Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs

If your relative has a pending assessment or review for NHS Continuing Healthcare Funding, then you must read this article.

Many families undergoing an assessment to see whether their spouse or relative is eligible for NHS Continuing Healthcare Funding (or ‘CHC’) are often left bewildered when they learn that they did not meet the eligibility criteria for CHC, or are astounded and outraged when their existing funding is withdrawn.

In many cases, families will be left distraught and frustrated by the whole challenging process, but much of this anguish could have been avoided had they clearly understood the critical difference between social needs and healthcare needs.

What is NHS Continuing Healthcare Funding?

‘CHC’ as it is commonly known by professionals, is a package of services which is arranged and funded by the NHS through its local Clinical Commissioning Groups (CCGs) for individuals who have complex ongoing ‘primary health care needs’. More about this later…

The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018) states that health care needs relate to the “treatment, control, management or prevention of a disease, illness, injury or disability, and the care or after-care of a person with these needs (whether or not to the tasks involved have to be carried out by a health professional)“.

Important points you must know about CHC:

1.CHC is available if you are over 18 to meet needs that have arisen as a result of a disability, accident or illness.

2.CHC is not dependent on having a particular illness, diagnosis, condition or disease.

3.CHC is ‘free at the point of delivery’ i.e. when you need it as stated in paragraph 35 on page 14 of the National Framework.

4.CHC covers 100% of the care fees payable, regardless of the individual’s wealth, savings and assets. CHC is free!

5.CHC is payable regardless of who provides care or the place where the care is provided. So, for example, care can be provided in a care or nursing home, hospice, other care facility, or even in the person’s own home.

6.If you are resident in a care home, CHC covers all the care fees, including the cost of accommodation.

7.If you are receiving full-time care at home, CHC covers nursing care plus personal care, such as, bathing, dressing and any additional household cost directly related to care needs.

8.CHC is not means-tested, so wealth should never be a consideration.

In short: CHC is all about putting health needs first, not where you live or how much money you have.

Who gets CHC?

Everyone who receives full-time care and has healthcare needs should be assessed for CHC Funding. However, the public are generally unaware that this free NHS funding even exists! Instead, they are told that they have to pay for their own care and are subjected to means–testing.

To be eligible for CHC Funding, you have to have a ‘primary health need’ which means that the principal reason for care is due to health needs, not social needs.

The phrase, ‘primary health need’ is an expression included in the National Framework for NHS Continuing Healthcare. It is not a legal term, but a description to help identify the boundary between social needs and healthcare needs, and to determine the level and type of care required to meet those assessed care needs.

The distinction is critical in determining which side of the dividing line you fall onto, and consequently, who has to pay for your care.

This is the important bit…

  • healthcare needs are provided free of charge by the NHS
  • social care needs are provided by the Local Authority (Social Services) and are means–tested

However, in practice, the dividing line can become blurred, as NHS and Local Authorities may battle to suggest that your relative’s care needs fall into the other body’s remit and responsibility for payment.

The landmark Court of Appeal decision in the Pamela Coughlan case (1999), helped to clarify this boundary line and set out the ‘primary health needs test’. The Judgment set out what care could lawfully provide be provided by the Local Authority and what care fell beyond their remit and was the responsibility of the NHS.

Following the Coughlan decision, a Local Authority can only provide nursing care if it is merely:

  • incidental or ancillary to the provision of the accommodation which a Local Authority is under a duty to provide; and
  • of a nature which it can be expected that an authority whose primary responsibility is to provide social services, can be expected to provide.

As Pamela Coughlan’s healthcare needs were greater than those which the Local Authority could be expected to provide, she was eligible for NHS Continuing Healthcare and entitled to a free package of care.

The key is to look at the individual’s day-to-day nursing and healthcare needs, and consider when taken as a whole, whether they are above and beyond the expectation of the what a Local Authority can lawfully provide. You do this in conjunction with the 4 Key Indicators (or characteristics) – Nature, Intensity, Complexity and Unpredictability of the individual’s needs. Any one, or any combination, of these four Indicators of need, might mean that the individual has a primary health need, and is therefore eligible for CHC free-funded care.

The dividing line between social and health care needs in the Coughlan judgment and the ‘primary health needs’ approach was subsequently incorporated into the Care Act 2014. The Care Act 2014 has been included into the revised 2018 edition of the National Framework for NHS Continuing Healthcare and reinforces the existing boundaries and limits of what care is the responsibility of a Local Authority, and what is the responsibility of the NHS. The Care Act makes it clear that if an individual may be eligible for CHC, they should be referred to the local Clinical Commissioning Group for an assessment.

However, despite this assistance, unfortunately, the boundary demarcation is still not clear enough, and that creates uncertainty and room for the NHS to avoid paying CHC.

