A Carer In Sepia

Yesterday I received my completed Carers assessment prior to it being presented to Panel. This was following my request for an extra night’s respite.

God, it was depressing reading. I’m not blaming the social worker at all. I know that she’s appeared before enough Panels to know that to even get a sniff of a successful outcome, she has to present the carer’s life through the bleakest lens. Despite the framing, I’m grateful to her for giving a slight possibility that the Panel’s money men might say yes.

Who am I according to the report? I’m old. I’m worn out. I’m lonely. I’m unfulfilled.

Of course, there is some truth in that. But my life is more than that. There are good bits (honest). The thing that upsets me the most is the inference throughout the report that I’m old, worn out, lonely and unfulfilled because of Steven. The tone is always that he is a burden and without that burden, my life would be a cabaret, old chum. In order for the system to maintain its pretence, caring has to be seen as a burdensome duty. A job. Love doesn’t come into it. That’s the thing about social care – blaming is never very far away.

To succeed at Panel, you can only look one dimensionally at the Carer’s life. Aspirations are low. A coffee morning with fellow carers at Age UK. If you’re really lucky, you might get the funds for a one off pampering day. A cartoon carer.

A good Twitter friend counselled me last night by telling me that the assessment is their story, not my story. My upset is because of my expectation that the assessment would describe my reality. He’s spot on. A carers assessment is not about reality. It’s a dance. A dance that you have to learn the steps to pretty darned quickly.

What’s the alternative? The Care Act goes on about well being. Trouble is, well being is in the eye of the beholder. Carers can’t be trusted to establish what constitutes their own well being. Panels probably have well being templates.

Why did I ask for the reassessment? To try and get some time for decent sleep. If I get awarded the extra £65, I won’t be off gadding about. I won’t be at night school. I’ll be in bed catching up on some sleep. Legal peeps tell me we could try a legal challenge on the grounds of sleep being a human right. I appreciate the intent but that’s a bit like using a steamroller to crack a walnut. Have we really come down to rights and well being can only be achieved through expensive court cases.

I dunno the answer. In the meantime, cross your fingers. I might get Panel on a good day and £65 may be coming my way. I won’t feel less lonely. I won’t feel more fulfilled. I might feel more awake.

12 thoughts on “A Carer In Sepia”

  1. I am so sorry you had such depressing reading.
    It shouldn’t have to be that to have a reasonable amount of sleep a case needs to be made that you are a broken, overburdened person. You are a loving parent looking after a son who needs a great deal of assistance day and night . Therefore you need regular breaks. If you were in a job it would be your right to have X time off or Y sleep. It would be seen as absurd and unsustainable to try to cope on less.
    We have had very little respite . I find that the process of begging for it, being assessed and appealing is so depressing, prolonged and stressful that I delay it until things are critical. Also, because respite is intermittent,there is no chance to do much of use with it. After a long and depressing assessment I have been awarded just one night as a special favour. I am not going to rush off and sign up at college, go on a date or travel.I can’t count on there being another.
    What is lost in all this is any idea of ,rationally, how much rest and time off does anybody require when caring for a person with extra needs? This will be different for everybody of course, but it should be possible to come up,with a fair, sensible figure.
    Why can’t it just be :”Mr Neary is very tired as his caring involves XYZ which is tiring in itself and cuts into his sleep. He therefore requires an extra nights sleep.As would anybody.”

  2. The Carers Act, was passed, not to support carers, but to remove, those they care for, to private profit controlled care, to allow on average £3,500 to be claimed by those institutions
    See https://finolamoss.wordpress.com/2014/11/20/carers-act-2014-care-to-ensnare/

    A carers assessment, is almost forced upon a carer, and, a carer is lead to believe, it is in his best interests, and is, in any event, now, the only means of any support ie cleaning or respite.

    Yet, the Act makes it a duty to provide such assessments, but not the support, that the assessment says is needed.

    Why, in these supposedly cash stripped times, would money, be wasted on a system of assessments, that rarely result in any support ?

    And, why waste all this time, and bureaucracy with a separate system, when, the social services, will already know intimately the carers predicament.

    No, the real reason, for this assessment, is that it can serve, as a fishing expedition, to gain evidence of a carer’s incapability to care, by reason of his mental health, stress, safeguarding, for use under the MCA, to show, it is not in the cared for’s ‘best interests’, to remain cared for by the carer.

