What should Continuing Healthcare funding cover?

What should Continuing Healthcare funding cover?

What should Continuing Healthcare funding cover?If you qualify for NHS Continuing Healthcare, watch out for these 3 myths:

…You’ve been through the NHS Continuing Healthcare assessment process.

…You’ve battled every step of the way.

…And now you’ve finally succeeded in securing the funding.

But what should Continuing Healthcare funding cover?

Here are 3 things you may be wrongly told at this point:

1. The local authority will still have to means test you for your social care needs.

2. Continuing Healthcare will only pay up to a certain amount for your healthcare needs.

3. Your family will have to pay the difference fees between what the NHS will pay and what the care provider charges.

If you’ve been told any of these things, challenge them right away. Here’s why…

Let’s look at the NHS Continuing Healthcare guidelines – the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care:

Page 14, paragraph 33:

“Where a person has been assessed to have a ‘primary health need’, they are eligible for NHS continuing healthcare. Deciding whether this is the case involves looking at the totality of the relevant needs. Where an individual has a primary health need and is therefore eligible for NHS continuing healthcare, the NHS is responsible for providing ALL of that individual’s assessed health AND social care needs – including accommodation, if that is part of the overall need.”

So, if you qualify for NHS Continuing Healthcare, the NHS must cover ALL your needs, whether they are social care needs or healthcare needs. It’s the whole package.

Let’s look further at the National Framework:

Page 46, paragraph 167:

“Where a person qualifies for NHS continuing healthcare, the package to be provided is that which the CCG assesses is appropriate to meet ALL of the individual’s assessed health AND associated social care needs.”

In other words, ALL the needs that have been discussed and assessed to get you to the point of qualifying for NHS Continuing Healthcare should be covered by the funding.

So be alert for anyone trying to tell you that Continuing Healthcare is capped, or that you still have to pay some of the fees. Indeed, if you qualify for NHS Continuing Healthcare funding, the responsibility for your care is squarely on the shoulders of the NHS.

What’s more, the local authority will be in an illegal position if it then tries to means test you. This is also reinforced in the new Care Act and in case law, for example the well known Coughlan case.

Remember also that ‘top up’ fees apply to local authority care ONLY, not NHS Continuing Healthcare.

How the Care Act helps you with NHS Continuing Healthcare

The vital question to ask the social worker

What’s your experience?


  1. Sarah Rathford 6 days ago

    My brother is fully funded by the continued health care through PHB. I’ve just requested for him to be on direct payments so that he can have more say in his own care. They have set a meeting and said to us they want to be sure this is what we want! Also he lives in a property he can not afford, I have to pay for it. Housing benefits isn’t enough to cover it and he has many needs so finds it difficult to live just anywhere. I had to move him from his previous home which was supported living provided by a care provider where he had a house and care combined but the care they were providing was neglectful. Securing a new home for him was horrific and I got no support from no professionals and keeping it now I feel still unsupported. Can anyone advice?


  2. Grace 12 months ago

    Question from Grace: Hi my father 12 weeks ago had pneumonia got sent home from hospital after 3days very unsteady and fell and broke his hip, he had a half hip replacement and has gone drastically down hill since he has Lewy Body Dementia has becom extremely aggressive was in rehab care home fell 4 times in 3 weeks and had a bleed to the brain . He has been back in hospital for 4 weeks now has slurred speech, hallucinations all day long become very violent towards staff, refusing food has lost a lot of weight and the little he does have he has trouble swallowing so food and drinks have to be thickened and purred, incontant, sleeps most of the day and reoccurring pneumonia. Consultant wants to put him in an EMI nursing home and stop giving antibiotics and let nature take it cause as he just keeps deteriating. The consultant says dad will most probably qualify for nhs continuing health care but the hospital social worker says it will be very hard and doesn’t seem keen and keeps saying “ don’t worry about that now” but doesn’t want to do the checklist before his discharge she says we will do it when he is in the home ? Any advice greatly appreciated.

    • Care to be Different 12 months ago

      Hi Grace – yes it is more common today for CHC assessments to be carried out outside of the hospital environment and this is covered by the new National Framework which will be in force from October.Some CCGs are adopting this policy already. If you would like to speak to us about assisting you through the process do not hesitate to get in touch with us or with Farley Dwek. Kind regards

  3. Denise Podlewska 12 months ago

    My 96 year old mum is in a similar position. She has had NHS CHC for three years and this year I was asked for nearly £900 a month for “Lifestyle Choices” The biggest being a chunk of over £100 per week for ” choosing to live in XXXXX Home in the market town of XXX” , along with other hoteltype charges. I queried these and was told by the NHS that I must pay them as they are not “care”,. Social care is only washing,dressing,toileting – they pay for nothing else. The nursing home manager told me that the NHS are fully aware and support these Lifestyle choice charges and the wording was agreed with the LA for the hotel-style services.

    From the comment above:

    if you qualify for NHS Continuing Healthcare, the NHS must cover ALL your needs, whether they are social care needs or healthcare needs. It’s the whole package.”

    The NHS have told me in writing that they have a CAP on what they will pay for care and they will not go above it. If I have to move mum, the home will probably cost more and they won’t pay the difference . They have said that if I can’t get another home nearby for the money, they would have to move her back to their locality.which is an hours drive away!

    I called a nursing home in a different CCG area, still within 15 minutes from me and they charge £300 more. I told them it would be too much and the manager was stunned a there had never been any problem win the NHS accepting the charges. I am talking with the nursing home at the moment to reduce these fees and will probably have to pay something to keep mum there rather than moving her 1 hour away.

  4. Roo 1 year ago

    We moved my Mum into a care home nearly 3 years ago – she has Parkinson’s with dementia – because the set up with carers in local sheltered housing wasn’t enough for her complex needs and she was having lots of falls etc. We were on a waiting list for a local authority care home, but it had no spaces and we were very concerned about Mum. We found a local care home, which was expensive but very close so we could visit and had a verbal, and then written, reassurance that when her funds ran out they wouldn’t expect her to leave. At no time did her social worker or the new home recommend or put in place an application for CHC funding which I believe they should have.
    Mum had many falls in the home and they were the first to bring to my attention CHC funding – had only ever heard about it once from an elderly community nurse who said Mum wouldn’t be eligible for it. After a ‘around and around in circles’ experience which involved me ringing social service, NHS, GP – all pointing me to someone else to start the process, 6 months later the process started. Mum was found to be eligible and awarded NHS funding. However, we were told we had to pay ‘lifestyle choices’ which I didn’t question. Mum also has NHS funding for 1 to 1 carer for 10 hours a day because of her high risk for falls. At present, she is paying over £2,000 a month in these ‘lifestyle choice’ fees. Can these be asked for? I have recently written to ask for a breakdown of the monies to see what she is paying for, but it does seem a lot of money. At the same time, I know she is so fortunate to get funding and 1 to 1 and don’t want to seem ungrateful! People’s thoughts appreciated.