Some examples of social care needs to help you…

Social care is often thought of as needing help with things like:

  • your well-being
  • the activities of daily living
  • helping to maintain independence and social interaction
  • avoiding risks in vulnerable situations

Common examples of social care needs might include: help with getting in and out of bed, getting dressed and washed, toileting, meal preparation and eating, and assistance when going out shopping or visiting family and friends.

As an example, take an individual who has suffered a partial one-sided stroke. They may be perfectly able to communicate their needs reliably, have full cognition with no behavioural issues, have no breathing problems or incontinence needs, and enjoy a perfectly healthy well-balanced diet. However, they may require additional assistance with dressing, personal hygiene and their mobility, and need someone to accompany them at all times when going out of the home to minimise the risk of falling. This example of social needs may be available through the Local Authority (Social Services) – unless you have enough money, wherein you will have to pay for the care yourself.

Understanding this key difference between social and healthcare needs, could save you the stress and trouble of needlessly pursuing a CHC assessment for your relative if their needs simply aren’t high enough to meet the eligibility criteria for CHC Funding, and in fact, are plainly social needs (and therefore subject to means–testing).

Equally, the distinction is important because, if your relative clearly has a primary health need, but you fail to recognise the difference, they could be lead down the wrong track and end up self-funding their care out of private savings, and even being forced to sell their home, quite unnecessarily!

Joint Packages of Care

CHC includes personal and social care needs which might otherwise be met by Social Services.

In some situations, package of care can be provided jointly by both the NHS and the Local Authority.

If your relative’s care needs are equally funded by the NHS and the Local Authority, then there is an argument to say that their needs are sufficiently high to merit CHC Funding in full. However, your argument is strengthened if the majority of the joint care package is being funded by the NHS. For example, if the NHS are funding 75% and the Local Authority are funding the other 25%. If the majority of care needs are being paid for by the NHS, then arguably that demonstrates an overriding primary health need, and as such, all the funding should be paid for in full by the NHS, and not subjected to means-testing by the Local Authority.

For more information, read our blogs:

Are You Getting A Joint Package Of Care?

What is a joint package of care?

Summary:

Coughlan, The Care Act 2014 and the National Framework combined, draw an important distinction between social needs and healthcare needs.

Remember: It’s all about understanding who pays!

Recognising the difference is vital, as it determines which body is responsible for paying for your relative’s care, or whether they will have to contribute to the cost of their own care.

When you put the maths into practice, knowing the difference could mean paying care home fees of £937* a week / £45,000 a year (*Which.co.uk) or nothing at all!

The difficulty is that often the dividing lines are between social and healthcare needs are blurred, and it is not always obvious which side of the line you fall onto. If in doubt, then you must request an assessment for CHC Funding to ascertain whether your relative has a primary healthcare need.

If the NHS have tried to push your relative down the Local Authority means-tested route or self-funding, despite having obvious healthcare needs, then share your experience with others and explain how you dealt with the situation.

33 Comments

  1. Valerie Bradley 3 months ago

    The NHS
    Trys to close every Avenue the claiments can think of to put forward a good case for continuing healthcare,so you have to find evidence they cant play down,go to your local library find every dictionary,like Collins,oxford,look at every definition,in every dictionary, for the words mearly incidental and ancillary,take a photo of each dictionary’s definition,of mearly incidental and ancillary, send by recorded delivery the photos of all the definitions,to the LA and the CCG,and state how ever the line is blurred between LA/NHS care this Coughlan judge’s judgement clearly points out that anything over the mearly,incidental and ancillary line,is to be NHS funded for if you look at the definitions provided in the dictionary you will clearly see it means minor,of no significance,hardly anything and so on.
    State that this will be pointed out at the CCG panel as part of the appeal and l will audio record the meeting on my phone,and anything else you need to say.
    Valerie bradley

  2. Heather Cox 3 months ago

    Hello, my mum has been funding her own care over a number of years as her health deteriorated the private home care package has increased. After a number of hospital admissions over the years, and attempting for NHS CHC funding which was refused after the last hospital discharge to go home and not be readmitted to a hospital as considered on ‘end of life’ care’. The District Nurses were fast tracking for NHS CHC funding, but she was considered to be improving. So, she is still paying for her own care even though she is in a hospital bed (which we fought for) in her own home, cannot move or do anything for herself, verbal communication is next to non existant with dyphasia, and has for the last 2 years x4 care visits a day, district nurse visits, Mcmillan nurse visits/phone call, plus family support. Should I try to claim NHS CHC funding again? Should I use a solicitor to do this as I’m considering Compass Continuing Health Care as I just feel overwhelmed and at a loss to try and fight again? Advice would be very welcome – thank you.

