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The World According To Brian The Snail

August 30, 2018

I used to play a silly game in my head. I haven’t done it for years for obvious reasons. A song would come on the radio. Perhaps Going Underground. I would go, “Ooh that’s 18 years since that was released”. I’d splash around in the nostalgia of 18 years ago for a few seconds. Then I would try and imagine what my life would be like 18 years hence. It was a playful distraction. I can’t do it anymore. I’m not going to hear Karma Chameleon and go “Ooh that’s 35 years since that was released” and then imagine 35 years into the future when I’ll be 94.

Time has become both all important but meaningless to me at the moment. I’m stuck in a place where it is very important to me but completely irrelevant to my outside world. Three examples:

I’m still waiting for the results of the CT scan. Nothing has happened unless I chase it up. I’m now rationing my phone calls. I can’t phone everyday: it’s too time and energy consuming. Six weeks of nothing much.

After my first visit to the GP, I decided, to use an old fashioned phrase, to tend to my affairs. One of the most important things seemed to me to get my bank accounts changed to joint accounts with my sister. That way, if I am dying, Steven’s shopping will still get done and the support workers will still be paid. Three and a half weeks, and three visits to the bank and it still isn’t sorted. In all, I’ve probably spent six hours on the phone to the Nationwide call centre. This week, I was told there had been a “glitch” with the “identity processing” so back to the branch we went. They don’t do anything in branch anymore, it’s just a physical call centre, so I’m still relying on someone, behind the scenes somewhere to pull their finger out.

And finally, I received a letter that revealed after 3 years and 4 months, the Community DoLS application still hasn’t been submitted to court. Steven’s had 4 social workers in that time. I couldn’t give a monkeys about the Community DoLS but it is demanded that I engage with it. The council don’t issue stamp addressed envelopes anymore so I had to hand deliver it to the civic centre. You are forced to engage or else you become the problematic parent.

Yesterday I was following the live tweeting of NHS Ability’s launch of their 10 year #LTPconversations. I’m not sure what LTP stands for – someone suggested Long Term Plan. I have an awful fear it stands for Listening To People. Whatever it means, this is the NHS’s latest blast of hot air to make people with autism and/or learning disabilities one of their top priorities over the next 10 years. And to be the ball rolling, they are holding several LTP conversations with a range of stakeholders. It was very depressing reading. As Julie Newcombe pointed out, as Transforming Care whimpers out in March 2019, is LTP what is replacing it? And 10 years seems an awfully long time. I can’t remember what was number one in the hit parade 10 years ago.

One person’s life is another person’s job. It’s stupid to expect an employee at NHS Ability to see any sense of urgency. I hope I’m not sounding self entitled but I would like someone at the gastroenterology unit to recognise I’m experiencing physical pain and the mental pain of not knowing is pretty tricky to manage too. I suspect my expectations are too high. Why should a call centre operator, following a script, have the first clue about showing a bit of empathy? Again, I’m hoisted by my own silly expectations.

Fast forwarding 35 years on, Boy George will probably be pushing up the daisies. I’ll have fallen off my perch. And from what we know from the Leder report, Steven will probably be discussing Countdown in heaven with Freddie Mercury and Dusty Springfield. But I’ll bet my last Toffo, that in 35 years time, there’ll be the latest NHS think-tank/concordat/Bubble breakfast club starting a new conversation about something we’ve had all the answers to for many years.

I can’t promise that Steven’s Community DoLS will have the stamp of the court in 35 years time though. Can you be assessed for capacity when you’re dead?

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7 Comments
  1. Pauline Thomas permalink

    Mark are ordinary citizens becoming more gullible or have the government, banks, and big health organisations become more sophisticated at pulling the wool over our eyes?

    When they advertise their brand new, better than before, initiatives for better conditions for our loved ones do they really mean it or they just going through the motions? Does it mean another layer of bureaucrats on the payroll to get the new scam out into the public domain?

    When my son was younger, we had never heard of safeguarding, hubs, circles of support, person centred planning, or ‘out in the community’. However his life was better then. It seems the more initiatives we have the less we actually achieve.

    On another note, I hope your CT results come through soon. The waiting must be so long and arduous.

    • I don’t think we’ve become more gullible. I think with bureaucracy, outsourcing and empire building, the person using the service becomes irrelevant. Systems exist to serve themselves.

      • weary mother permalink

        People,,, and professions..working only to serve themselves ?

  2. Hari Mam permalink

    If they can count it towards a target then yes – they’d assess capacity for people who are dead!

  3. weary mother permalink

    So true Pauline

    At a time where austerity – is seen to be the cause of – service closures – minimum pay and no employment benefits for the people who do the support – brutal rationing of support – and burdened and weary families …..,

    the job market for managers, professionals, training and assessment etc experts – to deliver all these shiny words – has ballooned.

    Without any visible positive impact ……on the care and or support.of people with LD or their families.

    Quite the contrary.

    Austerity ?

    Must be a money mine out there somewhere.,,,for some ….people ?

  4. Miguel permalink

    Sending you lots of love

  5. Pauline Thomas permalink

    Mark and Weary Mother you have both hit the nail on the head yet again.

    Is anyone listening though. I doubt it.

    How far have we come from Winterbourne View. Not very far, if at all. How many big guns were involved and who did they shoot? Lots of important CEO’s but no one got shot.

    How far have we progressed since we were introduced to ‘Valuing People ” in 2001. Not very much. A big cut in day centres, and a loss of stability for the people who used them, with a big rise in visits to psychology departments. Parents in those days were being accused of using the day centres as ‘babysitting services”. Let the accusers stand in the shoes of the weary parents!

    Leder report and Transforming Care? Ignored.

    We do not need words anymore, we want deeds.

    Incidentally I read in the paper yesterday that people with dementia are often in pain but because they cannot tell anybody how they feel, they are being ignored and left in agony. Does that sound familiar?

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