10 tips about care fees you may not know

10 tips about care fees you may not know

10 tips about care fees you may not knowIf you’re involved with your relative’s care, you’ve almost certainly spoken to someone in health and social care about who pays. The chances are they won’t have explained these 10 tips about care fees…

There are some very typical care scenarios that many families can relate to – and there are some very typical conversations about care fees that most families find themselves having. We’ve highlighted three such scenarios here:


Alice is in her 70s, she’s fit and well, plays golf, enjoys life, has a good circle of friends and all seems well. But then she has a major stroke.

She’s in hospital for many weeks until, eventually, the hospital discharge team tell Alice’s family that she will be discharged and that the family need to find her ongoing care.

The discharge coordinator at the hospital asks whether Alice owns her own home. The answer is yes, and the family are told that Alice will therefore have to sell it to pay for her care.

The family accept what they’ve been told because, well, everyone knows you have to pay, don’t you? Actually, no. You don’t.


George is in his 80s and still living at home. He also has a form of dementia. He has two care visits a day from the local authority, and his family also care for him on a daily basis.

However, George is becoming increasingly unsafe at home and and his social worker has suggested that his family find a care home for him. George is currently paying for his care visits, and the social worker tells the family that he’ll need to have a further financial assessment.

The family acknowledge that this should be done – because they’re none the wiser, and no one has said anything to the contrary. So it must be true, yes? Actually, no. It’s not.


Dorothy’s already in a care home and has been for two years. She has multiple health needs – as she did when she first went into the home.

When she arrived two years ago the care home told her that she’d have to pay if she had the money, and so began the usual means testing and financial assessments.

The family have not challenge this, because they know (from what they read in the press and what people in health and social care have told them – and indeed from what friends have told them) that Dorothy has to use up her own money before any state help is available. That’s correct, isn’t it? Actually, no. It’s not.

The first thing that should have happened in every one of these cases is an assessment of health and care needs, NOT the person’s money. There should have been an assessment for NHS Continuing Healthcare funding.

10 tips about care fees you may not know:

Here are 10 tips to help you respond when you’re in a conversation about care fees:

1) It doesn’t matter whether your relative is at home, in a care home or somewhere else, no one should ask them to pay for care until it’s been properly decided who is legally responsible.

2) NHS funding for care is called NHS Continuing Healthcare; it is available to people who meet certain criteria. Make sure you read the criteria.

3) If anyone in health and social care tells you your relative has to pay for care, ask them why they are saying that – and on what basis they’ve reached that conclusion. They can only reach that conclusion after NHS Continuing Healthcare funding has been considered.

4) You don’t have to complete ANY financial assessment forms – and certainly not before a Continuing Healthcare assessment. If you’ve had the Continuing Healthcare assessment and your relative is not eligible, you still don’t have to complete any financial assessment forms; you can simply choose to pay. Also, be sure to also appeal any Continuing Healthcare funding decision you disagree with. The health and social care authorities have no business looking into your or your relative’s finances until the Continuing Healthcare process is complete. It is none of their business.

5) Some people working in health and social are have not had adequate training in the legal context in which they work. In other words, when they’re giving you incorrect information about care fees, they may not even realise that they may be in beach of their own code of conduct, and possible also the law.

6) Familiarise yourself with the Care Act and how it helps you with Continuing Healthcare funding.

7) It doesn’t matter what diagnosis a person may have; this does not affect their eligibility for Continuing Healthcare. It is their day-to-day care needs that count.

8) If your relative receives Continuing Healthcare funding, this covers ALL their social care needs, too. It also covers the costs of accommodation, food etc in a care home.

9) Don’t let anyone discharge your relative from hospital until a Continuing Healthcare assessment hs taken place.

10) Just because your relative may have been paying for care up until now doesn’t mean they should be – or that they should be in the future.

…and an extra tip:

11) Don’t let anyone put you off having a Continuing Healthcare funding assessment. People are likely to tell you it’s “not worth it” or that you’re “not eligible” or that they “don’t have time to do an assessment” or that you “have to start paying first” – and many other untruths. Get informed. Read as much as you can in advance. Read our blog.

So if you find yourself having conversations about care fees with people in health and social care – and also care providers – be vigilant. Don’t let them steer you into paying for care before it has been properly ascertained who is actually legally responsible for paying. Never assume it is your relative.


  1. jan 1 month ago

    My mother of 96 is in a residential care home and has been for almost 2 years. It has come to the stage where she needs new items of clothing. As she only receives £24 a week to which she has her hair done at the home weekly costing £6 each time along with paying for chiropody which is £16 every 6 week i also have to pay for her toiletries which include shower gel soap powder steradent paper tissues any cough mixture or sun cream along with her few luxeries of food which she likes to have such as crisps sweets fuit and pop i am now finding it hard to cope as £24 does not pay for this and i am funding out of my own money im in my sixties and could do with reducing my hours of work but i am unable to because of paying for the extra costs of my mothers needs . Is there any funding which we could be entitled to to help with just her clothing costs.

