NHS Continuing Healthcare and state benefits

NHS Continuing Healthcare and state benefits

NHS Continuing Healthcare and state benefits

In this article we look at the impact on state benefits when a person receives NHS Continuing Healthcare funding.

Many families report concerns about what happens to Pension Credits, Disability Living Allowance, Attendance Allowance and other benefits when a person receives Continuing Healthcare funding.

The situation can vary depending on whether a person is receiving care at home or is in a care home. It can also depend on what rate of any given benefit a person is receiving.

The benefit system can be complicated, and so we’re interested in your own experience of NHS Continuing Healthcare and state benefits. We know that the advice people receive from various quarters does not always seem to be consistent, and so your own experience will help paint a clearer picture for other families.

We’re particularly interested in:

Attendance Allowance (AA)

Disability Living Allowance (DLA)

Personal Independence Payment (PIP)

Carer’s Allowance (CA)

…but if you’ve experienced changes in additional benefits too (when receiving Continuing Healthcare), please include those as well.

So please share your experience by adding a comment below:

  • If you (or your relative) receive NHS Continuing Healthcare, which of your other benefits have stopped?
  • Which benefits have you kept?
  • Does this relate to receiving care in a care home – or receiving care at home?

(Important: Please share your experience here only if you’re receiving state benefits AND NHS Continuing Healthcare. There’s no need to share the full history of your Continuing Healthcare situation – it’s your experience with benefits specifically that will most help other families.)

Thank you for your help.

48 Comments

  1. Julia 2 weeks ago

    My son is joint funded by both healthcare and Social Services (SS). He has been receiving ESA which is taken from him to pay towards his fees (£400). Today I received notification that he will receive EESA an addition amount and put in a support group and not expected to work. Will he be allowed to keep any if this additional money or will it all go on care home fees leaving a very young man on just 24.99 to live on? This amount is ridiculous. What is the point of the DWP giving him extra if it all goes back to SS. I also didn’t realise that I could claim DLA for him when he is home week. Would our council not then take more money from this payment too? Thanks

  2. Liz 4 months ago

    Hi,
    My mum receives Continuing Healthcare in a care home and has done for the last two years, I have notified the benefits office that she should no longer receive disability living allowance ( I have notified them on the phone 4 times and in writing). They have paid it to her this year not monthly as the letter I received stated but at the end of the year they pay the whole lot in one go. I have left it in the bank account untouched because I don’t believe mum should receive this any longer. Any advice would be appreciated?! Thanks

  3. Ann 6 months ago

    Hi,can anyone answer this question?? I’ll try an explain it as best as i can. Young man 28,lives in a Residential care. Placement was previously funded by the local authority (LA). Out of his ESA he paid an assessed charge calculated by the LA directly to the Residential Care home which left him with a Personal Expense Allowance of £24.90 per week spends. He is now Fully Funded by ContinuingHealthcare (CHC), not LA. Should he still be paying a charge to the care home or not out of his ESA? Are the rules age related & dependent on which Benefits you are on? As it seems elderly people 65+ when Fully CHC funded do not pay a charge to care homes. Soo confusing :/

  4. Ann 6 months ago

    My friends daughter, 20, Continuing Healthcare (CHC) funded, lives at home with family and claims DLA high rate care & high rate mobility. Which is unaffected. Mums Cares Allowance also unaffected. If your son is claiming ESA placed in the Support Group-Contribution-based, this is also be unaffected.
    Our son, 28, is now CHC funded lives in Residential care. (Different Rules for different setting.) Its a hell of a lot more complicated and confusing trying to get answers. That’s still on going. I will post here when I get definitive answers.
    Hope this is of help. Good look. 🙂

  5. Lincoln kelly 6 months ago

    My son is eighteen and in transition. What a nightmare. Will my son lose his PIP if he’s successful getting CHC enough though he lives at home?

  6. Dilys 6 months ago

    My husband has been in a Neuro Rehab centre for 2 years, funded by NHS Continuing Heathcare as he has a tracheostomy. Although his DLA was indefinite both the care & mobility (high level) were stopped, despite me twice challenging this. I just wanted to check if this is actually correct as some residents there do still get the mobility component whilst funded by NHS Continuing Healthcare. I’m looking at getting him home soon and wondered if this situation would change?

