Should I use a solicitor for NHS Continuing Healthcare? …5 tips

Should I use a solicitor for NHS Continuing Healthcare? …5 tips

Using a solicitor for NHS Continuing HealthcareMany people consider using a solicitor for NHS Continuing Healthcare battles

…because going through the Continuing Healthcare application and appeal process can be exhausting.

So what are the relative merits of using a solicitor vs. doing it yourself?

Having someone take the load off your shoulders and fight your corner on your behalf can be a huge relief. Solicitors can provide a very valuable service in this respect. Your decision whether or not to instruct one may depend on what stage you’re at in the funding application process.

If you do need a solicitor for NHS Continuing Healthcare, follow the link at the bottom of the page.

Solicitors work in different ways: Some solicitors can help you through the process before the funding decision has been made. Others can help you appeal a funding decision afterwards – and many do that on a no-win-no-fee basis if there are care fees that can potentially be reclaimed. This can be a good option if you don’t have the energy to pursue it yourself, and you may be happy to pay the fees are involved to save you that stress and hassle.

Having an adviser or solicitor for NHS Continuing Healthcare assessments can help ‘encourage’ the assessors to stick to the assessment guidelines. Having someone in a legal capacity present, even if you do most of the talking, shows the assessors how serious you are – and that you’re unlikely to accept any nonsense.

5 things to remember if you do decide to instruct an adviser or solicitor for NHS Continuing Healthcare:

  1. Make sure they are specialists and understand NHS Continuing Healthcare inside out.
  2. Make sure also that they have an in-depth understanding not only of the established funding assessment guidelines (National Framework, Checklist, Decision Support Tool, etc – plus the Fast Track assessment process), but also the tactics the health and social care authorities may use to try to avoid providing funding.
  3. It’s a good idea to still attend funding assessments yourself even if you are using a solicitor. You may more easily pick up on inaccuracies and misstatements of fact – plus any errors in the care home notes.
  4. A solicitor can be a welcome sounding board when things happen along the way that you need a legal view on, and it’s often just good to know there’s someone on your side. It’s also good when that person is not afraid to ruffle a few feathers with the health and social care authorities to give you some extra clout.
  5. Only you will have the raw emotion that goes hand in hand with fighting for someone you love, and this can be a powerful thing. In addition (and similar to point 3 above), you will notice if your relative’s care needs are being interpreted incorrectly by assessors.  This is a important reason for staying closely involved in the process at all times, and supporting the work your solicitor is doing as much as possible.

How to access one-to-one help for your individual case. We’ve recently got to know Farley Dwek Solicitors, and we like their approach. You can contact them for an initial chat about your case – free of charge. Read more here.


  1. Anita 11 months ago

    Hi I have various health needs and difficulties I completed a checklist through a social worker I then had a full assessment yesterday the assessor went on to say some of my medication and daily supplements would be funded through chc , at the end of the assessment I was told I didn’t meet the checklist tool because I needed to be in a care home to qualify and she handed me a letter , when I read the letter after she left the assessor had ticked the box to say I qualify for chc ,.
    So in theory I was told verbally I didn’t qualify but on paper I do ! Can someone tell me how I stand please .

  2. Andrew 1 year ago

    From my experience, the whole process we have to go through to get funding, is a bureaucratic nightmare that can run for years. It is open to widespread abuse in order to deprive the sick and elderly of funding. The CCG just breaks all the rules shamelessly and instead of using professional judgement to come to a fair result, they just fail to justify their wrong unsubstantiated decisions by claiming simply claiming they used used professional judgement to get the result, as this is difficult for a layman to argue against.

  3. Doreen Johnson 1 year ago

    Initial check list done after several cancellations by LA letter came for PRE MDTmeeting.During phone call I asked for the format of meeting To be told the Needs Portrayal Document was all the would be discussed.I was informed that a repeat Check list had been done and also the MDT meeting had taken place.All without our knowledge. This I am sure does not comply with the National Guidelines and The Law.

  4. Andrew Michael 2 years ago

    My mother is approaching 85 years old and has severe dementia diagnosed 6 years ago and is now severe. She is very fragile and vulnerable. She is bed bound, can’t walk and can’t communicate. She can’t eat or drink on her own, and even assisted it is a big challenge. I don’t think she has long to live, and a month ago the Care home were saying she was nearing end of life. She clearly qualifies for both NHS Continuing Healthcare and NHS Funded Nursing Care and was eligible many months ago and maybe even years. The Care home didn’t bother to assess for either. I have been fighting since Feb 3rd to get past the first step, i.e. the Checklist. I have been strung along and deceived by both the Care Home and the CCG. On Feb 4th I was told by CCG that family cannot request a Checklist be completed. They repeated that again in May. After fighting with Care Home for months, on April 18th the manager made a flawed attempt at completing a Checklist – though she marked 2 areas as ‘A’ and 5 areas as ‘B’, she concluded at the end that no full assessment was required. The form then went into a black hole and CCG deny ever receiving it. I then got a Social Worker in charge of a Safeguarding investigation (for a serious incident on my mother at the home) to complete a Checklist. Again CCG are not responding to this second attempt to say they have received the Checklist. It just feel like these are deliberate delay tactics and sabotage of the process, before it can even get going, until my mother finally dies.

    • Andy 1 year ago

      On the subject of hiring a solicitor, do solicitors only handle the CHC process, or does anyone actually take the CCG to court over their unlawful practices to prevent funding?

      • Stephen Reeve 10 months ago

        Only just came across your question – did you get an answer ? … I would dearly love to take CCG to court.

        • Andy 10 months ago

          You can take them to court, or using the correct words for this, to Judicial review. However from what I am hearing (may be wrong), you are expected to exhaust the appeals process first. The other significant hurdle is the cost. You need to be very confident of winning otherwise you risk having to pay the CCGs costs too. If it was an easy option, the CCGs wouldn’t behave the way they do. You could try looking up the lawyers that represented Pamela Coughlan.

