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Beta Blockers & Well Being

March 14, 2016

It’s a respite day. And I havent felt as low as this for a long time. Low for myself and low for the world (not that the world is any of my responsibility).

I’ve been trying to process the events of the weekend, in particular being blocked on Twitter by Jan Tregelles, the £130k+ per year CEO of Mencap. I’m in good company because she blocked Sara Ryan, George Julian, Neil Crowther & Justice For LB as well. Yesterday, a well meaning chap from the Wales branch of Mencap suggested that all the people who’ve been blocked should reflect on the part they played in Jan’s actions. I’ve tried. I’ve really tried to have an objective reflection but I’m still left with the thought, “what a total shit”. Laying in bed last night, I dreamed up a new sit-com, black comedy called ” Cut From The Same Cloth”. I had been rewatching Victoria Wood’s brilliant play, Pat and Margaret, about the two sisters, separated when they were 10. “Cut From The Same Cloth” starts with the same premise, only in this story, the two sisters go on to have identical careers as award winning CEOs. They, Jan and Katrina, will do anything to protect themselves and their empires by most notably, crapping all over the poor sods who enable their empires to exist. Sorry nice man from Wales – that’s about as objective my reflections can get at the moment.

I contrived to start my respite early today as I had to phone HMRC for their help with the support workers’ tax returns. HMRC have sent me new tax codes for two of the support workers and I haven’t a clue what they mean. So I got away from Steven’s at 10, instead of 2. I was on the phone 85 minutes. I spoke to three different people in three different teams, in between several choruses of Vivaldi. The last person said, “Oh. What you need is our dedicated carers support helpline. I’ll put you through”. 17 minutes later the same woman was back on very apologetic that nobody in the dedicated carers support team was available but as stated in the dedicated carers support service level agreement, a dedicated carers support advisor would get back to me by 1pm on Wednesday. I tried explaining that I only have respite today and for the rest of the week, I’ll be up to my wrists in, er….  dedicated caring. It made no difference. The realities of being a carer clearly not fully grasped by the dedicated carers support help desk.

This is what respite is like. Huge chunks of it disappear in dealing with the bureaucratic bullshittery of Personalisation.

Whilst on my 7th track of Vivaldi, my mind drifted to the carers assessment the other week. All those questions about what you’d like to do with some time away from caring if Panel agree to allow you to have some. Courses. Coffee mornings. Zumba classes. Pampering afternoons. One thing that you’re not asked about is whether you’d like to do sod all. I’ve scoured the Care Act and all its references to Carers’ well being and nowhere can I find any mention that a carers well being might be improved by doing sod all. That’s all I want to do for the rest of the day. Sod all. Laying on the sofa in my flat, perhaps watching The Lady In The Van, but ostensibly doing sod all. It would improve my well being no end.

There is a link to this seemingly random rant. I think I can join the dots. There is a direct hierarchal line that goes from me on the phone to HMRC and Jan & Katrina. Their empire is built from it. For them to exist, a huge Maelstrom of pointless activity has to be taking place beneath them. They inflate in direct correlation to the amount of nonsense those beneficiaries beneath them get caught up in.

Because here’s a thought. If my well being outcomes were measured by my capacity to do sod all, and just live, just be, then their entire empires would come crashing to the ground. There would be no need for Jans and Katrinas.

Cue end credits with final score by The Brighouse Brass Band.

From → Social Care

  1. Shirley Buckley permalink

    Dont be down lets celebrate tomorrow 15th March NATIONAL MENTAL CAPACITY ACT AWARENESS DAY. Hoorah – lets all be aware of the Act that is declared not fit for purpose, that hasn’t enough money to pay for a vulnerable adult to appeal his deprivation of liberty, that disempowers anyone who even touches the fringes, and an Act that allows those declared not to have capacity not to have contact with their family. The Act that makes a travesty of all our human rights. Make sure you are AWARE

    • The absolute irony/Alice in Wonderland is that courts are aware of the Act per se, but not the provisions of it.

