Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

We, at Care to Be Different, felt we had to share with you some worrying and startling first-hand insights from Nurse ‘Andrea’ (not her real name), a nurse advocate with a wealth of experience in all aspects of CHC assessments and appeals. She contacted us to let us know just what kind of antics she’s experienced with NHS Continuing Healthcare assessments, having previously worked as an NHS assessor and Lead Nurse, chaired Local Resolution Panels and sat on Independent Review Panels.

Andrea has since left the NHS, and for many years, has worked independently, providing professional assessments and advice to individuals, companies and care homes alike, to help them through the difficult and flawed CHC assessment process.

In 2007, the National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care was introduced. This laid out clearer guidelines and provided a Decision Support Tool (DST) to aid professionals make a decision in respect of eligibility for NHS Continuing Healthcare Funding (known colloquially as ‘CHC’). The National Framework was modified again in 2009 and 2012, and more recently in again in October 2018. The intention of these updates was for the CHC decision-making process to be more robust, fairer and consistent across the country.

Andrea: “After leaving the NHS and beginning to work independently, it was becoming very clear that there was a great deal of inconsistency across the UK as to who got CHC Funding and who missed out. This was because the National Framework was being interpreted in various ways by different CCGs across the country.”  (This is often referred to as the ‘postcode lottery’.)

I have always argued that, whether an individual is born with a disability or health needs, or they has developed along the way, it should be the duty of those professionals involved in the care, to provide the family and the individual with as much support and direction as possible.

5th July 1948 – brought about the birth of the NHS and free Healthcare for all, from the ‘cradle to the grave’.

I feel from what I have witnessed that the Government and the NHS are still a long way from providing this.”

Inconsistencies galore!

Andrea says:

No:1 “If I broke my leg and was taken to hospital, I would be treated at no cost and would be kept there, free of charge, with all meals provided, until I was considered fit to be discharged home. However, if I was discharged into a care facility instead, I would have to pay for my accommodation, food and essentials – which could amount to thousands of pounds. Having paid taxes and National Insurance contributions all my life, why should I be penalised for being placed in a facility which is not my home, or else, having to pay for carers to come and deliver my care at my home?”

No:2  “I’ve witnessed CHC assessments whereby an individual who’s had a debilitating stroke and could no longer manage any of their own care, became unable to communicate, was incontinent of urine and faeces, unable to meet their nutritional needs, care for their own skin integrity, or able to identify or take their own medication – was assessed by the CCG as having no nursing needs. Yet, conversely, in  another part of the country a CCG assessed an individual who was fully mobile, could make their own decisions, could choose from a written menu, assisted in their own care but required help to administer their medication (because they would forget whether they had taken it), was deemed to have nursing needs.”

No:3  “I have experience of professionals who have sent individuals back to their care facilities registered as a ‘residential only’ ie without further assessment or further consideration of their entitlement to either NHS-funded Nursing Care (FNC) or NHS Continuing Healthcare (CHC) when they have obvious ‘high’ levels of need. As most individuals do not understand the process, they don’t feel confident in questioning these decisions.”

No:4  “I have also read a comment made recently by a professional saying: If she [the patient] was in a care home she would be funded, but not while she’s at home.”

Statements like this are very worrying indeed, and show a lack of training and a fundamental misunderstanding, which goes to the very core of the National Framework!”

Andrea comments: “This in itself goes against the National Framework guidelines which very clearly state that NHS continuing Healthcare Funding can be delivered in any environment (ie whether in your own home, care or nursing home or other care facility).

No:5  “I have visited numerous care facilities to carry out eligibility assessments for CHC Funding, and one of the most common questions that staff ask is: ‘Why do they [the family] want an assessment for Continuing Healthcare?’ Some staff just don’t understand and think it’s because they want to move their mum or dad out of the care home.”

Again, this common scenario demonstrates that some care facilities have a basic misunderstanding of what NHS Continuing Healthcare is all about.

Andrea comments: “If an individual is already in a care facility receiving appropriate care, but then meets the eligibility criteria for NHS Continuing Healthcare Funding, it does not necessarily mean changing care facility. It merely means that money for funding for that individual’s care is now being paid for by the NHS rather than how it was previously being funded.  An individual should not receive any different care (less or more) just because the method of funding has changed.

No:6  “Care home managers have openly told me that, individuals who pay for their care privately (i.e ‘self-funding’) are being charged a higher rate for their stay at the care facility than those with NHS or local authority funding.”

