for her interview on the Victoria Derbyshire show. Feel even more bemused by the number of online discussions I’ve had about it since Tuesday and words and phrases like “unity” and “we must work together” keep coming up. Does a different opinion on something have to mean that unity goes out of the window? Are some people/organisations beyond challenge? How can we describe our experience of something without pissing off someone who has had a different experience? Thoughts and questions that kept me awake to 1.30 this morning.

Yesterday a photo was circulated on the Challenging Behaviour Foundation Facebook page. It was a picture of a group of professionals, including the Minister, Alistair Burt, coming together to sign a pledge to stop the over medication of people with learning disabilities when they are in hospital/ATUs.

CBF

I’ve got many thoughts about whether a “pledge” carries any weight at all but will save that for another day. What struck me as interesting about the photo was that one of the pledgees is the responsible clinician in the case of two of the dudes from Seven Days of Action. The day before, one of the mothers posted the story of how Jack, who is due to be discharged any day now (although not back home as the LA won’t agree to that but to a residential placement locally), has been very anxious about something going wrong and the discharge not happening. Eve posted the picture chart the Unit had devised to “help” Jack with his anxiety:

Jack

It chilled me because it was a dead ringer for the photos used when Steven had his mental capacity assessment. The plan is that Jack will be in the hospital and having trips to his new home during the week. At the weekend, he will be going home to his parents as usual. But look at how that chart has been produced and see if will actually help in reducing anxiety. There are real photos of the ATU across Monday to Thursday. Then on Friday there is a clip art picture of a house to represent the new home. Why couldn’t they take a photo of the new home which Jack could relate to. And then there is a great big gaping hole at the weekend with no picture at all. Surely, they could have asked Eve for a photo of home that Jack would recognise.

What was the solution to Jack’s anxiety? Sit him down and help him compile his own plan? Nope. Listen to him and try and understand where the anxiety is coming from? Nope. Empathy? Nope. A PRN lorazepam? Of course. How ironic that the day a psychiatrist signs a pledge to stop over medicating his patients, a member of his clinical team prescribed an additional, heavy duty drug out of laziness or lack of insight.

But that brings me back to people’s different experiences. Can we really expect a hospital, which is quite the most unsuitable place in the first place, to consider any other form of treatment? Would the doctor even think that PRN dose was over medicating? Surely, any medication, where there is a reasonable alternative is over medication. What a task ahead for all the people who signed the pledge.

Unity? Are people allowed to have different experiences? I know that every time I post a positive story of our experience in the Court of Protection in this blog, I will get at least three people reply with their bad experiences. Does my good experience invalidate their bad experiences? Or vise versa? Of course not. Pare it right back and it’s about two people walking through the doors of the same place and one leaving having had a positive outcome and the other leaving having had a horrid outcome. I can’t jump on those people who’ve had it bad and tell them they’re wrong. I can’t dismiss their story as it threatens unity.

What has shown up so strongly since Tuesday is that people have had very differing experiences with Mencap. Some families feel very supported by them; other families feel very unsupported.  Both experiences are real. But I’m uneasy that to present a show of unity, the people who have had poor experiences are expected to keep schtum. Both the fans and the non fans can be totally united in their aim of trying to get people out of ATUs and into their own homes. Personally, I think it’s good to discuss the bad experiences and give them an airing as in doing so, everyone is more likely to get a clearer picture of what needs to be done to achieve the overall goal. I also think it’s completely unachievable. You put 3000 people in a room together and try and get them to come up with a unified voice. It would be quite scary if it did happen.

When Steven was in the ATU, the LA cancelled his holiday. We went the following year with two support workers. It was a place in Somerset called the Unity Holiday Park. One of the support workers loved it. The other one hated it. But we were united in giving Steven a damn fine holiday.

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From → Social Care

17 Comments
  1. As always a really insightful blog. The issue of unity over difference of experience has dogged many a social movement.

  2. Just read above then Finola Moss’ post and my ‘unmeasured ‘ thought was ‘sod unity’ just keep saying (shouting) it how it is until it stops!!!

  3. Shirley Buckley permalink

    Yes just keep shouting how it is.

    • Yes, we have to be objective per se, and, about people, and organisations, and work out from the facts, what has happened since Winterbourne, and why, and what needs to happen.

      We do not now live, in an age of autonomy, but of systemic operation, and a common purpose.

      The individuals involved, are largely irrelevant within these systems, anyone, could be put in any role, and it would make no difference, as it is prescribed by government policy, as they control everything.

      Everyone/ organisation, be they charitable or not, are effectively apparatchiks, doing what they are told by the government, as that is where the money and power lies..

  4. Yes, the psychiatrist ( the responsible clinician referred to above) in the picture I know gives high doses of anti-psychotic medication routinely plus other psychiatric medication, but somehow is saying here that he doesn’t. I don’t remember him ever recommending non-drug treatment, or ever doing anything useful.
    It’s odd that no one mentions that anti-psychotic drugs at very low dose can be used for controlling extreme frustration and explosive anxiety that come with autism, and some psychiatrists use a low dose as a last resort. I saw the effect of one low dose anti-psychotic, and we know that they aren’t just used for psychosis.
    The psychiatrists out there who stick to low doses already, should be in this feature.

    Over-medication is however not only in ATUs but beyond – in community care, care homes and in Supported Living.