      As they ignore the presumption of capacity, that exists until incapacity, in respect to, a particular decision, which needs to be made, without delay in a person’s ‘best interests’.

      They ignore, that blanket incapacity is illegal under act.

      They ignore that incapacity cannot be based on a particular condition ie autism, behaviour or presentation.

      They ignore, that even if incapacity is shown as prescribed by the Act, this cannot be retrospective, so as to invalidate a Power of Attorney.

      They ignore, that the functional test, presupposes an expert knows the workings of a person’s mind, which is impossible particularly if autistic.

      They ignore the test is completely discriminatory in respect to the autistic, because of their communication difficulties.

      They ignore that the test means nothing to them per se.

      They ignore, that the UN has stated it is illegal, to remove a person’s legal competence on the grounds of disability.

      They ignore that the test is highly discriminatory, as ‘normal’ people are not made subject to it.

      They ignore the Act, that says all steps must first be done to maximise a person’s capacity.

      They ignore that a joint decision must be tried first.

      So, it is the social workers, experts lawyers and Judges that should be made aware of the Act’s provisions.

      And, also what the House of Lords Select Committee Report ,now over 2 years old.

  2. Don’t ever feel rejected by Twitter blockings. I reckon most organisations & their big earners just tweet because they’ve been told it’s now politic to indulge in social media. I don’t believe they can be bothered to pay it any serious interest. Their media officers probably just weigh the responses in the traditional fashion of MPs. Any persistent social media pests like you & JusticeforLB will just be routinely jetisoned.
    After all, it serves to rub your nose in the message that you’re just a little person and not properly grateful for their benificence!

  3. Angela marsden permalink

    Fuck them….stop wasting your soul…plan other holiday with Mark….spend his money on his enjoyment not paying rent which he will get once his money has ran out.
    I know it’s hard to let go..and I can’t do it myself sometimes but again fuck it… you really want to be friends on Twitter with scrum like that?

  4. You have every right to be angry Mark. You do all the work, she takes the salary and the credit despite a 20 year failure to facilitate peoples’ lives, which obviously are going to be shorter than the average anyway. I’d be bloody livid.I dare say you and Sara and George would make a totally fabulous job of running Mencap and peoples lives would benefit overnight because you would not tolerate diversion of funds and energy to anything other than making peoples’ lives better. I am so sick of charities, I’m never giving them a penny ever again.

  5. Pauline Thomas permalink

    Trying to give someone you love a decent life, especially when that someone is learning disabled sucks.

    Mark is doing the job as an accountant. This job not asked for but still he has to do it even though it eats into his respite. Respite that should mean just that, but in reality respite means catching up on paperwork relating to his care for Steven. It is so bloody wrong.

    I personally could not hack any of that but are instead pinning my hopes on my LA giving my loved one some decent services and maybe when the time comes somewhere suitable to live. Praying that all this is in my loved one’s best interests and not in tthe best interests of the people who will care for him.

    I often wonder if the Katrina’s and Jan’s who are in the business of seeing that people with LD get treated fairly, ever dwell on the fact that it can be so stressful and tiring for both loved one and carer that the last thing they want to hear is that the people in the high echelons of power who are tasked with making their lives better are actively blocking the voices of their champions.

    • weary mother permalink

      This, ‘don’t question me or I will take my bat home’ has conditioned us to be nice, for deference from families is expected all over the paid care system. Refusal/change behaviour brings big shock.

      KP and Mencap Jan et al, get off your high horse you are behaving like silly princesses.

      Smelling salts?

  6. Cinnamon permalink

    Please consider it a badge of honour that Jan has decided you don’t share and same values and don’t see eye to eye.

  7. techiebabe permalink

    You have a typo in the title of your play about nasty CEOs. “Cut from the same cloth” is missing a letter in the first word. 😉

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