Fighting for NHS Continuing Health Care: Why Angela Sherman set up Care To Be Different

Fighting for NHS Continuing Health Care: Why Angela Sherman set up Care To Be Different

Angela-Sherman-Care-To-Be-Different Angela Sherman, founder and director of Care To Be Different, explains how her stubborn streak helped her secure fully-funded NHS care for her parents – and why she set up Care To Be Different as a result…

“I was never a natural when it came to standing up to authority – until 2005 when both of my parents went into full-time care and I found myself face to face with the NHS.

“My parents both had the same illnesses (advanced Parkinson’s disease and dementia for starters), both needed care, both went into a care home on the same day, both were illegally charged for care (which cost them their home and everything they’d worked for) – and they both subsequently died within a few weeks of each other four and a half years later.

“To say that I was shell-shocked after that would be an understatement. It was a harrowing experience – yet one I know is also shared by tens of thousands of other people across the country.

“At the start I knew nothing about the care funding system or the Continuing Healthcare funding criteria and I, like many other people, simply assumed that because my parents had a house and some savings they’d have to pay for care. After all, that’s what the health and social care authorities tell us, isn’t it?

“I soon realised, however, that this is in fact not the case. I started reading about Pamela Coughlan and the now well-known Coughlan case at the Court of Appeal, and the Grogan case, and began to realise my parents’ care fees were in fact illegal and that they should be receiving NHS Continuing Healthcare funding to cover all their care fees.

“I started exploring what actual assessments had been done for my parents when they went into care, and I was shocked at what I found. The process was a mess – and highly questionable: Assessments had either not been done properly or not at all; in my mother’s case the NHS asked my father (who had dementia) to sign paperwork that was then used to deny her funding; I had been kept out of the loop (despite holding a power of attorney); I’d been given incorrect information; and key health needs had been completely disregarded. When I arranged for reassessments to be done I experienced verbal intimidation by one assessor and blatant misstatements of fact by another.

“Back then very few organisations, including the big charities, seemed to have even heard of Continuing Care, let alone be in a position to help me fight my parents’ corner. But, despite people in the care system being unwilling or unable to help me, I did a ton of research and started delving into the dark recesses of Continuing Care maladministration. I had no idea how to prepare for Continuing Care assessments, but I was going to find out. The local authority told me their files would now be closed and the care home management was appalling in its indifference. I felt utterly alone. I realised it was going to take all the energy I could muster to fight this.

“I’m typically Taurean – we are (apparently) relentlessly persistent and determined, but also annoyingly stubborn and inflexible. I now count all those traits as blessings. My battle for Continuing Care for both of my parents took three and a half years and left me exhausted – not least because of the 250 mile round trip each time I visited them or attended any meetings, but also because I was a self-employed writer at the time and keeping a business afloat.

“And, of course, at the centre of it all were two people I loved who were dying. My father had developed kidney cancer and my mother had several strokes.

“My parents ran out of money, and the care home came after me personally for funds. It is, of course, not the family’s responsibility to pay care fees in this situation; instead, it’s up to the local authority. I realised how easy it is to be taken in by what the various care authorities tell you. But I was having none of it. I was incensed at what the State had put us though – and at what it was still trying to do.

“My mother’s case went all the way to a Strategic Health Authority tribunal. I learned so much about the care system during that time, how to counter what the NHS was saying, how to back up my case from a legal point of view, how to challenge the misinformation and appalling lack of knowledge on the part of the assessors, how to put the NHS on the back foot in an assessment and how to write a powerful appeal.

“I won my mother’s case, and I repeated similar arguments in my father’s case, using the same process, the same research and the same strategies to challenge everything. Eventually I won his case too. The NHS was forced to repay care fees and provide Continuing Care funding on an ongoing basis.

“I believe Continuing Care is one of the biggest scandals in elderly care in the UK. After my parents died, I realised that my experience and knowledge would be valuable to other families, and that’s why I set up Care To Be Different. I also knew that I could do things a lot more quickly for clients – and that I could make the process easier for them.

“Plus, I understood the tears, pain and anguish that families go through and how important it is to have someone on your side who is not simply helping from theoretical knowledge, but who has ‘been there and done it’ and who understands the ins and outs of the system. I also wanted to put a lot of my knowledge together in a format that families could access easily; my e-book, ‘How To Get The NHS To Pay For Care’, has now proved valuable in helping many clients successfully obtain Continuing Care funding.