  2. Roseanne 11 months ago

    i feel like im going mad! My Nan,92, was issued with DoLs whilst in hospital after a fall back in feb then we were told we needed to find her a care home as she had unfortunately deteriorated mentally very quickly. Very strange because there has been no true diagnosis, just old age. she’s in a care home that my mum is currently paying for as they cant access nans money even though they have information that indicates nan can pay the full expense due to her bank balance. How do we get them to use her money and not my, now retired, mums?! No one is providing us with answers and I’m really worried about mum who is struggling with high blood pressure (retired early to try and lower stress…) Has anyone else been in tis position? Nan has not got power of attorney set up because she is stubborn and ‘independent’ oh how this has bitten us on the behind! we want to enjoy what time we have left with her, not worry about this making my mum homeless 🙁

    • I Wonder. 11 months ago

      Hi Roseanne, whatever you do, DONT GO MAD.
      Terrible situation to be in and I really can appreciate how you feel.
      There must be a solution and as it seems to be a legal issue would it be sensible to consult a solicitor.
      Good luck.

  3. Malcolm 2 years ago

    Angela, my brother suffers with dementia, epilepsy and anxiety, he is now 74 and he has lived in a carehome for the last 15yrs. The council (local authority) have been contributing for the last 12yrs towards his care. In November he had a fall and broke his hip. He has been in hospital until now, the hospital say that as his needs have changed, he now requires a nursing home. They asked me to attend a meeting to discuss Continuing Healthcare, to assess whether he would qualify for full NHS funding. When I got to the meeting, it soon became apparent that the first part of the assessment had already been completed in my absence, and my brother would not be receiving the full NHS funding. It became clear that they had decided that the NHS would make a contribution towards his care, and had already been in touch with a nursing home who are prepared to take him. They then told me that I would have to pay a top up of £25 per week. I told them that I am not in any position to pay top ups, as I am a pensioner myself and have commitments of my own. I signed the assessment document, but I cannot commit myself to pay any top ups.

  4. Petrina Shurmer 3 years ago

    Well here we go again my father in law passed on December 19th 2016 I rung the CHC that day to tell he had passed they said I did not need to phone again as they can still access from paper work . And they also said they would write to us so no need to phone . We had the funeral on December 11th 2017 thinking well we had no letter or any contact since he died from them as promised. So I rung them again on 12th said to man on the phone we not had any letters from you. He said he would speak to the lady dealing with my father in law’s paper work then 30 mins later I had a call from gentlemen saying they had written to the home to get paper work. Well I rung the home the matron had not had any letters from the CHC so I rung them again and the home had not received any letters from you. So I gave him the home’s number and asked him to call the matron. Which he did he said to me that the home were going to photo copy the paper for my father in law to be accessed. I did ring the home to check as I have no faith in the CHC any more. The matron rung me to say she got it all ready for them to pick up tomorrow she had tried to ring them no answer, so I am going to ring them first thing to make sure they pick it up. Let’s see how we get on if we get turned down again we will keep fighting and appeal not happy have we been treated.

  5. Petrina Shurmer 3 years ago

    We are to going fight all the way, I am so upset they did not even listen to me they need to go and see him to access how poorly he was. He suffered for 4 years, 4 months and paid for all that time out of his own money. When he left hospital they told us he could not go home, he needed full nursing care. And he had to pay for his nursing care but I know now he should of been paid for. We will still keep fighting .

  6. Mrs Petrina Shurmer 3 years ago

    My father in law passed away on the 19th December I rung them to tell the CHC that’s he had died
    She said she had sent a a form to fill. I told them we did all that 4 years ago. They said they would be writing to us. I won’t hold my breath. I will ring every week as they said they can still assess him. They need the paperwork from the home but they did all that before. It’s such hard work. They still could not tell me how long it will be to assess now he has passed away. I bet they don’t bother well I will keep fighting for the mother in law.
    It’s not fair on my mother in law. She has been paying £1200 per week for the last four years. He was bed ridden double purée food catheter had 24 hours nursing care turned every 2 hours in the night used to be 4 hourly since getting worse in the last year every 2 hours day and night.
    He lost weight. The home has been amazing. The care he received is brilliant. The matron there said there are patient there not as bad has my father in law and they get CHC. I have lost all faith in the system it’s seems if you have money you have to pay. He spent 4 years 4 months at £1200 per week.

    • Angela Sherman 3 years ago

      I’m very sad to hear about your father-in-law, Petrina. Keep fighting if you can.