  7. joanie 6 months ago

    My sister is in hospital following broken hip, she has advanced dementia. The social worker is saying in my sister’s best interests she should go into a nursing home and she is applying for CHC, meanwhile we are to check out nursing homes. A lot of homes are mentioning top up fees, could anyone advise me who pays these fees, as if it is for my brother-in-law to pay he would be financially strapped. Also does my sisters pension, as and private pension get taken from her, or are these monies added together and paid to the nursing home?? Any advise appreciated

    • Maddy 4 months ago

      Top up fees are paid by a third party ie family members. The way i understand Continuing Healthcare (CHC) funding, your sister will keep her pensions, however beware if it’s Funded Nursing Care – this is a weekly payment made to the home – the rest would be covered by the client.

  8. Ann 7 months ago

    HI Gill. Do you happen to know if the same applies if the young person living in a residential care home if partly funded by the Local authority and Continuing Healthcare ??

    • Gill 7 months ago

      Hi Ann. I’m not certain, but I would imagine so. It’s very difficult to find anyone to answer questions about this situation because when you ring up about benefits, the person you speak to tends to only know about the particular benefit they deal with, but nothing more complex. I can’t remember which benefits number I rang in the end, but it might have been the Disability Service Centre on 0345 605 6055. I explained what I wanted to know and the person I spoke to didn’t know the answer themselves, but offered to get someone more knowledgeable to call me back. I received a call later in the day from someone more senior (perhaps from another office) who was obviously well informed about the impact of CHC on benefits. I was able to fire all my questions at her and she answered clearly and confidently. I’d give that a try, if I were you. If you manage to find out the answer, please post it here as I’m sure it will be useful to others!

  9. P. Harden. 9 months ago

    In regard to this and Gill is right about DLA my daughter is in a nursing home. Though she qualifies for DLA both mobility and care and told it was indefinite they can’t pay her any of it as she is in a nursing home.

  10. connie 9 months ago

    My 94 year old mother suffers from dementia and has been in hospital for 8 weeks during which time her condition has deteriorated dramatically and can no longer return home. She has just been refused CHC funding but I will be appealing although she was offered a contribution of £156 per week. During the assessment, I asked if her Attendance allowance would be affected by this contribution and no-one was able to tell me! I later found out that she would be losing her attendance allowance which would now be at the higher level of £82.30 so the net contribution is actually £73.70 – given that she was already entitled to £55.10 what was actually being offered was a net figure of £18.60! I wish I had known this during the assessment.

    • Jim 9 months ago

      Connie – (1) I infer that the £156 pw is for Funded Nursing Care (“FNC”) when your mum goes into a care home. This is paid by the CCG to the care home for the provision of nursing services. The nursing services fall within S3(1)(c) NHS Act 2006. Have you read the article “Funded Nursing Care: Decisions may be wrong”? This article argues that the secondary legislation – the Standing Rules – is being wrongly interpreted by the authorities and that, on a proper interpretation, anyone found to require the provision of registered nursing services (which prompts the payment of FNC) is eligible for NHS continuing care; (2) That said, payment of Attendance Allowance (“AA”) is unaffected by the so called FNC “contribution”. But the payment of AA would be affected if the local authority is, wholly or partly, contributing towards her care home accommodation costs. It follows from this that if your mum is “self funding” – i.e. she is paying all her accommodation costs – then she is entitled to payment of AA.

  11. Elaine Cull 9 months ago

    Thank you so much for the wealth of information in Angela’s book. We have just embarked on our journey in applying for Continuing Healthcare (CHC) for my Mum and as we progress we are finding your advice invaluable.
    My Mum has been in a nursing home for 12 months. She is 72 and diagnosed with Alzheimer’s 4 years ago and of late Parkinsonism. She has deteriorated so much that now she is mainly in bed., totally immobile, unable to feed herself and has cognitive deterioration. She does not recognise us and her only form of communication is to mumble incoherently.
    Mum has been assessed by the CHC team and. Even denied funding. The assessment meeting in May was attended by a member of the CHC team, a social worker and for the purpose of assessing her skin only the presence of a nurse from the nursing home. We have appealed and are waiting for a date for another assessment. Mums health has deteriorated since May.
    Admidst all this process we have lost our dad who was at home with dementia. He fell and broke his hip and never recovered from the operation.
    This has put mum in a better financial position however (due to now being a sole home owner) we have not as yet volunteered this information until we have a decision regarding CHC. Mum is partially funded at present.
    Have you any advice for our next stage. Many thanks.

