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NHS continuing care and help for mum ?

Discussion in 'I care for a person with dementia' started by amy196, Nov 16, 2015.

  1. amy196

    amy196 Registered User

    Nov 16, 2015
    2
    Hello all, I have been reading these forums for a while and finally joined today. My father has advanced alzheimers, so far he has been cared for at home by my mother, they are both elderly (85)To be honest caring for him is getting too much for her now. She does have a 20 min call in a morning from a care company to get him up showered and dressed. He is doubly incontenant and mum takes him to the toilet before bed, gets up at 3 am and 7 am to take him to the toliet, if she doesnt he wets the bed. She has special sheets but even those are washed quite a lot. 3 times last night she had to change the bed in spite of doing the toilet trips. He has started toileting in places where he thinks is the toilet, chairs, stools etc, seems to have no warning or doesnt know he needs to go. My mum is nearly blind, she has severe macular degeneration and has now got another condition on top of this. She really struggles to care for my father, struggles to see where he may have toileted, if his clothes are dirty etc. Dad doesnt talk much now, I think he has lost a lot of words, he is very confused, he cannot do simple tasks now, everything is done for him. He is becoming very angry bless him, easily aggitated. Mum is frightened of him some times, as he threatens her terribly. He is now struggling to get up from the settee at night, so it is becoming a problem getting him to bed as she cant lift him. We applied for nhs continuing care and got turned down. I only found out today after asking if she had heard, she has had the letter 6 months, read the first bit saying no with a magnifier and filed it. Fancy sending small print to a nearly blind person, she doesnt like to ask people to help. I have rang them today and said I want to appeal it, and complain also of them not treating her fairly sending her letters she cannot read without help. I have no clue how to appeal as yet, I just dont like her being dismissed easily, the letter says he only has social needs. I shall try and research what I need to do about this. Should they take her needs into account? the fact that she is lame , had a triple heart bypass and shouldnt lift and is nearly blind? Am I roght in thinking she should be provided with respite so she gets a break ? The assessment which I was present for didnt seem to take into account his mental/ brain issues/ problems, it seemed to be aimed at more physical disability. They say we need dr's support, their dr's are rubbish, they wont come out to him, they have said to mum they wont talk about dad to her ?? who else are they going to speak to ? No support whatsoever from the dr's, he attends the memory service, they say he is stable, which is the biggest joke ever, non of us believe he got the same score on their tests as he did 18 months ago. They did it in private, wouldnt let us see the results, or have him do the test infront of us. Its like a big conspiracy, as if they are all protecting the nhs from him possibly trying to get any funding. Mum and family has taken care of him for the last 12 years , with no support. Finally we have got incontenance pants after asking twice before, we actually got refused and told they didnt believe us. for years we have been buying these. I feel really sorry for them, they have always worked and contributed to the system and in their time of need seem to be struggling to get any help.
    Thank you
     
  2. doodle1

    doodle1 Registered User

    May 11, 2012
    240
    Hi there and welcome to TP. You will find lots of help and knowledge here.
    You are in a really difficult situation. Have you spoken to social services and said that both your parents are ' vulnerable ' adults- vulnerable is a key word. I think you need to stomp up and down a bit and tell their gp how it is on their worst days. You also need to ring the surgery and have the incontinence nurse out to see your dad.
    Although the doctors will say that they cannot discuss your parents with you ,you can ring them and say that although you realise they cannot discuss your parents ,nevertheless you would like to inform them of your parents current situation and then lay the facts out.
    The RNIB should also be able to help your mum.
    Just a couple of thoughts but couldn't read n run
    Thinking of you xx
     
  3. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    your mum can get incontinence pads from the continence service in your area. if you google it, i don't know which area you are in, then you will find a number. If you phone them and explain that he is doubly incontinent and your Mum has been buying pads for months and pls can you have an urgent appt you should get some help quickly. if they put you on a 12 week waiting list I suggest you just keep phoning and tell them your mother is also a 'vulnerable person' and they are heading for a 'crisis' and she will not be able to care without urgent help - those words should trigger a faster response.

    She really needs a carers assessment (you can get that by phoning your social services adult care services duty desk) and again explain that your family is in crisis and you need a carers assessment.

    They should also be getting attendance allowance? the forms will be available from your local council or from the internet but please get help with filling them in - your local carers organisation may well be helpful with this. Your mum should be getting attendance allowance in her own right and then so should your Dad.

    If you need any help with accessing information let me know and i'll give you a hand.

    Thinking of you
    keep posting
     
  5. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,490
    Female
    Near Southampton
    To be completely honest, it does sound as though your father's needs are mainly social as opposed to health ones. Incontinence is very common with dementia along with other things which, athough difficult to manage, are not actually health conditions and even many of the latter don't gain the CHC funding either!
    I'm afraid your mother's conditions will not be included in the assessment either as she is not the person who is relevant to the CHC funding.