  5. Conrad 2 years ago

    Hi Lynne,

    If your Mother has not had an assessment you could do one of two things:
    1. Ask the Home to do a “Health Needs Assessment (HNA)” that can lead to a full Multidisciplinary Team (MDT) Assessment (which happened in the case of my father)
    2. Write a letter to your local CCG and ask them to do a Checklist Assessment – they never volunteer.
    3. The Checklist Assessment should lead on to a Full MDT Assessment – they will avoid going to a full assessment so you will have to be there to argue the case – take a friend with you for support.

    • Lynne 2 years ago

      Conrad, thank you for the advice. The residential home have told us on 3 occasions to find another home because of her aggressive behaviour but have not given us a final notice. They have put her on Risperidone against our wishes. The manager has also told us that, in her opinion she doesn’t qualify. My brother agrees they don’t want to lose the money she pays per week. She also wanted to put her on a third dose which her Psychiatrist denied. She’s fallen twice in the last month and has lost a lot of mobility. She is, however, less aggressive. They want her to be in a vegetative state and I think there’s a conflict of interest, so no I don’t think the residential home would help. I’ve asked her GP who have referred me back to her Mental Health Nurse and am about to contact the head of the services for the NHS in our area.

  6. Lynne 2 years ago

    My mother was admitted to a care home six months ago because we couldn’t handle her aggressive behaviour. She was also at risk of falls and wandering. She hallucinates and has episodes of paranoia. She is verbally and physically aggressive to her family and shouts abuse at the neighbours. she pulls furniture apart and has cut through electric wires. Social Services became involved and she was allocated carers. My mother attacked one and threw her out of the house. Social Services and a Community Psychiatric Nurse went to the house when we were in work, with a carer, and were thinking of sectioning her. It didn’t happen and an assessment was done by Social Services who were only interested in us selling her house and we were forced to put her in a residential home. We didn’t want to comply but they threatened to revoke our Power of Attorney. Six months later the residential home have said they cannot manage her and have asked us to find another home but keep changing their mind. Other homes have stated they won’t take her because of her behavior. She has been hospitalised twice and became aggressive to the nurses and pulled out her drip. I had to go back to the hospital to give her sedation. An assessment was denied, at this time, on the grounds that the residential home accepted her back. Now they say they cannot manage her and want her to leave only for the Mental Health Team to prescribe an anti psychotic drug (mother still hallucinating wandering at night and pulling things apart). The care home has asked for an increase in the dose which we have researched and is not recommended by the BMC. They now say her care is managed. We have not been informed or had a say in any of this. I have sent a formal letter informing them of our concerns and asking for an assessment to her GP, Social Worker and Local Health Board. All denied. What more can I do except find a solicitor? My mother has Lewy Body Dementia, Vasuclar Dementia, Stroke, High BP and arthritis.

    • Conrad 2 years ago


      continued …

      Your mother’s medication regime will no doubt be complex due to the number of drugs and complications regarding administering them – along with side effects which may react with other drugs that she is taking.

      Her cognition will need assessing – so results of Pychiatric tests such as the Mini Mental State Examination (MMSE) will prove useful as there is a criteria for Cognition in the DST Assessment. DST stands for Decision Support Tool.

      Also sounds like your mother’s mobility is “High” needs as she has a risk of falls.

      By the sounds of it – your mother’s behaviour would qualify for “Priority” needs – an automatic entitlement to full NHS Continuing Healthcare (CHC) funding – in a fair world.
      DST Assessment criteria for Behaviour:
      “‘Challenging’ behaviour of a severity and/or frequency and/or unpredictability that presents an immediate and serious risk to self, others or property. The risks are so serious that they require access to an immediate and skilled response at all times for safe care.”

      Sounds like you’ve had a very difficult time with your mother’s illness. I experienced a similar horrendous time with my father, who also had Dementia – along with the behaviour problems as well as other diagnosed health problems. due to his behaviour, he was admitted to an “Award Winning” Nursing Home “Specialising” in patients with dementia – for a short period of respite. Within 30 minutes – we had received a phone call saying that he had a knife and was threatening staff and damaging a door (in an attempt to escape) – they said if we didn’t pick him up they’d have to call the Police. We did eventually find another Home that did know how to care for him.

      Summary: A letter to your CCG requesting a Checklist should lead towards a full NHS CHC Assessment
      Good Luck.

    • Conrad 2 years ago

      This might help …

      From this website:
      “1. Being told your care needs don’t warrant a Checklist assessment and/or that you can’t have one and/or and that you won’t be eligible.

      Any individual can ask for a Checklist assessment and the person asked should then arrange it. If you’re told any one of the above things, it implies that the person telling you has already made up their mind about your care needs before the assessment has even taken place! The whole point of the Checklist is to see if there’s any chance you might need NHS Continuing Healthcare funding. (Note: ‘might need’ as opposed to ‘definitely will need’).”

      • Lynne 2 years ago

        Conrad… Thank you for replying. My mother would certainly not score high in the Cognitive test MMSE. She thinks she owns the residential home she’s in and has no recollection of time or place. Sometimes she doesn’t remember who I am and has no recollection of her grandchildren. Risperidone has been denied by her psychiatrist as a third nightly dose and her mental health nurse has stated they are taking her off it completely in light of my letter. Thank you for the link I am now sending a letter to CCG with a list of the Decision Support Tool areas which I think she qualifies. All they tell me is that she would only be awarded it if she were sectioned and then qualified for section 117 of the Mental Health Act.

  7. Neeta Mehta 3 years ago

    My son has been in the hospital for the past 5 months, waiting to be discharged with appropriate care. The hospital recommended double handed care. The CCG is asking hospital to arrange an care home to conduct an assessment but my son wishes to remain at home. He is 28 and has a full mental capacity. How do I deal with the situation, can anyone help?

