What to say when denied NHS Continuing Healthcare

What to say when denied NHS Continuing Healthcare

What to say when denied NHS Continuing Healthcare3 questions to ask at the end of an NHS Continuing Healthcare assessment meeting

Tip no. 22 in our series of 27 top tips on NHS Continuing Healthcare…

At the end of the NHS Continuing Healthcare assessment process, you’ll be told what the funding recommendation is.

If you get to the end of a full multidisciplinary team assessment meeting and are told your relative will be denied NHS Continuing Healthcare funding, what can you do?

You can of course make it clear you’re going to appeal – and then you’ll need to challenge (in writing) all the mistakes made during the assessment process. You’ll find several articles on the appeal process here.

However, it’s important to ask 3 questions first – and ask them before the end of the assessment meeting.

If the lead assessor says you’re being denied NHS Continuing Healthcare and then starts to draw the meeting to a close, immediately direct some questions to the local authority representative (usually the social worker).

If you’re denied NHS Continuing Healthcare, it means that you are by default the responsibility of the local authority (regardless of whether you’re going to be self funding or whether the local authority will pay).

However, a local authority can only take responsibility for a certain level of care. If you need care beyond that level, the NHS must, by law, cover the full cost. If it doesn’t, it will also be putting the local authority in an illegal position.

So it’s important to ask the social worker publicly in the meeting about their own legal position:

1. How exactly are the care needs in question low enough to be a local authority responsibility?

2. How confident is the social worker of their own legal position in accepting responsibility for care?

3. If the social worker indicates that the care needs might indeed be an NHS responsibility (and beyond the local authority’s legal remit), ask the social worker why they are not standing up for that position.

Tip no. 21: Start with the highest domain scores in NHS Continuing Healthcare

Tip no. 23: How to write an appeal for NHS Continuing Healthcare

You don’t have to fight this battle alone

Fighting a Continuing Healthcare funding battle alone can feel daunting. If you need to talk to someone about your case, read more here.

22 Comments

  1. Susan Randles 3 weeks ago

    I wrote about my husband Brian’s case on the 14 May and how we had been fighting for funding for 3 years. Brian had a severe stroke in December 2014 which robbed him of the use of his left side leaving him in bed most if the time, he had congestive heart failure, vascular dementia, 3 heart attacks, a stent fitted to his heart, atrial fibrillation (which caused his stroke), several tia’s, lacked mental capacity, had not eaten for almost a month, recently started to vomit following any attempt to get him to eat, drink, or take his medication, never drank more than 500mls per day most times less, as a consequence had a sodium level over 150mg making him at high risk of multi organ failure, had severe issues with his skin which kept getting infected around his genitals and back/ bottom and legs, often raw and bleeding and he was deteriorating rapidly. His Decision Support Tool was that afternoon and finally we got an assessor with sense, she refused to do a full assessment and suggested we contact the doctor to see about Fast Tracking him, which we did. On the 16 May the doctor agreed to this and it was verbally approved from that day forward, although we still have no official paperwork to confirm this.
    Sadly, on the 24 May Brian died. Tell me is that finally proof that he had a ‘primary health need’!

    • Jenny 5 days ago

      So sorry to read that Susan, and so sorry for all of us here who have had similar experiences. Most of all, sorry for the relatives who have to endure varying standards of care while all this nonsense goes on around them in their final months, weeks or years.
      The NHS Continuing Healthcare process is a cynical game played by teams of unskilled and often uncaring people whom I assume either have no intellectual curiosity or integrity, and don’t need a clear conscience to sleep at night.

  2. Emma 4 weeks ago

    Hello everyone.

    Today I came out of an NHS Continuing Healthcare (CHC) Checklist meeting for my mother, with the next stage being the Decision Support Tool meeting. The assessor states she believes my mums care needs are social care…. which I find soooo hard to accept. In summary, my mum has been in a nursing home since she had a stroke back in 2014, loosing her ability to use or move her right side. Unable to stand or weight bare, all aspects of personal care need to be completed for her. Severely cognitively impaired (says yes to everything!) she can’t even point to a picture if she wants a drink. EVERYTHING has to be anticipated for her. Double incontinent, changed 5 times a day. She has to be washed and changed twice a night. She’s unable to communicate her wants or needs or if she’s feeling poorly. Epilepsy (last seizure over a year ago) diabetic (insulin required). Starting to show signs of pressure sores. Recently diagnosed with dysphasia and now at risk of aspiration. The staff and the level of care she receives is fantastic. I’m basically looking for a bit of guidance or pointers, does this sound like social care??? Am I wasting my time trying to get funding? Thanks in advance.