    • Ollie Howell 3 months ago

      I’m in exactly the same position as you with my sister advanced Alzheimer’s, osteoporosis, dysphasia, bed bound no mobility, repositioning so critical by carers, no communication at all everything has to be done for her feeding drinking, doubly in incontinent had a IRP meeting Jan this year and still denied any funding. I’m going to fight this all the way either with the ombudsmen or through the court these people disgust me I know my sister has a primary health needs

      • Michelle wetherall 3 months ago

        Hello Ollie,
        With the IRP in January, do you now have the decision in writing, along with the report detailing the rationale and how the key indicators were considered? Sadly an IRP is the last point at which a decision can be overturned by NHS ENGLAND. The process of now moving it to the PHSO will be long and protracted but I would urge you to make the complaint but also start at the beginning again and try and get a Checklist done for CHC. The PHSO have very limited powers and from my experience don’t change decisions! They make recommendations! Challenging the decision legally will be expensive, so please be careful when deciding on this course of action. Any legal fees can not be recovered if you are successful.
        With your sister’s deteriorating health I would be continually pushing for a new checklist and DST. Just because she has been denied funding once doesn’t mean the process can not start again. You need to be determined and persistent. The challenge for you, will be to get a Clinician to do a checklist!
        Focus all your anger and energy on learning as much as you possibly can about the process and gathering the evidence you have to prove a PHN using the key indicators.
        Good Luck

    • Michelle wetherall 3 months ago

      Hello Heather,
      Can you ask a family member to help you with appealing the CHC decision not to fund the Fast Track?
      Without knowing more of the details, it’s difficult to make any comments, but if the District Nurse has submitted a Fast Track, then it must be commissioned! Take a look at the articles on this site about Fast Track.
      I wouldn’t give up on it! From the little you have said about your mum’s end of life care, it appears that she has every right to CHC. I urge you to read more on this subject.
      There are many legal firms/consultants specializing in this field of work. Any costs incurred can not be claimed back if you are successful at appeal. I have had discussions with Andrew Farley & Laura Began of FarleyDwek (this is their forum we are on!) and they were very sympathetic and helpful. In the end I did it myself. If I had to choose a firm I would go with FarleyDwek, purely on the basis of the up to date knowledge they have and share with others on this excellent website!
      Good Luck

  3. Valerie Bradley 3 months ago

    Perhaps we should be taking a different set of principles here,if you recieve disability benefits, because of your health needs for example DLA/PIP its perfectly reasonable to point out to the assessors that a full assessment of your health needs,has been carried out already by the DWP.
    Your evidence will be how many years have you been recieving this benefit, the fact that you would not be on,these benefits if you did not have health needs,and you would like the assessors to give you good detailed reasons as to why they say you only have social care needs after their assessments, when it’s already been established by the DWP that you have health needs.
    You can also factor in these details in any appeals,eg “l wish to point out that your assessors carried out a flawed assessment,l have been in reciept of ( put down the benefit) since ( put down date) and it’s been clearly established that l have health needs,and can your assessors explain why they failed in,their assessment to come to the same conclusion as the DWP.if your carer receives carer allowance to look after you,point out also that they have to provide 35 hours or over of care for you weekly and get ask the carer to write a detailed document of what care is provided for what health needs daily,
    If it goes to the IRP/ombudsman include the benefits ect you are on,pointing out your health needs have already been established by the DWP.
    Valerie bradley
    I

  4. Tracy O'Neill 4 months ago

    It seems that, like the DST itself, the definition of Primary Health Need is a subjective opinion. What is the objective test for a PHN? my son’s CCG admit he is complex, challenging etc and he is in full time care for his health needs and yet he keeps getting turned down for CHC on the basis of no primary health need. He meets the Care Act definition of a disabled person and he is in care to meet and manage those needs. They just keep saying no and now we have three ongoing appeals, ridiculous situation. What is the definition of PHN or is it variable?

    • Michelle Wetherall 4 months ago

      Hello Tracy, I hope you can find the help and advice you need on this website. Have you tried searching the other articles that have a lot more responses about CHC and other benefits such as PIP? I’m guessing that you have ,especially as you are now on to your third appeal for CHC. Without understanding your unique set of circumstances regarding your son, it’s difficult to comment. I have a friend with an adult son with severe learning difficulties who is in “residential” care and his behaviour is extremely challenging and at times is a danger to himself and others. He is not CHC funded. His home does not have a registered nurse present 24/7
      I hear what you say about the the Care Act and disability and the grey area that exists in many cases like your own. I agree entirely that a PHN is totally subjective and I would be making the case to prove it using the Key Indicators. If you can prove your son has a PHN using these characteristics then you have a chance of success. I’m terms of your sons challenging behaviour then you would only need to prove through this the Unpredictability element.
      I guess that many disabled individuals in “residential” care are denied this funding as they do not require “nursing” care to be present 24/7…….yet they are disabled in terms of the Care Act. Have you listened to the articles by Professor Luke Clements. This may help?
      I hope you can get the advice you need. My comments are just that……comments! I have no expertise in CHC just the experience of 3/4 years of battling for funding for my late father who had Parkinson’s disease and dementia.
      Good Luck!