NHS (and local authority) ‘bed’ rates generally tend to be far lower than the actual cost of keeping a resident in a care home. And so, whilst knowing that the NHS will meet the cost of the individual’s assessed CHC needs is helpful for budgeting and cash flow, it can still leave a significant shortfall in the actual cost of keeping that individual in the care home environment.

“Some care homes therefore do not find it in their best interests for an individual to be CHC Funded because of the lower rates paid. These self–funding individuals are effectively boosting the care home’s finances and subsidising their overheads and the care of others in the home.”


It’s shocking that there is such a poor understanding of the National Framework and such inconsistencies in its application. Nurse Andrea feels that these consistencies reflect the complex nature of NHS National Framework which desperately needs simplifying to become far more prescriptive.

However, we, at Care to Be Different, are not shocked by Nurse Andrea’s findings, but she does certainly help to highlight what we see time and time again happening up and down the country.

The conclusion we can draw from this is that you must always challenge decisions made by your Clinical Commissioning Group, and don’t ever assume that they are right 100% of the time. Fight for your relative’s rights!

Read more of Nurse Andrea’s insights in Part 2, coming soon…


  1. Sharon Hopkins 9 months ago

    This is a national scandal which I’m quite sure the new government will not deal with as it has existed for years and they have done nothing so far. Very sad times. What on earth can we do about this?????

  2. Carol Langstaff 9 months ago

    My Mum is suffering with dementia and is on permanent bed rest, is unable to move and her cognitive skills are classed as severe. Two years ago, in a care home, she developed a grade 4 pressure sore and was awarded nursing care. This has now been withdrawn as we have been told that the sore has now healed. Her dementia and needs have worsened over these two years but the nursing care has been withdrawn and Mum is now self funding.

  3. Chris-G 9 months ago

    Regarding the differing fees. I once watched and heard the to ing and fro ing as a council care manager, the CHC nurse and the care home manager discussed a resident and their finances. The nursing home manager shouted to her receptionist to check house values in a given Street on a well known website.
    When I eventually took my family member back to his room the relevant resident was (via family), undergoing a CHC assessment.
    It’s bl@@dy scandalous that there definitely seemed to be a bit of quid pro quo going on. Almost like they were selecting in advance, and on the basis of wealth, which organisation was going to accept the expense or perhaps the resident became a self funder.

  4. Chris-G 9 months ago

    Had a relative getting CHC for unrecoverable head injury. The common care needs etc. After a subsequent above the knee leg amputation he was reviewed and found not eligible anymore. By a lone NHS assessor. So illegal right there.
    Had his other leg off below the knee a year or so later. They failed to review. Had another leg amputation to correct poor healing. Again failed to review. It exploded when stitches came out in the nursing home.
    Needed it amputating again. Failed to review.
    Developed gall bladder cancer and was palliative care. Failed to review. Had surgery to drain liver.
    In hospital in his confusion (urine bags always annoyed him), he pulled out the hooked surgically implanted tube through his liver from front to back and died 3 days later.
    All the while we were being poorly dealt with by the CCG directly because their lackeys the CSU had refused all communications including appeals because I had complained about several individuals. Because of the failures to review.
    The council chased recharge payments and for almost 6 years and still have not taken matters to court.
    They know that they permitted health care beyond their remit to provide. They know they’ll lose.

  5. Vic 9 months ago

    My question is this for The Health Minister why is there such a widespread differences in ccgs granting chc a densely populated area of London is 3rd lowest ( meanest) for granting chc funding out of all as compared with other areas? You would expect population proportional representation results.The answer is worrying . A National Disgrace. Ccgs are Dishonest, I can prove it.

  6. Jenny 10 months ago

    Isn’t that what The House of Commons has become?

  7. Ian McClymont 10 months ago

    Is point 6 fact , I wondered why the care home manager is reluctant to ask for CHC funding and his social worker made no comment after first CHC assessment which my dad did not qualify.

    He now has been noted as vascular dementia patient, schizophrenia is very evident and his diabetes has gone out of control ie hypos,

    Therefore from a profit and loss point of view the care home higher management/accounting department need his £920 per week rather than the funding they get paid if a CHC is granted at a reduced rate to the council/NHS.

    This needs highlighting if true because it’s a bigger scandal than people realise.