  7. Mrs Petrina Shurmer 3 years ago

    I have been ringing the Continuing Healthcare (CHC) for the last two months. They told us they would assess him within two weeks then the two weeks went bye I phoned again to told they never said that. My father in law has got worse, now oxygen, purée food now not eatin much. The home he is in are brilliant. I phoned the CHC which have changed from the Council. They’ve been taken over bye different people. They have lost all paper work for the last 4 years we have been trying to get CHC. I rung the brough council and spoke to a lady who told me to ring back the CHC and tell them they are to do a new accessment on my father in law which I did but they are not going to do. They could not even give us a date when they will assess him. But the father in law is now on morphine as he is getting weaker, can not open his eyes or now. How poorly do you have to get to get CHC. I have told the CHC what if he passes away they said they can still assess. How can you do this if he dies. Can you give any advice on what we can do please. Many thanks, Petrina

    • Angela Sherman 3 years ago

      Petrina – that sounds so frustrating and distressing for you. The behaviour of the CHC people and the council is unacceptable. Take a look a this article: http://caretobedifferent.co.uk/wits-end-nhs-continuing-healthcare/ and scroll down to the section ‘Contact the Head of Adult Care…’. That may help you in the first instance.

      • Petrina Shurmer 1 year ago

        Well we did not give up. Kept on fighting and we managed to get nearly 1 year of money back, which is better than none. Went to a meeting and we did not agree with the tool box charts they did. So we made a copy of are own and we went through it all. The meeting finished well, but I did say before we left that I will take it to the top if did not prove how poorly he was. We are very happy now. It’s not all the money back in the 4 years 6 months he had payed, but to be honest it was very stressful for the whole family but I myself have learnt so much from this and I have managed to get mother in law to live by us in a bungalow. Just incase it happens to her we would be able to help her if she needed care in her own home. I tell people don’t give up. It’s hard work but worth it in the end. Many thanks, Petrina Shurmer

  8. Paul 3 years ago

    My mother fell downstairs in her home, and went to a local hospital. (I started a diary of every day that she had in the system.) On her release within 4 hours she fell and fractured her right hip, return to local hospital, for operation. Contracted MRSA / superbug in the nose, put into a side ward. Left that hospital, and entered another hospital for rehab, Contracted Pneumonia, then entered care home.With no medical condition that would stop her going into a care home.
    (Diabetes type 2 Diet, Bed sores 3-4, MRSA in nose, bleeding from back passage, high water flow 17,Urinary Tract infections,wheelchair bound / bed bound,doubly incontinent,falls,injuries following unknown incidents,Asthmatic,Dementia, Hiatus hernia, Barretts Oesophagus, mouth ulcers, Kidney disease, pacemaker etc.) I was informed that the doctor and care home manager would submit assessment, but she was not there yet. Then a multidisciplinary team (MDT) meeting arranged and issues were raised, and a letter to be sent to care home, after score of 8, needing 24 hour care.
    Doctor called after weekend, and on examination of stomach, transported to hospital, consult would not operate, ruptured bowel, medication and fluids.My mother died two days later.
    Formal complaint sent, no real issue to investigate.
    Care home, Council in legal actions with solicitor, and matter reported to Public services
    Ombudsman, who investigated the complaint, and up-held it over POVA action, still waiting to hear about council care home fees. Keep a record of every thing and names and dates, you have to evidence all your points.

    • Angela Sherman 3 years ago

      What a terrible experience for your mother, Paul – and of course for you. Your advice about keeping detailed records is really valuable.

  9. bernie crean 3 years ago

    Sadly many Social Workers don’t have proper training with regard to their legal duties and pick things up ‘aunt sally’ from their colleagues who are equally ignorant of what their statutory duties are. Its rare to come across a Social Worker who knows the full extent of their statutory duties and few fully understand what they are under the Care Act ’14 and wont have read the operating guidance on the Care Act. See this link.https://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance

    Have a read as to what must occur with regard to assessments, CHC, deferred payments, financial assessments, top ups, direct payments, Care Act advocates… etc ….. Everything that is legally required by Social Workers is contained in this guidance. Most of them will have limited knowledge of this guidance.

    It is a legal fact that discussions about a persons financial status cannot take place until after there has been a full Care Act assessment of that persons eligible needs. Discussions about a persons finances should not occur during a CHC assessment process.

  10. Bev lowe 3 years ago

    Hi – just after some advice, my mum is a palliative COPD elderly lady who was fast tracked for Continuing Healthcare (CHC) in June 2016. No one informed me of that the funding could end or be reviewed. CHC said they sent a letter in June which I never received. She is in 24 hour nursing care at the end of life. 12 Oct a CHC review was done with social worker, CHC nurse, care home nurse and myself. I had no idea what the meeting entailed or implications on funding. CHC removed as a result. Social care will contribute towards care home, Funded Nursing Care (FNC) funding also being received but I now have to pay £200 top up per month which I cannot afford but feel a move to another home will have a detrimental affect on my mum’s health. She is aware of this situation and it is causing her stress upset and further health issues. Is there anything I can do as the only option I have been given is move to her to a cheaper care home, move her into my home although social care and myself say this willing her at serious risk or keep her at current home and pay top ups which I simply can’t afford. I have sent complaint letter to hospital discharge team, CHC funding and social services. What can I do as I’m worried sick about this situation when the funding ends. Do I have to pay the top up if no resolution is found? Thank you