      • Tracy O'Neill 4 months ago

        Thanks Michelle, yes I am familiar with PIP, ESA etc and my son does qualify for those. There’s is no nursing care as such in his carehome but I don’t think nursing care is a requirement for CHC, as care can be carried out by anyone inc. family members. I have see Luke Clements and tried to glean more from him. The NICU is not, from what I understand, a requirement for eligibility. It’s all entirely subjective though so even though there have been three CHC assessments and two of the DSTs have been redone as desktop exercises, the scores in key domains fluctuate wildly. Eg. ASC was Moderate in 2017, increased to High on appeal, reduced to moderate at next appeal and increased to High at third assessment. Psych needs have gone from High to Moderate and then back to High. Cognition has increased to High. nutrition has increased on appeal 2017. Behaviour has reduced from Priority to Severe, then again reduced to High and is now down as a questionable Severe. Communication has increased from Low to Moderate. So the underlying needs have generally increased and yet I would say they have always been very high in these domains. The health allocation has increased in the last three years and yet he always gets a joint package and the local LA say there is no legal limit. If that is the case then he may never get it and they can always argue he doesn’t have a PHN. It’s inconsistent and incompetent. Three appeals ongoing and a fourth one on the cards later this year ?

        • Michelle wetherall 3 months ago

          Hi Tracy,
          I feel your frustration! On a positive note you know as much about the process and seem very determined!
          You have to be! The only reason I say about the nursing care, is it becomes easier to prove a case if there is a requirement for a claimant to need the care of a registered nurse 24/7. I agree with your comments though.
          I have found the FNC (funded nursing care) element of CHC really difficult to square! My late father was deemed sufficiently poorly to be awarded this element of funding , which could only be paid if he was in a nursing home with a registered nurse.
          But wasn’t ill enough to be granted full funding!
          The DST is a subjective process and one which in the end I tried not to get to hung up on, knowing that it at the shambolic MDT the domains were awarded by a nurse assessor and a social services representative that were clearly not well informed of my father’s nursing needs or indeed competent with the NF.
          The few lines they wrote in response to the key indicators were so poor, it made me determined to do a better job! I was incensed with the pathetic 6 lines to describe my father’s needs using these four characteristics. There was little in the way of how each interacted and no conclusion to indicate whether or not the indicator was met.
          My advice for what its worth, is to focus on the Appeal stage and to prove your son has a PHN using the Key Indicators. If you’ve read the latest CTBD article Q & A interview with an IRP Chairman……it states ” A good set of four key Indicators is a must!” This is the hardest part of the assessment and is often not done well!
          NOT DONE WELL BY WHOM? The assessors???? Q4 of this article is really relevant. Make sure that you focus on all the needs and how they impact on one another. Make sure that they show how the needs manifested themselves practically.
          I have repeatedly said on this platform that a decision will not be overturned unless you can prove a PHN through the Key Indicators.
          I hope this has helped you to plan ahead? Yes, you need to reference the awards made in the domains but don’t let this get in the way of the Key Indicators.
          Good Luck!

          • Tracy O'Neill 3 months ago

            thanks Michelle I believe that the key indicators do not all need to be met, just one of them.
            Nursing not necessary, the care can be provided by carers or family.
            What is a social care need? If care provided in respect of and due rot recognised disability
            then surely that is a healthy need? My son has 24/7 including 1:1 14 hrs/day and 2:1 44 hrs a week when
            in the community. How could anyone need all that and still be considered not to have a PHN?
            Is it allowable to override the MDT by issuing a replacement DST as a desktop exercise on appeal
            without any involvement of person, family or carers/professionals?
            Also, in 2017 my son had a MDT in Jan and then, before getting an outcome letter, we had
            another meeting in which I found that the scores had been changed (reduced) and 3 years on I still
            haven’t had any explanation.
            Also, every time they look at appeals they don’t address the process maladministration even though
            they formed part of our appeal. This is wrong.
            Can anyone tell me what on earth these crooked CCGs are up to? My son’s has been unable and unwilling to
            answer questions