    • Lucy |B 3 years ago

      Hello My name is Lucy, I look after my husband at home and I get paid from social services under special circumstances. My husband has severe ms, unable to move, registered blind, if your son want’s to remain home then under the Care Act he has to have his wishes listened to, the same as you, if you want to have him home then social services have a duty of care to seek help he needs. If you need any more help just let me know through this site. Good luck.

  8. Martin Johnson 3 years ago

    We are now entering our 6th year of a retrospective claim for my mother who died in 2011. We had not heard of NHS Continuing Healthcare (CHC) until nearly two years after her death when I saw a TV program with Martin Lewis talking about the number of people who had been denied CHC.
    I was at the time in a position of being able to devote huge amounts of time researching CHC and how best to claim. I thought we had a very strong case and set about claiming. Without boring you with the following years of lack of communication by the CCG, we finally ended up with a Needs Portrayal Document (NPD) – all 59 pages of medical jargon and abbreviations. We took advice from a specialist in CHC who found many areas where the domains had been underscored and other areas ignored. We sent a 16 page letter contesting the NPD and have yet to recieve any responce from the CCG. Following this meeting there was a Multidisciplinary Team (MDT) meeting – at least I think there was as we were not permitted to attend.
    Needless too say we were denied CHC and were told to appeal to NHS England which we did immediately. We were asked what happened at the Local Resolution Meeting (LRM)? The what? we asked. Following day we were invited to attend such a meeting which was a complete waste of time. All the Clinical Lead would say when questioned about any legal aspect was “No comment”.
    The Independent Review Panel (IRP) hearing which followed was not a great deal of help. They offered us the opportunity of repeating the LRM, but we had lost all confidence in the CCG giving us a fair hearing.
    The Ombudsman followed and they supported the CCG / IRP decision not to award CHC.
    How I wish now that we had got legal representation from the start – despite everyone saying you wont need it – YOU DO!
    I have found a solicitor whose comment when he read my notes was “Horrendous” and “I have to describe their findings as ‘nebulous.’ They make general, sweeping statements but do not give them any substance”. and “To let it go at this stage would be tragic.” He is arranging for a Barrister on a no win no fee basis to advise on the matter to go forward to a Judicial Review.
    I would be interested to learn if anyone has experienced a Judicial Review and tell me what to expect.

    • Trena Smith 3 years ago

      Your story replicates my story completely. I’m now at the stage of going to the ombudsman but by the sound of your situation, that’s not going to be very successful. I’d be interested to find out if a barrister or solicitor can sort it out for you?

      • Martin Johnson 3 years ago

        Trina we applied for a Judicial Review in November 17 and still await a reply. I chased the court up last week to be told there is a massive backlog of Judicial Review requests. They are awaiting a judge to review the case. They did not give any indication of whether my request would be granted.

    • Meggie 3 years ago

      Hi Martin, Hope you will update this site when you do finally hear. We were denied assessment many times and Dad died last August. I am in the middle of formal complaints to four separate bodies (2 hospitals, the CCG and the Local Authority) and hope eventually to go to the Ombudsman. I don’t, if I’m honest, have much faith in the Ombudsman since learning the Ombudsman uses nurse assessors just like the CCGs and throughout the time dad was ill we didn’t meet a single nurse who could grasp the complexity of his physical and mental health needs, let alone understood NHS Continuing Healthcare or the law.
      I feel only a court would apply the law but there doesn’t seem to be an easy way to go to court. I would like to know how you get on with judicial review and wish you luck.

      • Martin Johnson 3 years ago

        We are still awaiting a response from the courts. I rang them last month and they told me they had a huge backlog of requests for Judicial Reviews and were unable to tell me when i would hear. It’s now 4 months since we requested the review – 7 years since my mother passed away and nearly 6 years since our initial claim. I’m determined not to give up!!

    • David B 1 year ago

      Hi Martin. Could I ask which firm of solicitors you used, please? I can empathise with your situation — very similar to my own — and am now considering getting an experienced solicitor involved. Thanks in advance. David

      • Care to be Different 1 year ago
        • Martin Johnson 1 year ago

          We only got in touch with the guy after the failed attempt with the Ombudsman. He was to recommend a barrister to take us on if we got s favourable result from the judicial review- we didn’t. Where are you located? The are a number of firms around the country who specialise in CHC. As we didn’t use any solicitor prior to IRP I can’t recommend anyone – simply wish I had!!

          • David B 1 year ago

            Hi Martin. I’m in Worcester. My story is equally as tortuous as yours, I’m afraid. In a nutshell, having been awarded 2-years’-worth of CHC retrospectively for my mother’s first period of claim, following a local appeal, she was turned down for the second 3-year-period, leading up to her death. Following that, the CCG decided to appeal our successful first period, which is sure to go to appeal on 4th December. It’s taken years, like your mother’s case, and I’m running out of energy and emotional strength to see it through myself. So, I’d like to get a solicitor to help. I’m sure there have been loads of errors, inconsistencies and failings by the CCG, and I need an expert to assess it all and fight our corner prior to and during the appeal in 2 months time. So, I take it your struggle was unsuccessful in the end? David

  9. Trevor 3 years ago

    Can someone please help ? My mother in law has been in a care home for 5yrs . She is double incontinent has dysphagia and is given all food liquids and medication through a tube in her stomach I am told she has virtually no cognitive reaction to anything
    She has possible other problems , my wife finds it very difficult to talk about it.We have been refused full funding as we have been told she needs social care not medical we have appealed twice but lost. I just would like someone to tell me something I can show my wife so she can get the help we need.
    The cost so far to the family is someone laying in a bed who doesn’t recognise you at all never changing or reacting. It is immoral the government / council can behave like this.
    I saw another post saying his relative was costing £4000 pm. It is strange how costs are so similar everywhere that is what our costs are so we have spent £250,000 approx and we are now having to sell her house.
    Many thanks for any reply.

