Exposed: NHS Continuing Healthcare makes headline BBC News

Exposed: NHS Continuing Healthcare makes headline BBC News

At last, National TV has highlighted the national scandal surrounding thousands of vulnerable patients who have been refused NHS Continuing Healthcare Funding (‘CHC’ for short) which they are legally entitled to.  Here’s a link to the BBC’s main news item and Victoria Derbyshire’s current affairs news programme on Tuesday 11th June in case you missed it

If you are new to NHS Continuing Healthcare Funding, then in simple terms, if your relative has a ‘primary healthcare need’ ie care needs over and above which the Local Authority (Social Services) are lawfully entitled to provide, then they may be entitled to FREE funded care for all their needs, including, accommodation.

Victoria Derbyshire exposed this whole national scandal. Families have saved all their lives, paid their taxes, and at a point when they need help from the NHS, it is not available to them.  The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised 2018) makes it very clear on page 51, paragraph 180 that “NHS care is free at the point of delivery.  The funding provided by CCGs in NHS Continuing Healthcare packages should be sufficient to meet the needs identified in the care plan.  Therefore it is not permissible for individuals to be asked to make any payments towards meeting their assessed needs”. Yet, most of the population don’t even know NHS Continuing Healthcare exists!

Put plainly, if you have a primary healthcare need, then all your care needs should be met in full by the NHS. You either qualify for CHC or you don’t.

Victoria Derbyshire’s programme provided powerful and emotional testimonies, and exclusive interviews from families, who have had to battle over many years to get CHC for their relative.  The families interviewed gave heart-rending accounts of their personal struggle, over many years, whilst fighting the NHS to get CHC funding for their relative – funding which should have been granted at the outset of the assessment process.

We see families at the point of exhaustion and frustration, turned into emotional wrecks, who have had to endure a lengthy CHC assessment processes, with some being rejected for CHC on multiple occasions, and being forced to appeal to fight for their lawful entitlement to CHC funding.

Quite rightly, Victoria Derbyshire described this battle as a “national scandal” – because that is exactly what it is, as many of our followers and contributors know only too well from their own personal experiences of seeking CHC.

Andrew Farley, of Farley Dwek Solicitors, was also interviewed exclusively for this BBC news programme, and explicitly said that there were thousands of people who had been forced to sell the home to pay for care unnecessarily, and highlighted the problem that people simply aren’t aware of CHC funding. And those who are, have difficulty in navigating the complexities of the system.  Andrew said, “It is a national scandal that people are not being signposted to this funding.”

Care To Be Different’s primary objective is to raise the public profile of the availability of NHS Continuing Healthcare Funding and provide free information and resources for people starting out on their journey seeking eligibility for NHS Continuing Healthcare Funding, or for those who are already stuck in the process and need assistance and guidance every step of the way.  Care To Be Different are grateful to our contributors and Facebook users who have provided some wonderful feedback over the years, complimenting our website on its invaluable free information, which we estimate has saved families literally millions of pounds in care fees, and given them the support and encouragement to pursue their claims for NHS Continuing Healthcare.

Some of the families featured in Victoria Derbyshire’s programme are previous enquirers or contributors to our website.  Care to be Different were pleased to help Suzanne Morrison and her husband, in their pursuit of NHS Continuing Healthcare Funding for their son John, who suffers from cerebral palsy and has no use of his limbs.  Suzanne gave a very moving account of their struggle to get CHC for John, which was initially granted, but then withdrawn in 2009.  Following a 10 year dispute, we are delighted to hear that she has been successful in getting CHC reinstated for John’s healthcare needs.  A great result, after years of anguish, stress and heartache battling the NHS! His family are now seeking to reclaim £300,000 for wrongly charged fees paid for John’s care needs.

Suzanne Morrison told Victoria Derbyshire’s reporter, Noel Phillips: “This is the dark side of the NHS.  This is the hidden side.  This is the disabled side, the dementia side, the Alzheimer’s side…..”.