          • Michelle wetherall 3 months ago

            Hi Tracy,
            Only one of the K.I’s has to be met!
            Keep the pressure on! From what you have described and the knowledge you have about CHC, it’s just a question of now presenting all that at an IRP. I’m not sure why you have not reached this stage? With the appeals that have taken place, that have not been concluded satisfactorily by not answering your questions and complaints, then your case should have reached Local Resolution?
            Perhaps now is the time to formulate all your complaints into one and submit it to your CCG and your local MP asking why your complaint has not been answered.
            With the current situation, I’m guessing it will be a very protracted process but none more so than what you’v already experienced. Make sure you ask for acknowledgement and express your intention to challenge at IRP. You have every right to ask for this. An IRP isn’t guaranteed, but you have nothing to lose at this point by pushing for it.
            I spent literally hundreds of hours on the whole process. CCG’s are hoping that you’ll give up.
            I urge you not to give up! It’s evident you have done so much work already and have the evidence to prove that your son has a PHN. It’s going to be hard to overturn a decision based on maladministration. The most you’ll probably get is an apology. But with all the evidence you have with regard to your son’s health needs, then you have every reason to be optimistic.
            I feel the despair and anger it’s caused you, but try not to let this overwhelm you. Keep focused and use your knowledge to make that complaint. My advice is simply based on my experience not qualification.
            I’m merely trying to give a little help back, after all the help and information I took from this website.
            Good Luck.

          • Tracy O'Neill 3 months ago

            Hi Michelle. I made a formal complaint last year I think Sept or Oct over the whole thing. That there were three overlapping appeals. That the questions hadn’t been answered. That they kept changing the domain scores despite underlying needs remaining unaltered. That they changed the score in 2017 without agreement or explanation (reduced behaviour from priority to severe) etc etc and that process maladministration hadn’t been addressed. All of it. And I eventually got a response a few weeks ago which was incomplete and padded out with assurances over future processes and the aiming being done etc. I have written back to say they must address and answer all issues otherwise I will go to NHS England or ombudsman. Now of course everything is on hold due to corona and they say they are reviewing my complaint and will consider their approach. I thought to ask them to deal with it all as one issue would get it sorted but they simply won’t answer questions and continue to mess me around. They are shocking. They even brought up process after the assessments over appeal but not the assessments themselves. They are devious and dishonest in the extreme. No I won’t give up but sadly am on the way to a fourth CHC which may also end up at appeal. How can you deal with four at once? The paperwork is astonishing. The system is so flawed that the CCGs know they can get away with it in most cases and push you to give up and get your life back.

        • Michelle wetherall 3 months ago

          Hi Tracy,
          DON’T GIVE UP! The paperwork does mount up! I ended up with 4 arch levers full of documents.
          You are determined and you have the knowledge to keep pushing this forward. Don’t let up, keep the pressure on with complaint after complaint and request after request! Nothing is achieved without effort and I know how tiring it gets, but the more you push back the greater chance of success.
          As I’ve said previously focus all your energy on proving the key indicators with the evidence you have.
          It does get complicated for sure. Our case went from ineligible Checklist, to appeal, to Checklist eligible, to DST ineligible, to appeal of DST, to refusal of FTT, to appeal of FTT to eligible FTT to withdrawl of FTT to appeal, to further FTT refusal to final FTT approval just a few weeks before my dad died.
          A complete an utter mess of paperwork! Not to mention the stress involved!
          So, I fully understand your frustration, take a break for a couple of weeks and then reassess how you go forward.
          Good Luck.

    • Goldie 3 months ago

      THE QUESTIONS NEED TO BE CHANGED, so that everyone needing CHC meets the criteria. We are all being lied to!

      The powers that be are breaking the Law.

      Just tell these people that you are not being bullied into paying because your son is eligible.

      Will someone get a grip of the CHC situation and stop bullying/harrassing people for payment when quite frankly CHC is necessary for the most vulnerable of people.

      • Michelle wetherall 3 months ago

        Hi Goldie,
        Who? Who is going to get a grip on CHC? I’m so pleased this forum is kept going by contributors with such passion as you have. My fear as we move forward in these uncertain times, is work that has taken place by campaigners such as AGE UK, Alzheimer’s Society, The Royal College of GP’s and various News agencies will fade into the background as Government deals with Brexit and now COVID19.
        The Social/Care crisis has not been dealt with by successive Governments for at least the last two decades. Parties and Prime Ministers have made promises that have repeatedly been broken. Boris has said, no one should have to sell their home to pay for dementia care, yet it continues. It is a betrayal from all parties going back years!
        The Royal Commission for free care was rejected by the Government in 2000 but adopted in Scotland…….20 years ago!!!! Personal care provided by Scottish councils is free if you’re 65 or over, regardless of income, capital assets, or marital/civil status. So all of us are paying through our taxes for this – is that fair? You live just across the border and you are entitled to free care.
        A huge industry of both privately owned nursing/care homes and specialist legal advisors now exists because of CHC.
        My story and experience of CHC began back in 2016 with my father who had Parkinson’s disease and dementia was no longer able to be cared for at home by the family. He was hospitalized and I found myself embroiled in the process of discharge to nursing home. The beginning of CHC was a very steep learning curve about NHS funding that in my opinion is a “double subsidy!”, which saw my dad deemed able to pay for care, whilst subsidising the costs of support for those funded by the state. Dad went into a local nursing home, where the father of a friend of mine was also resident. Dad was paying a huge amount, yet my friend’s father who had been imprisoned for a number of years and had lost everything and lived on benefits, was being fully funded!
        CHC is unfair. This system sees mainly older people battling to get care, on top of battling the devastating effects of dementia/illness and old age. Is this how we want to treat the elderly and vulnerable? Penalize them for working and being self sufficient all their lives. Which is exactly what my dad did/was.
        I don’t see an end to CHC in the near future and that’s why it’s crucial for contributors to keep talking and posting their experiences and help. Campaigning has to continue to highlight the crisis in Social Care and the injustice of CHC.
        I was successful at appeal with NHS England and was able to recover my late father’s nursing home fees.
        I took a lot of information from this website and I’m now trying in my own small way to give some help back and urge families to appeal AND CAMPAIGN TO KEEP THIS AT THE TOP OF THE AGENDA, like Admiral MATTHIAS has done recently.

