NHS Continuous Care Meeting for Mum

Discussion in 'I care for a person with dementia' started by jimbosmith, Sep 22, 2015.

  1. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    77
    Hello all,

    I am a carer for my Mum who has Dementia. Unfortunately due to the condition, or maybe the treatments, she has become excessively hyper. She is barred from our 4 local care homes as she is too much for them to deal with. She now goes to a specialist daycare home 15 miles away, twice weekly. They offer 1 to 1 care that she needs.

    Social Services ran an initial checklist to see if she was severe enough to be put forward for NHS Continuous Healthcare and by the 2nd question she was.

    We have someone coming out to see her on Monday morning but am wondering what to expect? I am concerned that my mum who can put on her best behaviour for visitors will not show the traits that make her qualify for this care package.

    I am very happy with her current daycare home and ideally would like 4-5 days a week there with maybe 1 night respite every other weekend, as well as a few weeks holiday respite.

    Saying that makes me feel like a male diva, as i'm not sure even if that is on the table? Someone has mentioned that they may take her to one of their own units and away from her current day care?

    Does anyone have any knowledge and experience on NHS continuous care?

    Thanks, as always, in advance for your help. I do feel guilty as I only tend to come on here when I need help or have a question as I've not got any spare time at the moment. I will pay back what I owe one day.

    Jim
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    I know next to nothing about continuing healthcare but I can tell you categorically that 4 - 5 days day care plus respite is not asked too much. I get 5 days day care plus several hours sitting service a week plus a few weeks respite a year, and that is through social services. Continuing healthcare is usually for people with complex needs who score Severe in more than one assessed category, and if granted, will receive all care for free, usually in a care home but sometimes in their own home. So, no, you're not asking too much imho.

    If you think your Mum can put on good behaviour for visitors, write down in detail what her usual behaviour is like. The list of assessed categories is online somewhere and I am sure someone can post it for you.
     
  3. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West
    There are a number of useful threads about CHC on TP jimbo. I'll try and post links in a bit.
     
  4. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West
    My wife's application was greatly assisted by the fact that two of the participants in the meeting (the District Nurse and the Head of Adult Mental health for our area) knew her really well. Will your mum have people who know her well present?
     
  5. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    77
    Thanks Beate

    We did receive a full 5 days when Mum was originally in her local care homes but after they refused to take her she went to a specialist home with 1 to 1 care, which was more expensive and that resulted in 2 days care. When it comes it's great, but it's not enough and the effect are showing on my dad and myself.

    May I ask do you have the sitters at weekends?
     
  6. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    77

    Thanks Stanley for your posts and the video. I've just watched that and from my take on it the Pointon case backs up our situation.

    May I ask the outcome of your application and what impact that has had?

    Unfortunately we don't have a District Nurse. Our GP has batted this one away many times despite me asking.

    I'm hoping that come this Monday I can put the stress of dealing with GP's and SS into a box and burn it in the garden!! :D
     
  7. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    Yes, some of the hours are, although that scheme is being cut down at the moment but I am fighting tooth and nail to keep all my hours. The weekend hours are vital to me as there is no Day Centre at the weekend.
     
  8. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West
    Yes, it was successful jimbo. But I have to say that this was largely due, in our case, to the professionals involved driving the process. Of course, I wanted the process to be successful from our point of view and, as anyone would, tried to prepare as best I could. But it became clear early on in the meeting that there was unanimity about what the outcome should be.

    Your GP sounds like a waste of space. But at least the Social Workers seem convinced you have a case.

    As for what it is reasonable to expect, it didn't really work like that. Once the decision was confirmed we were fairly quickly told the budget that was available and what it would fund.
     
  9. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    77
    Thanks Beate. Wish you well on keeping those hours. Totally understand you needing them. We are the same but our local care home did say they would take Mum for respite but require SS for additional staff, so it did make me wonder if they would take her on weekends in that case
     
  10. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    77
    Good to hear Stanley. Although I appreciate all cases are difficult, do you think what I originally asked for would be too much? Or would say your budget cover it?

    When SS filled out the Decision Making Tool, Mum scored an A on Behaviour and A on Cognition and A on Psychological/Emotonal.

    I'm not sure who else I could get involved since I don't have a DN? Maybe the day care manager at her current specialist home?
     
  11. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West
    I agree with Beate that what you want would not be unreasonable.

    The day care manager would seem to be an appropriate person to comment on your mum's needs.
     
  12. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West
    Do let us know how you're getting on jimbo.
     
  13. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,955
    I'm very interested too - we'll be facing our own version of this in the near future.
     
  14. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    77
    Thanks both for the interest.

    Was all set at 10am ... but nobody showed. I rang up and apparently they have messed up the appointment in the diary.

    Stanley - those links are fantastic. I have a sheet ready to bombard them with when they do turn up.

    Another lady who is part of the NHS came by today to see my Mum on a different matter and she said in her opinion my mum should get it, but obviously was just passing opinion. She made the point that he condition is ongoing and is irreversible.

    I spoke to mums current day care centre and asked them if they had the funds from the nhs if they could employ someone extra so my mum could have the additional days, and right enough, they would be willing. They are fantastic so was glad that if it comes off she can go there.

    Couple of questions if anybody knows the answers?

    Will my mum lose her attendance allowance? This is not the end of the World for us if she does, but it would obviously be a bonus if she does?

    As long as i spend 30 hours a week or more with my Mum I am still entitled to carers allowance?

    I will come back to this thread to update but if anyone else has any questions on the process feel free to pm me or reply here and I will try and help.
     
  15. nitram

    nitram Registered User

    Apr 6, 2011
    19,022
    Male
    North Manchester
    "Will my mum lose her attendance allowance?"

    If your mum is funded in any means by the CCG/LA she will no longer be self funding and will loose her attendance allowance.

    "As long as i spend 30 hours a week or more with my Mum I am still entitled to carers allowance?"

    If your mum looses her qualifying benefit, in this case AA, you loose your eligibility for carer's allowance.
     
  16. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    77
    Thanks Nitram.

    It comes via the DWP and is paid with her pension in 1 lump sum.

    EDIT: It's the over 65's equivalent of Disability Benefit?
     
  17. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,654
    North West
    I think that's true re benefits if living in a care home nitram but my understanding is that otherwise your benefits are not affected by CHC as the first page of this doc explains.
     
  18. nitram

    nitram Registered User

    Apr 6, 2011
    19,022
    Male
    North Manchester
    CHC is broadly analogous to a hospital stay as regards loss of any DWP payment, there may be obscure exceptions but if you look at the rules for a hospital stay you won't go far wrong.
     
  19. nitram

    nitram Registered User

    Apr 6, 2011
    19,022
    Male
    North Manchester
    stanleypj

    Posts crossed, agree that you are correct, it was the bit about day care in a care home that threw me.

    Not thinking straight, just spent a frustrating half day battling with 'professionals' at a dementia related meeting!!
     

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