    • gary 9 months ago

      change your dads will by dead of variation so you get his share if you can? depends on how the house was owned, not an expert but worth looking at

      • Elaine 9 months ago

        Thanks Gary will have a look into it. Anything advice is welcome. Regards

    • Author
      Angela Sherman 9 months ago

      Thank you for your kind feedback on the book, Elaine. Yes, your mum’s financial position has no bearing on the CHC assessment process, and no one should ask about that until the CHC process is complete. Even then you don’t have to disclose anything; you can just decide to pay – IF she’s not eligible for CHC. Make sure you pick apart all assessment notes and decisions to highlight any flaws, omissions, inaccuracies and misleading statements or language. This may also help you: http://caretobedifferent.co.uk/appealing-a-continuing-care-funding-decision/

      • Elaine 8 months ago

        Hi All. We have appealed against a decision in April to deny my mother Continuing Healthcare (CHC) funding. The home say they are supportive but have found the care notes wanting. The CCG have today reviewed my mothers notes again and have suggested the home completes a four week detailed report so they can establish the extent of my mothers needs , complexity/intensity etc. And after that make a decision whether a new Decision Support Tool is needed.
        After her notes were reviewed we were allowed a short meeting with the CCG representative. I stated that my mother had deteriorated since April and attempted to discuss the health care domains. My mothers cognitive state was rated severe and yet her physiological need moderate. When I challenged this the CCG representative stated that this would mean a double rating and this isnt something they do. In other words because she was rated severe in cognition it means they couldn’t rate her high in psychological needs. I question who’s agenda we are on here!!!
        Also within the communication domain she was rated moderate because the staff can tell by my mothers facial expressions that she is in pain.
        In August they did a similar review of notes and noted that my mothers mobility had improved due to an error by the home. The home had noted in error that on transfer my mother could weight bare. She had actually been hoisted for some months due her mobility declining. The Ccg today stated that this was a matter that we should take up with the home and they can only go by the evidence in the notes.
        This has just given us more imputus to pursue the appeal but would welcome and views / comments.
        Regards

        • gary 8 months ago

          I had the same problem with the MDT carrying out the assessment saying a condition cant be used in two domains , I insisted that it could and had to show her in the DST guidance notes where it says so , you must get a copy of the guidance notes and the DST showing the domains and examples of conditions that warrant each sevrity , they are there to play it down and you must prepare yourself with evidence to prove your case

          Gary

          • Elaine 8 months ago

            Thanks Gary. We are awaiting an appeal so will do a bit more work around that issue. Regards

          • Jenny 8 months ago

            I’ll give “them” the benefit of the doubt. In my experience, some are there to play it down and many more are poorly trained , intellectually lazy and happy to offer “We’ve always done it this way” as the best reason for ignoring the National Framework and guidance notes. I doubt many are even aware of the guidance notes and examples. On a few occasions I’ve wondered if we’ve become a free training facility for the NHS assessors and LA staff. Just a few want to see some sort of fair play – but they are rare!

  12. Julie 10 months ago

    Thank you I will call DWP again regarding this .
    Julie

  13. Gill 10 months ago

    My profoundly disabled 27-year-old son lives in a residential care home currently funded partly by Social Services and towards which he pays £400 per month from his disability benefits. Before applying for NHS Continuing Healthcare funding (for which he may be eligible on the grounds of his challenging behaviour) I wanted to find out what impact this would have on his benefits. He currently receives DLA Mobility Component, and when he comes home to stay with the family he also gets DLA Care Component (Higher Rate). It has today been confirmed to me that if he is awarded NHS Continuing Healthcare funding, he will continue to get DLA Mobility Component because he lives in a care home where there are no qualified nurses or medically trained staff and he receives no nursing/medical care. Apparently if he lived in a nursing home or a care home where he received any medical treatment from qualified staff, he would not get DLA Mobility Component. He will also still be able to claim DLA Care Component for the periods he spends at home being looked after by the family. Our situation is unusual as most people who qualify for CHC are elderly and probably need medical/nursing care, but I hope this information might be useful to families with younger disabled members.

    • Author
      Angela Sherman 9 months ago

      Thanks very much for the information, Gill.

    • Ann 4 months ago

      Hi Gill
      Your situation is very similar to our son’s. He is now fully Continuing Healthcare (CHC) funded, living in a residential care home.
      To claim for periods spent at home as the parent/carer you will need to remain as the appointee for DWP Benefits.
      He will still get the Mobility Component in a residential care home, regardless if you are the appointee or not.
      ESA is not affected. (I’m assuming he gets ESA placed in the support group).
      Your son will no longer pay a charge to the residential care home, when fully CHC funded.
      More spending money for him, but if saving go above £6000 Benefits are affected/stopped.
      The rules are very complicated, my advice to any parent/carer is always seek advice. Easier said than done I know. Hope this is of some help to other parent/carers of younger adults.