    • Tracy O'Neill 3 months ago

      Good point. I will include that and see what the response is.

  5. Valerie Bradley 4 months ago

    I was to have a DST to be completed before the covid 19 pandemic, so that will obviously be delayed,l have done my homework but l,realise that you have not gone in depth with the pain and medication section of the DST,l am expecting them to down grade the double incontinence section and most others,but l dont think l have gone over the top with the medication section,this l think will prove a problem to them,some my 31 healthcare needs are rheumatoid arthritis, fibromyalgia osteoarthritis and osteoporosis, as you are aware the pain from these 4 health care problems are overwhelming
    I was discharged from the pain clinic by the consultant anesthetist, he wrote a letter to my GP stating he cannot control my chronic unremitting pain, dispite morphine and 9 strong tablets daily,he went on to tell my doctor not to increase my pain medication further as it would be FUTILE, he pointed out that l was not fit enough for the knee replacements l need due to heart failure and other coomorbiditys prevented the other 4 surgerys l needed none unfortunately for this lady can be carried out.
    The second section in the medication part of the DST,has been written to my doctor,by the gastroenterologist who told her that the 40 medications daily are having bad side affects,l l had developed chronic diarrhoea daily as its vital,l have to,take this medication ,he told her to put me on diarrhoea medication for the rest of my life.
    I am sure you agree that in this one section alone l should if the DST is carried out properly I should score a priority and be entitled to CHC.
    I do after all have the evidence in the consultants letters,if they argue about this l will argue that they are a nurse and social worker,who do not have the expertise of the pain consultant, and the gastroenterologist consultant.
    It would help as l said to do an article on unremitting pain and medication side affects valerie bradley

  6. Steve Reynolds 4 months ago

    My late father in law had Parkinson’s and was awarded CHC funding in 2013. At the end of 2018 he was reassessed and deemed to not qualify any more despite being in the final stages of Parkinson’s and obviously worse than 5 years previous.

    We appealed and whilst waiting for their decision my father in law died in Dec 2019.

    I believe the stress of seeing £100,000 of his daughters’ legacy go toward 24hr care (this was waking care in his own home) contributed to his rapid decline.

    To add insult to injury our appeal was eventually rejected in Feb 2020 and, although my first reaction was to do another appeal with NHS England, in the current Covid climate I think this would be a waste if time and money.

    I just hate the injustice of a system that leaks ridiculous amounts of money from employing a whole tier of pointless middle management and external consultants and then tries to claw back the money from the very people it should be helping.

    • Michelle wetherall 4 months ago

      Hello Steve,
      Please accept my sincere condolences on the loss of your father in law. I lost my dearly loved father in 2018. He had advanced Parkinson’s disease and dementia, so I fully understand what your family are going through.
      All I would say, is that to have funding withdrawn after a period of 5 years with funding, is grounds enough to appeal to NHS England. During those 5 years you would have had reviews that all concluded that funding should continue! I hope you have held on to this paperwork? I would certainly be gathering all the evidence and applying to NHS England for an IRP (Independent Review Panel) You have nothing to loose. It wouldn’t be a waste of money if you are able to commit the time to appeal yourself. I can see that you would be looking at evidence from the period 2018 – Dec 2019, which is totally do-able. You would need to access your FIL care notes from his nursing team/ carer’s looking after him at home?Together with any other hospital notes etc. Personally I would be appealing the decision in Feb 2020 and asking your CCG to forward you information to go to IRP. An IRP is not automatic. The evidence you give will be assessed by the Chairman of your IRP and you will then be informed of their decision.
      I know we are all feeling like this isn’t right thing to be doing, when the NHS is courageously battling Covid, but we have to look to the future and how funding for the NHS and Social Care is funded. The system of CHC we have in place needs reforming or replacing, but if we don’t challenge it, then nothing will change! We shouldn’t forget either the pledges made by the Government after the election, to fund the NHS and Social Care…..I remember ministers saying ” That nobody needing social care will be forced to sell their home to pay for their care!”
      Good Luck!