    • Jenny 4 weeks ago

      Emma, it’s not a waste of time, but it is hard work and stressful. From what you write you need to gather evidence from her notes and your own observation to example the level of need. Perhaps get her lead carer to contribute to the Decision Support Tool (DST).
      Get Angela’s book, download the DST form and match her needs to the domain scores, adding in Nature, Intensity, Complexity (how the domains interact eg Communication, Skin, Mobility, Cognition) Unpredictability. The definitions for these are in the book and the National Framework guidance. Remember to establish these are health needs, complex, and beyond the remit of the local authority (LA). The LA’s remit is exceeded when the social needs are more than ancillary to nursing.
      Ensure your writing and delivery is persuasive and that your scores are recorded, and that your prepared DST goes with the assessor’s to the panel for decision. If you go in well prepared and speak up during the DST hammering home points like a well managed need is still a need, you might stand some chance.

      • Jane 6 days ago

        How does the local authority define ancillary and at what point does care become nursing?

        • Jenny 5 days ago

          The definition comes from the National Assistance Act and was repeated in LA Guidance. I should think there’s some helpful case law on it that Public Law specialists could quickly identify.
          In practice the difficulty is the low level of training many social workers have in this area, along with the nurse assessors often programmed to pass the case to the LA at all costs. Assuming you have a Social worker present at the Decision Support Tool then you can stall the case by insisting they have specialised knowledge of the applicant’s condition as The Care Act requires. You can also make clear you will notify their professional body and hold them personally liable if they take on a case beyond their remit – which seems like bullying, but is often enough to make them stop and think. There are some examples of the extent of remit in the Guidance to the National Framework, but in essence where the Health Need is the primary need, the ancilliary (social) care should be just that – ancilliary. Remember also that some nursing procedures can be delegated to carers eg drugs administration (even classified drugs) dressings etc, but that doesn’t mean they then become Social Care. Perhaps total up the number of procedures your relative needs and look at the skill level needed, consider to whom they refer when conditions change, and note how often things change and the care is delivered.
          I read a memorable test in an article some time ago; If your relative fell from bed with a broken hip, would they call for a social worker or a doctor?

        • Jenny 5 days ago

          The definition comes from the National Assistance Act and was repeated in LA Guidance, and was material in the Coughlan case. I should think there’s some helpful case law on it that Public Law specialists could quickly identify.
          In practice the difficulty is the low level of training many social workers have in this area, along with the nurse assessors often programmed to pass the case to the LA at all costs. Assuming you have a Social worker present at the Decision Support Tool then you can stall the case by insisting they have specialised knowledge of the applicant’s condition as The Care Act requires. You can also make clear you will notify their professional body and hold them personally liable if they take on a case beyond their remit – which seems like bullying, but is often enough to make them stop and think. There are some examples of the extent of remit in the Guidance to the National Framework, but in essence where the Health Need is the primary need, the ancilliary (social) care should be just that – ancilliary. Remember also that some nursing procedures can be delegated to carers eg drugs administration (even classified drugs) dressings etc, but that doesn’t mean they then become Social Care. Perhaps total up the number of procedures your relative needs and look at the skill level needed, consider to whom they refer when conditions change, and note how often things change and the care is delivered.
          I read a memorable test in an article some time ago; If your relative fell from bed with a broken hip, would they call for a social worker or a doctor?
          Ps. There’s an article about this June 2014 on this site

  3. p harden 4 weeks ago

    Caroline Jackson – do you have careers helping you with mum-in-law? We were told that they have to let them fall, we are not allowed to catch them. Confirmed this when said they had stopped relative from falling even though not allowed too. Relative later confirmed that they had NOT completely stopped them from falling as they had hit knee on floor.

    • Caroline Jackson 4 weeks ago

      My Mother-In-Law has Alzheimer’s, cancer – palliative care only, heart failure making her breathless on occasions and suffers from Alternated States of Conciousness where she will simply ‘freeze’ like pressing pause on TV.

      Some days she can walk independently, other days she needs a Zimmer frame, other days she needs someone to physically hold her up. Some days she can get out of a chair Independently, other days needs lifting out of the chair.

      She will sometimes eat, other times just one of two mouthfuls. She has gone from a size 22 to a size 8 in 15 months.

      She is sometimes able to shower herself, other times needs to be washed.

      She has been assessed by the falls team as ‘needing constant supervision whilst mobilising due to cognition.’

      She needs full support with making meals, washing, shopping etc.

      During the night she will wake and think she’s in hospital, or she’s swallowed her teeth etc.

      She is unable to remember anything after about 5 minutes.

      We have carers who come and wash and dress her and they babysit her for two hours a week to give me a break. Other than this I look after her 24/7.

      They want to now cease the funding, they claim her only care needs is the care the carers provide!

      Can anyone advise if it sounds as if she qualifies? Many thanks

      15 months ago she was planning a holiday to Croatia, now she considers a 5 minute journey a long way!

      • Jenny 4 weeks ago

        Caroline, although your mother-in-law’s situation sounds both complex, unpredicatble and intense, it will be something of a lottery as to whether you get NHS Continuing Healthcare for her – especially as she is cared for at home. Although that should be irrelevant, it seems many CCGs are putting pressure on patients and families to move their relatives into care homes. Buy Angela’s book and read through it, use the many excellent articles on this site and download both The National Framework and Guidance. Get access to your mother-in-law’s medical notes, and register Powers of Attorney if you have not already done so and if she still has capacity. Keep a diary of events. Go through the domains in the Checklist and full assessment, matching her health needs to the wording and see how she scores. Then approach the CCG for a Checklist assessment.
        Good Luck.