    • Care To Be Different 1 year ago

      Hi Roo – top-up fees for a CHC funded individual are illegal. There are certain circumstances where they can be requested but you really need to see what the contract says about what is included. They sometimes refer to ‘Hotel services’ being additional such as a room with a view or ensuite etc. I would definitely question this. Regards

  5. Stephen 1 year ago

    Can you help me please, I get full Continuing Healthcare (CHC) funding, am I allowed to go on holiday? I will pay for my holiday and also my carer’s, would she be entitled to her wages for caring for me while away?

  6. Mark Lewis 1 year ago

    My partner aged 51 had a stroke a year ago (May 2017), followed by UTI sepsis, and then another stroke in November 2017. He has been assessed as having a Continuing Healthcare (CHC) need, and is now in a nursing home rather than a rehab facility, although he receives some physio etc. One issue I have with the nursing home is that, unlike the rehab facilities my partner resided in, the nursing home will not supply a carer to go with him to hospital and other external appointments, eg opticians etc unless I pay an extra charge (£30 etc) to cover the loss of staff from the floor. My partner has quite poor cognition, memory and speech problems and would always need someone with him who can explain and answer questions (on his behalf) at any such appointment. He often won’t understand why he is at an appointment etc.I cannot always be available for such appointments and I have posed the question what would be done if i was not around to assist? There is no-one else. My question is, should the CHC funding cover such extra costs, eg of carers going with my partner to external appointments? It is surely a need that he has and should be in his care package? The CCG have not answered by enquiry on this and I am curious as to why the rehab centres allowed carers to go with my partner, in their own transport admittedly, but the current nursing home is demanding I pay this extra cost. It didn’t help that the nursing home accepted my partner without completing the assessment of his needs as the transfer process was rushed, and then they realised they had issues about meeting his needs! Thanks

  7. Chris Cox 2 years ago

    Has anyone been successful in gaining NHS Continuing Healthcare funds for physical health. I could do with some tips please as I am at the Independent Review stage.

  8. Connie Williams 2 years ago

    I have already posted here several times. I care full time at home for my adopted daughter who was born with profound, multiple and complex disabilities and is now under palliative care. I have received a Personal Health Budget since February 2015 but The CCG refuse to consider exactly what I am allowed to use the money for. Prior to 2015 I received an Independent Living Fund budget for about 15 years, readily meeting all of the required disciplines with none of this trauma. I have now written to well over 100 organisations, charities and campaigns seeking help with challenging the way I have been handled to no avail. Many months on the unpleasantness continues and has taken over my life. Currently I have been told that in September the CCG is planning to cease my funding and to hand it over to a ‘broker(?)’ even though I have actually done nothing wrong at all beyond disputing their attitudes. I now consider that their treatment of me is intentionally malicious and intimidating because I have been seeking advocacy.

    • Andrew Bundy 2 years ago

      Reading through your post, a few things spring to mind, though I’ll confess I’m quite new to all of this. Firstly, they cannot legally simply cease your funding without proving your daughter is no longer eligible, and as I sadly not your use of the word palliative, this alone would have frequently granted eligibility in its own right.
      A broker or the practice of ‘brokerage’ is where an independent third party, funded wholly by the CCG, but not influenced by them except in following ‘the rules’ and working within existing funding limits (to some degree). They are either employees or self-employeed, of a commercial company or charity. Their role generally is to work with you to identify your needs in line with the rules set down by the Practice Guide and the Care Act, to create a care plan and then work with the primary healthcare provider to get the funding approved by the CCG. After this comes the task of turning the care plan into a care package.

      If you don’t currently have a care plan or care package this would explain why you are having the problems getting answers as to how you can spend the money – because you are asking questions which are never asked.

      I suspect that you transitioned, in some unworldly way straight from ILF to CHC and received an equivalent budget. Quite how you achieved this without going through a version of the process I described above is a mystery to me, as somebody should have been responsible for your transition from ILF to CHC, or maybe ILF to Adult Services to CHC – in which case your Social Worker fouled up royally.

      Where you need to get, I suspect, with the aid of the broker, is the point where you have a care plan, even if you, yourself, are the ‘care package’ which defines in no uncertain terms how, within the rules, you will spend the money. In other words, the Plan (built within the guidelines) is your guide to spending the funding, or for most people the plan leads to a package which soaks up all the money. While people have Personal Health Budgets, and can build a reserve, said money in the bank is virtual, and is generally measured in ‘care hours’ or ‘respite nights’ or by some other pre-agreed measure.

      The care plan and package can be very broad however, and include everything from bespoke equipment not available from your local joint equipment store, to housing adaptations under very specific circumstances. As you can only ‘spend’ the money in the manner agreed to in your plan, you would never have obtained an answer to your question from the CCG, as such an answer would not exist.

      I hope this makes sense. As I often say, Google is your friend, and now, so is your broker.

    • C onnie Williams 2 years ago

      Thank you for your interest; something I have found to be completely lacking despite widespread appeals. I feel I should clarify a few matters so that this history can stay in print and online with honesty whatever is our personal outcome and for the sake of any families following in our footsteps. If the threat to ‘cease’ our funding is carried out I believe it will mean in effect that I will not be allowed to administer it – not that they will attempt to overturn the actual assessment of needs. I suppose that it would actually mean some kind of agency type provision for sending care assistants to us. We do have a care package and a plan of hours of care which is in fact more generous than the original ILF one was; there is no contesting that aspect at all, and there never has been. Indeed we did transition from the ILF in a VERY unworldly way; this was undertaken by a single nurse who visited our home several times. However she has absolutely no knowledge at all of Personal Health Budgets (PHB), quite what may be involved in managing one and much of what she told me at the time has since been dismissed by others at the CCG. I even had to correct her arithmetic at the outset as her own explanation did not make sense. During those visiting months she did also complete a full assessment of needs in which I had a good deal of input as she has no understanding of someone like my daughter. I therefore have no argument about the basic care plan / care package at all. The issues seem to be that the CCG just are unable to accept that an individual like me should be allowed to manage their own PHB, (especially if that individual should be me) and in particular if such an individual should question the actions of the CCG. There is more to it as well but I hope this response will be of value in reply to your own thoughts.