      • Steve Reynolds 4 months ago

        Thanks Michelle, it’s sad that there are just so many stories like this.

        Our original solicitor has told us that we’re unlikely to win an appeal but if we went ahead it would cost a further £2500 or so. Are you suggesting doing the appeal ourselves?

        I hear what you say about changing the system, but given the current climate and the constant games of promises with no delivery that the government plays do you really think we stand a chance?

        • Michelle wetherall 4 months ago

          Hi Steve,
          YES! If you can commit the time to research and feel confident in attending an IRP, then you have nothing to loose but everything to gain! We too paid for the services of a solicitor to advise us at the beginning of the process. This specialist firm of lawyers and there are many of them in this field, prepared our first appeal. As a point of interest and to see if my knowledge of the NF was good enough for me to try and do it myself, I prepared my own appeal for comparison. My draft appeal was better! Why? Because I knew my late father’s health and 24/7 nursing needs better than anyone else! At this point I dispensed with the solicitors.
          I’m not saying that everyone can do this alone, but the way I see it, is you have nothing to loose.
          If you haven’t all the previous documents regarding your FIL’s CHC awards, then I would be now asking your CHC/CCG to provide you with copies of them. This is your starting point in terms of gathering evidence about your FIL’s needs. You definitely need the last DST that would have been completed when funding was withdrawn together with the letter of outcome and the rationale behind the decision. I would also be sending a letter to CHC/CCG registering my intention to appeal. Ask for confirmation of the registration and also a date for the appeal submission. In these uncertain times, this could be months ahead. Keep all statements and invoices generated as a result of now paying for your FIL’s care. It will be easier to present later, should you be successful.
          You will need all the care/nursing notes from those providing the care as well as Doctors notes for the period of review ie: 2018 – 2019.
          I’m not saying it’s going to be easy. It isn’t! You will need to read a huge amount and know the National Framework as well as those administering it. I was fortunate enough to be able to have the time to do this, whereas many relatives haven’t. I experienced three/four years fighting for what my father was entitled to and even though he’s no longer here, the huge fees that I recovered are now being used by my mum to ensure she has a good quality of life in her old age. Happily she remains independent and would at this stage not qualify for CHC, but I would do it all over again if I thought she qualified!
          I firmly believe that understanding the NF and the KEY INDICATORS better than the assessors is your route to success. They rely on relatives being completely bamboozled by the NF. The use their own subjective interpretation of the DST in order to deny eligibility. The assessors are generally nurses! They aren’t lawyers or specialists! Don’t waste your time and energy moaning about it. The only way to overturn the decision is to prove it!
          Good Luck!

          • Steve Reynolds 3 months ago

            Thanks Michelle

        • Karen Pollen 4 months ago

          Hi Steve, I can only agree with Michelle…..you have nothing to lose so go for it! My sister and I recently appealed, retrospectively, a decision to refuse fast track funding by our local CCG. We did it ourselves and, I have to say, it was stressful and took a lot of time reacquainting ourselves with all the information but, we were successful!
          If you can provide the evidence of your fathers deterioration over his final five years and challenge the rationale behind their decision, you have every chance.
          Michelle encouraged me to appeal and she is right when she says that if we don’t challenge this system, nothing will change.
          Good luck!

          • Michelle wetherall 3 months ago

            Hi Karen,
            I’m happy to see you, like me are still contributing the forum.
            It’s great that we are all encouraging others to challenge the process! What is the old saying the pen is mightier than the sword! It does take courage, determination and a good level of education to be able to do this alone, but when I read the heart-wrenching stories of contributors on this platform, it’s clear to me that all of the authors are well educated individuals who are articulate and well informed and have everything to gain from challenging those carrying out these assessments. The only reason that gets in the way is Time! It takes a huge amount of time to make the challenge, thus giving CHC’s and CCG’s the advantage.
            I will always encourage families to appeal. This is the only way to keep CHC and the flawed process in the spotlight! If no one challenges it, then it will continue to take hundreds of thousands of pounds from individuals who were and are entitled to fully funded care through the NHS.

          • Steve Reynolds 3 months ago

            Thanks Karen
            Given the current fiasco with key workers unable to get pep it’s clear the government’s priority is saving money!