    • Stephen Holling 1 year ago

      The former primeminister Teresa may said that if there government get in that they would look into the funding for the care homes and that the persons family would be able to keep the first £150000 for the funding before the continuous healthcare but once the torrie government got in this was never mentioned again just another lie. My mam as Alzheimer’s and when her husband died me and my sister tried to look after my mam but it was impossible she needed 24 hour care and the social team was all over it also the memory team they decided that mam was to go into a care home and that we had to sell my mams house to fun this My mam worked all her life to pay for our home and used to tell me and my sister that when anything ever happened to her the house was left in her will to us too. So when we sold mams home the government had all of it except for £24000 but then we had to pay top up so now there is just enough now for her funeral and not a lot left after all that. I got a company off of the internet called Compass continue heath care that would put there law people onto it to prove that it was a medical condition and not a health condition so we paid them £2900 and they took about two year to tell us that they needed another £3000 to take the national health to court and if they win the government would have to pay for mums care they also told us that all the money we had paid for mams care we would get back. That was just a lie from this company they said that they would not have told us we would get our money back and that we were mistaken. Just to say that we would not have paid them the money in the first place if there was no change of us getting our money back. This company was working out of Cornwall area and they used to email me to do the work for them collect paperwork from the nursing home and send them it cos it was too far for them to travel the nursing home got all the paperwork ready for them but told us they had to come and collect it that is why it took two years for them to tell us we could win if we went to court with it but the company wanted an extra £3000 Anyway I do think it would be best to use a solicitor from the beginning and not go through what me and my sister have been through. Sorry about any spelling mistakes. Yours a skint man

  10. Karon Morrison 4 years ago

    Would like some advice regarding brother. He had a brain tumour when he was 16 years old (48 years ago) which resulted in many ongoing medical problems and including visual impairment. He was diagnosed as having organic brain syndrome early last year and in September he suffered a subdural hematoma, which resulted in his condition worsening and being assessed for mental capacity which he does not have. He has had previous TIA’s. Since his subdural hematoma (September 2016 to Dec 2016) he has had another two hospital admissions and three other visits to A & E (one of these was because he got up from his bed, missing the telecare pad, in place, and pulled the television on himself. Because he now lives in residential care rather than nursing I have had to be present, many of these calls are in the middle of the night. He has lost so much weight in a matter of weeks his trousers keep falling down.

    Before he left hospital in December 2016 the Multidisciplinary Team (MDT), myself and my daughter, who is a physiotherapist, went through the Continuing Healthcare (CHC) Checklist and a request for an assessment was actioned by the Social Worker.

    As far as I am aware, an assessment has not been done as I have not been invited to attend, only for the fact that I asked the Social Worker if it had, I found out that it had been refused. I have asked the Manager at the home to action another criteria and raise the request for another assessment.

    My brother clearly has complex medical issues for which medication needs administering morning and evening, is at risk of falls so needs assistance, has numerous UTI’s, is incontinent, blind and other medical issues, why would be be refused CHC and how can I secure this funding for him?

  11. Toni Purcell 4 years ago

    My mother has recently had a continuing care assessment carried out resulting in the necessity for a Decision Support Tool (DST) to be done in the coming weeks. Since the initial assessment we have received a call from the hospital inviting us back to go over a few things in the first report because they believe my mum’s medical condition has changed. Are they allowed to redo the initial assessment again?

  12. Fred Mullin 4 years ago

    Can an appeal for Continuing Healthcare (CHC) be rejected because the next of kin (wife) has neither a Power of Attorney or Deputyship? My brother in law had a stroke and doesn’t now have mental capacity and Deputyship will cost almost £2,700 (financial plus health needs). Is there any precedent establishing that an appeal can be heard without Deputyship? Surely the same situation would arise in the case of, say, a car accident and I understand CHC appeals may have been heard without Deputyship in such circumstances?

  13. SJ 4 years ago

    I am at a critical stage of the Continuing Healthcare (CHC) process – a recent Decision Support Tool (DST) wasn’t carried out correctly with serious flaws in the process so far – Dad is still in hospital and further assessments have now been carried out since the DST (which was rushed and panel rubber-stamped negative outcome within a week without factoring in all the prior evidence and my representations, etc, just before xmas shut down – so haven’t had chance to object, etc). DST only considered a few days’ worth of evidence from his time in this local hospital, ignoring evidence from neurological hospital where he had been week before and more than 3 months’ of evidence from interim placement at care home which couldn’t cope and refused to have him back because of his care needs. Now consultant has said halt discharge as Dad is not fit for medical discharge where as he was previously presumably, while further prognosis is needed – a referral has confirmed he is at high risk of feeding with dysphagia. Having continuous problems with unhelpful social services throughout, not evaluating if really social care needs as opposed to health needs etc – are keen to discharge him to any old interim placement which has a vacancy (there aren’t any at moment) without involving me or giving a choice or considering intermediate options, even though I am Lasting Power of Attorney (LPA). Discharge planning not being transparent – not telling me or showing Section 2 or 5 assessment notices previously or any of the assessment evidence used by assessor for DST, and I didn’t get to see any reports from this admission for myself (no proper discussion at DST, more a case of going through domains which seemed to have already been decided before meeting) – so if a DST reassessment is allowed (I will be appealing previous DST decision too). I feel I need help with a knowledgeable advocate in any Multidisciplinary Team (MDT) meeting. But it is difficult to find someone competent, knowledgeable and who is close enough to cover my area. I know it’s been explained before this website doesn’t usually give recommendations, but I am getting desperate for help, I don’t have much time and am already snowed under with all my other responsibilities; being single parent, work pressures, house moving and more, so need someone who can actually help and reduce the amount of legwork I am currently having to do alone. If someone can point me in right direction it would be a great help!

  14. Robert Brewer 4 years ago

    Thanks Mike we are determined to pursue this through to a satisfactory conclusion.