“My message to anyone who has an elderly relative in care and paying care fees is simple: challenge everything you’re told and don’t take no for an answer.

The NHS was set up to provide healthcare and nursing care free of charge at the point of use. That hasn’t changed – it’s enacted in law – and just because someone is old and in a care home doesn’t mean the authorities can change the rules.”

Read more about Continuing Healthcare and how to get assessed.


  1. Norma Thorpe 3 weeks ago

    From Norma: My Husband spent 15 months in a residential home and was self funding, three thousand two hundred every four weeks. He is 81 years who lost capacity and suffers from vascular dementia alzheimers and prostate cancer, weak on his legs and prone to constant falls. I have power of attorney for him for health and finance. To cut a long story short, in May this year 2018 after giving notice, I removed him from the care home and brought him to Barnet hospital where he was admitted right away due to his state when he left the care home, slumped in a wheelchair and they found him to be dehydrated with lots of marks on his body. During his early days of stay in hospital a scan was done on his head that showed he suffered head injuries while he was living in the care home due to many falls which was subdural haematoma on both sides of his brain. The local authority held a safeguarding meeting with the manager and deptuy, social worker, chatt nurse in June.
    During the meeting the managers of the home produce 6 daily records of his falls and said “6 falls in 15 months is not a lot” though I argued it was more than that. After checking the entire daily records for the past 15 months and found he suffered 24 recorded falls.
    Though he told them he fell on his head and head was hurting after one or more of his falls, yet he was never sent to hospital to check his head during the 15 months he was in the care home. I sent all the copies of the falls with a strong letter which showed all the evidence of falls and the false statements of the managers to the local authority. So I am asking you please, do I need to see a lawyer and should I send a formal letter of complaint to the residential home. Your advice will be very much appreciated.

    Thank you

  2. Mick ross 2 months ago

    Question from Mick:

    ➢ Had a severe stroke 24 September 2009
    ➢ Paralysed along left hand side, has no movement of left arm and leg
    ➢ Can not walk
    ➢ Broke her left leg as a result of falling out of bed
    ➢ Left arm and hand causes pain when moved or even touched
    ➢ Taking several drugs including Warfarin which makes her bruise easily
    ➢ Registered blind
    ➢ Suffers with Dementia
    ➢ Has no short term memory
    ➢ Has Charles Bonnet Syndrome
    ➢ Double incontinent
    ➢ Often rudely swears at the care staff
    ➢ Is most unhelpful when being washed, especially during hair wash or when her nails are being cut
    ➢ Shows signs of aggression
    ➢ Has difficulty recognising people, even her only son
    ➢ Has to be hoisted in to a wheelchair to be pushed around the care home
    ➢ Does not talk to other residents
    ➢ Can not feed herself or locate her drink
    ➢ Can not locate or use the alarm bell
    ➢ Usually fast asleep most of the time, especially during visiting time
    ➢ Requires 24 hour nursing care
    This was my mother who died on my birthday, 02, January 2016. Her final bank money is £19, 302.45 but the local authority want me to pay over £10,000 in back fees. I have read your articles and I feel that this authority has got it wrong. However, I have received a warning that unless I pay I will go to court. I will had to pay. is this right?

  3. Sue 6 months ago

    I have just achieved what I thought the impossible & full funding has been recommended for my Mum. Only taken since 2012 but in all honesty the best decision I made was to move Mum 20 miles down the road after she suffered a fractured neck of femur. Handled by a different CCG who seemed far more approachable & willing to work within the law for NHS Continuing Healthcare (CHC). I still have a retrospective claim ongoing with a CCG that have a dreadful reputation dragging their heels & doing all they can to avoid paying. That has now been referred to the Ombudsman. Your Bible has been invaluable. I have spent hours & hours since Christmas working on my Mums case & would never have known what I knew on the day had it not been for that. Thank you Angela x

    • Angela Sherman 6 months ago

      That’s great news, Sue – well done for persevering. And thank you for your very kind words.