Suzanne Morrison following Care To Be Different on our Facebook page posted the following, “Just to let my fellow survivors who have been through it and have come out with a positive yes they are eligible, and people are going through the process and those about to start the process.  What started yesterday and back when Angela Sherman wrote our bible and set up this site, which is now managed by professionals who know their stuff.  This is a site where we congregate for information, form friendships, swap our stories and we are starting to become quite a group who can challenge those who should be frankly be doing better….”.  Thank you, Suzanne!

The TV programme also featured Admiral Phillip Mathias (retired) and his personal story about his 2 year battle to seek retrospective CHC funding for his dear mother.  Mr Mathias said “At a national level, in my view, this is probably the biggest financial scandal in the history of the NHS”.  You can read more of Admiral Mathias’s story and his duel with Wiltshire CCG in a recent article we featured on 1st May 2019, ‘Fighting for NHS Funding for my mother was a complex as my work on the nuclear deterrent’.

We, and other professionals like Farley Dwek Solicitors, have previously described CHC funding as the “NHS best kept secret”hidden funding which is available to many thousands, who either just don’t know about it, or else are being wrongly refused this vital funding.

The BBC and Victoria Derbyshire’s programme have now boldly uncovered the NHS’s ‘secret’ and we hope that Clinical Commissioning Groups throughout the UK will change their attitude, create more consistent methods of assessment for their assessors, and instruct them to recommend funding where it is blatantly obvious that it should be granted. CCGs should not arbitrarily overturn decisions to make cost savings, when their appointed assessors have recommended that CHC funding should be awarded.

It is stated that the NHS have to make £855m worth of efficiency savings in relation to CHC by 2021. The only way of achieving this, is to reduce packages of care and/or to withdraw CHC funding from those who continue to be entitled to it. Indeed, many of the families we hear from, have relatives who have been CHC funded for several years, but are now being reassessed and seeing their funding withdrawn – despite the fact that they continue to deteriorate, or there has been no improvement in their condition, or reduction in the care required. These scenarios will inevitably increase the volume of appeals being pursued. The problem is further compounded by arbitrary caps on care fees which are imposed by various CCGs, thereby requiring families top-up the shortfall between what is funded by the CCG and what is being charged by the care provider. Top-up fees are illegal.

To deny families, such as John Morrison and Vicky Keiller, this basic right to funding as set out in the NHS National Framework, and to downgrade scores deliberately (or ‘rationing’), purely for financial reasons, is frankly appalling. Care To Be Different continues to campaign to help families and bring this matter to the public domain to hold the NHS to task.

Care to be Different are here to support you all the way, and you can access heaps of information on our website for free.  Use the search bar on our Home Page to help find topics of particular interest, or call us on 0161 979 0430.

Share your thoughts on your experiences of NHS rationing and Victoria Derbyshire’s programme below.


  1. Andrea gray 11 months ago

    Me and my dad are realising our fight , for my mum has actually nothing to do with my Mum’s health and welfare or her health and nursing care needs . We are actually fighting the NHS, CCG and the nursing home , about money , and who is going to pay ? The CCG say she does not have primary health care needs, the social services agree , and the nursing home say , they can not allow her to stay at her nursing home , unless someone pays for her care,. the whole system is flawed and in my opinion , and truth , no one who claims to care for these elderly and vulnerable people , should ever be allowed to state anywhere , they care for people , they only care about money .

    • Stephen Reeve 11 months ago

      You are so right … and in my mother’s home if you run out of money and have to rely on support from the local authority you will be asked to leave because they only accept private residents !!!

    • Diane 7 months ago

      Yes they also try to con you out of the funded nursing payments unless you complain to the Ombudsman. You are right they only care about money. Then they charge you extra to pay for people who can’t afford the fees. Despicable liars and cheats.

