9 more untruths about NHS Continuing Healthcare – Part 2

9 more untruths about NHS Continuing Healthcare – Part 2

Misinformation about NHS Continuing Healthcare

9 more untruths about NHS Continuing Healthcare funding

In part 1 of this article we looked at 17 untruths families are repeatedly told about NHS Continuing Healthcare funding – and the devastating results of flawed funding assessments and decisions.

If you’re currently going though the NHS Continuing Healthcare assessment process for a relative, read on. We’ve listed here 9 more typical untruths families are told about NHS Continuing Healthcare funding.

They’ll help you recognise and challenge false information you may be given.

9 more untruths about NHS Continuing Healthcare:

1. “You are not allowed to see any of the assessment notes.”

If it’s you yourself who is being assessed, then you are, of course, entitled to see the assessment notes and the decision making rationale for the funding decision. If you are acting as your relative’s representative, you are also entitled to see the notes and decision-making rationale. Without this, you are being denied the ability to properly appeal any decision that denies funding. So insist on being sent a copy.

2. “You are not allowed to attend assessment meetings.”

Many families are told this, and it’s not correct. Indeed, the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care makes it very clear that families should be fully involved in the process and that they should have the opportunity to input.

3. “You are not allowed to speak during assessment meetings.”

This is complete nonsense. You have every right to fight your relative’s corner and make all the verbal and written points you want to make to support their case.

Points 1-3 above: See National Framework pages 53-54 PG4, which makes it very clear how important it is that the person being assessed and/or their representative is fully involved and informed – and directly involved in the assessment and decision making process.

4. “You are not allowed to take anyone with you to assessments.”

Again, this is nonsense. You can take someone with you to support you – even if you are already representing your relative yourself. You can take more than one person if you want to. It’s courteous to let the assessors know who will be coming, but don’t let them convince you that you can’t bring anyone.

5. “If you take a solicitor with you, the solicitor is not allowed to speak.”

Again, this is not true. See the National Framework page 61, paragraph 10.2:

“If the individual chooses to have a legally qualified person to act as their advocate, that person would be acting with the same status as any other advocate nominated by the individual concerned.”

The solicitor won’t be able to debate broader legal questions, but they have exactly the same right as any other kind of representative to speak and ask questions about the individual assessment process taking place.

6. “Local authorities/councils never get involved in the Continuing Healthcare process.”

Local authorities/councils MUST be involved in the Continuing Healthcare process! How else will they be able to decide if a person’s care is beyond their legal remit?

7. “Local authorities/councils never get involved in the Continuing Healthcare process if a person has savings.”

Nonsense. A person’s money/assets have absolutely nothing to do with the Continuing Healthcare process. It is about care needs ONLY – and the same answer as point 6. above also applies.

8. “NHS Continuing Healthcare funding only covers 2 hrs care a day.”

We frequently hear of families being told that Continuing Healthcare is capped. It is not. There are many instances where people receiving care at home are told they can only have ‘x’ number of visits per day. Again, Continuing Healthcare is not capped and it must cover ALL assessed care needs, whatever those needs are – including social care needs. See National Framework pages 14-15, paragraph 33:

“Where an individual …is therefore eligible for NHS continuing healthcare, the NHS is responsible for providing all of that individual’s assessed health and social care needs…”

9. “The Fast Track process only applies if a person has a prognosis of less than three months.”

Not true. The Fast Track process applies if a person is at end of life OR in a period of rapid decline. The period of rapid decline does not have to be end of life, and there does not have to be an exact prognosis about how many days or weeks a person may or may not have left to live.

If you haven’t read the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, it’s a very good idea to familiarise yourself with it, as it will give you extra ammunition for challenging incorrect funding decisions and fighting your relative’s corner during assessment meetings.

It’s also vital that you read the Checklist and the Decision Support Tool documents.

Read part 1 of this article: 17 untruths about NHS Continuing Healthcare funding

What are the NHS Continuing Healthcare assessment guidelines?

What’s your experience in NHS Continuing Healthcare assessment meetings?