  4. Angela Thomas 11 months ago

    Angela, we have found your book most valuable in fighting to get NHS Continuing Healthcare (CHC) for my mother-in-law who was diagnosed with dementia back in 2013. At that stage she was in a care home but due to the deterioration of her condition she has for the last eight months been moved to a nursing home. We recently had a review carried out and it appears that they are recommending that CHC is no longer payable and she will be moved to NHS Nursing funding with a top up of £500 a week being asked for from my elderly father-in-law who cannot afford that. Apparently it has been assessed that her behavior no longer causes a threat and also that she has gained 2 kilos so it is seen that she is improving (!!). She has only gained weight as my father in law is paying someone to sit with her and feed her and her behavior has calmed down due to the drugs she is on. Can you offer any advice.

  5. Timothy Waite 1 year ago

    Thankyou for the information. As of now I’m just looking to see if I can get Continuing Healthcare (CHC) for the carer we have comng in every evening to ostensibly make sure my Stepfather takes his tablets and give a bit of moral support to my Mother. Can anyone tell me simply where is the initial port of call to get a health worker to screen the scenario using the ‘Checklist Tool’. I’m sure this is in Angela’s e-book but I haven’t had time to download it yet and am a bit under pressure. And does anyone know if I could potentially backdate a claim of this sort to when the care started? Thanks

  6. Timothy Waite 1 year ago

    My Stepfather has a rare degnerative brain condition Fahrs Disease and post-stroke complications leading to limited communication and intelligence. He may need to go into a home sometime and I feel that Continuing Healthcare (CHC) funding may be the only way he can do that and my Mum be able to stay able to pay the bills in her own home . Will Angela’s book be all I need to assist me or do I really need to hire one of the many legal firms touting to help people acquire CHC funding ?

  7. Carol Chesborough 2 years ago

    My mum is currently in care after having a severe stroke. She was initially fast tracked by the hospital in August 2016 and granted Continuing Healthcare (CHC). Mum was re-assessed at the Multidisciplinary Team Meeting (MDT) in early January 2017 and we were told she didn’t meet the criteria for CHC funding but the report would go to the CCG and we would be informed in writing after their meeting, but it was made clear that their decision would be accepted. Today, 21st March 2017, my dad received a letter from CCG group stating mum is eligible for CHC but the report from MDT was included in the correspondence stating that they didn’t recommend it. I just want to set my mind at rest as I’m still uncertain. Does the CCG ever go against an MDT decision in this way? I would be most grateful for help here. Many thanks, Carol

  8. John Rigby 2 years ago

    My wife now has Continuing Healthcare and we now have the funding offered in a letter. However I had to fight for the correct backdating of the offer, telling the CCG that it should have been backdated to 29 days after the checklist was first completed. Why do these professionals behave so dishonestly with such vulnerable patients?
    Again, thank you for your ‘bible’ on Continuing Healthcare, which has paid for itself thousands of times over.

    • Angela Sherman 2 years ago

      Thanks for your very kind words, John, and I’m glad you have now secured the funding for your wife. Yes, the maladministration in the CHC process seems widespread – and it is, of course, wholly unacceptable.

      • Kevin Raftery 2 years ago

        My mum’s CHC was taken away in November 2015, there was a social worker present but she did not know my mum and agreed with everything the CHC said. I have no record of a SAP3 contribution by that particular social worker. I asked for a new assessment more recently in December 2016 and a social worker who knew my mother made a SAP3 contribution and stated that she feels my mum should be in receipt of CHC because: “In my professional opinion her needs interrelate within the DST. Her needs should be considered in their totality and the fact that her needs are so well managed and are not problematic I feel indicates that her needs “are beyond the lawful power of the LA to meet.” Can I use this new SAP3 report as evidence in the NHS England Tribunal Appeal regarding my mums CHC which was taken away in November 2015? I believe that the NHS England tribunal will concentrate on my mum’s needs that were evident in November 2015 even though her needs are more or less the same now as they were then.

        • Angela Sherman 2 years ago

          Kevin – if the social worker can see that your mum’s needs are beyond the legal remit for LA care, then the LA will be acting illegally if it caves in to the CCG and CHC funding is denied. All relevant evidence should be taken into account including the social worker’s report(s). And, of course, needs should be assessed as if no care were in place:

  9. . 2 years ago

    I have been fighting continuing healthcare for my mum since 2004.