  2. Diane Walker 11 months ago

    I had a DST meeting on Thursday regarding my mum and funding. She is nearly 98, has mixed Alzheimers/Dementia and also had a stroke 2 years ago. At the best interests meeting when she was in hospital we were told she had to go into a nursing home on discharge.. We had to sell her council house to fund the home as we were told she was only entitled to the nursing payment of around £165 per week. Mum has been in the nursing home for 2 years 3 months. She is now bedbound, on pureed food which she hardly eats (she has to be fed). She cannot communicate with the nursing staff, except for the odd day when she is awake but has hardly any voice. She is totally immobile, doubly incontinent and has lost about 21 kilos since leaving hospital. Her sternum sticks out like a knife in her upper abdomen because she is so thin. Her weight is 42 kilos. Mum has bilateral macular degeneration and has had operations for bilateral cataracts which did not work, so she can hardly see the TV in her room. Mum is on end of life care and has had all her meds stopped. The 2 nurses in the meeting tried to downgrade the domains but mum had one domain which was graded as severe. I was told that although her case would be referred to the panel (who of course have never seen her!) they would recommend that mum is not entitled to Continuing Healthcare funding! Of course the nursing home are not particularly supportive because they get more money by mum being a self funder! I am disgusted after mum had worked until her late 70’s paying into the system. I could go on but I just get too upset by it all.

    • Care to be Different 11 months ago

      Hi Diane – thanks for sharing this. It sounds wrong on so many levels. Do call us if you would like to chat it through with someone to see if we can help. 0161 979 0430 Kind regards

  3. Alison Ledgerwood 11 months ago

    I’m afraid I had to give up with my mother’s case. My father and I continued to fight after she died but I think the stress and strain contributed to my father’s illness and subsequent death. Wiltshire CCG continually flouted the law and said that “we do things our way”. We went through various appeals but to no avail. I simply do not have the energy to carry on now that both my parents are dead, especially as I live in London. What is the point of having a legal framework if nobody adheres to it?

    • Stephen Reeve 11 months ago

      Southend CCG also ‘do things our way’ and couldn’t care less what you think.
      I suspect the IRP will be the same.
      Sorry for what you have gone through.
      I’m still fighting ‘cos mum is still living and I’m still paying.

      Take care of yourself.

      • SAL 11 months ago

        I have also been caught up in this process for over 5 years .
        West Suffolk CCG also disregard the National Framework and they seem think it is perfectly acceptable to “do it their own way ” .
        IRP was not independent by any means . The panel members receive payment from the NHS and in our case the Chair also emailed the CCG prior to the meeting to let them know what she would be asking them about !
        She obviously pre warned them so that they could get all of their ducks sitting neatly in rows before the meeting . Hardly fair.
        She of course did not contact me to let me know what she would be asking the family , so how can can that be deemed as independent ?
        Ombudsman was also of no help whatsoever .
        I am still in dispute with the CCG directly and intend to continue to argue our case on behalf of my late mother who did not deserve this appalling treatment by a Health service who were supposed to look after her from cradle to grave . She paid into the system for many years and has been very badly let down, as she met their criteria for CHC funding without any doubt .
        If it was West Suffolk CCG’s intention to assess my mother fairly , they have failed miserably however if it was their intention to deny her the funding by any means , they should be congratulated on a job very well done !!!!
        It all continues to be a national disgrace however exposure of this scandal is rapidly gaining momentum and the truth will eventually come out .

    • Dawn Harrison 11 months ago

      Alison, I feel your pain. I am currently doing battle with Wilts CCG and am experiencing exactly the same issues. I like to think that I am a reasonably strong, capable individual, but this ‘system’ (and I use the term loosely) has beaten me. I’ve decided to ask Farley Dwek for help with the IRP as I feel it’s time to bring in the ‘big guns’ and have some legal backing.

