How to get help

Dear all, I was wondering if anyone knew the answer to the following. When is the right time to apply for continuing healthcare funding and how long does it take? Mum has the opportunity for a live in carer who might be available to work for her in a month or so, but costs need to be considered! clearly there is a distinction between care costs and health costs. Dad needs help with showering, shaving, walking, everything really. He is mute and spends most of the day in bed. When is he requiring health funding versus care? Who do we ask? The doctor?

12 Replies

  • Dear Julie,

    I think your Dad's GP might be a good place to start, or his neurologist if he has one. We haven't applied for funding but reading other people's blogs it seems to be quite a drawn out and complicated process :-(

    and sadly seems to be another one of those things that very much depends on where you live :-(

    You could contact the PSP association nurse for your area for advice - I've always found them so helpful and reassuring. You can find contact details on the home page of the website

    Sorry I can't be more helpful

    Good luck!

    Love Kathy xx

  • Hi Julie

    What is chc funding?


  • Hi Dorothy

    Have a look at this link as its quite helpful in explaining what CHC is

    Lesley x

  • Hi Julie

    I don't know if your mum has a Social Worker but if so, contact them as they too can start a Continuing Health Care Assessment. I would start it now, even if they consider he isn't ready for Continuing Health Care at least he will have had the first assessment done and this can be reviewed, particularly as PSP is so progressive and changes can come so fast.

    Hope this helps


  • Thanks so much, I'll do that then. It's very frustrating for mum not to get any help at all without spending their life savings which she will need to live off as they are only just retirement age.

  • Hi LesleyB

    Thank you so much for the information on the Continuing Care Assessment link. I've just opened it and, as I understand it, the whole process is means tested or have I mis-understood?


  • No, it's not means tested. Are you in the same situation Dorothy? Do you get no help either?

  • I have just clicked on the above link....and it does say it is usually means tested...

    Everything seems to be.... My Mum has PSP and my Mum & Dad have savings and are not legible for any help because of there savings its so unfair they have worked hard all their life and saved and they are penilised for this.

    The only thing that isn't means tested as far as we know is The Attendance Allowance!! Good Luck

    If they are ineligible

    If the person you care for doesn’t qualify for NHS continuing healthcare, their local authority will be responsible for assessing their care needs and providing services if they are eligible.

    However, if they don’t qualify for NHS continuing healthcare but are assessed as having healthcare or nursing needs, they may still receive some care from the NHS. For someone who lives in their own home, this could be provided as part of a joint package of care, where some services come from the NHS and some from social services. If the person you care for moves into a nursing home, the NHS may contribute towards their nursing care costs (see NHS-funded nursing care, below).

    Care services from the local authority are usually means-tested, so if the person you look after is eligible for local authority care, their finances will be assessed. Depending on their income and savings, they may need to pay towards their care costs.

    Click on the bars below for more information on NHS continuing healthcare assessments and eligibility, disputes, refunds and NHS-funded nursing care.

  • I stand corrected, yes you are right, you get it regardless if it is decided it is a health care requirement but it's means tested if it is social care. Psp surely falls under the health umbrella anyway? My mum and dad are in the same boat, dad saved only for his retirement and never really spent anything in order to do so. What was the point? Makes you sick.

  • Funding from social services is mostly means tested, when full continuing health care funding is awarded it is not means tested. You should talk to your GP or community Matron or nurse to see when to apply, there is also information in the carers guide.

  • There is help as i have fought adult social care for my mum on this matter so many times and won unfortunatley my mum passed away on feb 12 this year but i know all the goings on of the local authorities and how they try to force you onto continuing health care instead of living in your own home independantly . I know that the independant living fund has ceased now thanks to our government but there is still something called personalised budget or the old name ( direct payments scheme) it is when the person affected is given control over how they want to be cared for and by who. The local council will try to pass the buck to chc because they try to save their budget money for shit like their annual balls but believe me the only way anyone meets chc is if they have real medical needs and not like my mum where we prevented her having medical needs by giving her the best care we could, hope i have helped you and feel free to ask me anything at all as i dont want all my insight and research into this to go to waste and i know mum would love to have helped anyone in her situation x

  • Dear Demil, I was very sorry to hear about your loss. Your Mum was very lucky to have someone like you fighting for her. Well done. x

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