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Human Consultations

September 12, 2018

Three things. Bear with me as I try to knit them together.

I got some sort of news from the hospital today. Needless to say, I had to phone them; they didn’t phone me. Today seemed a good day to chase them up as it was a fortnight ago today that the secretary promised to “escalate” my scan results. They outsource all their out patient scans to a private company so that generated another layer of bureaucratic non action. Anyway, the results are in. Liver is okay. No sign of gall stones. But “something is showing up” in my bladder. I had to go for more blood tests this afternoon. The consultants will have their meeting next Tuesday when my case will be discussed. I’ll then be notified of “the plan”. Probably, if I chase them up. My bladder may be showing up something but this whole process is showing up something too. I’m not a human being. I’m reference number P901263. It’s life and death to me. It’s a job to everyone else. The piece of paper I took to the blood department revealed nothing human about me beyond my name. The nurse commented on my “lovely veins”. That’s what I am. Can it realistically be anything else?

Today the government issued their response to the LEDER review into the premature deaths of people with autism and/or learning disabilities. Here is the link: (Don’t worry if you nod off halfway through).

https://www.gov.uk/government/publications/government-response-to-the-learning-disabilities-mortality-review-leder-programme-2nd-annual-report

It’s pretty underwhelming. More consultations. More dates, two years ahead, for the next stage of the process to happen. Talk of considering mandatory training for all staff in NHS. Mencap being given airtime to puff their plumage. They’ve been lauding the training proposal all over social media today presumably with one eye on a juicy contract to provide that training. The voice of the lucrative learning disability industry. I was invited on to a radio programme this afternoon to discuss the government’s announcement. I couldn’t do it. I couldn’t be involved in another discussion of “complex needs” or “this difficult client group”. I couldn’t say the same thing I’m always saying (Don’t worry. I see the irony of that sentence. I’m forever saying the same fucking thing in this blog). The review can’t achieve anything unless it finds a way to see the people it’s serving as human beings. And as important as death reviews are, they have to give regard to the peoples’ lives. Normal, messy, adventurous human lives.

But can it realistically be anything else than more consultations, more plans, more action groups, more pledges, more transformation?

I’m in demand at the moment. I’ve been asked to write a piece about the government’s proposed Liberty Protection Scheme. I haven’t said yes or no yet but I don’t think I’ve got anything new to say. DoLS have become a huge part of the Lucrative Learning Disabilities Industry and I don’t see the new LPS changing that. Reading the proposals, it’s hard to see that they’re about human beings. The bureaucracy is woven into the proposals and that well and truly trumps the human. I can’t debate the proposals on social media because for me it’s not an academic discourse. It’s not about a system, good or bad. It’s about Steven going swimming. I’m scared about “necessary and proportionate” replacing “best interests” because that further dehumanises an already non human group. The bottom line is that I cannot find a space within the debate to talk about human beings living normal lives.

But can it realistically be any different?

I’ve done it. I’ve been there too.  40 years ago I worked for the DHSS. When I worked on the reception desk, I saw the human. When I visited people in their own homes, I saw a human. But when I was sitting at my desk assessing a new claim, I mechanically processed the form that said: “SP. UE. 2Ds. CT. SICB. PA”. I didn’t even register her name. She was just claimant 19634.

It could be different.

It’s less than two weeks until the start of the online Rightful Lives exhibition. Despite the early criticism thrown at the exhibition, I’m amazed at how collaborative the project has turned out to be. Equal contributions from disabled and non disabled people, sitting next to each other in the conference display cases. No fanfares. No patronising differentiations. Just an exciting mish mash of people stepping up to the plate. I want to know what the visitors to the exhibition think and feel. I want to lock the doors until they’ve written their essays about how the exhibition will inform them. I know that’s ridiculously arrogant but I’m not bothered. I want to ask people, “When you look at the exhibits from Jack Moore, or Mikey Brown, what do you see?” Of course the exhibition won’t change the world. It’s just an unusual invitation to be a guest in the lives of some people who don’t normally get guests.  I’d just like it to prompt visitors to remember something about a human they’ve just seen.

