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Unfair CCG postcode lottery over NHS funding for dementia

Discussion in 'Dementia-related news and campaigns' started by Fluffyval, Dec 5, 2015.

  1. Fluffyval

    Fluffyval Registered User

    Dec 5, 2013
    21
    petition.parliament.uk/petitions/114241

    Hi,
    Dementia is a horrible disease. I have personal experiences of the lottery of NHS funding for dementia patients due to my husband having both Vascular and Lewy body dementia.

    It is concerning that there is any disparity between different responsible NHS Clinical Commissioning Groups in terms of NHS funding for care home costs, known as continuing healthcare funding, and shocking to learn that patients are 18 times more likely to have their care funded in some parts of England than others.

    Please sign my petition to persuade Government to apply the primary care need more equitably to Mental Health criteria.
    If in addition you could ask your MP about this, that would be wonderful.

    The threshold for full NHS Continuing Care funding in dementia is high, and may be withdrawn if needs reduce.
    Though you may ask, as I did, how can needs reduce, the NHS has the impression that dementia disease can get better, go figure.

    There is no legal definition of a health need, but for the purpose of NHS Continuing Healthcare it has been defined as:
    ‘one related to the treatment, control or prevention of a disease, illness, injury or disability and the care or aftercare of a person with these needs (whether or not the tasks involved have to be carried out by a health professional)’.
    By this definition it is obvious that dementia patients qualify for full funding for their care.

    Elements of the new Care Act came into effect in England on 1st April 2015. If a person has care needs that are beyond the local authority’s legal remit for care provision, the NHS should still provide and pay for all care – with no means testing. Also, in any new social care assessment, the assessor MUST take account of potential eligibility for Continuing Healthcare.

    This should in theory mean greater fairness but it isn't happening. Yet!

    Please sign my petition so that the government has to debate this in public.
    It may be in your or someone you love's best interests.

    Also if you could share or investigate that would be great.

    Thanks
     
  2. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    petition.parliament.uk/petitions/114241

    To insert a link, go to the formatting menu and look for the icon in a bathing hat with goggles ...

    Or alternatively ask someone else on TP for a better explanation!
     
  3. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,682
    North West
    You have to post a certain number of times before you can post a link Fluffyval, but AlsoConfused has posted it for you so no need.
     
  4. lin1

    lin1 Registered User

    Jan 14, 2010
    9,320
    Female
    East Kent
    Have signed this petition.
     
  5. lin1

    lin1 Registered User

    Jan 14, 2010
    9,320
    Female
    East Kent
  6. exhausted 2015

    exhausted 2015 Registered User

    Jul 5, 2015
    624
    Female
    stoke on trent
  7. Chrismitch

    Chrismitch Registered User

    Jun 23, 2011
    127
    CJD and the rare types of dementia are always fully funded. Presumably the NHS can afford to pay for a few people but not in large numbers like VD and Alzheimers. Where is the justice in that?!
     
  8. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    My husband has PCA which is a rare dementia. According to UCH there are only about 500 sufferers in the whole of UK but there is no automatic CHC funding as you suggest although I do know a few people have succeeded. What makes you say those with rare dementias are automatically funded?
    Caring for my husband takes all my resources and I do not have time or energy for a protracted struggle to try to get this, especially as it can then be taken away at review a few months later.
    I did talk to my husband's consultant about this and, knowing that I am passionate about looking after him at home myself rather than residential care, she said that unfortunately it is a postcode lottery and here in Herts it is extremely rare that it would be awarded to a patient not in residential care regardless of the severity of their condition.
    Tre
     
  9. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,682
    North West
    Your experience alone makes it clear that it can't be automatic Tre. And the frankness of your husband's consultant, though rare, is helpful if only in the sense that it is yet another piece of evidence that there is a postcode lottery. This is, of course, not right but it is a fact. I know exactly what you mean about the time and energy. We were very fortunate in having sympathetic professionals who did their job as they are supposed to. I could not have fought a battle successfully if I had been on my own.
     
  10. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    Thanks Stanley. The great thing about TP is that people understand what it is really like.
    Tre
     
  11. Fluffyval

    Fluffyval Registered User

    Dec 5, 2013
    21
    Thankyou

    Not at all, many thanks, i will also sign yours :)
     
  12. Fluffyval

    Fluffyval Registered User

    Dec 5, 2013
    21
    NHS funding

    Just a point, NHS full funding is not restricted to patients in care homes, those at home can get it as well
     
  13. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,682
    North West
    That's true Fluffyval but here again we see the difference between what should happen and what actually happens. The CHC process should not allow where the care is taking place to affect the outcome but this consultant knows that in Herts it does affect the outcome. The same is quite possibly true in other places.

    But I appreciate that you want people to know what should be the case and not give up because they are caring for someone at home, as I am in fact. When I informed the GP that Sue had been awarded CHC he assumed she would be moving into a CH. :(
     
  14. Fluffyval

    Fluffyval Registered User

    Dec 5, 2013
    21
    Equal access to care?

    I think we have to get the with their own words, and the whole premise of the chc dst route is to have an englangd wide fair access to care, they should not be doing different things but they do.
    I read this on the NHS Choices website
    Conditions/social-care-and-support-guide/Pages/nhs-continuing-care.aspx

    Extract
    Care and support planning
    If you are eligible for NHS continuing healthcare, the next stage is to arrange a care and support package which meets your assessed needs.
    Depending on your situation, different options could be suitable, including support in your own home and the option of a personal health budget. If it is agreed that a care home is the best option for you, there could be more than one local care home that is suitable.
    Your CCG should work collaboratively with you and consider your views when agreeing your care and support package and the setting where it will be provided. However, they can also take other factors, such as the cost and value for money of different options, into account.

    Pretty plain, go figure how they squirm out of that
     

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