  1. Rachel Rouillard 3 years ago

    I have made the difficult decision(after a safeguarding process and several ‘professionals’ telling me my mam needs round the clock care), to put my mam into a nursing home. I live in [one area] and she lives [in a different area] in a home she owns. I am looking for a home in my area for her, and have been told her own CCG will pay my local authority rate for her care, which is £697 a week, yet one of the worse homes I have viewed has a CHC rate of £1300 a week. My preferred home, currently with no beds, assess rates on a case by case basis. I fear I will face a massive fight to get her into a suitable home that will maintain / improve her quality of life. Some I wouldn’t wish on my worst enemy. I am trying to get clarification on what they will actually fund but it is like talking to a brick wall, and somehow I come out looking like the stupid one. They also have said none of her specialist equipment can move with her (she has MS) because it was paid for by CHC where she lives.

  2. Louise 3 years ago

    Thank you very much for providing accurate advice and information on this website. My Dad was awarded NHS Continuing Healthcare (CHC) two years ago and it has been confirmed after reviews ever since (he has had Parkinson’s for 27 years now). However, after his most recent review, the CHC has decided to organise another Decision Support Tool (DST) again (extremely stressful for my mother and father as you can imagine). They believe that my father’s needs have changed. However, we have not been informed thus far how they believe my father’s needs have changed. We have never received any written notes about my father’s needs and how they fit the criteria or how they have changed at present. They should at least be sending us the annotated notes ahead of the DST to be held in two weeks’ time, but can we reasonably request that they send us a copy of all the notes? If they take away Dad’s funding, he will have to be moved and he is likely to die, this is not being dramatic, they tried to move him once before and he declined so dramatically that he has been receiving palliative care ever since. Thanks so much for your answer. Best regards, Louise

    • Poppet 3 years ago

      I can’t find a reply to your comment. Did you get one? The same is happening to us and we need answers to the same questions as you did here. How did your Decision Support Tool go?

  3. Shena Lewington 3 years ago

    Another untruth that families may encounter is that to be the patient’s representative, they must have power of attorney for health and well-being. This is not specified in the Framework. It is certainly a helpful thing to have – though note that even when it’s in place, medical and care staff may take no notice of it ….. If you have it, and it has been activated, it’s worth having it recorded on the patient’s notes, in their care documents, in the social worker’s files, duplicate copies in your car in case of having to produce the evidence at A&E etc etc.

    • Chris-G 3 years ago

      Shena, Regardless of POA: If you are being expected to provide financial data to the council etc. then it is also worth applying to the Department for Work and Pensions, so that they formally allow you to act on pension and benefit matters in the persons best interests. That document will shut them all up as they would find it difficult to extract financial data from you with any legal basis for you providing it.

  4. Angela Sherman 4 years ago

    Yes, assessors are required to look at the ‘near future’ when assessing needs. See the National Framework page 16 paragraph 38: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213137/National-Framework-for-NHS-CHC-NHS-FNC-Nov-2012.pdf

  5. Jane Cutting 4 years ago

    I attended a Multidisciplinary Team (MDT) meeting yesterday to help support my Mum who was representing my Gran (95). We were very well prepared but ultimately unsuccessful. Gran’s primary health needs arise from dementia and cerebrovascular disease (alongside breathing difficulties caused by a large hiatus hernia) she is subject to a DOLS. Prior to her hospital admission she had become very unsafe at home. We have found out retrospectively that three Checklist’s have been partially completed over the last year (there was a further hospital admission and a very recent one undertaken at the Care Home immediately after our complaint was lodged but again, my Mum not present. On examination I have determined massive maladministration in that my Mum wasn’t even informed they were happening never mind informed of the outcome or implications for funding, or means to appeal. Neither of the first two Checklists had all of the domains completed, dates were all over the place and one wasn’t signed or any rationale for decision given. However both advised progression to the Decision Support Tool (DST) which didn’t happen.
    We only began to query when Mum received a backdated invoice for care fees going back to the point of first discharge from hospital and into a Care Home. A MDT meeting was rapidly (two days notice, extended to a week when I requested) offered, probably as a means of beginning to address the formal complaint we have lodged with the NHS Trust and the local Council.
    We will appeal the MDT decision on the following grounds at least;
    1) The assessor was adamant to begin with that Gran’s behaviour should be a ‘no needs’ as she was no longer able to wander or leave the gas on etc. I advised that well managed needs are still needs and that she should be assessed as if back at home, in which case her needs would be at least ‘severe’ if not ‘priority’. The assessor insisted to begin with that it could only be ‘as she is now’ and that behaviour was only about things like being aggressive anyway. The rest of the team must have advised her differently when my Mum and I were out of the room whilst they deliberated their recommendation as when we returned she advised that this would now be taken into account for the behaviour, cognition and nutrition scores but behaviour was still ‘no needs’. I stated that mental health needs are just as valid as physical health needs and that risk is also a very important consideration.
    2) We emphasised that Gran’s dementia and breathlessness associated with the large hiatus hernia are both conditions that are deteriorating rapidly, not lest because of her age. The assessors (bar the care worker who in my opinion tried to support us) refused to factor in likely deterioration as they couldn’t ‘see into the future’. We argued that those three of us at the meeting who knew Gran could vouch for the deterioration over the last 3 months therefore could pretty accurately, unfortunately predict the likely deterioration over the next three months, not a lot of crystal ball gazing needed. I’ve yet to see their notes but this aspect seemed to remain ignored.
    3) Regarding notes, I advised at the start of the meeting that I would like to use a voice recording app on my phone as I would find it difficult making notes and taking part in the discussion, I would use the recoding to write up afterwards. I was informed that it wasn’t policy to allow that, that there are data protection issues and that individuals themselves weren’t happy at being recorded.
    There were other more minor points too.
    Any comments that could help our appeal would be very welcome and good luck to everyone else trying to make the best out of a dreadful system and at a time when our relatives (and friends) would rather we were spending time with them, it makes my blood boil to be honest.

