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To Earth With A Bump

December 29, 2017

So that was Christmas 2017. We had a lovely time & the George Cole & Dennis Waterman record certainly added to Steven’s cheer.

But before we’ve taken down the decorations, up popped the council twice to remind us that it’s silly to wish it could be Christmas everyday.

Yesterday I got an email from the social worker about the Community DoLS. She’s got to start all over again and redo the mental capacity assessment! She wants to bring a male colleague in the hope that he’ll engage Steven better. This is to assess whether Steven has the capacity to consent to his 2:1 support arrangements which in their eyes amount to a deprivation of Steven’s liberty.

It is such total nonsense, I can’t put any energy into it at all. Does anyone in their right mind consider having support to go to the sweet shop, a deprivation of liberty? When we go to see the Wham! Tribute band next month, are we seriously depriving Steven of his liberty? The acid test has become totally corrosive of how a normal life functions.

Then, next Wednesday we have the start of all the repair work to Steven’s house that have needed doing since he moved in. We’ve got two days next week of a bath being fitted and then two days the following week of Steven’s bedroom being replastered to repair the damage caused by the damp problem. Then the following week we’ll have to redecorate the bedroom again because the council don’t consider that their responsibility.

I haven’t told Steven yet. He’s coped with Christmas pretty well but there’s still the “am I going to be taken away in January” anxiety to contend with. I’ve had endless discussions with the support workers about how to manage those few days because Steven won’t be able to use his room for at least three days. We toyed with the idea of booking into a hotel but scrubbed that as it may play into the fear of being taken away. The best solution is that Steven stays in his adored Cowley house and sleeps in my room and I sleep at my flat for the duration.

I guess the good news is by this time next month the house will look like it should have done when Steven moved in back in October 2016.

I suspect the Community DoLS business will rumble on much longer.

 

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12 Comments
  1. Ridiculous system. Ridiculous perspective in what deprivation of liberty is. Two staff or three as in my son’s case is PROMOTING LIBERTY by giving staff support to be out in the community not depriving liberty. People who say it’s a deprivation have got the wrong end of the stick. It is more likely to do with making cuts to providing a second member of staff. Absolutely ludicrous notion that having staff support is a deprivation of liberty. HA Ha Ha, so ridiculous! 😂

  2. I’d say it was a good thing that the Council is prepared to reconsider Steven’s capacity… except that I think danutag57 may be on to something and the Council will be delighted to create a Catch-22 situation where if you have capacity to consent to your support, then you don’t need support, because you have capacity.

    Of course, that is a false syllogism which misunderstands the concept of ‘capacity’ as a fixed, multi-applicable quantity, rather than something that needs evaluated in the context of the person’s ability to cope with the prevailing circumstances, but it’s just the sort of financially advantageous mistake one would, regrettably, expect Hillingdon to be eager to make.

  3. LizzieD permalink

    the thing that matters about capacity is that it is ISSUE SPECIFIC. My daughter lacks capacity in all sorts of everyday “normal” things, but she is very clear on where and how she wants to live., and which carers she likes.(Expressing it may not be easy to people who do not know her well)

    So if Steven was happy to be accompanied to the sweet shop last year, why keep reassessing? It can be used as a kind of Trojan Horse way of constantly snipping away at Care Plans

    • Yes, LizzieD, expressing capacity to people who don’t know your daughter well is a huge point missed by people working in this area. How does anyone not get that communication about important things happens with those we trust.

  4. shirley buckley permalink

    Mark try going on to the Court of Protection hub MB v Surrey County Council and read Judge Parry’s judgment on having capacity. Your comments would be welcome. The case was in the open court.

  5. Weary mother permalink

    Christmas brought a new and terrifying set of issues for my son. He fell and broke his ankle. and elbow – and developed a large clot on his lung, and he has been very ill indeed.

    The usual chaos around his support was exacerbated hugely by it being christmas. Cock ups could have cost him his life.

    Family was all of this, and an excellent hospital team – plus his saviour ambulance man.

    Care arranged for his vulnerable flat mare was agreed and funded – but not delivered.

    Family memebrs with very busy lives , who have in the usual routine of things little to do with the day to day support of my son, dominated all, urging for the immediate institutionalsation of my son. Viewing me as an obstacle..

    I was left repeateing we must wait till we see how he is, into a noisy hail of power and opinion – opinion that I had not ever met in similar quantities in,terms of contact with him or in help and support for him.

    I have been terrified that a cash strapped LA would jump on all this opinion – and transport my vulnerable wise son to a NHS financed institution.

    A terrible additional stress at this time. I have now fully realised how vulnerable my son will be when I am gone.

    And I was quite unprepaared for this family orchestra..

    My son is more physically disabled from his fall – has additional health needs. But he has no less capacity to think and reason, and with time he can regain much of his supported (and fought for by me) independence.

    I just have to live forever to ensure this.

    • Oh my goodness Weary Mother. What an absolute nightmare. How is your son now? And how are you?

      • Weary mother permalink

        Much the same Mark.

        I hope you and Steven move into this New Year leaving all the bad stuff – further and further behind you both.

        My kindest best wishes.

  6. Weary mother permalink

    Apologies for the many typos.

  7. kate permalink

    the effing irony. a dad feels ill Christmas week and son has a day or two respite and is suddenly whisked away by bureacratic nonsense and evil to a fuck up system that distresses him and his family and causes desperate misery for all for many many months. Anyone vaguely aware has to know Christmas week is a sensitive time for Steven. Is it a punch in Mark’s face or complete oblivious ignorance or I can’t even think????? to get in touch and suggest looking at DOLs this week? They weren’t so quick to get things right for Steven that horrific year. So maybe their precious review schedules need to be clear that, except in dire emergency, Steven does not need any assessments before during or after Christmas, this year, next year or any year! So they couldn’t decide then that they were depriving Steven and his family of pretty much every basic thing we come to expect in our lives in a supposedly half decent society, but they wonder if it feels a teensy weensy bit much or too little to have two people support S to do what the hell he wants. Give him a break!!! I reckon I have more qualifications than any social worker to assess this one for S so he is independent, safe and supported well, even though I have never met the man. Leave him alone. Leave his Dad alone. Contact them later in the New Year ask S and M what they want and need and ask Dad what he thinks S needs and wants too as a double check. And ask S’s team. And listen and respond for and only in S’s best interest. There you go! Then leave it. I reckon they will be fine!
    It is distressing how we people with learning disabilities and their families are treated and how legislation that comes in to protect us is twisted and used against us……………..

    I hope Dad makes clear that no non-urgent DoLs discussions should ever be considered again for S except at “normal” routine straightforward times of year.

    May the Nearys have a wonderful 2018 and may the social worker take leave next Christmas…

  8. kate permalink

    ooops, rant over. I only logged in to see if the family had survived the 30th and was having more festive fun than anxieties over what crimes might ever be done to them again by the “system”, given the anniversary!

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