  11. Jenny 3 years ago

    My daughter looks after her elderly aunt (her father’s sister). Her father held power of attorney for some 12 years, although it was never used and until recently he has been diagnosed terminally ill and therefore asked his two daughters to take over, which was done. For the past year or so my daughter gave up a full time job to care for her aunt and was paid well privately by her aunt and her father. My daughter has for over 20 years been a matron in a residential home so knows her trade well.
    Auntie has just been awarded Continuing Healthcare due to her ongoing health problems and since her last stay in hospital she was also assessed as needing two careers twice a day to wash and dress her as she cannot weight bear and a hoist has been fitted.
    We are grateful for the outcome in her assessment and did not have any trouble getting it, but she is a very poorly lady and on an end of life plan .
    We have not asked for any payment yet for her care which at the moment is paid privately. Could you advise me how we claim this, do we just send receipts in monthly and can we claim for the care my daughter is employed to do or will we still need to pay her privately.
    I would also like to know if this award will also Affect her Attendance Allowance.
    Many thanks


    • Angela Sherman 3 years ago

      Jenny – usually the CCG pays the care provider directly. If you have a personal budget this can work differently though, but you shouldn’t still be paying for care yourselves. Also, it is only the aunt’s money that should ever have been taken into account in any means testing, not your daughter’s father’s money. One of you may be able to claim this back on his behalf. Send all care bills to the NHS and make sure the care provider is aware you are receiving Continuing Healthcare funding.

  12. david pope 3 years ago

    Hi – my dad has end stage heart and kidney failure and is unable to do things for himself. His heart failure nurse applied for fast track NHS Continuing Healthcare. He was told they would start twice but now that’s not going to happen and they’re trying to push him for social care, even though he has been told his care is more palliative based. His span is limited and his heart could stop at any time. Any advice welcome?

  13. Richard 3 years ago

    Ok short version ; Mum in law (MIL) in hospital (140 days delayed discharge and counting). Objectively worse than Pamela Coughlan.

    CHC in April refused and since then condition deteriorated. NHS refuse to do another assessment despite 3 grade 4 pressure sores, when prior to April never had a skin problem; local authority (LA) social worker says needs 24 h nursing care beyond what the LA can provide. The LA refuse to challenge but refuse to challenge the CCG decision.

    NHS have now written to mum in law to revoke her “licence to occupy”. LA social worker refuses to attend to discuss mum’s care needs beyond the point blank assertion she has to go into a nursing home. MIL adamantly does not want to be forced into home and has been deemed as having capacity.

    Social Services take is “done our bit” by finding a self funding care home to put you in!

    Have any of you had experience of what steps the hospital practically or legally will take next?

  14. John Gurney 3 years ago

    My son has severe learning disabilities and various health problems. He is fully funded by Continuing Healthcare. He gets ESA and DLA (higher rate for both the Care and Mobility components. If he goes into residential care does he have to pay his DLA Care Component over towards the care cost?

  15. teresa kotara 3 years ago

    My husband was transferred from hospital where he has been under Section 3 for over two years and is in supported housing which the council just pays for 24 care and I pay rent bills food etc. because its not classed as care home. I managed to get 50 per cent housing benefit. this has been a stressful time for me. My husbands social worker and the doctors and the private agency have applied for a domestic least restrictive Deprivation of Liberty Act to the courts of protection in June without telling me until last week. This is worrying me. as I feel it could progress to other deprivations like financial his pensions which Im in charge now but dont have power of attorney made in past or applied to Court of protection for depytiship which I might have to now. I asked the social worker why they could not apply for a normail local authority one and why higher? There is another resident living there normally without this dols. I heard many people live in supported housing after being from hospital without any legislation and the council pays the care fees. She said they had to apply as the council pay the fees but that is not true. What are they up to? Is not my husband entitled to a mental health advocate?

  16. June Harris 3 years ago

    Just thought I would share my experiences with you. My father had two Continuing Healthcare (CHC) assessments and was refused. However at the third he finally qualified. His case: 95 with severe dementia, violent behaviour, bed bound, had to be turned every two hours, had to be fed etc etc. Had review and was advised that he no longer qualified. Mainly due to the fact that the home kept him sedated and his behaviour was therefore better. Asked for details of appeal and was advised that as I did not hold power of attorney and no signed authority from my father I could not appeal. Despite the fact that I had been involved all through the four assessments. He then took a turn for the worse and the home told they had put his end of life plan into effect. I telephoned NHS about getting funding put back and was told to get the home to fill in a form to apply. He sadly died a week later. Appears that they were even trying to pull a fast one in the final stages. This whole system is an absolute disgrace. Just calculated that my father had paid a total of £125,000 in care fees before he died.