  9. JJ 2 years ago

    My aunt has been financially assessed. No mention of a healthcare assessment although reading up on it her needs seem to be more health based than social based. However, she has been assessed as not having to pay anything so I wonder if it is best to let things lie- after all it is not up to me that the Local Authority may have got it wrong and not deemed her to be in need of a healthcare assessment

  10. Sandra Harvey 2 years ago

    Please help. My mum has been in her lovely home for 4 years. She has Continuing Healthcare (CHC) funding. She also has a 1:1 . 12 hours a day as high risk. We have just found out that CHC has not been meeting all the cost of the 1:1 and owe fees to the home. Mum had her 1:1 review – its still needed but they are fighting over the cost. The home says if 1:1 is awarded they won’t do it as not being paid enough by CHC to meet the cost. I belive the bands have changed on how much the CHC will pay. We are worried we will be forced to move mum to a cheaper option. Believe it’s not fair. But the home says they are losing money as the payment dosent cover it. What can we do??

    • Andrew Bundy 2 years ago

      I don’t understand 1:1 as a regulatory process, through obviously do in terms of a care practice. It sounds as if there is a disconnect, and the need for the 1:1 support has not been properly considered within the scope of her annual Continuing Healthcare (CHC) reviews, or indeed whether she’s been having said reviews. Has there been any word on this from the CHC? Did they ever agree to fund the 1:1 as part of her care plan at the outset?
      The problem is that unless care plans are updated as needs change, the CCG will continue to provide the same level of funding, allowing for price rises on the accommodation part, until at some point the amount they are paying fails to meet what the home is charging.
      As I understand it, and remembering that the CCG has to be fiscally responsible to meet the needs of all patients on CHC, the CCG is allowed to propose a move to a (less expensive) establishment or maybe a smaller room, especially if this means the 1:1 support can be continued.
      However you need to speak with your primary provider (I guess the community nursing matron or equivalent) to bring up the matter with the CCG to make sure that all of you are ‘on the same page’. The difficulty with CHC is that as a family you are NOT permitted to pay the difference yourself, but then, as I understand it, neither is anybody being forced to divest themselves of capital or the family home either. A case of catch 22 – but one that you need to start asking more probing questions about.
      BTW – I am not an apologist for the NHS as my last couple of posts might suggest – I too want more from my package. However I am also a realist, and a firm believer that that the Government, and its executive agencies in the form of CCG’s, Hospitals and Community Health Trusts should operate fairly and balance their cheque book annually, just as we all have to. That being said, my preferred way of dealing with overspends is to [get rid of] middle and senior management. After all, it is the minions and worker-bees that get all the work done!

  11. VI 3 years ago

    I need some help about something. My mum has an incurable long-term health condition. She gets 75% nhs funding and 25% social care funding so has to pay some contribution herself. She needs a specialist chair, she has been assessed for it, measured up and she needs it to sit in and support her posture and prevent pressure sores. Now the care unit she was at wrote to the NHS asking if they’d help fund it, they replied in 6 months but my mum needs it asap. Does NHS continuing healthcare funding cover or help cover some cost towards a piece of essential care need equipment? They seem to be saying yes in the letter, but fund it in a few months time. I’m so confused. Any help clarifying this would be helpful. Thank you.

    • Angela Sherman 3 years ago

      VI – if your mum needs the chair as part of her assessed health needs – and it sounds as though that’s the case – this should be covered under her NHS Continuing Healthcare funding. If they don’t provide the chair when it’s needed (i.e. now) this could be seen as negligence or neglect, as the implications for your mum’s skin integrity are potentially serious.

      • Andrew Bundy 2 years ago

        Angela is quite right with her statement above, although the situation is very slightly complicated by the mixed package she has been saddled with. There is also the question of precisely who has made the determination that she has an absolute need for it, because if the recommendation has, say, come from a visiting sales rep (not uncommon) via the centre’s manager, the CCG may question the medical need.

        On the other hand, the situation may be similar to one which I experienced in that having gone through the assessment, the chair is a totally bespoke piece of equipment and unique to your mother, may simply take some time to make (often by hand) and there may well be a waiting list. I had to wait three months for my chair, the only differences to ‘standard’ being slightly higher arm-rests, and standard models were ‘off the shelf’ which should give you some idea.

        The last point, and one which is sometimes forgotten as we are all so caught up in ‘Continuing Healthcare (CHC) has to fund everything’ is that the NHS also has a legal responsibility to be equitable among every patient receiving CHC funding. It is possible, especially if this is an expensive item, that there is simply insufficient money remaining in the ‘one off unplanned bespoke equipment pot’ resulting in a need to wait for the next financial year. Gone are the days when the NHS was allowed to simply go ‘over budget’ and forget about it come the end of March – going over budget means less money the following year, and they are legally obliged to do their utmost to meet all the critical needs of ALL patients but not at the cost of the next patient getting nothing. Not something we like to hear, but equally some CCGs are actually quite small, thus don’t have huge budgets.
        While not giving anything personal away, I am funded by a certain island city even though I live outside their area (should have picked a different GP). Geographically they cover a small area, though have a dense population – but are afflicted with the area’s ‘super hospital’ on their patch. On top of CHC and everything else, this puts a massive cost demand for local patients who want to be scanned on all those lovely expensive MRI machines or have the temerity to become ill. In other words, you cannot fill a quart from a single pint pot.