  10. Clive and Sue Gardner 2 years ago

    My wife and I purchased your invaluable guides and were well prepared for the various meetings and comments made by Social Services when a relative had to go into full time care following a Section 3 confinement.
    When the chairperson of a meeting held to discuss the relatives onward move from the psychiatric hospital asked if he “rented or owned his home”, we gently, but confidently, challenged why that was relevant as his care would be totally funded. From that point on we had no major issues and I think that when we picked them up on smaller details the message got across that we were well informed. The process ran smoothly from then and Social Services found an excellent placement, where he was safe and contained on a 117 license.
    Regrettably the relative’s physical health deteriorated over the last 5 months and he died. But there is no doubt that he enjoyed the best 5 months of his life during his time in a placement that was fully funded and suitable for his needs.

    Thanks for your excellent advice. Being able to demonstrate that we were “aware” from the outset probably saved us from a lot of hassle later in the process.
    Clive and Sue

    • Angela Sherman 2 years ago

      Thank you for your very kind words, Clive and Sue. You were absolutely right to challenge the questions about property – and I think you’re right that the more informed and confident you are, the more likely assessors are to follow the rules from the start. I’m so sad to hear that your relative has now died. At the same time, I’m glad that the last months of his life were made much easier on account of his fully funded placement.

  11. Carol 2 years ago

    Hello Mike,
    Thank you for your kind words. We are in the process of looking for a Nursing home for my mam but that is proving problematic in itself as all local homes are currently without beds. It has been implied that if we don’t move quickly then mam will be classed as bed blocking. I’m not even sure what the implications of that are but it was made to sound very sinister by the social worker.

    Thanks again

    • Angela Sherman 2 years ago

      Such threats (usually empty) made by some discharge staff and assessors can be awful to experience, but hold firm to what you know to be right, Carol. The link in my comment above should help you.

  12. Steve Harris 2 years ago

    Hi Vicky
    So sorry to hear about the loss of your husband and the worry and stress that you’ve had to endure, this really is a living nightmare for many of us on here and for all the heartwarming stories of success, unfortunately there are still far too many instances of distress, anger and frustration at the situation we find ourselves in. I wish you all the very best for the future and if you do decide to offer to help and support people when you feel ready, I know the experience, knowledge and pain you’ve gone through will be a great help and comfort to the rest of us

  13. Vicky 2 years ago

    If NHS continuing healthcare funding is to be assessed then no point in being fobbed off with 4-6 weeks funding. Either way we are being given wall-to-wall stress, not reasonable or civilised. My husband died last week a few weeks after we won 2nd battle for continuing healthcare funding, but the last few weeks shadowed by stress of comments suggesting funding would be withdrawn next time, if his needs stayed the same – absolute nonsense, but scary. I know it is all about funds, but no excuse for bullying people when they are down. I will definitely help other people in position I found myself in, when I have picked myself up. I am determined to help others, knowing what dreadful stress I was subjected to.

    • Angela Sherman 2 years ago

      I’m so sad to hear that your husband has died, Vicky. I imagine this is a hugely difficult time.

  14. Mike Clark 2 years ago

    Hello Carol

    I am sorry to hear all the unnecessary difficulties,stress and personal challenges all this is causing you and your mam – it is all about finance and not being patient centred. You are right – it does seem like an exam or test, with a ‘pass’ or ‘fail’.

    In the short term, I do believe that when a person is discharged from hospital with health issues the local authority provides a ‘reablement’ package of 4 to 6 weeks funding. This certainly happened with my Dad and Father in Law. The social worker should know about this. Do not accept a discharge from the hospital without this being agreed.

    Also, do you want your Mam to be moved into a Nursing Home? Have you thought about having the care she needs being provided at home?

    I wish you and your Mam the very best and you need to continue to be brave and courageous in battling with the CHC system.


    • Angela Sherman 2 years ago

      Thanks Mike – yes, there is intermediate care, which is funded. This doesn’t mean a person has to start paying at the end of that period, though. The person must be properly assessed for CHC before any means test is carried out.