  4. Sarah 11 months ago

    Hello, I just wanted to post a thank you comment for the advice that this website, yourself and your readers have given to me over the last (almost) year.
    My father sadly passed away a month ago and so finally his and our nightmare of this awful social care environment is over. Until you are in it you have no idea of just how bad it is. Nothing was ever done as per ‘the law’ . Very few people did their job in this process. We always had to keep following up, asking, complaining. Lies and deception are rampant. With the exception of the new GP I moved my father to and the palliative care nurses. They were all wonderful. The nursing within the home not good, together with all the rest of them. I have 2 bankers boxes full of documentation of issues, complaints, enquiries….. why on earth does it have to be like this? Why can people not do their job properly? As I have posted before, our funding was running out (we paid nearly 40k of our own money) we were faced with a situation of a social worker sitting there asking my father question after question, my father unresponsive, bowed over in pain.
    Can you not see that he is dying I asked? I have limited experience of elderly care but surely you have seen someone else dying before ?
    But still they wanted to book in 3 other care home managers to assess him and expressed surprise, shock ….even horror when I said fine, they can all come on the same day, same time and we will do one assessment when they can all ask their questions and then they can all submit their bids. Why not?
    Well they said they may not all be available. Ah but I have to be available for everyone of them and I too have a job and commitments and my father has to endure this so one appointment it will be, far enough forward that all three can make it to the cattle auction and then we will see.

    As it turned out I could see he was in such severe pain that weekend that I blocked them all and sure enough the following week he died.

    This has changed my entire view of this country, the NHS, social services. I am filled with disgust.

    But I am also filled with thanks and gratitude for this site and the work that you do and the people here who help others with advice. Also age concern. They were great, will fund raise for them.
    Just wanted to say thanks everyone. Keep fighting.

    • Care to be Different 11 months ago

      Hi Sarah – Many thanks for your kind words. We are so pleased that you have been assisted by the site which his exactly what it is intended to do.If you would like to discuss your own situation with us then please do not hesitate to get in touch. Kind regards

    • Diane 11 months ago

      I second that.

  5. Mary K 11 months ago

    Had meeting with mums social worker last week – she has overturned a hospital clinicians assessment that said mum should be considered for CHC on leaving hospital.
    This SW is insistent that although mum might possibly have primary health needs, the LA can “accommodate them” if mum goes into a care home, so mum can’t be considered for a full assessment for CHC.
    I know the social worker shouldn’t be taking on primary health needs under the LA umbrella but I cant get past her at all. I am quite a strong person but she has completely stone walled me and wouldn’t listen at all to my query about her definition of primary health needs and primary social needs. I even said it was illegal for the LA to take on primary health needs – she actually laughed at me!
    I have just received a care plan from her and she has written that mum isn’t a candidate for CHC. That mums needs can be easily met by a heart nurse, district nurse, GP and hospital doctor.
    She says she’s an expert in the field of CHC and has been doing assessments for six years and that I am completely wrong in my beliefs.
    My mum has NO social needs – they are all heath related and she is under two hospitals for them. They are many and complex and can be managed – but only by health professionals.
    I’ve had to put in a formal complaint to the NHS.
    Meanwhile we are helping to fund mum. She’s 93 and lived completely independently until she was 91. She worked all of her life.

    • Care to be Different 11 months ago

      Hi Mary – this is awful and needs to be challenged. Please do get in touch with us and we will see if we are able to offer you some support with it. 0161 979 0430 Kind regards

  6. Diane Ludkin 11 months ago

    My 92 year old Father has been in a Care Home with Vascular Dementia for 2 years and 3 months where he has been Self Funded. I have Court of Protection for his Finances and to date we have paid the Care Home in excess of £100,00. We have recently had a meeting for NHS Continuing Care as his Savings have now depleted and the Care Home asked the Family to find another Care Home as they would not waiver the ‘Top Up’ fees along with the Social Care provided by the Council. Over the last month the Family have viewed many Care Homes which has been very stressful. We have finally been given funding for ‘NHS Nursing’ of £165.00 per week. The present Care Home have now decided to waiver the ‘Top up’ so my Father can stay. My question would be what happens when the Care Homes Fees are increased or they withdraw NHS funding? The only thankful thing for the Family is that my Father is unaware & incapable of understanding the amount of money he has had to pay since staying in this Care Home.