  12. duckface 3 years ago

    Hi Paul
    my understanding may be wrong, but:
    1) Does the NHS cap CHC funding… no, it is to meet all her health needs, but you may be erroneously told otherwise
    2) Who determines mums maximum care dependency ( she cannot feed drink, wash toilet etc herself due to her condition which is spinal compression at the the base of her brain stem.)… there is no maximum. all her health needs must be covered. these will change over time. the family will know best what is needed. the family is likely to need to inform and co-ordinate others in what is needed.
    3) Can the family have any influence on increasing her level of care… see (2) above. She is happy to keep her currant carers who can provide a higher level of care… good. A change in immediate family circumstance means a reduction in the care that they are able to do in between the carer visits… again, all her care needs must be met – therefore more care needs to be provided by CHC funding
    4) Could she be forced into a care home/ nursing home if it is deemed more cost effective… ‘costing less’ is not the same as ‘cost effective’. again, it depends on what her care needs are, what the goals of her care are, etc. ‘efficacy’ and ‘psychological well being’ etc matter.
    5) Will the family be expected to run her care fund. A family member runs her direct payment plan at the moment with the local authority… the CHC people for my relative insisted on a PHB (Personal Health Budget), with a ‘care broker agency’ managing the funds, ie paying carers’ invoices etc, this ‘service’ is paid for from the PHB budget. the PHB budget needs to be negotiated firmly – again, it must meet all her care needs
    6) Mum has paid out for some expensive equipment to help her in the home. Can this be claimed back against her CHC funding… it depends on when the CHC funding is deemed to be starting from
    7) Mums condition will never improve. It will deteriorate over time. With this in mind will she now receive CHC for life or is it regularly reviewed… it gets reviewed in about 3 or 6 months time (?) and thereafter annually
    Good luck!

    • Angela Sherman 3 years ago

      Good advice there from duckface. Paul – This may also help regarding CHC and choice of care homes: http://caretobedifferent.co.uk/continuing-healthcare-funding-and-choice-of-care-home/ CHC is reviewed initially after three months and then annually. It should remain in place for as long as your mum’s care needs meet the funding criteria. Be vigilant – many families report that CCGs try to remove funding at the three month review. There is no basis for this however, unless care needs have fallen below the eligibility criteria. You should be involved in the three-month review and invited to input.

    • Andy Bundy 3 days ago

      Just wanted to clarify a comment from distance earlier. He is correct with respect to the CCG being unable to cap payments but for two points:
      1. The care plan agreed has to meet all reasonable needs within the now updated rules and regulations. If some element is not being covered get your broker in and discuss the matter. Remember the funding is not infinite as it has to cover all eligible service users.

      2. This leads me to a second duty imposed on the CCG which is that as I hinted above, they have to ensure that all packages are equitable across the service user group. In other words, everyone is entitled to their fair share which can force a.smaller CCG to seem to be unfair and mean.

      Hope this gives pwrspective.

  13. Hazle 3 years ago

    This is all such a minefield. Why are politicians not taking up the challenge on our behalf. I spoke to my mp ten weeks ago and am still waiting on an answer. The forgotten society. No one carers only the carers.

  14. Paul 3 years ago

    Hi All
    My mum has just been granted CHC. We have had a verbal confirmation and have arranged to meet with the nurse to establish mums care needs. She is disabled and bed or chair ridden. Living in her own bungalow which is currently being converted with a grant to assist her disability. She has 4 double handed carer visits a day of an hour. There is a 6 hr gap between her last two visits which is now impacting on her health. Whilst she is not incontinent she is reliant on pads as she cannot use the toilet without assistance. She has sores and they are at risk of infection due to their location. As she has to pay a contribution due to social service means test she is reluctant to increase her carer visits due to costs.
    I am of the opinion that mum needs either an increase in visits or a carer with her throughout the day.
    My questions are ….
    Does the NHS cap CHC funding…
    Who determines mums maximum care dependency ( she cannot feed drink, wash toilet etc herself due to her condition which is spinal compression at the the base of her brain stem.)
    Can the family have any influence on increasing her level of care. She is happy to keep her currant carers who can provide a higher level of care. A change in immediate family circumstance means a reduction in the care that they are able to do in between the carer visits….
    Could she be forced into a care home/ nursing home if it is deemed more cost effective.
    Will the family be expected to run her care fund. A family member runs her direct payment plan at the moment with the local authority.
    Mum has paid out for some expensive equipment to help her in the home. Can this be claimed back against her CHC funding.
    Mums condition will never improve. It will deteriorate over time. With this in mind will she now receive CHC for life or is it regularly reviewed.
    Kind Regards

    • Connie Williams 3 years ago

      Paul, look back through this list for my two entries in my name Connie Williams. You and I appear to be the only ones in this situation of choosing to give care at home and using Direct Payments. In six months I have got nowhere to date and receive no interest or help.. I am barred from advertising for care workers as the CCG say I must not use the funding for that. I am advised elsewhere that this is not the case. But I have now written to over 60 legal practices and similar across the UK. Not one will help. The main interest with this issue currently is only about Care Home fees. You could also have a look at the Community Healthcare Alliance under the Umbrella of the Parkinsons Society for some more information. Sorry I cannot offer any more positive comment.

  15. Jenny Garber 3 years ago

    Wonder if anyone else has had experience of asking for specialist therapy costs in a Continuing Healthcare (CHC) package. We would be grateful for any advice. My sister in law, aged 70, has suffered multiple strokes and is in hospital. We have got CHC for her and the Brokerage team are looking for a nursing home and going to pay full costs. Although she is severely disabled she is receiving stroke specialist physiotherapy and speech and language therapy at the hospital, and making small improvements. She is not strong enough for the intensive stroke pathway rehabilitation at the step down hospital facility or from the local Early Supported Discharge Team. We are concerned that there is no community facility for slow stream specialist stroke rehabilitation in her area, and that the CCG want her to go into the generic Community Therapy programme when she is in a nursing home. We feel that specialised therapy is necessary for her to maximise her potential. How do we ask for the CCG to include the cost of slow stream specialist rehabilitation in the package? Are we likely to get this? What sort of evidence will we have to get to prove the case? Thanks

    • Angela Sherman 3 years ago

      Jenny – it may be worth getting a letter from the specialist therapists at the hospital that stresses how important the ongoing therapy is and why. If your sister in law needs that therapy as part of her assessed care needs, then CHC should cover it.