    Also, I agree that picture chart is typical of poor quality language work that seems to be a norm – inconsistent as the ATU is recognisable, but no photos of what ‘home’ looks like – no effort to dispel anxiety – are these charts designed deliberately to cause distress?
    A 12 year old could work this out.

  5. simone permalink

    maybe you should start thinking of joining up with user lead organisations such as the local People 1st groups. Why not work with orgs run by people with LDs – why not use your energy to work with speaking up groups rather than giving the Mencaps and other organisations for people with LD. Maybe we can start valuing the role that people with LDs have to lead the campaign for change. Whilst we have little resources, maybe with all of your contacts and know how, people with lDs could benefit from having direct contacts to the Civil servants, the Ministers etc.

  6. Cathy Hodge permalink

    We can agree, or we can disagree.
    But we must not let THEM silence us.
    Keep talking, shouting, screaming.
    The squeeky wheel gets the oil.

  7. Found the same very early on in my blogging experience with the ‘Sen parenting child at school’ thing. At first, it threw me, and then I thought – but our diversity is our strength. Learning disability happens in any family, and every person is different. So often, I think that disability is viewed in a very flat, ‘everyone is the same’ kind of way. I think that’s damaging. Our differences paint a different, and a more realistic (and liberating, I reckon) story.

    Also, I read a really interesting piece on the damage echo chambers cause a cause, when everyone agrees with everyone else – I’ll try and find it for you.

  8. Jayne knight permalink

    I just don’t know what I think so keep some of the views private for our groups on this. I’m not about sticking up or not for organisations as they are the least important unless it’s actually about them and their failings or actions
    I think for the general public a lot would go over their head when people say otganisations haven’t done something. So I think valuable air time needs to stick to the agenda of the person and the hopes of them to get out soon and the criticism etc of organisations to be certainly done and if they are really failing for them to be investigated.
    The charity commission can and will investigate charities and if people really feel strongly it might be better to investigate use of public funds more robustly than a TV programme. I just think the dudes want us to talk about them

    • Sadly, provided the money is in the right accounts, the charity commission, rarely will investigate charities.

      See my NLJ article on net ‘ Charity Matters’.

      That’s why Charities, no longer rarely do what they say on the tin.

      Also, the commission, is yet another government agency.

  9. I guess it’s shocked me how quickly George was painted as the villain. And I’ve found it nauseating how those people criticising her have taken a high moral ground with little insight into their own motives. People overlooking that it was the Victoria Derbyshire show and Victoria asks the questions.

  10. simone permalink

    why are you all so intent on spending your energy on these organisations FOR people with LDs – why not spend your energy working with user-lead organisations – why is not anyone talking about user lead groups. When I worked for People 1st I was focused on what we were doing and tried to reach out to campaigns like yourselves – I really did not waste to much time on organisations that were not in support on what we wanted.. You may find that you have more common with user lead orgs than organisations for people with LDs.

    • I do not know which user lead organisations could be used ?

      Nor, if, or how, they could be used .

      And all media, is controlled, and, orchestrated to support the government’s purpose.

      That is, to house LD/autistic/ behaviour problemed/ etc, as many as possible, in private, increasingly venture capital backed, not charitable, residential, highly lucrative, commissioned and controlled by Local Authority, Placements.

      All legislation, Carers Act, MCA , training, funding supports this alone.

      It does not support LD etc, living in their family home with support and respite, and, neither parents or LD have any rights.

      We have little, if any means of campaigning, if our children are in supported living, we are even gagged on what is happening to them.

      In supported living the COP and MCA rule, and gag information on all services and can exclude parents even finding out what is happening to their child.

      This cannot happen under MHA in ATUs, that is why parents, were able to take out petitions, they cannot once adult/child placed in supported/independent living. .

  11. Supported living is supposed to be living as normal a life as possible, with right to family life, etc.
    However it may be being manipulated by people who want to make money from it, it still is clear as to what it is supposed to be.
    That is what we must come back to in every argument. Even in a can of worms we must find something good.

    • ‘Independent living’, is being more than manipulated, it is being used, as an excuse for lack of proper education/schools from 16,now independent living skills, ( whatever they are in the circumstances),are taught, with funding up tol25.

      And, more crucially it is being used to force removal, against family and disabled’s wishes, from the family home.

      Why ? So that all the money mentioned in video, which is actually more than quoted, available, to the disabled and their family for support under the Chronically Sick and Disabled Act 1970, can be claimed by private providers, whose services, can be effectively in secret, unaccountable, and for life.

      Whilst, the disabled’s right to an independent life, is thus promoted and subverted, his right of choice, and legal competence, is allowed to be removed, by him being rendered ‘incapable’, making his ‘independent’ living, in view of the lack of support in the family home, to be deemed, in his ‘best interests’, under MCA.

      In any event,24/7 surveillance, no choice living, is not independence, by anyone’s standards..

      That is quite a can of worms.

  12. simone permalink

    thanks for asking People First self-advocacy Andrew Lee is your contact – for further information and contact http://peoplefirstltd.com/ Useful for you to mention me – great you have asked – looking forward to a great working relationships between youselves and speaking up groups

  13. simone permalink

    thanks for asking People First self-advocacy Andrew Lee is your contact – for further information and contact http://peoplefirstltd.com/ Useful for you to mention me – great you have asked – looking forward to a great working relationships between youselves and speaking up groups

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