    • Angela Sherman 3 years ago

      June – that’s a very typical flaw in the process: that the assessors looked at managed needs instead of the raw underlying needs. What an awful experience for you at the end of your father’s life, too. It’s beyond shocking happens in so many Continuing Healthcare applications, assessments and reviews.

  17. Anne 3 years ago

    Marcus, you don’t need a lawyer, search “Subject access request ICO” for how to do this.

    • Marcus 3 years ago

      Thanks Anne,

      I finally got a reply, it took them 14 days to reply………

  18. Marcus 3 years ago

    Still no replies from the CCG, so now I will write a letter and send it by registered mail. If they still refuse to reply, then I will need to employ a lawyer to demand the information under the Freedom Of Information Act. This is starting to get even more expensive.

  19. Marcus 3 years ago

    I have been trying to get the ball rolling the past month. But everyone is ducking the question. My mother had a stroke in 2010 and was left disabled down her left-hand side, and she has since required 24/7 care – according to my assessment. She was discharged by the Hospital. The Ward Manger at the hospital has no records for her. I am now chasing the CCG for her records, but they don’t reply to my questions. The cost of all this – incalculable. In monetary terms, somewhere around the cost of a house, 300K.

  20. Julie White 3 years ago

    My mother suffered a stroke 7 years ago and was unable to care for herself. She received full Continuing Care funding and has continued to do so until this year, Due to changes in the eligibility, she was told she would no longer receive the full funding, but would get £156 towards her nursing needs. The Nursing home is privately run and the local council is refusing to meet the top up costs. There is a shortfall of £130 a week, which they say I should provide as she should have most of the state pension she was paid, intact! With 7 grandchildren and a generous nature this is not the case! She has spent the money on clothes , hair and chiropody costs and books and magazines, etc, because she assumed it was HER money to spend! The council is suggesting “depravation of assets” that I may have taken the money so she wouldn’t have to pay! They want to move her to a Council run home that is cheaper and are refusing to meet the full costs of her current home, despite both the continuing care AND social worker’s recommendations that she should remain in her current home as a move could have a devastating effect on her health! her Doctor and the home are currently writing reports to support this but I don’t know if this will be enough to prevent this happening. She is 88 and unable to walk. She is having panic attacks and breathing difficulties as a result of the worry. She considers her current Nursing home as “home” as it has been for 7 years and the staff and other patients as “family”. I cannot see her surviving a move and as the home she is in scored “Good” in all the reports this year and the home they wish to move to “Needs Improvement” I can’t see how they can justify such action? She has no assets, I’ve provided 2 years Bank statements and I don’t have £130 per week disposable income to pay. I’m beside myself with worry and would be grateful for any advice

    • Angela Sherman 3 years ago

      Julie – you mentioned ‘changes in the eligibility’. Just in case there’s any confusion, there have been no changes in the actual eligibility criteria, and so it sounds as though the CCG has decided your mother’s care needs have reduced. They can only make this decision after a proper review, at which you are also present and into which you have been invited to input. You can appeal. Ask to see the paperwork for the review and then pick apart everything you disagree with and pick up on any omissions. If there’s no paperwork, then there was no proper review. It means that the local authority is now potentially acting illegally in effectively taking responsibility for your mother’s care and means testing her.

  21. Henry Barnham 3 years ago

    This post sums it all up and I am convinced I would be wasting my time and energy if I were to try and get ongoing care for my wife 82 + yrs old who has vascular dementia.
    This is not a weakness or cowardice of myself but at 92 yrs old I don’t believe in bashing my head against a brick wall and will use my energy to try and help my wife to bear with this terrible disease and live at home as long as possible as this is what she wants.
    Dealing with the problem of ongoing care is not going to be solved by individuals, the only way forward is by someone or some organisation and all the charities like Alzheimers, cancer, stroke etc to promote a group strong enough to make the government take action to sort the rules, instead of spending money employing staff to use every possible excuse to prevent extremely ill people and their families from all the extreme stress at this horrible time of their lives.
    Angela has done a wonderful thing and hopefully it can be built up to really make the people responsible take notice .
    All the newspapers should be galvanised to work together and hit the public in one fell swoop to enlighten everyone to the situation.
    And what about social media surely there is plenty of scope there.
    Time to stand up and be counted folks.

    • Michelle austin 3 years ago

      Here here Henry, well said x

    • Angela Sherman 3 years ago

      Thank you for your kind words about Care To Be Different, Henry.

  22. Julia 3 years ago

    Hi there
    My mum is currently in a nursing home that specialises in dementia. She was admitted there after being in hospital after a near death experience and was granted continuing care1. This was about a year ago. We havent paid anything, but lately she was pre assessed. The assesor advised that mum was no longer cc1 and basically they should have only paid for 6 wks. The assessment is down to her manager and we will know in a month or so. How can they suddenly say a 91yr old with dementia, doubly incontinent and can’t feed herself properly isnt deemed as cc1 anymore. In my eyes shes not going to get any better. Can they do this?