  16. Helen 3 years ago

    Hi there, how would I go about making an application for Continuing Healthcare (CHC) funding for my elderly disabled 77 year old Mum? She has just recently come out of hospital following a 6 week emergency admission for a severe UTI, Sepsis, a severe bowel obstruction requiring emergency surgery & a 7 night stay in ICU. Whilst on the surgical ward recovering she was diagnosed as now being in congestive heart failure. She has been discharged home to her sheltered housing with a care package in place of 30 mins am, 20 mins pm, 20 mins eve – funded by the Adult Social Care team following an Adult Social Care Assessment & Personal Care Plan. She has not recovered her previous level of cognitive functioning and is muddled at times (there is a body of research around continuing ICU delerium / psychosis in the elderly) and she has become much more frail and unsteady on her feet. She is experiencing shortness of breath and has just had her second episode of oedema/pooling/open wounds on her legs, which have now healed with district nurse visiting twice a week to apply sepcial dressings. She isn’t able to get out, is mobilising a little in her bungalow with a walking frame, is too unsteady to use a wheeler-walker. Is unable to do her own laundry or cook meals or manage personal care. I am ordering in food in for her for the freezer which she is able to manage with the microwave. I have just completed an application for Extra Care / Assisted Living for a lovely place just 10 minutes drive from me (but Mum is in a completely different area) as I need her close to me now. She too wants to be close to me. It has been indicated that Mum has 1-2years life expectancy because of the severity of her heart condition. I think she now meets the criteria for CHC as opposed to Adult Social Care and I am wondering how to go about applying for this. Her GP has suggested that we go with the Care Act’s ‘Continuity of Care when moving between local authority (LA) areas’ so that we can get Mum near me asap & then look at CHC funding once she is here, because if we apply for CHC funding now this will slow everything up as it could take months… & we honestly donlt know how long she has got. I personally think this is going to be her last Christmas and I am desperate to get here before Christmas. But, for the future, perhaps January time, how would I go about making an application for CHC funding for Mum? Thanks ever so much. Helen

  17. duckface 3 years ago

    I don’t know… but it would seem that your husband is very unwell, indicating a ‘health’ rather than a ‘social’ need. I suspect the social worker is ill-informed. I suspect the ‘temporary’ nature of the move is irrelevant. I think a CHC funding application needs to be the first step, before the hospital discharges him. I would put that request in writing to all concerned. I am so sorry you are having to go through this at such a difficult time. Good luck.

  18. Hazle officer 3 years ago

    Can anyone help. I am from Northern Ireland and my husband is currently sectioned in an elderly dementia unit in hospital. I have been told that he is moving to a trust bed in a private nursing home. This home deals with “challenging” behaviour and according to the manager my husband will be there for between 4 weeks and 4 months. Because this is a temporary move should I pay? The social worker involved says I must pay the amount other nursing homes charge, but, because they are instigating this move that they i.e. the trust will pay and additional costs. My understanding is that if the move is temporary the trust should pay.

    • Angela Sherman 3 years ago

      Hi Hazle – thanks for your question. All the information we publish here at Care To Be Different relates to the care and care funding system in England, and the system in Northern Ireland is different, so we can’t comment on your own situation. I don’t know if this link will help, but it might be worth a look: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2292

  19. Mel 3 years ago

    If I find a care home that can meet my Mum’s assessed needs can CHC state they will only pay a set amount towards the weekly costs e.g. I have been quoted £570.00 is the maximum the NHS will pay. If the costs of the care home are not agreeable to the NHS can they ask me to find a home within the maximum amount they will pay?


  20. Mary 3 years ago

    Can you tell me what ‘Continuing Care Funding Category 2 (shared care) means?

    • Angela Sherman 3 years ago

      Mary – are you in England or Wales?

      • Mary 3 years ago

        England – we have a 50% agreement with CHC, My mum also has 1-1 for 9 hours because of her behaviour. We have had this for 4 years – the nursing home now want to considerably put up mums room fees (we have just sold her flat) when I said CHC were paying half they have said they are only paying 50% of the 1-1 – it’s a right mess! Can you please help or advise in any way, I would be very grateful .

        • Angela Sherman 3 years ago

          Mary – we’ve just had a similar question on our Facebook page: https://www.facebook.com/CareToBeDifferent/ See the question from Josh. The National Framework on pages 35 and 89 makes reference to joint packages of care – split between the NHS (free) and the local authority (means tested). However, in these situations if a person qualifies for this level of NHS funding – as as such they clearly have care needs that are beyond the local authority’s legal remit to provide – then the question to ask is why are they not receiving 100% NHS funding. Some families report that a suggestion of ‘joint funding’ can seem to be a way of reducing the amount the NHS has to pay. Every case is different, of course, but be sure to challenge anything and everything you disagree with in the assessment process.

  21. Janet Benton 3 years ago

    My Dad, who has got vascular dementia, has had Continuing Healthcare funding since December 2015 and has one to one 24 hour care in a challenging behaviour unit. Over the last couple of days he has been admitted to hospital with pneumonia and although he is getting better he is trying to climb out of bed, striking and hitting out at staff and walking unaided at times. His mobility is poor and in the home he walks around for a large part of the day supported by a one to one carer. His co-ordination will not allow him to use a walking aid of any kind. I’m worried he will fall and suffer a break or skin tear as his skin is tissue paper thin. If he has the funding in place and has been assessed at needing one to one 24 hour care, shouldn’t he be able to get the same level of care while he is in a NHS hospital? Your online book and website, by the way, is an amazing resource and helped me securing the funding. Couldn’t have done it without that help, thank you.

    • Angela Sherman 3 years ago

      Thank you for your very kind words, Janet – and, yes, the hospital has a duty to make sure your dad’s needs are covered and that he is safe, whatever that involved. Sadly it’s not unusual for people to experience very poor care in this respect, when it comes to elderly people with dementia.

  22. Connie Williams 3 years ago

    Could I please ask the following?

    I am in receipt of generous Continuing Healthcare (CHC) funding (a rarity, I understand!), paid by Direct Payments, with which I employ nursing/care assistants to help me care for my profoundly and multiply handicapped daughter in the family home on a 24x7x52 basis. Prior to that we had Direct Payments from the Independent Living Fund which meant that I was accustomed to their strict rules about the use of the payments. We have not been visited since December 2014 when the award commenced and have no real point of contact with the CCG, although that suits me very well! However, I would like to use some of the funding to purchase a few items for my daughter’s benefit e.g. a mattress of better pressure relieving properties, incontinence sheets that are not provided, some physio cushions for supportive positioning and better seating etc. All items solely for my daughter’s well-being, of course.