    • Angela Sherman 4 years ago

      Jane – thanks for your comment. If you can be a bit more specific with the question you’re asking at the end, it will be easier for others respond and help you. Many thanks.

      • Jane Cutting 4 years ago

        I’m particularly interested in hearing about whether others have successfully argued that wandering and other dangerous behaviour associated with dementia should be assessed as if the person were still living at home rather than when they have been ‘deprived of their liberty’ and moved into a home, the ‘well managed needs’ still being needs argument.

        Also, I’m realising that to sustain going through an appeal alongside pursuing our formal complaint, we’re probably going to need to secure some specialist CHC advice and support to help prepare for the appeal and to attend the meeting with us. Could anyone recommend someone?

    • Chris-G 4 years ago

      As far as not seeing into the future; the MDT members are in fact expected to record exactly that scenario because the CHC funding is paid into that very future.
      Then again the Framework requires the MDT to record any thoughts that they might have in that future regard because it forms the basis of some people requiring more frequent assessments. As such they can see into the future if they will save money but not otherwise. Fair? Of course not. But they are obliged to make a prognosis based upon their judgement and the evidence.
      I can actually foretell my mother’s future…….. She has Alzheimer’s disease and she will not get better. Her needs will increase and then at some future point she will die from the disease or it’s complications. Seeing the future is easy when the matter is limited to relatively narrow concerns.
      All the best Chris.

  6. Jeanette 4 years ago

    Thank you for your advice , my brother did not jointly own the property with my mother .. He has though lived at this property all his life , he is known to social services but is not an active due to our family supporting him .. I will seek advice from a financial advisor

  7. Jeanette 4 years ago

    My mother had a life changing stroke in April 2009, this left her unable to , loss of speech, irreparable cognitive skills, double incontinance, peg fed , medication via this route also, no use of her right hand side, and constant nerve pain that medication never relived .. My mum left hospital after a care meeting which they advised us that it would be unsafe for her to return home , so went into a nursing home , mum had to suctioned daily due to loss of swallow .. They had a meeting with social workers who deemed even though she met NHS funding it was more social care !! It went back to panel again and was declined. No family member was invited to represent my mother.. A social worker visited mum again in August 2009 my mum met the criteria to go back to panel again but the social worker never applied due to the decline previously. My mum had a flat that she owned my brother who has a mild learning disability lived with her .. My mum developed vascular dementia within months .. Mum was then reviewed in 2011 and immediately was fully funded .. Her medical needs never improved but deteriorated to the extent that she became aggressive with staff and patients .. She had her peg relocated x two the last time she aspirated and died .. We had a meeting with social services to query the time scale between meetings which they admitted that my mum slipped through the net! We put a complaint in which was in 2012 which as of today they have advised that we need to clear my mother’s bill 35k before they will return any funds. My brother is 58 and clearly upset at the thought of losing his home. They have advised to release equity to pay the bill. Do I have to pay this when the complaint has not been resolved, and they have not answered my complaint as to when my mother became eligible for funding before the meeting in 2011, as her needs were no different?