  15. Carol 2 years ago

    My mam has been in hospital for 5 months after suffering a severe stroke. She “passed” the checklist stage a number of weeks ago but has not had the Multidisciplinary Team (MDT) assessment with the Decision Support Tool (DST). Last week the social worker told me that my mam needs to be moved out of hospital and into a nursing home and when I asked her about the DST and the MDT meeting she said that would be done after 4 to 6 weeks after mam had been in the home. She also said that mam would be charged from day one of her time in the home even though she had passed the initial checklist. The social worker then said she wasn’t sure about finance and we should phone the finance dept. We did phone them and told them that as far as we could see the National Framework stated that a patient could not be charged until after the MDT meeting but they said their area didn’t work under the National Framework- and we would have to pay immediately- could this be correct? We are lost! Thank you.

    • Angela Sherman 2 years ago

      You’ve been given incorrect information, Carol. See the National Framework page 31, paragraph 95: “The time that elapses between the Checklist (or, where no Checklist is used, other notification of potential eligibility) being received by the CCG and the funding decision being made should, in most cases, not exceed 28 days..” Also, your mum should not be charged anything – no matter where she is – until the proper finding decision has been made:

  16. Steve Harris 2 years ago

    That’s brilliant news John! Gives us all inspiration and hope, let’s hope more of us can overcome the system which seems heavily against us, well done!

  17. John Rigby 2 years ago

    My wife has been assessed for NHS Continuing Healthcare and we won !! Many thanks Angela, we read your book two or three times and were so well prepared for the assessment that we found we were better informed than the assessor! Seriously !!
    Bless you
    JR (Sheffield)

    • Angela Sherman 2 years ago

      I’m delighted, John! Well done for persevering. I’m so glad the book helped you through it – it’s always good to have feedback on how it’s working. Make sure you get the funding decision in writing, if you haven’t already. Wishing you well.

  18. Steve Harris 2 years ago

    Hi Angela, Mike, Vicky and everyone on here, thanks very much for your advice and kind words, it really means a lot to have your support. I have contacted a specialist healthcare solicitor and they seem to think I’ve got a very good case so, with my work being so time consuming at the moment, I have decided to let them fight the case for me. Having been inspired by your stories of fighting this yourselves, I’m a bit disappointed with myself that I am not doing it myself but with it being such a legal minefield, I feel it’s in my dad’s best interests to leave it to someone who knows the system better than me. Many thanks again and I will certainly keep you informed of any future developments.
    Many Thanks

    • Angela Sherman 2 years ago

      Yes, let us know how you get on, Steve. Wishing you well.

  19. Steve Harris 2 years ago

    Hi Vicky, thanks very much for your message and your good advice, not sure I would of been able to fight this without this great website and people like you and Mike offering advice and support. I know it’s going to be a hard fight but one that I now feel determined to win for my dad. Like I said before, I have spoken to a solicitor today and he’s very confident that my dad has a great case and his CHC meeting sounded very flawed so considering taking that root but i really admire you for fighting this yourself and that does make me think that maybe I can take them on myself. Thanks once again and congratulations on winning the case twice for your husband, it must feel very satisfying and i’m sure he’s very proud of you and rightly so

    • Angela Sherman 2 years ago

      Thanks for your kind words, Steve.

  20. mike clark 2 years ago

    Hello Steve

    Yes it is a minefield and I have had to learn about all this through experience. I have not used a solicitor though there is certainly CHC case law that refers to ‘flawed assessments’ which it sounds like you may have experienced. A solicitor may be able to offer you legal advice to help you through this. Like you, I have intuitively known that the CHC process used for my Dad and my Father In Law has been incorrect with a plethora of errors and mistakes by Assessors. Care To Be Different is also a great source for sharing good practice.

    Good luck and please keep in touch.

    Best wishes,


    • Angela Sherman 2 years ago

      Thanks very much for your very kind words about Care To Be Different, Mike. I’m glad it’s helpful.

  21. Steve Harris 2 years ago

    Hi Mike
    Thanks very much for your comment. I am determined to fight this for my father even though it seems very daunting! I have spoken to a specialist healthcare solicitor this morning who asked me lots of various questions based on what was part of his CHC and he said that we have a very strong case, which has given me a little bit of hope. Do you think getting a solicitor involved is a good idea seeing as the whole thing seems such a minefield or am I better off pursuing it on my own? Many thanks again for your support

    • Vicky Peattie 2 years ago

      Keep going Steve. You couldn’t do better than use all the info and blogs on this website and buy the e-book and learn all about the ploys the authorities use and how to answer them back . I have gone through the process twice for my husband so far and although it is very distressing, it is great to go to the assessments in the confidence that you know as much, or more than the assessors do, at the meeting. Try and get a friend or another family member to learn all about it too, so there can be two of you supporting each other at any meetings.