    • Care to be Different 11 months ago

      Hi Diane – just because they have granted FNC doesn’t necessarily mean that the decision not to grant full funding is accurate and you have the right to challenge this if there are reasonable grounds on which to do so. Please do get in touch if you would like to discuss it further. Kind regards

  7. Andrea webster 11 months ago

    Jackie ! we have also been told my mum is no longer eligible for full funding , which she had since she went into care, she had complex needs she is at the end of her life now, bedridden can not move , she can not do anything for herself, she can not talk, and they say her needs are social , not nursing . its appalling how the wonderful elderly people are being treated , apparently dementia/ alzheimer’s is age related, it is a chronic neurodegenerative disease ! and should be treated as such. We are fighting my mums case , we have got a solicitor involved, and i wont stop fighting .

  8. Diane Andrews 11 months ago

    Care or be Different have provided a wonderful platform from which to highlight the problems that people are facing. I fought my case with the help of the Ombudsman against the Care Home taking the NHS funded nursing payments and not reflecting this in their exorbitant fees. No mention in their contract.

    My father should have been assessed for NHS continuing healthcare first and yet everyone implied he wouldn’t get it without an assessment DST etc. The National framework says it should be assessed BEFORE NHS Funded nursing payments. All completely dishonest and without informing the family. Within a month his health deteriorated and again everyone pretended not to know about NHS Continuing Heathcare which we applied for ourselves and had to then fast track the assessment as he was nearing end of life. It’s disgusting and immoral but to fight it through a solicitor is more than we could afford so in the end we did it ourselves and did get the continuinuing healthcare fast tracked.

    However Social Services did nothing to help our cause, in fact they ignored our plight when in fact they should have referred us for funding. This costs them nothing. Again disgusting. The ombudsman will not take social services to task as apparently I have waited too long to complain, a legal clause, not made clear to us at the time even after complaining. When it suits them they are soon all over the rights and wrongs because they can afford legal advice. The next time this battle occurs will be my family fighting my cause so I hope someone eventually sorts it out.

    Victoria Derbyshire and yourselves have done your bit but I am afraid we are entering difficult times. Who knows what’s going to happen in this country.

  9. Stephen Reeve 11 months ago

    The problem with the funding of dementia care is that the NHS have in effect changed / strengthened their interpretation of PHN so that the individual with classic symptoms of advanced dementia is no longer eligible. That saves the NHS an awful lot of money. The NHS / CCG have created an identikit picture of someone who they decree is ineligible (ie they have the classic symptoms) and they compare your loved one with that. If they are similar to the identikit picture – and most folks with advanced dementia are very similar – then they are ineligible. Mum’s funding was withdrawn because she was no longer aggressive or falling (now in a wheelchair) and replaced with FNC. We lost the local appeal (not carried out according to NFD strictures). IRP follows in August – it’s a game that is costing me money I cannot afford.

    • Care to be Different 11 months ago

      Hi Stephen – sadly this is typical. Do get in touch if you would like to chat it through with us. 0161 979 0430 Kind regards

  10. Susan Harrand 11 months ago

    In my opinion you have to be dying to get CHC funding and if you do not die in six months they reassess you. They are like bulldozers. The money poured into the NHS in my opinion is used to get more senior levels. I feel they get a bonus for all people they keep off the register. I know this is an exaggeration but it has a grain of truth. It is a national disgrace. They have you at an emotional time and take full advantage of it. If that Admiral had to fight what hope have the rest of us

    • Karen 7 months ago

      You don’t even get it when you’re dying! My 86 year old mum was diagnosed with motor neurone disease and died six and a half months later. We were told that all her needs were social care needs despite two separate health care teams applying for her to be fast tracked. She died almost a year ago and we are still awaiting an appeal.

  11. Andrea Gray 11 months ago

    Fight Jackie !! , The more families fight , The NHS will have to pay attention , our elderly parents were promised by the NHS their health care needs will be free from birth till death ,

  12. Jackie Davies 12 months ago

    What happens when your relative is already on CHC for years then they take it off them even though they clearly still need it ..? That’s what happened our mum .

    • Care to be Different 12 months ago

      Hi Jackie – Appeal it! Contact us if you would like some help with this or have a look at all of the free information on the website. Kind regards

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