    • Angela Sherman 3 years ago

      Julia – it sounds as though your mum was receiving intermediate care, which is funded and usually lasts for six weeks. However, that doesn’t mea that at the end of six weeks she has to start paying. At the end of six weeks she should have been assessed for NHS Continuing Healthcare funding. See the links in my response to Carol, above..

      • Julia 3 years ago

        No, Mum was originally given weeks to.months in hospital and was given cc1 funding. We found her a local care home that specialises in dementia that was on a list given to us. We were told it was to be funded by the Nhs. Mum no longer talks, has pureed food, doubly incontinent and is totally immobile. She has a pressure sore mattress and a crash mat. I would deem her to need nursing care and definitely 24 hr monitoring. To me this is more than social care. She is like a child, completely dependant on everyone else for everything. Very sad. Not my mum anymore. It is all so upsetting without needing the stress of having to pay for her to end up like this. I know she wouldnt want to end her last months years like this.

        • Angela Sherman 3 years ago

          Julia – can you clarify what you mean by ‘cc1’?

  23. Michelle Austin 3 years ago

    Hi, firstly thanks for all the info and guides that you publish, I have picked up many tips.
    My Mom has been in a care home for 18months, she has no savings and so her care is paid for via pension and I have too pay the top up fee of £196. When she first went into the home I mentioned to the manager about contunuing healthcareas mom has never been assessed, she didn’t really want to discuss it and then went on to say that if she got it for any reason, she would have to move care home as they didn’t accept it there and it wouldbe a lesser home, so I have left it, I take it that is not true?
    Thank you, Michelle.

  24. Mrs Petrina Shurmer 3 years ago

    My father in law had a stroke a bleed to the brain has to have 24 hour care we have tried at least 4 times been told not poorly enough to get Continuing Healthcare funding . He is now on oxygen breathing problems he has been paying at the end august 4 years at £1200 pounds a week it’s not fair his poor wife is still alive she has leukaemia can not afford to spend money to go to see him every day as it is £15.00 a day to get there and back we do weekends he is so poorly purée food it’s so sad he worked so hard all his life . Now he us on oxygen I have asked his doctor to fast track him to try and get Continuing Healthcare but I won’t hold my breath.

    • Angela Sherman 3 years ago

      Petrina – has your father in law actually had an assessment – or has someone just said verbally that he won’t be eligible? If it’s the former, you can appeal; if it’s the latter, then insist that an assessment is carried out. See the links in my response to Carol above.

  25. Carol Barnes 3 years ago

    A friend who I care for and at the moment and is his LPA came out of hospital after a fall he is 92. I was told he need 24 hour care. The social services got involved and helped pay towards his care fees. However to be able to pay for 24hour care I was encouraged to release equity on his house. He had no other means to pay for it. He has pleaded for me not to go put him into a home and to let him die at home. I have released the maximum equity on his house which will only last about two years. As soon as I got the equity release, the social services dropped him like a stone financially and we had to pay back the fees that they paid on his behalf whilst waiting for the equity to come. He has dementia, cannot walk and has macular degeneration. Do you think he would qualify for NHS funding to help him? It would be wonderful and could keep him at home for longer.
    Thank you

  26. Anne 3 years ago

    I have just had my late mother’s retrospective claim refused by the Ombudsman who said that although my mother’s DSTs scores exceeded Pam Coughlan’s it was not for them to compare my mother’s with someone else’s. They also ignored their own guidelines by accepting there is no issue in having a sole RGN determine eligibility despite my mother having vascular dementia, with the decision apparently being ‘ratified’ by an unspecified MDT. I was unable to get prime records from the CCG but was able to demonstrate the hospital records were incomplete. There are numerous inconsistencies in their review yet they have determined their decision is final without the right of appeal. My only recourse now is to go to my MP so I hold out little hope of ever getting my £60k back. The whole system is a joke.

    • Angela Sherman 3 years ago

      Anne – there would certainly seem to be clear errors there on the part of the CCG and the Ombudsman. Do let us know how you get on with your MP.