      • Angela Sherman 2 years ago

        That’s good advice, Vicky – and thank you for your kind words.

    • Angela Sherman 2 years ago

      Steve – in answer to your questions about using a solicitor, this may help:

  22. Mike Clark 2 years ago

    I have been through the CHC process twice now – once for my 97 year old father and now for my father in law. It is all about funding and the starting point from the Assessors is always ‘that’s social care’. It is not patient centred at all! You know that your father has complex primary health needs and you need to be rigorous, robust and persistent. Reply to every comment and action in writing, keep records and notes and minutes of meetings – dates of ‘phone calls, what Assessors said, find out the name of the head of your local CCG, be directive, use words like ‘duty of care’, remind them of the NHS 6 core values, make complaints, Appeal, and again be persistent. It is a long and laborious job and the NHS close ranks in these cases. You will succeed – don’t give up!! Money is available even through personal health budgets – the CCG’s control the purse strings.

    Good luck and best wishes to you and your Father


    • Angela Sherman 2 years ago

      That’s good advice, Mike. Thanks for your comment.

  23. Steve Harris 2 years ago

    Hi Angela, Just like to start by saying thanks for giving hope to people like me because like many, I am finding it a nightmare trying to get Continuing Healthcare for my nearly 92 year old father. He had a fall and broke his hip 4 months ago and spent 4 weeks in hospital and then transferred to a re-hab facility where he remains at the moment. I was told that in an original report by the hospital that he was positive for funding but he was turned down for funding at a CHC meeting last week, even though at a previous general meeting a month before I was already asked if he had savings and owned his own house, which I now know as being wrong. I could tell by their attitude straight away that they were trying to mark him down, trying to play down his dementia as not being too bad even though he’ll constantly ask me every few minutes where he is, what day it is and generally not being able to take anything in at all. They said it seems worse because he’s very hard of hearing but surely that is all part of his health problems? His mobility has been bad for quite a few years now but is now much worse, only able to get up with lots of help and in lots of pain and can’t really walk at all, even with a walking frame, but again they say he is capable of walking but it’s his dementia that’s stopping him but again that doesn’t solve the problem and how can they mark his dementia down when also saying that’s the cause of his problems? Apart from having a leaky valve in his heart, his general health is quite good. Do you think I have a case for Continuing Healthcare and is it worth me getting a specialist solicitor to help me fight this? Thanks for listening.

  24. Jill 2 years ago

    I thought I was right to employ an advocate to accompany me when a checklist had been organised through the CHC. However I was stunned to be told by the CHC nurse that my advocate would not be able to speak. How many people fall at the first hurdle when told this?
    After much discussion she agreed that they could make comments about the process, but that the staff from the care home would always have the last say as to the marking of the checklist. Another hurdle?.
    I was also advised by the CHC nurse that she never gave an ‘A’ for a domain, because in a few years time when the patient became worse there would not be a letter to represent this. I find this answer quite shocking. .
    She said she would not have time to look at ward notes, something I said that my advocate had studied, she would only look at Lorna on the day, and her annual care plans. She later said she may look at the last months ward notes. When I protested that the care home should surely not have the last say, and that references to earlier ward notes would be appropriate, she disagreed.
    The conversation was painful, there was nothing in the process that led me to believe that my stepmother would have a fair assessment. To be told that if there was disagreement about the Checklist then this would be noted on the form did not satisfy me that the process was fair or equitable.
    I spoke of my concerns that what I had read in the ward notes, not the annual care plans, reflected a very troubled scenario, and that she was at risk. Reading that she had spat at staff, fought staff, choked on food, refused food, medication, that she wandered from her bedroom at night, highlighted some of the risks she presented. This was met by the comment that it was not funding I was after but another care home. Very hurtful.
    I was told the nurse from the care home would be present and the chief care worker that looked after my stepmother, I never knew she had a chief care worker, and she has been at the home three years. The nurse from CHC added at the end of the call that she would bring a colleague too.
    The assessment that I hoped would reflect the complex needs of my stepmother, and bring the funding that I believe she is entitled to after three years of asking for an assessment, better represents a battle ground. This is not what we want for our loved ones at the ends of their life.