  7. Tracy O'Neill 4 months ago

    My son’s first two CHC DSTs have been effectively reworked as desktop exercises on appeal. We have not accepted them. Are they allowed to change the DST without a new MDT? Used poor evidence and changed scores. Also not addressed process maladministration at all. And the last year’s CHC Appeal may be going the same way. We have never agreed to a desktop exercise done by a CCG nurse assessor who has never met our son and without our involvement or speaking to any professionals in the course of compiling the new DST. What a sham. How can they get away with this? After three years we still haven’t had any explanation as to why it took nearly six months to get an outcome letter and why the DST provided after a review showed different scores to what was agreed in jan 2017.

  8. Tracy O'Neill 4 months ago

    Interesting article but it appears that if care needs are as a result of health and the person needs full time care to manage those needs then surely they have an eligibility for CHC especially if they meet the Care Act definition of a disabled person as there should be almost complete overlap with CHC. Also, I understand that the NICE requirements aren’t necessary to meet to get CHC. We are in the middle of three overlapping appeals so any help would be more than welcome before we get involved in a fourth CHC assessment. Also, if health allocation is, say, 82 hours a week and arguably far more, how can that be deemed to be incidental or ancillary?

  9. Ian Mcclymont 4 months ago

    Thanks Michelle, however the new LA will not fund dad until the Appeal 2 has been concluded.
    If no new evidence is presented by former LA they will fund dad.

    Therefore the new LA cannot fund dad unless the old LA present dad as CHC qualified after appeal 2 is successful!

    It is very very murky at this end of a Vascular Dementia journey, especially after September to November 30 was funded, on appeal 1 being successful.

  10. Ian McClymont 4 months ago

    Hello ,good article Michelle.
    My current dad’s situation is in September I appealed a CHC .
    Dad got worse and entered hospital in December.He then was re homed in a Dementia plus care facility ,which suits dad better because a lower occupancy and more staff to meet dad’s needs.
    He then was given CHC number 2 and again did not meet the CHC framework,even though his RMN thought her 3 SEVERE needs score should have been acknowledged.
    This now has gone to appeal.
    In the meantime the CHC for September was successful and a PRIMARY HEALTH NEED was identified on 20/2/20.
    Because dad had been re homed from hospital in December I am know awaiting the same dispute and resolution nurse to undertake a second appeal 4 weeks after a Primary Health Need was identified for appeal number 2.
    The sting in the tail is because dad moved out of area the new local authority are refusing to pay his FNC on grounds that he should be given CHC on a permanent basis unless new evidence is presented to say otherwise.
    We carry on paying and defering the £1,960 weekly fee.
    Once this Covid 19 is done and property prices are 50% less dad’s property won’t cover his fees.

    • Michelle wetherall 4 months ago

      Hi Ian,
      I’m pleased to hear that you have been successful in securing funding as a result of the 1st CHC. I am assuming this was through LRP and not an IRP? An IRP would have taken many months to reach! So funding is in place from that date going forward ie Sept 2019? Any subsequent assessments/appeals shouldn’t have any bearing on the outcome of the 1st successful CHC. I’m sure CTBD will correct me if I’m wrong. I would be arguing with your new authority that CHC has been awarded and they should be commissioning this. Concentrate all your efforts on fully funded CHC and not FNC. The paltry amount that is FNC is the “red-herring” in this process.

  11. Michelle Wetherall 4 months ago

    Thanks CTBD for another informative article.
    I know when I was working on my late father’s case, this was so important to understand. That invisible line
    that puts you either one side or the other in terms of funding. That line that can be “moved” ever so slightly by CHC/CCG at MDT/DST,so your loved one becomes the responsibility of the local authority.
    For me (even though we were successful in reclaiming dad’s fees), I still can’t “square” FNC (Funded Nursing Care) in all of this. How can it be that my late father was deemed so poorly that he required a nursing home (not a care home) and was awarded FNC, but they deemed him not to have a primary healthcare need. It never made sense to me and inspired me to fight for justice for dad. The point I make is if a patient is awarded FNC, then I argue they have a PHN.
    They are in receipt of nursing 24/7. I urge anyone who is paying for care in a Nursing Home, to challenge and appeal FNC and CHC.
    Back to the article, which you gave examples of social care needs. This area is fairly simple to understand and I was expecting to scroll down and read some examples of healthcare needs? Primary Healthcare Need and the Four Key Indicators are undoubtedly the area of greatest concern for those applying for CHC. They need to know what this means. You have some excellent articles on here detailing them, but a refresher with examples of what Nature, Complexity, Intensity and Unpredictability means in terms of a PHN, would complete the article. I was left wondering why you hadn’t?
    For me, this is where every challenge/appeal should focus. If relatives are to be successful the emphasis wont be on the woeful/inadequate delays or process. It will be on proving a PHN using those terms. Get that right, with overwhelming evidence to support it and there can be no argument.

    • Janet Partridge 4 months ago

      I agree Michelle. We need to know what wording to use to ensure that we are describing health care needs and not social care needs.

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