      • Gill Williams 4 months ago

        Hi Ann
        Thank you very much for your clear explanation of the benefits situation for a young person in a residential care home – you’ve confirmed what I thought to be the case. We should be having our son’s Continuing Healthcare assessment in the next few weeks (after a long wait due to a shortage of trained nurse assessors in our area) and are bracing ourselves to do battle over interpretation of the eligibility rules. The descriptions of the different levels of need seem to have been written with elderly dementia patients in mind and don’t quite fit young people with learning disabilities. In fact the criteria don’t really fit anybody as every disabled person is different. No doubt they will decide our son just falls short of the required level of need, but we will argue our case. Fingers crossed!

  14. Author
    Angela Sherman 10 months ago

    Thanks for all your comments so far.

  15. Author
    Angela Sherman 10 months ago

    Pension income should continue regardless of CHC, because CHC has nothing to do with a person’s income, savings or assets. Page 31 of this AgeUK Factsheet may help regarding Pension Credits and other benefits: http://www.ageuk.org.uk/Documents/EN-GB/Factsheets/FS20_NHS_continuing_healthcare_and_NHS-funded_nursing_care_fcs.pdf?dtrk=true

  16. P . 10 months ago

    Hi, Relatives AA stopped when went in to nursing home. A person from DWP saw us and said if money they had did not reach £10,00 they would still get some pension credit, which they do. They did not own house etc. before going in to home. In reply to K though another family member in nursing home but not getting CHC had to pay back pension credit because they realised they had paid them too much going back 2 or 3 years, even though they knew their situation, and even saw person in the home.

  17. Sandra 10 months ago

    My father is self funding in a care home in Scotland. He had his Attendance Allowance stopped and does not qualify for CHC as Scotland has changed this. He has had to sell his house. I think it is grossly unfair.

  18. Julie marshall 10 months ago

    Thanks I’m sure it’s because mum is in a residential home. Has anyone else come across this please?

    • SH 9 months ago

      CHC Eligibility can be applied in residential homes

  19. Pauline Cooke 10 months ago

    My dad is receiving CHC at home and is still having AA at higher rate which from my understanding is correct.

    • wendy 10 months ago

      I am trying to get my partner home who has recently been assessed as needing Continuing Healthcare (CHC) but was told that CHC could not be provided at home only care settings. My partner has dementia and they are trying to move her to an area which is over 60 miles away. Can you advise as to what type of care you receive. Many thanks, Wendy

  20. Julie marshall 10 months ago

    Hi my mum is in a residential home and receiving Continuing Healthcare (CHC).. Her DLA has all been stopped. Thanks Julie

    • Julie marshall 8 months ago

      Hi again after all your advice I contacted my MP…And mums DLA has been reinstated from march 2016 when it was stopped, so thanks very much guys because after contacting DWP twice myself and dial contacting them and being told mum was not entitled to the mobility element I had more or less accepted that was the ruling. But if you are in a residential home you can still get the mobility element….So thanks again and don’t always take the first answer your given . Julie

      • Author
        Angela Sherman 7 months ago

        That’s really good news, Julie.

  21. Chris 10 months ago

    Jenny
    You are correct AA is paid if they are self funding care home fees, but my Mother was not self funding when she first entered a care home.

  22. K 10 months ago

    Totally confusing. My mother was receiving pension credit and AA. I informed the departments that she was going into care. Not CHC as it was and is still in process (despite the fact that she died August 2015). They re-addressed the amount paid. Then 2 weeks following her death & completion of Probate I (as executor)received a letter stating that the tax office had provide copies of Probate and they were legally entitled to review all payments made since 2005 made, even if I had received in writing previously that no payments were owed. Needless to say after numerous trips to the bank and loads of enquiries, 75 sheets of paper & 3 letters from me they concluded that I had to pay £6,500 as they had made mistakes. Being totally confused by their brief explanation and stressed by the whole situation I paid up. It so galls me as I have always informed the benefits team(s) what was happening during my mothers sickness.