    Can you point me to any literature that might define exactly what this funding may be used for?

    Thank you,

    • Angela Sherman 3 years ago

      Connie – as those requirements are directly related to your daughter’s care needs and are vital for her health, wellbeing and safety, you could write to the CHC team and simply tell them that this is what you are going to do. (Send it recorded delivery.) That way, it is up to them to object if they want to. I realise this may trigger a visit or review, though. The CHC team should also have information about what the payments can be used for.

      • Connie Williams 3 years ago

        Thank you. I was planning to write in that manner anyway but had hoped to be armed with some definitive information before doing so. I did write, it went by recorded delivery mail. I received a reply sent by encrypted E-mail that would not accept my access to it. I returned it stating that and it was sent again in the same way. I returned that and repeated that I could not access it. Then it came by mail and in an envelope! The letter was arranging a visit in two days’ time but we already had two appointments that day (we have a very packed diary having a long list of professionals involved) so I left an answerphone message. Today a person phoned back and of course wants to review but in the meantime tells me that I am absolutely not allowed to use any of the money for such purposes as I suggest; it can only be used for hands on care. She also went on to say that she has seen documents that I sent to the CCG in October 2015 in response to a letter requesting that I mail my care assistants’ pay slips to them. At that time I both telephoned and wrote to say that payslips belong to the people who are employed and cannot be given elsewhere by an employer (me) even if I were to ask for them back again! Instead I sent summaries from the payroll company that I use and bank statement copies to show what the funds had been used for. Today she said they are concerned that I have paid for advertising for care workers out of the funds and I must not do this and must cease immediately. A review will be taking place as soon as diaries can be coordinated.

        • Connie Williams 3 years ago

          5 months on I would like to add to my earlier posting here because I want to highlight this rather different aspect to the CHC difficulties alongside the more commonly known care home issues. During the last 5 months I first wrote a formal letter of complaint which was ignored. With some support and advice from another service I wrote again and that was ignored for a lengthy time. Eventually I received a letter containing an apology for the delay but ignoring the actual issues. For 5 months now I have been unable to advertise for Care Assistants ; in that time one has gone off to college and another given birth. I cannot replace them. Since September I have been seeking a solicitor to give us legal support. To date I have written to more than 60 with no success at all. My daughter’s well being is compromised and I am exhausted.

  23. Laurence Sutton 3 years ago

    Interesting experience for me this a.m. I went to look at a care home perhaps more appropriate to my wife’s increasing needs. I was asked about funding and I informed them that she was currently self funding but likely to be awarded NHS funding after an assessment in May. I was told that as this was not a nursing home (but a dementia unit) the NHS would not pay the full amount as they did not employ nurses, i.e. the CCG caps the funding even though folk have been awarded CHC funding. I said that I did not believe this to be the case and they said, ‘That’s how it works.’ Its never ending!!!

  24. sd 3 years ago

    Advice please…
    My mother with dementia and other illnesses has been awarded Continuing Healthcare (CHC) funding for care at home. Her needs are increasing and it has been decided she should be moved to a nursing home. So much misinformation on so many fronts…
    Current confusion:
    (1) one home tells Community Psychiatric Nurse (CPN) (who does not know about CHC funding) that they only take up to a certain number of CHC funded residents, because their fees are £1250 and CHC only funds to £850 so there would be shortfall of £400 pw but they could do a deal with topping up of £330 pw…
    [as an aside – curious as to where these capped numbers come from given the wide variations in posts above]
    (2) CHC funding review meeting coincidentally due…
    (3) it’s the CPN who’s met Mum once recently (authoritative, disinterested, ill-informed) plus the original nurse assessor from the multidisciplinary team (MDT) meeting, who met Mum once last year who will be conducting the CHC funding review.
    (a) I assume we need CHC review before she’s moved?
    (b) If there’s a choice of 2 nursing homes and one costs £1162 pw and other is £1250 pw (tho they might ‘do a deal’ of £1180), then I assume that the less expensive option is the one she has to go to??
    (c) What else do I need to consider…

    • Angela Sherman 3 years ago

      sd – your mother could be moved prior to the CHC review but you should only ever start paying care fees if a CHC review clearly shows that your mother no longer qualifies for funding. I would imagine that’s unlikely if she currently receives the funding and her needs are increasing at the same time. Be vigilant, though, It is not where she is that matters, but what her care needs are: http://caretobedifferent.co.uk/where-can-a-person-receive-nhs-continuing-healthcare-funding/ That should help answer your second question, too.

      • sd 3 years ago

        Thank you so much. As ever your advice is invaluable and the link really helped clarify the issues.

  25. Laurence 3 years ago

    Some questions:
    My wife who has advanced dementia may be awarded CHC funding in the near future. She is very well cared for in a care home.
    Can the health authority move her to another place of care as part of the agreement to fund her?
    If at some point the care home do not have the resources to look after her as her needs have further increased, but say they can provide appropriate care in a better resourced accommodation which is still part of the care organisation – which is however outside the boundary of the current Clinical Commissioning Group – can they withdraw funding? They would be paying the same health care provider however. Would she require a further Needs Assessment by another CCG? (God forbid!)


    • Angela Sherman 3 years ago

      Laurence – they may try to persuade you that she has to move. However, the first thing you can do is to ask the care home if they have – or have had – residents funded via CHC. If they have, the NHS cannot really justify saying that your wife cannot be funded there also. If your wife moves to a difference CCG, and she is receiving CHC, she should continue to receive CHC funding from the original CCG until the usual routine review, at which point funding responsibility may be transferred to the new CCG if she is still eligible.

  26. andy preston 3 years ago

    My mother-in-law has been in a care home for 2 years and is settled. The home costs are steadily rising ( even faster with the new living wage ) and we now top up £800 a month. The CHC team say they have a limit of £1000 a week above which they will not go, if we wish for full funding they will have to move her to a cheaper home. Obviously we cannot move her when she is settled and we fear ‘rocking the boat’ , in effect they impose a funding cap by placing the responsibility on the relatives.