    • Anne 10 months ago

      Ian, yes it is fact. Through FOI requests I established that my mother as a self funder was paying 65% more than the LA rate. I was aware this was the case but wanted actual proof. My mother has recently had a positive eligibility decision for CHC and I know that the NHS again are paying are far lower rate than she was as a self funder. It simply isn’t in the Nursing homes interests to support the family through the CHC process……. I found that I really had to battle to have sight of care notes to gather evidence needed for the DST. Precious time I could have been spending just sat with Mum wasted chasing staff……

      • Michelle Wetherall 10 months ago

        Anne/Ian, it’s a national scandal. I have sympathy for everyone embroiled in this nightmare. Precious time that should be spent with loved ones is lost because families are faced with endless paperwork, appeals and meetings to try and prove that their relative should be funded by the NHS. For us this nightmare is finally coming to an end after I successfully appealed at IRP with NHS England. We are set to recover my late father’s fees. It’s ironic that had my father’s funding not be withdrawn and CHC had continued to fund him, they would not be paying back the inflated fees that my father had to pay as a self funder. It is true that those self funding are paying more to “cover” the lower rate paid by the LA. I would so like to know the full cost to the NHS of my late father’s case. The cost of a 3 year battle with endless appeals, paperwork and administrative costs would undoubtedly run into thousands and thousands. I guess the cynic in me says that I am just one of a handful of determined individuals who battled and won the war and that just one or two losses to CHC/CCG’s is negligible.
        The cost to families in terms of the stress and sleepless nights worrying can never be accounted for!
        It has been a huge strain on me personally. My only wish was my dear dad was still alive and I could have shared the “victory” with him! Not that he would have understood suffering from PD & Dementia, but I know he would have been so proud that I had the tenacity to “fight on” against the injustice of this unfit process.

    • Diane 9 months ago

      Yes you are absolutely correct in that assumption

  8. Ian McClymont 10 months ago

    Point number 3 is very relevant to my experience this weekend. My father is in EMI nursing, vascular dementia and a diabetic.He showed aggressive behaviour within the care home last week on 3 occasions and fractured a ladies hip .On Friday the care wanted to admit him to hospital to get re assessed as they felt ther may be other issues as well.
    After 10 hours in A & E on a trolley waiting the junior doctor felt an observation period was reasonable to monitor and adjust medicines etc.
    Once we left trolley corridor the social care worker representative for Whiston Hospital approached and stated after a 2 minute chat because beds were at a premium and his calmness was enough evidence to send him straight back to his care home.I refused on the grounds that he had yet to be observed by the professional people who make the defining decisions.
    I offered to meet again 5 hours later as I had been in A&E for 13 hours without food or sleep.Within that period my dad showed the aggressive behaviours and suddenly a medical bed was granted.
    He is currently being monitored on the ward and will be again tomorrow.

  9. teresa uphill 10 months ago

    We are going to an appeal meeting on the 2nd December . Mum has been fully funding herself in a nursing home for over 2years now ..she has had numerous TIA,s .the last one she was discharged back to the home onfast track chc fundingon palliative care and not expected to last long ….After 12 weeks she was reassessed and funding was withdrawn . She is incontinent both ways , cannot speak , walk , feedherself , she has pureed food and thickened drink, she has to be hoisted . She has medication to calm her as she chews everything even the padding on her bed , she has no idea who we are now . I am dreading this meeting as we know what we are going into as we have been through four times and always been turned down except for the small FNC fund played for from the dale of her small 2 bed council house, she had no savings We pay £1500 per week for her care so not much left now …..I Just hope they dont run rings around us with their jargon was very interesting to read Nurse Andria’s two scenarios of who got CHC funding . My mum fits into the second one ..very sick, frail end of life 86 year old lady who is deteriorating . Care home staff notes a very sporadic even though we keep asking them to fill them in properly ..last one read mum made cupcakes and had her hair done ..we were there all day with her and no way was this true . She is unable to even hold any cutlery or cups so baffled. Care home owner only wants self funders even though he does except people the council pay for but as he doesn’t want empty rooms, we pay double what they pay

    • Care to be Different 10 months ago

      Hi Teresa – good luck today. Let us know if things don’t go your way – we may be able to assist you. 0161 979 0430 Kind regards

  10. mark marsay 10 months ago

    hardly shocking to those of us who have encuntered the system – national disgrace is what it is and all politicians should hang ther heads in shame that they have all allowed it to continue – a month as an in patient in a sub standard dementia care home would soon change their minds me thinks!

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