      • Anne 3 years ago

        Rather than talk to my MP which I felt would achieve little I decided to explore the case for Judicial Review. My argument against the NHS and PHSO being that whilst the assessments are arrived at by reference to the National Framework and in turn that is designed to reflect the provisions in statute and case law, neither bodies are prepared to reconcile the final decisions back to statute to ensure correctness. Rather, they are free to interpret the National Framework as they wish and the final link in the chain – reconciling the outcome with statute – is missing.
        I researched Judicial Review and found a consensus that it would be quick and cost £10k to £30k. I also researched Legal Aid as I am Executor of my late mother’s Will and wished to protect the interests of the beneficiaries. It seemed worth pursuing. However having taken legal advice it seems there is no chance of obtaining Legal Aid; taking on the NHS and PHSO is in reality likely to cost £70-80k and given there is no provision for any legal action specified in my mother’s Will I cannot therefore be acting in my capacity as Executor, so would be personally liable for costs. I can’t risk this as I also care for my OH. (Mother died in 2012 and I made a retrospective CHC claim later that year so this state of affairs could not have been anticipated.) I was also advised that, contrary to what I have read here, Coughlan is no longer applicable as the law has been changed since then. So all in all it seems you have to be wealthy enough not to need CHC to use the law effectively. I still feel aggrieved that the care fees paid were in excess of £60k when my mother’s DST outcome easily compared with Coughlan but clearly we have reached the end of the road. This system is so very wrong. It stemmed from the old story of being advised at the outset that my mother did not qualify for any funding because she was not being looked after by registered nurses in a nursing home, which I accepted at face value until the Radio 4 broadcast on Moneybox. How I wish I had known the truth at the outset, it would have been so very different.

        • Richard 3 years ago

          Would suggest a second opinion from a barrister in this area Coughlan and Grogan stand . If they don’t and we missed it every ccg in the land would have it on the front page of their website with a direct chain of reasoning and would shout it from the rooftops. This wonderful site would close down and we would all give up and go home.

          Legal aid is virtually gone in all areas of law . Pro bono and contigency fees are still out there and worth looking at.
          If as executor you believe with grounds the bill being presented is invalid it can be argued that you have a duty to challenge/refuse to pay they could take the estate to court where the main defense would be Coughlan they would before the judge have to show that relative had needs less than PC worth getting a legal second opinion before getting the cheque book out suggest going straight to a QC for an opinion

  27. Gillian Brown 3 years ago

    Hi, I have father-in-law and his brother who I have looked after for 5 years now in care homes. Both have under £10.000, but still have to contribute both state and private pensions with £20-30 a week pocket money, as dad calls it. Is this right?

    • Angela Sherman 3 years ago

      Gillian – this may help to start with: http://caretobedifferent.co.uk/paying-care-home-fees/savings-thresholds/ However, if there has been no Continuing Healthcare funding assessment, it’s vital to get this started as soon as possible.

    • Sharon M Rogers 3 years ago

      Hi I have been researching this whole process since my mum suddenly passed three years ago. My dad who has been paralysed fully down his left side from a brain haemorrhage when he was 36 (he’s now 73) needed 24 HR care which was provided by my mum. We had to move him into emergency respite two days after she passed. The first home he was in neglected him badly, I took photos made notes everyday and brought in safeguarding inspectors. He was moved to a different home where he has settled as best as can be expected. My dad was asked to complete a financial assessment, I told the council they were asking an illegal action and I was unwilling to do so. My father was given a DST which refused him eligibility. We initially part funded his care. I requested a second DST a couple of months later and after nit picking through every bit of the DST checklist I printed off that and also the Coughlan case. I went through every word in comparison to my father and his needs and actually believed his needs were greater. I challenged the decision and when I mentioned case law I was told it was irrelevant. However armed with so much more info and a willingness to succeed no matter what I challenged every question. My father had sleep apnoea it had not been diagnosed so it was raised and again after further research I asked for an assessment for a CPAP machine to help him breathe at night. He has this now and continuing health care. They decided they would refund his fees back overs and grant CHC. Some 16 mths or so later they’re now trying to pull his funding. His health is far worse, he has had septicaemia three times and lived when we thought he wouldn’t. He is now catheterised has tons of other new health issues. They’ve had a meeting without consulting me and told my dad that someone else will pay for his care! My father has capacity but doesn’t understand the process. By the sounds of things the two who came to assess were green as grass. I’m now waiting for a new DST and I will be damned if I will let them pull his funding, take all of his state pension, 50% of his private pension and leave him with pocket money and not the correct level of care.

      Advice, persist, be confident, research as much as you can. Get the bit between your teeth and don’t let them win. Our relatives deserved proper funded care and we will succeed for them xx good luck x

      • Angela Sherman 3 years ago

        Sharon – the degree of ignorance amongst some people working in health and social care is shocking. The person who stated that the law is irrelevant in an attempt to extract personal assets from your dad is surely in serious breach of their professional code of conduct, to say the least. It sounds as though you were subsequently granted the funding, and yet they’re now trying to remove it. Keep fighting – thanks for sharing your tips too. In case it helps, be aware that having ‘capacity’ doesn’t mean that a person generally understands what’s going on; ‘capacity’ is instead a very specific thing for specific decisions: http://caretobedifferent.co.uk/mental-capacity-assessments/

        • Sharon M Rogers 3 years ago

          Thanks very much Angela. Oh believe me, I have had to research for hours and hours over months to gain my information. I’ve had meetings with the DWP regarding my dad and exactly that, capacity. He has capacity but he doesn’t understand the procedures and that’s why he wants me to support him. I’ve paid for lasting power of attorney over his finances and I’m considering the same over his health in case his level changes. He was granted full funding and they refunded his fees that he had paid. My questions to them will be, how long have you been doing this role? What is your understanding of CHC? Most importantly when my dad was eventually granted CHC and all fees repaid, what in his situation has changed when his health is actually so much worse and his needs now so much greater.