    • Angela Sherman 2 years ago

      There’s absolutely no justification for the CHC nurse to tell your advocate that they are not allowed to speak at the meeting. That’s completely wrong. The statement by the CHC nurse about never giving ‘A’ scores is also ludicrous and is not supported by any guidelines. With the Checklist, a much lower amount of evidence is needed than is required for the full multidisciplinary team assessment, Also the Checklist is meant to be a relatively quick process, and it can be carried out by one person – but that person must know the care needs of the person being assessed and must understand Continuing Healthcare and all the guidelines.

  25. Vicky Peattie 2 years ago

    Due for review/reassessment for NHS continuing care next week for my spouse with early onset advanced dementia in nursing home. No surprise that there is no improvement and more deterioration since last year. Last assessment included 2 severe (Cognition and behaviour), 3 high, 3 moderate, 1 NO needs. They still took ages to come to decision with the unpredictability clinching it. I am scared that if they argue toreduce ‘behaviour’ to high due to management at the nursing home, we might fail, though some other categories may have gone up. Lack of recording at the home could prejudice their decision – distinct shyness about mentioning falls or behaviour difficulties. Any advice? Also assessors claim they need 2 hours to go through nursing home notes before we arrive, is this reasonable? The home havent provided us with anything like the amount of notes/ evidence it would take 2 hours to read through, despite emphatic requests for all medical notes .

    • Angela Sherman 2 years ago

      Vicky – if the care home are not properly recording falls and other incidents, and not keeping an accurate record of care needs and interventions, this could be a matter for the Care Quality Commission and/or a safeguarding matter for the local authority to deal with. Regarding the assessment, I can understand how frustrating the lack of accurate records is. This is a vital point to make at the review. Assessors almost always seem to arrive early – and it’s important that you do too. Also, keep in mind that managed needs are still needs:

  26. Jo Clark 2 years ago

    My family attended a CHC Assessment DST Meeting today on behalf of our Dad. We pointed out during the meeting that the NHS Assessors had been biased and had made a decision about my Dad’s health needs as being ‘social care’ before the Assessment process had started three months ago.

    The Assessors at the Meeting today refused to comment and walked out of the meeting today effectively abandoning it and leaving us with no resolution to my Dad’s health needs. Not very professional or patient centred!! Any advice will be greatly received.

    Many thanks – we are distraught!!

    Jo Clark and Sarah Owen

    • Angela Sherman 2 years ago

      That sounds thoroughly unprofessional on the part of the assessors – to say the least. Contact NHS England, highlight what has happened and ask for an Independent Review. Even if an Independent Review isn’t carried out just yet, NHS England may throw it back to the local assessors and instruct them to do things properly.

      • Jo Clark 2 years ago

        Thanks for your reply and support.
        We have been through a CHC Assessment process with my 97 year old father in law before so we are already battle scarred! Though we did secure funding due to the mistakes made in his Assessment too – as well as the fact he has considerable health issues.
        We do not want the errors made by the NHS in the Assessment for our Dad to be ‘swept under the carpet’ in an Independent Review – we feel it has been ‘flawed’ and want the erroneous Assessment to be included as part of the new one so the mistakes are noted in the decision making. We had to do this with my father in laws case.
        Why do NHS Assessors make so many errors in conducting these fundamentally important reviews?

        Jo and Sarah

  27. KEN COAD 3 years ago

    Am failing to get any monies or help towards speech & language therapy (SLT). Seeing top NHS lady locally next week who says SLT won’t help. Need to put someone on the case; my efforts are not succeeding.

  28. brian whitby 3 years ago

    I have taken my complaint to the Ombudsman with regards to my mother’s NHS Continuing Healthcare assessment. I have read Angela’s case history of her mum’s assessment and see that the IRPs decision was that the NHS had previously not assessed her mum properly for CHC and the decision to find her ineligible for funding was illegal.
    Could you please inform me if it was being illegal the reason that the IRP overturned the NHS decision?
    With regards to my mum’s NHS Continuing Healthcare assessment the the MDT made their recommendation not to grant primary care and funding without any medical records and by interviewing a carer that inform them that she didnt know my mum that well. I wasnt given any information about the process therfore wasnt able to participate in the assessment. We were later informed that the signed hand written DST was lost and new DST showing all my mum’s
    medical conditions included.
    Thank you.
    Edwina Wright

