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Thread: Another Newbie - angry with the injustice and inequality in the system

  1. #1

    Angry Another Newbie - angry with the injustice and inequality in the system


    My mother was diagnosed with MND just under two years ago after first having symptoms about three years prior to that. She is 82 years old and has been living alone for the last 18 months since my father died. I had been caring for her three full days a week and probably covering up just how much help she really needed. Three weeks ago her legs just stopped working and she called her GP because she was terrified of falling. He said that the time had come for her to be supported in a Nursing Home. She was immediately taken into a local nursing home where she now feels a lot safer and is being helped into and out of bed and on and off the toilet/commode etc. Her arms are clearly getting weaker.

    My difficulty is with Adult Social Care who, and I quote, say that "it isn't a GP who says whether someone needs to be in a Nursing Home, it is us". I recorded a telephone conversation between myself and a senior Social worker who clearly had no idea what MND was, nor its likely effects, and the fact that there is no predictability to it at all. Nobody had witnessed her feeble attempts to get around the house - she'd been having morning and night care visits for two years and all that was being offered in addition was a "Possible" lunchtime call and meals on wheels!
    I have not heard a thing from them in two weeks now, so I have no idea whether there will be any funding from them at all. Mum's house is now being actively marketed for sale as we have no other means of funding her care.
    How can this happen?

    I am so angry with the lack of compassion, understanding and reasoning of the so-called "care" system. It simply isn't suited to the needs of people with MND. It seems that sufferers fall between needing care and nursing, and yet don't qualify for CHC funding until it's too late. I'm wondering whether to start an on-line petition to get MND sufferers the same rights as those with terminal cancer (they are passported straight to CHC if they have potentially less than six weeks to live). The trouble is - there is literally no knowing with MND when the 'terminality' will be evident. So unfair.

    When I was having the arguments with Adult Social Care I asked whether any of them had any medical qualifications or specific MND knowledge - the answer of course was "no". SO how can they possibly say that it is up to them when someone needs nursing care??! I was, and am, so angry.

    So sorry to rant on my first posting. I am currently paying 70 a session once a fortnight for my own counselling as this is just heartbreaking and is breaking me mentally and physically.

    If anyone has anything useful in the way of detail that I can give to Adult Social Care or, indeed, can tell me what the best course of action is I'd be most grateful.

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi chrissie and welcome to the forum,

    Sorry to hear of you and your mum's situation but it is good that she feels safe and is well looked after.

    Did your mum have to pay for her care when at home?

    I think the best route is to push for CHC.

    Maybe see if social services will fund extra care at home including every two hour visits for loo trips.

    Best wishes, Terry
    Last edited by Terry; 8th March 2018 at 14:48.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Hi Welcome to the forum. This is the perfect place to vent, as we all understand. Care! Varies drastically between local authorities, I am lucky here in Hertfordshire, however my mum also has mnd but has struggled to get help in Suffolk. A lot depend s on your social worker, it's worth making a pest of yourself. It might be worth asking MNDA for advice on educating your mum's case worker.
    Wendy x

  4. #4
    Hello Chrissie, your energy will be better used to look after your mum. There is no need changing the establishment. Your answer is Social worker. Once they have assessed your mum's needs, she will receive the necessary services.
    I have refused help for ever, insisting on being self-sufficient and independent and believe me, i felt bad refusing available services. 8 months ago i broke my hip, i am now enjoying what the system can provide.
    Just get a home visit organised.
    Best wishes

  5. #5
    Forum Member
    Join Date
    Feb 2018
    Hi Chrissie

    Sorry to hear that you are having such a tough time. Obviously you want your mum to be safe and it is a worry to have to think about finances. Regarding CHC - everyone is entitled to be screened for this and the nurses in the nursing home are best placed to do this as they are looking after your mother 24 hours a day. Family are also able to give their input. Regarding the social worker - they are not medically trained but they are trained to assess what type of care someone needs. I work as a discharge co-ordinator in a hospital. I qualified as a nurse and midwife before doing this job. In my area adult social care and the NHS are run as one organisation. This is how it would work in our area. I would request the nurses to do a CHC screen and if they score above a certain level the person has a full continuing healthcare assessment. I would also refer them for a social care assessment unless they were self funding (and also have capcity to make their own decisions). A person gets an A (highest level of need), B or C in 11 different areas - these areas are continence, breathing, pressure care, mobility etc. A person is not scored by their illness, but how it affects them, so although my husband has MND, at present, he would not score highly enough to be awarded CHC funding as his needs are not high enough. Regarding terminal illness - in my area people can get CHC fasttrack funding for any illness - as long as it is terminal, the person is rapidly deteriorating and it is likely they will die within 12 weeks. I suggest you speak to the social worker and find out how they have assessed your mother and ask them how your mother's placement will be funded. Age UK do some good leaflets (online) about all these things. If you want any help please send me a private message. Thanks

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