  15. Mike Clark 4 years ago

    Both my father and father in law have 24/7 Live In Care to manage their health needs. I have been through the CHC process three times now and eventually gained full CHC funding and Shared Care funding for them both. It is a long and difficult battle. In both cases, I emphasised that Dad and father in law’s condition would be much worse without the professional care of the dedicated Live In Nurse/Carer using the principle ‘ a well managed need is still a need’. The NHS Assessors really don’t get it – despite normally being qualified nurses. It is incredibly difficult to get them to think ‘outside the box’ and imagine what an individuals health would be like without this care in place. They are determined to follow ‘the framework’ at all costs and tend to review the patient in real time and what they see when they conduct the assessment. What you will need to do I think is to continue to be resolute and to link the complexity and intensity of your mother in laws health needs and show how the unpredictability and intensity of these needs are being well managed by 24/7 care – describing how the carers ‘anticipate’ these through close attention and dedicated care. It is a long process and time consuming, frustrating and stressful process but don’t give up!

  16. Ali Fox 4 years ago

    Good evening, we are in the process of applying for my mother-in-law to receive Continuing Care Funding. This has been going on for a long time and we have just recently found out that the checklist meeting has already taken place without us being present. We have requested that this is carried out again (with the help of the nursing home). My question is – on the Checklist notes it states under para 20. ‘Where the extent of a need may appear to be less because good care and treatment is reducing the effect of a condition, the need should be recorded in the Checklist as if that care and treatment was not being provided’. As we were not present at the meeting, the nursing home could only give notes on the present conditions which are obviously ‘with care.’ My mother-in-law was previously in hospital and before that at home in a much worse state that she is now due to lack of care. She was not offered the checklist in the hospital and we only found out about this funding by chance. When we attend the meeting to revise the checklist should we be pointing out what her condition is like without good quality 24/7 care?

    • Angela Sherman 4 years ago

      Ali – yes, it should always be about the underlying needs, as if no care were in place. This is made clear in the National Framework guidance. Even if the care notes show daily needs with care in place, the assessors must take account of what those needs would be like without that care. This may help regarding managed needs vs. underlying needs:

  17. Robert Brewer 4 years ago

    My sister and I both live in Canada. 2 years ago I had my mother over for 6 months with the plan to get her to stay with me permanently. My mother insisted that she wanted to go home so reluctantly we accompanied her home where we approached Social Services to have home help for my mother as she was in early stages of dementia. It was not long after that she took a couple of falls, the last one resulting in a bad shoulder injury requiring surgery. She was held for some time in hospital as she was unable to use her arm and it was then determined that a care home would be required as her dementia increased resulting in aggressive behaviour in the hospital. She has been in the care home for 2 years with funding by the NHS, during which time, she has lost the ability to walk, dress or feed herself. Now, without notification to us, another assessment was carried out, resulting in the NHS funding being removed. I did visit my mother earlier this year but she did not recognise me and did not want to talk to me. My daughter, who is an Occupational Therapist, visited my mother as she lives in the UK and confirms that the report is completely deficient. As I understand it the NHS must inform you before assessment and allow you to appoint a representative if you cannot be there. To me if they don’t do this then the assessment is invalid. Your thoughts on this please.

  18. Paul Dennis 4 years ago

    Good evening, please can you recommend a solicitor to help our case for Continuing Healthcare funding please. It’s for my dad who the PPA logopenic variant of dementia. We have been going through the process for over 4 years.

    • Angela Sherman 4 years ago

      Paul – we don’t recommend any one firm of solicitors over another, and the best thing to do is actually to Google “continuing healthcare solicitor” or “continuing healthcare adviser”. Make sure that whoever you speak to is a specialist in Continuing Healthcare and not just someone who ‘knows a bit’ about care fees. Wishing you well.

  19. Alison Gibbon 4 years ago

    My husband has advanced MS with complex care needs. He has received NHS funding for care at home for many years and 2 Nursing Agencies were employed to provide a registered nurse and carer each morning for 2 hours 7 days a week. I provide all other care, but was also allowed 11 hrs to use for sitting time (to give me a break as he is not left alone) and 1 hr for feeding him at a Day Centre.
    As time went on it became hard to find nurses so the last agency sent very good carers who could meet this need in part. I am regarded as a carer with basic nursing skills iro bowel management – including anal irrigation, catheter care (including changing his supra-pubic catheter, skin and wound management. In June the agency ceased care stating it could not maintain the number of carers we had since it was complex.
    At very short notice I managed to find a Care Agency, much cheaper than the previous one as the carers are not up to the same standard. Their insurance does not allow them to do the full range of duties as before and I have to be the lead carer.
    Continuing Care said an NHS budget was the answer for me (I had been asking for this for years and it was ignored).
    However nearly 3 months on the extra tasks have fallen to me and the process for the budget is slow. I can employ the old carers I had but the pay is only £8 per hour when their skills (close to a registered nurse) meant they had been getting £15 an hour. I am not supposed to use other carers that I pay, but to cope I do or I would be ill.
    I feel very stuck – it is the NHS who should be meeting my husband’s needs but they rely on me. Their answer was emergency respite care in a home which has proven dangerous previously in similar homes.
    I found a Nursing Agency who had vacancies but was told the minimum care duty was 4 hrs they had for a nurse was more than the 2 hrs Continuing Care had assessed for. My care is now virtually 24 hrs and the only way I can proceed is for it to be reviewed with the implication that the award might then stop. A no win. We both have lump sum pensions so fall outside the scope for Local Authority Support although our income is not that high.
    How can I enforce adequate care at home from the NHS without them relying on me? If he is assessed for 2hrs a day and they can only find a minimum of 4 hrs then they should use them until a solution is found?

    • Angela Sherman 4 years ago

      Alison – that sounds very stressful, to say the least. The NHS should most certainly be providing all the care your husband needs, and they should not automatically assume you will be there 100% of the time. Write an urgent letter suggest to them that this is wilful neglect and puts your husband at risk. Use the phrase ‘carer breakdown’.