    • Angela Sherman 3 years ago

      That sounds like a huge top up to be paying, Andy. And, of course, top ups should never be applied to Continuing Healthcare in the first place. It may be worth approaching NHS England to complain.

  27. Rosie 3 years ago

    I am awaiting an appeal meeting for a Decision Support Tool (DST) that took place last year and a new DST is being submitted this week as my mum’s health needs have increased AGAIN!
    However, the social worker did say if my mum doesn’t qualify for Continuing Healthcare this time they may negotiate a package with Health but would this be illegal as we believe my mum’s needs are beyond the remit of LA responsibilities?
    The social worker has also hinted my mum is in an expensive nursing home above their limit and so could be moved.
    She is 90 years old with late stage of Alzheimer’s and immobile, I mean really?

    • Angela Sherman 3 years ago

      One of the most important things for anyone with Alzheimer’s and/or dementia is familiarity, and to move someone is likely to be detrimental to their health and wellbeing. This is a vital point to make in any assessment or review. Also see the above response to Colin about joint funding.

  28. Lorraine Evenden 3 years ago

    I fought an eighteen month battle to get CHC for my elderly disabled father, beginning while he was still in hospital. By the time we were successful, he had been in his nursing home for a year and three months, fully self funding. The ‘award’ of CHC when we got it was backdated a year. I had assumed that all his fees would then be covered, but this was not the case. I was told that the NHS would only fund him to a maximum amount, which was considerably less than his nursing home room actually cost. So he ended up ‘topping up’ himself: paying about a third of the required amount while the NHS paid around two thirds. I did query this at the time, but decided to go along with it because (a) I definitely didn’t want him moved to somewhere cheaper, as he was nicely settled and receiving good care; (b) I felt that requiring him to pay for his board and food etc, as opposed to his nursing care, was not unfair, and (c) he was more or less able to pay his share of the bill with his income, rather than his capital – and after all, if he had still lived at home, he would still have had to pay his way. So, on balance, I think the arrangement we ended up with was quite fair and reasonable. What was awful, and still appals me to this day (three years on) is the almost unbelievable obstacle course you are subjected to in order to get CHC funding at all. My Dad passed away at Christmas. I’m extremely glad he ended his days well care for, but the overall picture for so-called ‘social care’ in this country is looking ever more grim – especially for those without means.

    • Angela Sherman 3 years ago

      I’m sad to hear your dad has passed away, Lorraine. I think many families would agree with you about the care system here.

  29. Sally 3 years ago

    Hi Mary, unfortunately the Decision Support Tool (DST) can take a long time to happen I’ve been told up to two years, although it should be done within 28 days! It’s very frustrating! You can appeal the decision following a DST. I would advise to take ‘evidence’ to the DST such as records from the care agency, letter from her GP and any other professionals involved, and make notes of anything significant to take with you. Good luck!

  30. Stephen Reeve 3 years ago

    My mother was diagnosed with Alzheimer’s Dementia in 2011. She has been in residential care since November 2013 and was awarded CHC in June 2015. She now also has 1:1 care primarily because she is likely to fall and injure herself.

    When CHC was awarded I was warned by the home that there was a CHC cap of £720 and that I would have to make up the shortfall which is I now £330/week. I queried this with the NHS who were incredibly evasive and arguably dishonest in their replies (I can prove that).

    I gave in and paid the shortfall (well mother does). Why?

    1. As an only child I have had to battle ( and I mean battle) to ensure that mum has had the best possible care (which by and large she does). I am still fighting the useless Adult Care department of the local council over an incident that occurred nearly three years ago!! I am tired and decided after seven years this was one battle too far.

    2. I questioned the morality of receiving the whole sum paid by NHS. The shortfall is just covered by mum’s pensions. If NHS paid the whole amount then mum’s pension would be going straight into my pocket. Some would say I deserve it but I’m not sure that is the point. Perhaps that emphasises my tired mind!

    • Angela Sherman 3 years ago

      Yes, sometimes you do have to choose your battles – I can certainly understand that. There is no cap on CHC, even though many CCGs talk about their supposed ‘tariffs’. As mentioned in the article, CHC must cover all assessed care needs. Another way of looking at this is to think about a person in hospital. The person requires NHS care at that point, the NHS is obliged to provide care at that point – free of charge – and the hospital must treat whatever needs arise. It would be illegal for the hospital to ask the patient to pay for that. If it were not for care homes, many care home residents would be in hospital, receiving NHS care free of charge. The fact that a person is in a care home does not affect this principle.

    • Julie Taylor 3 years ago

      Free care is not a benefit. Your mother belongs to the generation whose taxes contributed to the creation of the NHS in 1948. The government at that time entered into a contract with the country promising free care from the “cradle to the grave”, and National Insurance contributions were paid to meet that promise.
      Having worked within the legal system I’m not convinced that the Social Care Act is entirely lawful, in that it has been applied retrospectively in relation to the promise and contract that was entered into with that generation. However, given that this was never acknowledged in any way shape or form when the legislation was introduced raises a real question mark as to it’s legality when applied to anyone alive in 1948 or during the tenure of that government.
      I can find nothing to indicate that this has been challenged in a legal context and have therefore included it as yet another strand of my argument wth the NHS and CCG. As they have completely ignored this point I can only conclude that there is some mileage in it and am looking forward to pursuing this legal point when we have exhausted the NHS/CCG appeals process and can move it into the legal domain.
      As the law was changed after most of that generation retired, they were not in a position to make provision, i.e. private insurance to meet any future needs, a distinct disadvantage again in comparison to younger generations.
      In real terms, as a generation they have received the least and paid the most, so your question about the morality of free NHS care is completely unfounded in your mother’s case.

      • Stephen Reeve 3 years ago

        Hi Julie – A difficult situation but I do know that mum would be mortified if she knew I was spending my inheritance on her care! The parent care company have recently increased their fees – needless to say the ‘cap’ has not increased so I now find that mother’s penions’ no longer cover the ‘top-up’. That may well push me into having a conversation with NHS and the care company.

  31. Ellie 3 years ago

    Grandparents both have dementia and medical conditions that require daily tablets taken throughout the day. The cannot care for themselves generally, they have had an NHS assessment and have been put on a emergency carer system. At the moment a carer comes in twice a day and makes sure they are medically ok, however we have been told this has to stop. Grandparents refuse to pay for care, or move into a care home but would probably go through another assessment. They at least need the daily carer to continue is there a way this can be funded? Thanks.