  3. I totally agree with you Finola. For me, it all boiled down to the last two questions asked: Are you able to continue your caring role? Are you willing to continue your caring role? Could have saved an hour and half and just asked those two questions. But the very fact an assessment exists, cannot help but raise hopes even when you know the outcome

    1. Yes, but it is the surreptitious nature of the assessment, and, the real reasons, or, uses it can be put to, that worry me.

      Some, I think most, after such assessments, may not, be given the option to continue their care.

      This decision is made by the LA/HSCT, who then can apply to the Court of protection, if the carer refuses to agree to their MCA ‘best interests’ decision, that a family carer, is not in the cared for ‘s best interests.

      This carer, will then have to fight a huge state cabal, represented by an Official Solicitor acting for the cared for, the LA, and the Health and Social Care Trust .

      Without any rights- he has none, and the cared for has none, as ‘incapable’ of making any decisions, so both are powerless.

  4. Independence. People centred planning. Best Interests. Wellbeing. It all sounds so benign and positive, doesn;t it? How can we object to “them” being so considerate and concerned?

    If only it wasn;t run through committees, panels and “experts” and being more about their wellbeing than ours. Boxes get ticked, budgets get examined and “they” can feel quite happy, while we are left wondering why we bothered, because it seldom makes any sense in our complicated lives. Stressing the negatives for the DWP, Social Services does make you feel worse.p

    I read with interest last night the article about how much better of peole with mental health problems will be if they get to see a job advisor when they go to the doctors. Some depressed people WILL feel much better in a job – unless it was the job that made them ill in the first place. But the Wellbeing board think it is a lovely idea with no down side – and it will save money. Very good for their wellbeing.

  5. The whole thing stinks, it stinks to high heaven “are you willing to continue your caring role?” If your role is “caring” do you just stop “caring” and cut that bit of you out. Martin is in a residential home in Cardiff that costs £2,400 a week 50% funded by LA 50% funded by Chiltern CCG – work that one out – it was approved in the CoP) No one “cares” for him, the staff do paper work most of the day, (and whatever). He is under a dols (cant go out alone, can go out alone – whatever) Not one penny of the £1,000,000 paid out for him has gone to “care” for him. Who cares??????

  6. It is crushing, having to put yourself down to get what you need. I either want to cry or punch myself in the face after doing this. It is like the dla form filling to describe your child on the worse day. All of this can negatively affect confidence and be carried over into other areas of life. We just all have to do the dance and bloody laugh when we can.

  7. It’s the Cheese shop sketch in Monty Python !
    “What do you want to help you as a Carer?
    “Oh, for my son to go to a good day centre/sheltered employment/outings and activities for the disabled regularly so I can rest or work or whatever.”
    “Sorry, no.we used to have that but the van broke down”
    “Well then, how about weekly respite?”
    “Let me check…oh no, the cat got it”
    What is the point of asking these questions?There’s nothing there ! A legal obligation to assess but not to provide is insulting. You are constantly asked to solve the problem yourself. I have had it suggested I put an ad on a community notice board to try to find someone to look after my son…or perhaps I could take him to the park?
    Always the tension. If I say I am OK we will have nothing. But if I can I cannot cope, what will happen then? I must suggest its is terribly hard BUT I can cope…is that the magic formula?

  8. You poor soul
    Pity they didn’t put the real you but it’s similar to DLA claims where you have to say the most dreadful and hurtful things about someone to get some very basic help
    If say you were a youngish ( younger than me and I’m certainly not old) legal expert, counsellor to people feeling rock bottom, author and well known satiricist plus Abba fan ( well maybe that is a sad one) loving and kind person with a wicked sense of humour and who can smell bullshit a mile off and right up my street who likes a pint !
    And I don’t even know you.
    You could then add having this life style means you need some sleep preferably a few nights a week
    End of

  9. Hi Mark and Steven! Such a brilliant post, and I empathise 100%. These assessments, whether for ourselves or for our young people, are the most soul destroying, debilitating and time-wasting exercise that anyone could ever experience. Also, can anyone enlighten me as to the make up of the eminences who sit on ‘Panel’ (should this not be re-Christened ‘Brick Wall’). I always have a mental picture of top hats, white gloves and an overpowering aroma of mothballs.

    Perhaps it would be kinder if they were totally honest, instead of holding out false hope: “sorry, love, afraid the kitty’s totally skint, Social Care is in Special Measures/bankrupt and the UK economy just can’t afford the half hour walk around the block with half a carer that you begged for” – or words to that effect.

    Alas, I fear that a Power Nap (with one/both eyes open) will be the suggested alternative to your ‘extravagant’ request.

    Best wishes Mark – you’re One in a Million!

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