  20. Jean wright 4 years ago

    I have court of protection for my father who is 97 and in a care home. Trying to get CHC has been a real struggle. He has been in 3 care homes since the 5th November 2014, and now has one to one for 6hours a day. He is high risk falls, unpredictable behaviour. In February this year he was sent into hospital by the previous care home and when he was ready to be discharged the home refused to have him back. I should say at this point Dad is self funding. I had to look around again for a suitable care home for him. The hospital at first said he needed an EMI unit but I couldn’t find anywhere that had a place for him, so they downgraded him to a nursing home which I found a nice for him.
    When they assessed him 4weeks after his discharge for CHC they said he didn’t screen in. Bear in mind I been trying to a CHC assessment done from Christmas but I was kept being given excuses why it couldn’t be done. A few weeks after the initial CHC was done and he didn’t screen in, I asked for it to be done again. This time I was told they would go straight to the DST (by this time I think they had got fed up of me). I did ask for a copy of the CHC but I never got one. Anyway on the 26 April they did the DST and was told they would not reccomend him for funding even though he scored a severe on cognition and a high on behaviour which I said he was in between a severe and a priority. I then told them I was going to commission a professional to take up the case. They came back with they would not speak to any one other than me because of data protection. Now whether this disturbed them or not I then got a phone call to say they were funding Dad for up to 3 months then there was to be a review. Then I got a letter say the review would be 6weeks from the 26th April. I now have a date for the 23rd of June for the review. Is it worth my while to take a professional with me as they have said they will not speak to them? Dad condition has really deteriorated he has lost a lot of weight was in hospital for the day after a really bad fall where he cut open his forehead. Behaviour is very bad without the one to one. The care home couldn’t handle him. And now they say he too frail for an EMI unit, he would at risk. I know that my Dad’s care is now far beyond just mere social care but how do I put this across to people.

    • Angela Sherman 4 years ago

      Sounds like unacceptable delays and obstruction by the Continuing Healthcare people, Jean. You are perfectly entitled to have someone helping you through this and you’re entitled to take someone with you to assessments. This is made very clear in the National Framework and elsewhere. The CHC people will still be communicating with you, but that doesn’t stop you having an advocate, adviser or solicitor yourself – to support you. Also, go through the National Framework and the Decision Support Tool in detail – plus the assessment notes (you are entitled to a copy) – and list/summarise everything that has been done incorrectly.

  21. Mike Clark 4 years ago

    I agree about the positive aspects of using a CHC specialist solicitor. My experiences though is that the NHS don’t like it – though not a reason itself for not using one – and can also bring out their legal team from nowhere too to fight the case (certainly this happens with Local Councils and Social Care). This then becomes very expensive, more stressful and time consuming. If you have the energy and desire to keep this going, you will pick up the knowledge and experience your self, and has been already stated, you know your family member the best.

    • Angela Sherman 4 years ago

      Thanks for your comment, Mike.

  22. Lynda Lester 4 years ago

    Help required to appeal against CHC funding being stopped

  23. Richard Terrell 5 years ago

    Concerning NHS CHC, the authorities have – and are still – refusing to complete assessment as is in law required, fragmenting procedure and in last case refusing on grounds of not ill enough. I had to find it out myself and they never told me, then even denied it was applicable, including mental health. I now have firm evidence that the authority is relentless in doing a financial assessment, regardless. The authority uses agency care throughout. Some carers cannot make a bed or even understand how to make a cup of tea, have no idea of the complexity of their clients needs. The so called Care Plan is a worksheet for the Carers coming in.
    There is no Care Plan or Carer’s Assessment completed, as is required in law. Departments will not co-ordinate. I have even had to get food from a local cafe. The Carers support, councillors including chief Councillor, and MP will not answer my plea of this endless insanity.
    There is something chronic, as it is evident it is assumed Financial Assessment for Social Care is the order, and if you are dying shortly you might quality for NHS CHC otherwise everyone is to be automatically disregarded.
    This is a national scandal that clearly needs sorting out. Carers should have an appropriate standard to work to regardless of who is paying for care.

    • Angela Sherman 5 years ago

      Many families would I’m sure agree with you, Richard, about what goes on in the care funding system being a national scandal. In your situation it sounds as though this may also be a safeguarding case for the local authority to investigate, especially if there are no proper care plans. In addition, if no Continuing Healthcare assessment has taken place, this may help:

    • Pandora13 4 years ago

      I have very similar dodging tactics like this with my father. He was discharged from hospital with a positive checklist and placed in a nursing home. During the following weeks, instead of following through with the DST and to apply for funding he was instead underscored by lesser, so called professionals. I queried the greatly differing results to those of the hospitals and refused to sign the underscored checklist. i’e he was initially given 4 ‘A’ scores and this was underscored to just 1 with no change in his needs.I asked to see his Nursing home’s notes which weren’t available, blood tests..(Again none available) and an explanation of how they arrived at this decision..I’m still waiting! I have complained but everyone passes the buck and the top person from social services who really shouldn’t be involved, denied I even attended the meeting!. Scandalous and incompetent just doesn’t cut it. What next?

  24. Lesley 5 years ago

    Hi. I am about to instruct a private company to undertake CHC – it will cost over £1000 – is there any advice please?

    • Angela Sherman 5 years ago

      It depends what they’re going to do, Lesley. If they’re taking on the whole case for you, then £1000 actually seems very little because it can take a lot of time. It’s always worth getting some comparable quotes – but make sure you know exactly what they are quoting for.

  25. Jan Allen 5 years ago

    We’ve now received notice that my MIL is no longer eligible for NHS funding. (See my earlier posting about her assessment ) . We are certainly going to appeal.
    Over 7 years ago we started appealing against an earlier decision and eventually 4 plus years ago were successful in achieving a retrospective payment. But it appears that now the CCG are determined to turn it all around. We are due to go to an IRP in a couple of weeks to consider another retrospective period. We are also providing evidence with respect to the enforced sale of her home to find her care in 2005 at a time which was decided retrospectively that she was indeed eligible for CHC funding .
    The whole thing is a mess as the CCG are tactically denying, defending and delaying. We will not be giving in or be worn down by all of this . We continue to provide a voice for someone unable to speak, coherently, for herself. We are also not going to employ a solicitor . Meanwhile the Ombudsman is waiting for the whole process to go through local resolution (to date 7 and 5 months of it ) before being prepared to review the CCG’s practice .
    Meanwhile she has had a stage 3 pressure ulce r for over 6 months which apparently does not merit a Severe in the domain.