    • Angela Sherman 4 years ago

      It sounds as though the social workers failed to carry out their duty to refer your mother properly for Continuing Healthcare at the time – and of course you should have been invited to the assessment meetings. If the flat is your brother’s home, and he owned it with your mother and he lives there, then with all those things combined I doubt he can be forced to use the equity in the property. You may want to seek independent financial advice, though. Make sure the financial adviser you speak to is qualified to advise on care fees.

  8. Julia Mott 5 years ago

    My mother was recently hospitalised for uro sepsis after two weeks in a care home. She is back at the nursing home.
    She has had strokes, needs all care, feeding and has lost 5 kg in 4 weeks.
    She has rapidly declined in health .
    Is she eligible for CHC funding?

    • Chris-G 5 years ago

      Without knowing your exact circumstances……. The 2012 National Framework requires the ‘Fast Track’ process to be used if a patient shows a rapid decline. The same is true if (sorry) death is likely to occur soon. Then again was a ‘Checklist’ done prior to discharge, regardless that the patient is already in a nursing home? This ‘Fast Track’ is doctor led and not subject to the idiocy played out by NHS and Council staff.
      I would push for CHC funding back dated if successful, on the grounds that discharge from hospital looks as if it was not done correctly.

    • Angela Sherman 4 years ago

      Julia – the only way to know if your mother is eligible for CHC funding is for her to be assessed. She should have been assessed in hospital before being discharged: http://caretobedifferent.co.uk/paying-for-care-between-hospital-discharge-and-funding-decision/ Push for a Fast Track assessment now: http://caretobedifferent.co.uk/continuing-care-fast-track-assessments-how-to-get-a-quick-decision/

  9. Tony Harding 5 years ago

    I am confused about when assessments should take place. My mother-in-law entered a care home in 2007 after being diagnosed with Alzheimer’s disease and my wife and her sister, with the help of visiting carers could no longer look after her at home.
    The only assessment that was made at the time was by a Local Authority finance officer who told them that they would not help with funding because she had a house that could be sold and therefore would have cash and other assets about the threshold limit. Should they have had healthcare assessments at this time? If so, who should have informed them?
    My mother-in-law died in November 2013
    They are now pursuing a retrospective continuing healthcare claim which started with the completion of a healthcare needs check list in September 2013.
    Is there anything they have missed or should have been done?

    Tony Harding

    • Angela Sherman 5 years ago

      That’s very typical, Tony, that the only assessment that was done at the time was a financial one. Your mother in law should have been assessed for NHS Continuing Healthcare before anyone started asking about her money. The local authority should have alerted the NHS to the possibility for funding eligibility and the NHS should have carried out the assessment process. It sounds as though a Checklist was done at the time. If your mother in law got through this, there should have then been a full multidisciplinary team assessment: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/

  10. Rhian 5 years ago

    I would like to know if I’m allowed to see mum’s care plans and risk assessment notes at her nursing home before representing her at a review for CHC funding. I did ask before to see mum’s full medical notes at the surgery but was refused

    • Angela Sherman 5 years ago

      Do you have power of attorney for your mum, Rhian? (You may not necessarily need one, but it would be helpful to know.)

    • Chris-G 5 years ago

      Jane, it is not a retrospective case. The phrase is used in regard to cases that should have been assessed and not cases that are under appeal. If they are saying that they need to do it under those circumstances then they are likely behaving incorrectly.

    • Chris-G 5 years ago

      An Independent Mental Capacity Advocate (IMCA) can do just that for you if the patient lacks capacity. There again, ‘in their best interests’; we have always argued that the next of kin or the family/friend that cared for them should be able to view all records, especially if they represented them at MDT meetings. There again if they get silly about it, you could ask that the patient be given an entire copy, in their room as is their right. Then you could read the records at your leisure.

      • Chris-G 5 years ago

        Just follow on with the Independent Mental Capacity Advocate theme….. IMCA. They have quite extraordinary rights to see patient information once they have been included in a patient’s case.