    • Angela Sherman 3 years ago

      Hi Edwina – thanks for your comment. Yes, in my own mother’s case, the IRP concluded that the NHS had acted outside the law in denying CHC funding, and they had not taken account of the Coughlan case and the local authority limit. In your mum’s case it sounds as though there has been significant maladministration in the process – not least, asking a carer who didn’t know your mum’s needs to provide ‘evidence’. I’d suggest making a formal complaint about the lost DST and insisting on a repeat assessment, with you fully involved and given enough notice to prepare and attend. For more about the local authority limits, this article may help:

  29. Sandra Healey 3 years ago

    After a long protracted fight in the Court of Protection (COP), the decision was that Mum’s care could be managed in the Community. On the 05/09/15 she left for Leicester to live with sibling who had denied her condition and complained consistently about conditions at the residential home which Mum has resided in for 25 months.

    On Thursday 17/09/15 she slipped off a chair in a tea room, fracturing her right hip and was taken into hospital where a full hip replacement was carried out.

    Can someone tell me the justice in this – sibling arguments, lack of funding and the whole NHS practice?

    • Angela Sherman 3 years ago

      Thanks for your comment, Sandra. I think many people would agree with you about the stress, frustration and injustice of the whole thing.

  30. catherine dixon 3 years ago

    Sister been turned down for nhs continuing care. She has alzheimer’s, double incontinence, needs to be fully hoisted at all times, very little understanding and no conversation, confused at times and only drinks and eats when it is put in front of her, has had district nurse visiting every 2 days more or less since October 2014 as she has had open wounds on both legs and wounds on arms. Recent hospital admission as cut was down to bone. Skin graft was mentioned but came back to care home with 6 stitches in. Still being dressed as of today. Fallen out of bed at least 2 times. Seems so unfair and we feel she meets the priority nhs care needs. Any help please.

  31. Barbara Goldsbrough 3 years ago

    My husband started with dementia About three years ago but has got much worse. He’s beeen in and out homes for respite but the last time he was home it was much worse; he started to be incontinent and up all night. I’m 78yrs my husband is79Yrs. we have no one to turn to for help. I did it all. He has had about 4 strokes, he as emphseama and heart problems and asthma which he as suffererd for years. I can’t look after him now as it’s too much for me but I would like him to go into a home near me that my sister is in. She as had dementia for yrs. I’m trying to get NHS funding but getting turned down time and time again. They say his illness isn’t bad enough. we have no money in the bank but we own our own property. I’m at my wits end. I don’t get much sleep and with all this stress it’s not helping.nhope someone can advise me what to do.

    • Angela Sherman 3 years ago

      You may need some one-to-one help with this, Barbara. If you need some contact details for a specialist CHC adviser, feel free to complete the contact form at the bottom of the page.

  32. RICHARD BENFORD 4 years ago

    I won fully funded continuing NHS care for both parents who were in care homes after an eight month fight back in 2005. This I achieved without any legal assistance. Fortunately I was a care manager , director & consultant for thirty years so knew the system. Which is just as well because at every turn my parents were turned down for the funding by dubious methods. Currently around 60,000 people from as far back as 2004 are trying to retrieve NHS fully funded care. Solicitors are having a field day with it all. To win without any legal assistance at all you really need to have someone with a lot of care based knowledge behind them.

  33. Dolores Kirk 4 years ago

    Not quite sure where to go. My dad is 90 in a care home with Alzheimer’s/dementia applied for continuing care after six months received letter today that he is not . The NHS have given 2 severe markers but he still failed to qualify. Can anyone help please.

  34. Jennie Sherlock-Williams 5 years ago

    Thank you for giving me hope!
    watching your video about successfully obtaining fund for your parents.I have been battling with Bucks PCT for 4 years.My mothers case sounds very similar to the struggle that you had.I have been through all the appeal processes, and have come to the end end of all the processes with the help of an adviser from “Age UK “,but to no avail.I still strongly feel that my mother was eligible for continuing care.
    My Mother died 4 years ago and I not sure how to proceed.Can you advise
    Many thanks Jennie

    • Angela 5 years ago

      Hi Jennie – sorry for the late reply. I’m glad the video helped.

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