    • Angela Sherman 3 years ago

      Have they actually been assessed for NHS Continuing Healthcare, Ellie? If not, it sounds as though this needs to be done.

      • Ellie 3 years ago

        Thank you for your reply, we thought they had when they were assessed by the GP and put on emergency care but we think your right it was not specifically for NHS continuing healthcare, so we will ask again for this. Thank you, Ellie

  32. Colin Spence 3 years ago

    I have just been told my mother only qualifies for a joint funded package with NHS providing nursing care only and mum paying the rest. She has Alzheimer, severe dementia and a heart condition does your article mean she should qualify for full funding?

    • Angela Sherman 3 years ago

      There is something called ‘joint funding’, yes. However, if a person has sufficient needs to trigger some NHS funding, then the question that needs to be asked is why have they not been found eligible for full Continuing Healthcare (CHC). Reports from many families suggest that where joint funding is suggested, healthcare needs have often been wrongly played down. If a person is not eligible for full CHC, and yet they have some nursing needs (and they are in a nursing home), Funded Nursing Care is awarded (£112/wk). If they have needs above this level, though, full CHC should be awarded. So be cautious whenever you hear the words ‘joint funding’.

  33. mary booth 3 years ago

    My 95 year old mum, late stage dementia, immobile, had a Checklist done 12 months ago and Decision Support Tool (DST) 6 months ago, they said she didn’t qualify, but she is eligible for £112 per week Funded Nursing Care (FNC) contribution towards her nursing care if she required respite in a nursing home.
    She had another Checklist done 10 weeks ago but still awaiting DST date.
    Does anyone feel this sounds right????

    • Angela Sherman 3 years ago

      The process is supposed to take 28 days from Checklist to final decision. Keep pestering them with letters and calls until they respond. You can also appeal the first decision you disagreed with it – and if you’re quick. In the meantime, you could also write to the Head of Adult Care at the local authority and say that the local authority is currently potentially in an illegal position, by effectively having responsibility for your mum’s care before a proper funding decision has been reached. http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/

      • mary booth 3 years ago

        Thanks for responding. Currently we have a complaint going through the Social Care Ombudsman. Mum owns a flat in an Extra Care complex where the care is provided by the Council, she is self funding. We had officially complained to the Council as mum’s assessed eligible care needs were not being met (their excuses have been varied including having no capacity at the times SW requested and now saying mum is at the maximum and that she needs 24 hour care in a nursing home, but as we want her to remain at home we would have to source and pay for additional carer visits from the independent sector)…. and we didn’t feel the Council had answered our complaints, saying our only recourse was the Ombudsman. I took this to the Executive of Social Care. I also contacted the local MP and she contacted the Chief Executive of the Council. On top of this is the CHC funding question and if they are suggesting she needs 24 hour nursing care and that she qualifies for respite nursing care, then why does she not qualify for full NHS funding? Can you explain about the potential illegal position of the council?

        • Angela Sherman 3 years ago

          If your mum has not been properly assessed for Continuing Healthcare (CHC) and no proper decision has been made about her eligibility, then no one can at this point say who is responsible for paying her care fees. If your mum is paying these fees, it means the local authority has effectively taken responsibility for her care, and yet it must first be clearly shown that her care needs are actually within the local authority’s legal remit for providing that care. That limit is quite low. If her care needs are beyond that legal limit, the NHS is automatically obliged to cover the cost of care, and the local authority will be in an illegal position if it continues to take responsibility. This article may help (be sure to read the comments underneath the article too): http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/ and also this one: http://caretobedifferent.co.uk/difference-between-a-healthcare-need-and-a-social-care-need/

  34. Judy G 3 years ago

    My mother had been self-funding in a nursing home for eight years at a cost of more than £1000 a week. Her care has cost nearly £350,000. We sold everything she had to afford it. We had finally been awarded CHC funding just a month or so before she died in January. I have now won a fight to get the funding backdated for a year. Is the NHS allowed to just pay it’s tariff (which might be half of what mum had actually paid) which would leave us in effect topping up her fees, or do they legally have to pay the entire amount that she had paid over that time? I’d be grateful for advice – the process has worn me out and I have all but lost the energy to fight again!

    • David 3 years ago

      Look above at the above comments regarding the National Framework, page 46 paragraph 167. It would appear that as you have been awarded full CHC funding, you can recover the total costs expended for that year.

      • Judy 3 years ago

        Thanks David – but that doesn’t actually address whether the NHS can claim that the nursing home fee covered more than they would be liable to pay. I know that the NHS does negotiate with the nursing home and only pay their tariff for forward fees, and that some nursing homes then claim that they can charge extra for the “lifestyle” offered! – even though mum had no choice as to what fee she paid. As these are retrospective fees, I’m not sure where we stand, and I can’t find this particular issue addressed anywhere.

    • Angela Sherman 3 years ago

      Go for the entire amount, Judy. There’s no fixed ‘tariff’ for CHC.

      • Judy 3 years ago

        Thank you Angela. Your book and advice have been central to my fight and it’s success and I am very grateful.

        • Chris 3 years ago

          Judy…… Some logic for you. If funding was due and denied…… Then how is it anyone’s but the NHS fault if as a result of refusing funding, they could not negotiate the cost, with the home?

          • Judy 3 years ago

            Thanks – that’s been one of my arguments precisely.

  35. Jacqueline Mowbray 3 years ago

    Please could you provide some clarity around the provision of respite care. My father was granted CHC funding. He is cared for at home by my step mother and 2 carers visit 4 times a day. CHC are trying to restrict the provision of respite carers / nursing care so that my step mother can take a holiday and have a break for a few hours every week.
    They are trying to push her down the route of managing the budget for respite care herself.
    Any help / guidance that I could refer to in my meetings with CHC team would be appreciated.

    • Angela Sherman 3 years ago

      A couple of points that may help, Jacqueline: Firstly, the NHS should not expect family members to provide care if they can’t, and if family members are unable to provide care (such as when your stepmother needs a break) the NHS must make sure care provision is in place. Secondly, you stepmother doesn’t have to agree to fully managing the budget herself. It’s worth googling more about personal budgets, e.g. AgeUK.

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