    • Angela Sherman 5 years ago

      I can empathise with your experience of the delays and denials, Jan. It really is appalling, isn’t it? I wish you well as you continue.

  26. Carolyn allsop 5 years ago

    Any advice about to complete a whole new DST today in hospital setting after 1 week this will be 5th DST over last 2 1/2 years all rejected, even tho 5 consultants wrote full supporting letters requesting support for CHC. All ignored.
    I have found a nursing home to take mum on tomorrow DASS have offered £420 per week towards the home I have selected and I will pay the top up of extra £400 per week. So desperate to get mum the care she so desperately needs. Now at 94 she is an Insulin diabetic with Altzheimers/vascular dementia .. No short term memory apart from all of her other co-morbidities however the NHS always reject all supporting evidence and state her needs are not primarily health!! Any help or advice? I am just going on the hospital now to start the DST completion!!
    I must now engage some legal assistance because without it we will fail again if that I am confident although I could wallpaper my hone with all of apology letters I have from our CCG regarding their processes not having been adhered to previously, none of which altered Mums needs but completely altered the outcome !!

  27. Jan Allen 5 years ago

    My mother-in-law with dementia has had CHC funding for some years but a recent MDT determined that she was no longer eligible. We were not aware of any improvement in her condition.
    She continued to be deemed to have a Severe level of need in the Cognition domain but the main disagreement was that it was decided that despite having had a stage 3 non healing pressure ulcer since July that it didn’t warrant a Severe level of need for the skin domain. A community matron present at the meeting said initially that it wasn’t healing (she is monitoring the ulcer on a regular basis and advising the home nurses on how to manage it). After a lively discussion it was decided that as a swab had been taken to determine whether it was infected that if the sample showed that it was infected that it would not warrant a Severe level of need as the argument was that if infected the prescribed antibiotics would enable the wound to heal. If the swab determined that the wound was not infected (but still red looking) then a Severe would be awarded for level of need.
    As unprofessionals we struggled to understand such logic. We were left wondering if such “logic “was a desperate attempt to not allow her continued eligibility, as 2 Severes would have made it very difficult for the MDT and CCG to refuse continued funding .

    • Angela Sherman 5 years ago

      I think you’re right to wonder where the logic in that is, Jan – and to me it sounds like a tactic to deny funding. From experience I know that when there’s one clear Severe score (in your mother-in-law’s case with Cognition), many assessors seem to try anything they can think of to avoid awarding further Severe scores.

  28. Shirley Hurley 5 years ago

    5 years ago my mother (then 78 years old) had a stroke and while she was in hospital she was diagnosed with mixed Dementia (Vascular and Alzheimers), along with high blood pressure, high cholesterol, heart failure and atrial fibrillation. She is approx 5’1″ and slim build. While she had some capacity her ability to care for herself ie everyday things like being able to shop, organise her banking, paying bills, showering and dressing, physically she could do but was mentally challenged on doing these things and without me looking after her for the last 5 years she wouldn’t have been able to do. Upon discharge from hospital they refused to release her until a care package was put in place because they recognised there was a problem. This care package was 2 half hour visits per day, one am and one pm. At the time we felt this was inadequate but deferred to social services knowledge. We were never made aware of the CHC package or NHS care of any description. A CHC assessment was never done, all that was done was a social (financial) assessment which we were unaware of until after she came out of hospital and was back at home and in receipt of her care package. Firstly, was this legal and the fact that we were not made aware of the CHC? At first there was no contribution from my mother as she was not in receipt of all her benefits. In 2012 another financial assessment was done (no CHC assessment) and it was deemed then that she had to make a contribution towards her care package. We can get proof from the neighbours that the care visitors were here no longer than 5-10 minutes at the most, in fact some times less than that and she was paying for a full half hour visit. Because of her condition and not being able to be on her own during the day we managed to get her into a day centre so that someone could keep an eye on her during the day and ensure she was eating. Over the 5 years her dementia deteriorated and her heart condition (to the point where she had to have a pacemaker fitted) until finally in May 2015 we all decided (as a family) that the care she was getting was not sufficient for her needs ( ie the care workers were not feeding her or showering her) and we moved in to look after her. Even then we saw there was a big deterioration. Finally in July there was a big drop in her dementia (vascular episode) and she started to attack myself and my husband physically. Upon calling the police and ambulance she was Sectioned under Section 2 of the Mental Health Act. She was kept in hospital for 28 days assessment and then upon her “appealing – saying she wanted to go home” a meeting was held for which I was present and she was then taken off from Section 2 and was staying “voluntarily”. The assessment of the Doctor was that she could not be released back home. She has now been found a place after 2 months in a secure ward a home in a secure care home and cannot be allowed out of the home without accompaniment. At the end of a 4 week trial period the social services are then going to do see if the care home is suitable for her needs and if so will be doing a financial assessment again to see if she needs to pay towards her placement in the care home. At no time in the last 5 years have social services ever done, and still haven’t done, a CHC assessment. It was only through some research on the 30th September by ourselves that we even found out about the possibility of CHC help. Now whilst she may not need to pay anything anyway we do feel that potentially the council are at fault for not doing a full CHC assessment 5 years ago or since. They seem to be more interested in her financial state than her well being and health needs. When we mentioned about CHC to her senior care worker he didn’t believe that she would be entitled to it and has never been entitled to a CHC assessment. Is this correct and how and where do we stand?
    Many thanks, Shirley