  23. Fiona 10 months ago

    The whole thing has been a nightmare from start to finish. A real battle to get Continuing Health Care funding with every effort made to exclude and changes made to agreed scoring after various meetings. We had to appeal the decision and it went straight through when we got an independent assessment undertaken. Now we have just been re assessed and are awaiting for the results. It is clear every effort is being made to exclude my parent from qualifying – the reality being that he is significantly deteriorated since first qualifying. We fully expect to have to get another independent report by the same specialist which will show he is worse ( by what miracle would a 94 year old who suffered a catastrophic stroke improve?). No other funding is received apart from Pension. I’m not aware of being able to qualify for anything else, we have had no meaningful support from any advisory service, the social worker we first had was beyond useless and seemed to know less than we did.

  24. Jenny 10 months ago

    Chris, I was specifically told that if relative was self funding in a care home AA could continue. They wanted repayment of AA for time in hospital and rehabilitation as that was NHS funded. On that logic, I can see why they want AA to stop when CHC is paid, but not when self funding – but I may well be wrong!

    • Chris 10 months ago

      Jenny
      You are correct. AA is only payable for self funders, otherwise it stops after being in a care home after 28 days.

      • Judy Price 10 months ago

        I applied for Continuing Healthcare (CHC) for my dad on 23rd December 2015, I was told there was a 6 month waiting list before they would assess but here we are, 1st November tomorrow, and despite chasing them up i’ve heard nothing. Are there any maximum timescales? I’m also interested in Fiona’s comment that she got CHC on appeal after commissioning an independent assessment. How do I go about that? I’m concerned because i’ve heard virtually no one succeeds in getting CHC in our area. Also does it mean the care home gets paid less or more? I moved my dad to his home 3 years ago. They only had a shared room at £550 per month but told me he could have his own room when one was free at £750. However once he was in the home they then said the fees were going up and the single room was £1000 per week, which I have paid as dad is settled there, but there appears to be no way to check whether they are charging everyone fairly or not. They seem able to charge what they want. Final thought – dad was refused CHC when in hospital 3 years ago just before going to the nursing home. But the hospital has lost all the records, and I was never given anything. Any implications regarding CHC. I’m also concerned that as far as the home’s records are concerned they really downplay behaviour etc., as they have residents worse than my dad, but a lot of info is just not getting written up. Is the answer an independent assessment, what are the costs and are they recoverable? Dad was a teacher, a single parent and not wealthy. All of his avings and two thirds of his house sale money has now gone. Judy

        • Author
          Angela Sherman 10 months ago

          Judy – that delay sounds whole unacceptable. The whole point of a CHC assessment is to determine who is legally responsible for paying for care. At this moment that decision hasn’t been made, and so you could try sending all care invoices to the NHS for payment. (Be mindful of what impact that may have on quality of care though.) Some families do forward invoices to the NHS in that way. Also, you may want to write to the Head of Adult Care at the local authority (LA). If your dad is not receiving CHC at the moment then he is, by default, a local authority responsibility . However, if his care needs are actually beyond the LA’s legal remit, the local authority is currently in an illegal position. You may find they can put pressure on the NHS from their side. Care homes generally get paid less via CHC than they do from self-funders. It’s a clear conflict of interests and, as a result, not all care homes seem willing to help families secure CHC. If you’re concerned about the quality of the care notes at the care home, be sure to kick up a fuss – as these notes are as much about a person’s safety and the ability of staff to deliver the correct care as they are about CHC. Be sure to let the CHC assessors know that the care notes are inadequate. CHC aside, make sure your dad’s money does not go below £23,250: http://caretobedifferent.co.uk/paying-care-home-fees/savings-thresholds/

  25. Chris 10 months ago

    My Mother’s Attendance Allowance was stopped 28 days after going into a Care Home and that was before she received CHC. State Pension and Pension Credit are still being paid, i.e. before and after CHC was awarded. I don’t ever recall the Dept of Health asking the question “who is paying the care home fees?” I don’think it is relevant whether they receive CHC or not. Pension Credit is calculated on the savings amount at that particular time. If your relative’s savings are reducing on a constant monthly basis the Dept of Health should recalculate the amount paid as pension credit regularly. If the savings are increasing then I would only notify them each April.

  26. Jenny 10 months ago

    My relative was awarded Continuing Healthcare (CHC), but it wasn’t actually paid to the Care home for many months after award. I didn’t stop the AA (at higher rate) the relative received until I was certain the money was being paid and payments were up to date. I’m wondering whether AA should be repaid if we are successful in any retrospective award?

    • Author
      Angela Sherman 10 months ago

      Jenny – quite possibly, yes. You may find that AA is deducted from any retrospective refund (or needs to be repaid).

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