    • Michelle 5 years ago

      Hi Rhian, I’m considering CHC and got the care plans/assessment for my mother yesterday. I requested it from her social worker who first took my mother a copy and asked her if she would agree that I could see the information. Can your mother write a short letter authorising you to have access to her medical notes at the surgery ? Your mother should have the right to decide if you see the information.

  11. Jane 5 years ago

    Despite my late mother’ s case having been referred to NHS England following a local appeal meeting in April 2015, we are still awaiting a date for the Independent Review Tribunal. This was originally estimated to be due in January 2016 but,when I contacted them today,I was informed that,due to the backlog of cases,they are ” not in a position” to offer a date.
    This whole sorry business has been rumbling on since 2012 and Mum sadly passed away in July 2014 which immediately made her case ‘ retrospective’. Given that it took the local CHC team some 6 months to go to the nursing home to complete the DST after Mum met the checklist criteria,i’ m not holding my breath!
    Why is it that they seem to be able to contravene their own timescales with no apparent retribution?

    • Angela Sherman 5 years ago

      That sounds very distressing, Jane – and the question you ask is one that many families ask. There seems to be a serious lack of accountability within the whole system.

  12. Stephen 5 years ago

    My comment concerns the removal of shopping and housework as part of my partners CHC after she had changed her care agency, even though the need for shopping and housework was originally assessed as part of her package. I was told that housework and shopping could not be provided as it was “social care,” and therefore not a health need. You directed me to National Framework and on page 50 section 2.3 i found the following :.

    “CCGs should be mindful that where a person is eligible for NHS continuing healthcare the NHS is responsible for meeting their assessed health and social care needs.”

    Using this information i made representations to the CEO of the CCG who ignored me. So i got my MP involved who forced him to reply. It took from July to December to get the housework and shopping reinstated because though they tried to evade it’s implications they just could not escape that section of National Framework.

    This section is a very powerful weapon to use in any dispute when the administrators of Continuing Care try to reclassify any aspect of Continuing Care as a social need and therefore the responsibility of Social Services for which the client has to pay according to circumstances.

    • Angela Sherman 5 years ago

      Thanks for your feedback, Stephen. I’m glad that worked for you. Far too many assessors seem to ride roughshod over the guidelines – and the law – presumably hoping families will be none the wiser. Well done for standing your ground.

  13. Caroline 5 years ago

    My father’s CHC was revoked on January 13th & I wish to appeal. However, I’ve had nothing in writing to support the decision & am being chased for a financial assessment of my father’s assets. Is he responsible for the fees whilst we go through the appeal process? That’s what I’ve been told. Having had nothing in writing an appeal hasn’t yet been started.

    • Angela Sherman 5 years ago

      They must provide you with the written rationale for the removal or denial of funding – otherwise you’re unable to appeal that decision properly. This is reinforced in the National Framework guidelines. If you’re being chased for a financial assessment, make the point to the social worker or local authority representative that they are potentially in an illegal position – because they are effectively taking responsibility for care but without the proper reporting process having been followed.

  14. Graham Dunn 5 years ago

    My relatives funds are close to the upper limit for help from social services eg £23250 but they advise there is a minimum 3 month wait for an assessment, so how do the care home fees get paid until then?

    • Angela Sherman 5 years ago

      Thanks for your comment, Graham. It’s not your relative’s fault that there is a delay in getting assessed, and as no decision has yet been made about who is actually responsible for paying, no one can say that your relative is responsible. It must first be decided whether or not your relative’s care needs are beyond the local authority’s legal remit. If they are (and you can only know this through proper assessment) the NHS must pick up the bill. Otherwise the local authority is in an illegal position. I realise also that you are no doubt concerned for your relative’s wellbeing if he/she doesn’t start paying the care provider. It may be worth refusing to pay at this point though. This may also help: http://caretobedifferent.co.uk/care-act-2014-helps-you-with-nhs-continuing-healthcare/

    • Chris-G 5 years ago

      I would agree as regards the refusing to pay part. If the council remit to provide care is exceeded then as Angela states, they would be breaking the law to insist that you pay the nursing home, when the council and the NHS has likely told you that the patient requires that level of care. Just to ley you know, we have fought the NHS and the LA since 2008 over this for two relatives. We have always refused to re-pay the council. We would have refused to pay the nursing home too (had assets been that large), on the grounds that no one should be assessing a person’s means before a NHS CHC assessment has been undertaken.

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