    However, they are very relevant to the support you should be having from the Local authority adult services and it is to them that you should be stressing the need for help.
    As already mentioned, you need a health assessment to be made by Social workers for both your parents as soon as possible.

    I too think you should be receiving Attendance allowance.
     
  6. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    You do need to check what the CHC Checklist and Decision Support Tool documents say (Google for them), then see how they apply to your Dad. I'd strongly advise checking through the stanleypj originated thread too, it's a gold mine.

    Looking through what you've said about your Dad, Beacon Healthcare Navigation tools say double incontinence usually merits a B rating as minimum, he might be entitled to an A rating on cognition and he might be entitled to a B rating on behaviour (or possibly even better).

    Your Dad needs at least 2 A ratings (or an A rating on behaviour; or a spread of B ratings) to get through the Checklist, I think.

    In your shoes, I'd be inclined to check whether he's got a better case for CHC funding than your "off the cuff" remarks suggest ... however, the most urgent problem is obviously how do you get better support for your Mum? The current situation is harming them both. Good luck.
     
  7. amy196

    amy196 Registered User

    Nov 16, 2015
    2
    Thank you very much for your replies, I was in a bit of a fluster yesterday, sorry if the message was a bit garbled. I have been busy reading the links and info you have given, my mind is buzzing from it all. They have got incontenance pants now, finally taken delivery of a huge box, they took a lot of work getting them I can tell you, it was a bit of a farce really but it has ended up ok. Keeping them on him is proving to be difficult, he seems to have hit a phase where he is undressing a lot. My dad is claiming AA, my mum has recently got allowed it too, I think she was a bit late in applying but that is sorted. I have not seen the forms that they use to mark assessments as yet, but I shall google them. I have been reading a lot about the process though. Today I have wrote a general letter back saying we want to appeal the decision anyway, just to get the process rolling. Once they provide some information ie scores and what he failed on, we should be able to takle it better. There doesnt seem to have been a multi disaplinary meeting, we just had one lady attend and then a refusel with no information why. One social worker did mention doing an assesment for her, but it never has been done. I shall raise that issue tommorow as they are doing a financial assesment. To save mum going insane we have organised some dementia type care for 3 hours 3 days a week, its costs about £100 a week and it just gives enough time for someone to take her to the shop/bank/ hospital appointments/ get out of the house, etc without having to take dad. He is past the point of being safe on his own in the house now, so has to have someone with him at all times, so she is locked in with him mostly. I have to take my hat off to her, as I looked after him whilst she was in hospital for 6 weeks and it really isn't that easy. She totally needs more care and help, in fact I would say she is at the end of trying to cope anymore, she is a proud and a strong woman mentally, but gets so frustrated at not being able to see. We muddle along, I have to tell her what is dirty and needs washing, as she cant see if there are spills on clothing, or mess on trousers etc. do her mail/fill forms etc She only gets sleep in 3 hours bursts, and is generally run down as she does do everything for him, I mean totally everything . We do love him, this isn't about getting rid of him, they need more then what they are getting at the moment. I cant thank you enough for listening and helping. Thank you.
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Your mum is entitled to a carers assessment and this should give her some free hours of care to give her a break xxx
     
  9. MorbidMagpie

    MorbidMagpie Registered User

    Nov 10, 2015
    23
    England
    To be eligible for continuing healthcare, aside what the person above said about the checklist and DST, a person has to have needs that can't be met by ordinary care workers and needs specialist support from nursing staff. Even then the needs have to be particularly complex.
    You can always appeal a decision about continuing healthcare and you can request a review at any time.


    Living each moment life throws at me as a social worker and with a dad with younger onset dementia.
     
  10. MorbidMagpie

    MorbidMagpie Registered User

    Nov 10, 2015
    23
    England
    Based on what you said in your original post I wouldn't think he would be eligible for CHC. He sounds like he needs a high level of care from staff 24hrs a day but not a nurse, but that is only based on what you have said.


    Living each moment life throws at me as a social worker and with a dad with younger onset dementia.
     
  11. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    My understanding is that whilst specialist support from nursing staff is very often involved in a CHC package, the need for such support is not a prerequisite of eligibility for CHC.

    This extract from an AgeUK factsheet explains eligibility accurately and succinctly:

    Who is eligible for NHS continuing healthcare?

    Eligibility decisions for NHS CHC are ‘needs based’ and rest on whether
    your need for care is primarily due to your health needs. This is referred to as
    having a ‘primary health need’.


    The 'primary health need' is key. And complexity, as you rightly say, is a prerequisite.
     
  12. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,967
    Brixham Devon
    You are quite right stanley; my late Husband was in an 'ordinary' CH-no nursing involved. That was provided by an excellent GP and District Nurses. Pete was given CHC because of the intensity/complexity and unpredictability of his illness.
     
  13. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    Thanks Lyn. And, of course, people who have dementia, or CHC, or are in a care home, or are being looked after at home, never lose their right to medical care free at the point of use (though it is often hard to get them access to appropriate medical care).
     

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