Trouble is, you can’t go on a radio programme or write a journal piece where your take home message is “Just see the fucking human being”. It ain’t sexy enough. An anecdote about Steven’s relationship with Sybil Fawlty or a story about my hospital (non) adventure is good for a blog but it doesn’t cut the mustard in a wider audience. I don’t speak the Mencap language. And because of that, the door is wide open for more focus groups consulting to their hearts content, with a vague promise that something may bear fruit in 2021.

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5 Comments
  1. Mark

    They’re only considering mandatory training – after all these words and all this time and all that apparent consultation. At the same time, they are actively advertising Mencap in a government response. Other organisations and campaigns are, in fact, available.

    To state the obvious, unless this proposed training is actually delivered centrally, or just possibly locally, but within a ring-fenced audited budget, it’s never going to happen. The money will be spent on something pressing or should I say “more important”.

    There is something very unhealthy and disempowering about a system that

    *claims to listen to people but does not.
    *Claims to want to consult but actually does so to justify its commitment to very limited expenditure.

    And I’ve worked for DWP and the Department of Health.Good luck with your health issues – hope you get a good answer soon.

  2. All has become an insurance exercise to protect multimillion pound care providers’ insurance premium, based on risk insured which are the people who they make their millions from.

    All the government are continuing to ensure as much profit can be made out of the autistic and learning disabled.

  3. weary mother permalink

    Has anyone who runs a Local Authority – ever asked families…honestly and with humility asked…(without an already signed and sealed plan to cut jobs/service) – asked with open ears and eyes – ‘what kind of job should ‘we’ be doing ? What needs done with your cash – to keep your son or daughter safe and well – and fulfilled’. ‘Mark our accountability…Statutory card for us – so we can do better’ …

    Really meant it?’.

    In my loooong experience – not ever.

    And what usually happens, following years of circular poor judgements the shit hits the fan..- and terminal harm happens to a family(ies) already exausted from decades of doing and protecting – and said family is instantly seen as many things – all negative.

    All useful human communication needed to cure the crises and heal the harm – stops. While the Statutory organisation goes into keep the organisation safe…and.learn nothing.mode

    Until real accountability for where the damage starts, is enforced – all the ‘trainin.,’ money pooped (sorry popped) into the ever widening jaws of ‘charities’ et al,.will achieve zilch.. It will leave even less revenue for caring support – and will just add more burden and pain on families..

    Round and round and round…

    and round.

    • weary mother permalink

      …and the biggy. Countless gazillions of our best pounds have been spent on ‘trainin’ people to behave better – towards our sons and daughters. Behave better – without any clear definition of what ‘behaving better’ looks like.

      If ‘behaving better ‘ …..was defined ..then someone put through the ‘behaving better’ course..could be measured against their former…not behaving ….well enough – ness..ness.

      Gazillions spent on ‘trainin’and not a wink of care given..to finding out if any of it has worked…or was still working a day afterwards.

      And…currently the organisations providing their hard pressed people – for ‘trainin’ don’t give jot..for .if nothing happens out of the ‘trainin’…fthey get their well done tick for spending the money.

      And after all that …LA’s who have Statutory responsibility for the wellbeing of those who should be the beneficiaries of all this behaving better ‘trainin’..dont give a jot either…for they only monitor contract and cost anyway..

      So mums and dads will have to monitor the behaving betterness ‘ trainin’ on top of all the rest…for if they dont..their son or daughter will suffer on…in the same old way….and very very bad things will go on – as – before…quietly ……and unseen….

      Spot the flaw in all this. Guess who benefits…

  4. Pauline Thomas permalink

    Mark you are correct. We are always going over the same ground when we complain about the way people with LD are perceived by the government, and the wider public and also how some organisations feed from it all. The apathy from government departments is shameful. We are like cracked records. We are boring. We are negative. We are also. more importantly, bloody right. Who else in power have they got?

    Like you say in your blog here that the whole process with your health scare and the way it is being handled makes you feel not quite human. Some years ago my friend was in hospital. She was quite poorly and had to be washed by nurses. She told me that one particular nurse when she washed her was always complaining about her workload and how she didn’t like the way she was treated. My friend said ‘Pauline I dread her coming in as there is nothing I can do about it but she just makes me feel so guilty for being her patient’. My friend eventually complained to the hospital and it stopped. I told her that my son has to put up with some people looking after him that are doing exactly the same thing but in his case he has to bear it because has not got the intellect to complain. He has however got the ability to be challenging A black mark for him but nothing for the moaning staff.

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