  29. Rachel Idle 5 years ago

    I am in the throws of fighting for NHS Continuing Healthcare funding for my father-in-law, Peter. Briefly, Peter was NHS Rapid Responsed into NHS Respite Care in a Care Home, as an emergency, following an emergency referral by his GP in June. After a couple of weeks, following intensive support from doctors, Physios, District Nurses etc. at the care home, an MDT Meeting was held and it was decided between the NHS Rapid Response, Social Worker, and Occupational Therapists and Physio that Peter required 24 hour Care in a Care Home, with his complex health needs being met via community-based nursing teams – via twice daily visits from a District Nurse, and additional visits as required from Diabetic Nursing Specialists, Physiotherapists, his GP and hospital liaison nurses. Basically, his complex and unstable range of health needs, which had brought him into the care and nursing system in the first place and which were the cause of his need for sare, were being sidelined in favour of a focus on his resulting basic care needs. After a few days of being discharged by NHS Rapid Response into a new Care Home, under Social Services (SS) 6 weeks Respite rules and pending an SS Financial Assessment, due to further serious and life-threatening health issues, Peter was emergency admitted to hospital. After 23 days in hospital and prior to him returning to the Respite place, an NHS Continuing Healthcare Checklist was carried out by hospital staff on 21st August. This Checklist triggered a full DST Assessment with a date to be fixed once my father-in-law had been discharged back to the care home. The first DST Assessment Meeting took place on 17th September and a further Assessment Meeting is still to be held, as the CHC Assessor required additional expert medical information to complete the Assessment. I am concerned as there seems to be confusion as to who covers the interim costs for Peter’s care pending completion of the NHS CHC Assessment. Basically, SS have requested financial information so that they can provisionally do their assessment for SS funding costs (as they think we are unlikely to succeed with our claim for NHS CHC Funding. But my understanding of the National Framework is that it is the NHS/CCG who should take responsibility for these interim Care costs (less any Top-Up Fees). The period in question is between the NHS CHC Checklist completion date on 21st August (when my father-in-law was still in hospital) up to the date of completion of the NHS CHC Assessment. My interpretation of paragraph 74 and 75 of the National Framework for NHS Continuing Healthcare and NHS Nursing Care is that the relevant CCG should cover these care costs. I suggested this to the CHC Assessor who responded, “Oh, well, we don’t do that in Barnsley!!” I have since had a phone call from the CHC Assessor’s superior who says that paragraph 74 is possibly being misinterpreted by me (though he needs to check for sure as he didn’t know for definite!!). Reading between the lines, he implied that the words ‘appropriate setting’ within paragraph 74 might be the get-out clause for the CCG being able to shirk its financial responsibility to Peter. The suggestion was that perhaps I would be unable to prove that Peter’s current 24/7 care home setting (as had been agreed and confirmed via NHS Rapid Response and SS) was an ‘appropriate setting’ for purposes of enforcing paragraph 74.

    The above only scratches the surface of the complexity of our current situation and the difficulties we are coming across in trying to obtain comprehensive and straight forward answers to care/health-related funding queries. We basically can’t get a straight answer from anyone, and no-one seems to truly understand the National Framework. Where do we go from here?

    Any advice and clarification of the correct interpretation paragraph 74 would be wonderful.

    • Angela Sherman 5 years ago

      Hi Rachel – a few points to help:

      A six-week intermediate care period should be funded, and your father-in-law should not have to pay for this. Regarding the pending full assessment for CHC, it’s not possible for anyone to tell Peter to pay for care until it’s been properly shown that he is a local authority responsibility – is indeed he is. If he’s told to pay before the local authority (as part of the CHC Multidisciplinary Team) has looked at whether his care needs are beyond simply social care, this potentially puts the local authority in an unlawful position. It also sounds as though the local authority and the CHC assessor are trying to put you off. No one should be asking for financial information at this point. It sounds as though the ‘professionals’ involved could be either incompetent, ignorant of the law or deliberately trying to make Peter pay. It doesn’t matter where the CHC assessment is carried out, and it doesn’t matter what the care setting is, the NHS still has a duty to assess promptly – and neither the local authority nor the NHS can tell Peter to pay until a lawful CHC decision has been made.

  30. S. Wagstaff 5 years ago

    My mother is currently in hospital due to a variety of severe needs and difficulties.

    I attended a meeting at the hospital a couple of weeks ago where the attendees were; a Junior Registrar, a Social Worker, an Occupational Therapist and a Senior Nurse. This took the structure of an informal meeting in a small anteroom at which the Registrar took charge and informed me that my mother was seriously ill and, fundamentally would not be able to return home. At no time was a Checklist mentioned or the fact that this was a meeting concerning NHS Continuing Healthcare. No notes were taken to my knowledge and, as far as I knew it was a courtesy meeting to explain that she did not have long but would need a nursing home after discharge and to prepare for that.

    Yesterday, on visiting the hospital, I was presented with a Continuing Care Report/Checklist which claimed to have been filled in at various times. The majority of the information in the Checklist is seriously inaccurate and not a true reflection of my mother’s condition.

    Can I refuse to sign it and issue a covering letter why?

    • Angela Sherman 5 years ago

      This is very common, unfortunately, and we receive many, many accounts from families who report the same things happening. The Checklist and any further Continuing Healthcare funding assessment should be carried out with your knowledge and involvement. Yes, refuse to sign it – and insist they do the whole thing again. Also, you can make it clear that your mother is not obliged to pay any care fees until it has been properly decided who is actually responsible for paying. This article may help:

  31. Tracey Glendinning-Smith 5 years ago

    My father has recently been assessed for CHC following a request from us when he was approaching discharge. This was completed very quickly without our involvement and the MDT did recommend him for CHC but this was not validated by the CCG, who said there was not enough supporting evidence. Would this indicate a good case for appeal given the MDT recommended him? There doesn’t seem to be much info about this kind of scenario as most focuses on disagreeing with the assesment itself. Any advice appreciated.

  32. Angela 6 years ago

    Hi Claire – could you complete our contact form below in the first instance with a few details about your situation. Many thanks.

  33. Claire 6 years ago


    Could someone please contact me regarding the CHC process ?

    Thank you

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