          It infuriates me that so many people would get lost off in the dialogue of it all and then lose their well earned and deserved homes etc which would eventually move onto family. It’s truly disgusting.

  28. Carol Browne 3 years ago

    All those scenarios are so similar to mine. After mum had two broken hips, several strokes, heart attack, she was diagnosed with vascular dementia. I was asked by social worker at hospital if mum had her own house, which she did. I was then told she would have to pay for a care home. Then I was given a huge list and told to find a home. As you can imagine I was devastated about my mum and began my search. I was later told she would be nursing – meaning an extra 100 pounds a week. I enquired about Continuing Care last November. We had an assessment in March. She was then officially nursing. Had to wait over a month for Continuing Care assessment. By this time mum couldn’t walk hardly, not able to feed properly, very confused. Had to wait for second assessment. During this time mum was readmitted to hospital. On day of next assessment my Mum went to sleep. I am now waiting cos they did a desk top assessment two weeks ago.

    • Angela Sherman 3 years ago

      Those questions about money are so typical, Carol – sadly. Wishing you well.

  29. June Atkinson 3 years ago

    Following my earlier comment about challenging an Assessment, here are some links which may help, bearing in mind that I challenged my husband’s case nearly four years ago.
    The Coughlan Case For Care Funding – Care to be Different
    Pamela Coughlan’s case clarified the law regarding NHS Continuing Healthcare. … She pursued a case against the NHS to secure NHS Continuing Healthcare, fighting it in the High Court. … In Pamela Coughlan’s case, the Court of Appeal ruled that her nursing care was the …
    Coughlan case and Grogan case checklist for NHS Continuing Care
    11 Jul 2012 – The landmark Coughlan case was brought by Pamela Coughlan, who had been seriously disabled in a road accident. When her care funding …
    NHS Continuing Healthcare Landmark Legal Cases
    The Coughlan case and Grogan case – and NHS Continuing Healthcare. Landmark legal cases. Many families have challenged the NHS on decisions to deny …

    • Angela Sherman 3 years ago

      Thanks for your comments, June.

  30. Jan 3 years ago

    Just got Continuing Healthcare (CHC) funding for my dad. Armed myself with as much info as poss. Got a meeting with everyone who needed to be there. He got 1 severe and 2 highs. Also got the much needed bed witch comes through district nurses. This website is a fantastic starting point – really helpful. Read all i could felt very confident. Nobody tells you about the NHS’s best kept secret. Don’t let health pros put you off and be at every meeting about your relative. Good luck – if i did it you can too.

    • Angela Sherman 3 years ago

      Thank you for your kind words, Jan.

  31. June Atkinson 3 years ago

    We had already paid nearly £20,000 on care fees and I decided to challenge the system. I did a lot of research and found two High Court judgments which supported my view that my husband’s condition should place him under NHS continuing care, not Social Care. We gained another assessment, our GP was fully informed and the outcome was in my husband’s favour. Sadly he died within two months. Be prepared to persevere and challenge!

  32. Linda 3 years ago

    My Dad has been in a Care Home for 21 months and is self funded. I have now had to sell his house to meet funding costs. Prior to leaving hospital I had a meeting with the Doctor to ask about continuing healthcare but was told Dad was not entitled to this. Dad has Lewy Body Dementia and prostate problems therefore requires an in/out catheter. He has had to fund his care for 21 months along with minimal funding from Social Work. Can you advise if there is anything I can do?

  33. Luke 3 years ago

    Many thanks for this insightful advice. I have a relative who was discharged from hospital without a (DST) assessment. He was placed in a home by the local authority (Adult Care) and we were forced to complete a financial assessment and thus contribute to his care fees. Nine months later we are receiving our first DST assessment despite lengthy correspondence with the local authority and our MP.

    Would you be able to pinpoint where in policy terms it states that a DST assessment should have been conducted prior to discharge from hospital.

    And equally where it states that we needn’t have contributed to care until the assessment took place?

    Any advice prior to the DST assessment would be very valuable!

    Kind Regards,


  34. John greenwood 3 years ago

    I have a relative deemed not eligible for continuing healthcare now in a care home but just diagnosed with non operative cancer . Can I resume fight to get her funding ?

    • Angela Sherman 3 years ago

      John – you can ask for a new assessment, yes, especially if your relative’s care needs have increased. His/her diagnosis doesn’t determine eligibility in itself; instead it the whole picture of need.

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