        • Caroline Jackson 4 weeks ago

          Thanks Jenny, we have the book and Lasting Power of Attorney. Yes they want her to move into a care home as she is self funding! Social Services admit they can’t meet her needs if they needed to put in carers instead of me doing the work! We just want them to comply with legislation, just because I catch her doesn’t mean she isn’t at high risk of a fall…. etc

  4. Julia 4 weeks ago

    Having been on both sides, as a previous nurse assessor for NHS Continuing Healthcare and now as a relative trying to battle with the social worker for my uncle, it saddens me that the assessment process now seems to aim for the lowest score to avoid payment at all costs. The difference between the three levels of scoring is so subjective and sadly the professionals no longer act as the advocate for the people in need. I’m struggling and I know what I am challenging. The social worker feels I’m getting too involved and she knows better. It’s so frustrating.

  5. Caroline Jackson 4 weeks ago

    The social worker (SW) hasn’t seen my mother in law (MIL) for 18 months, they held a secret meeting with Social Services (SS) and the NHS Continuing Healthcare (CHC) team and decided to cancel the funding, on asking the SS to produce a care plan for the 24/7 care, the response was “we can’t, we have no idea as to what her care needs are, we need to assess her.”

    A second meeting was arranged and the SW sat there and agreed care should be downgraded “she’s not at high risk of falls because you catch her every time she falls.” etc. On asking the SW “how would you meet that care need?” she responded “I have no idea, I don’t know what her care needs are, I need to assess her.” We walked out of the meeting. They REFUSE to assess her prior to the meeting!

    • Jenny 4 weeks ago

      Is it worth writing to the CSU/CCG and pointing out they have made a decision without supporting evidence regarding Mobility domain? I assume MIL has higher scores in other domains also?
      You mention that you catch her before she falls. Is she at home or in a care home? If not, what do the care home records show/staff say? There seems to be a move to deny or remove NHS Continuing Healthcare from those receiving care at home.

      • Caroline Jackson 4 weeks ago

        Hi Jenny, my Mother in Law lives at home with me. Social Services (SS) say ‘just put her in a care home’. She would be self funding so no ‘burden’ on the SS! The sad thing is our loved ones are not treated as people, they are objects to be denied funding at all costs!

  6. Paul 4 weeks ago

    Keep trying Jennie – I had been fighting for 12 years, when our family had a second Independent Review Panel (IRP) this year. They accepted that our parent met NHS funding criteria, but only half way through their time in an EMI care home. But, by the IRP doing so, had put their cards on the table, to expose their criteria to award NHS funding. All the family have to do now is prove the same criteria existed before entry into the care system. The Social Services clearly could not provide the level of care for our parent. The Social Services care plans has a FAC (Fair Access to Funding) of “Critical”. They were a danger to themselves and the public. Their gas supply at home was switched off, in fear of gassing themselves, or blowing up the house and their neighbours. No heating would be possible. They required 24 by 7 care.

  7. Jenny 4 weeks ago

    It’s ridiculous really isn’t it? Say NHS Continuing Healthcare is refused and you ask the social worker the question and they then arrange a Care Act Assessment and rate the needs as Critical in several areas….. what does that imply?
    In reality it results in a financial assessment and another opportunity to pass what are, in all likelihood, Health Needs onto the local authority (LA) or the individual as a self funder. If the person needs 24 hour care delivered in a care home, they then pay more than those receiving the support of the LA as a further penalty!

  8. Glynis Evans 4 weeks ago

    We asked question number 1 of the Social Worker in our Multidisciplinary Team meeting. She told us things like washing, dressing (even though it is only nightclothes), continence, administering medication, feeding, turning, monitoring skin, checking oxygen machine etc etc are all a local authority responsibility.

    • Jenny 4 weeks ago

      Presumably their thinking is that if you’re ill, and fall from bed you’d immediately call for a social worker rather than summon medical help!

  9. Tracy Begley 4 weeks ago

    Would the same three questions be relevant if the assessment is a retrospective one?

    • Jennie 4 weeks ago

      What if the social worker (SW) is there only to make up the numbers? Couldn’t answer question 1 never mind 2 or 3. At our meeting she couldn’t answer any questions, saying input would be part of the report. It wasn’t. 18 months later we still have no SW input. They never make any decisions at any meetings because they know it could be successfully challenged there and then. So they go away and make it fit whatever domains they decide on and tell you no key factors apply either. Also what is the point of an appeal if they cherrypick the evidence for that as well. Never come across any other process that is so biased and takes so long. From someone who has spent too long appealing the process. However, still going strong and won’t give up.

    • Jenny 4 weeks ago

      That’s interesting. Are social workers involved at all with a nurse assessor conducting a retrospective claim? Surely they should be, otherwise the first opportunity to dispute the findings is either when the assessor sends the decision they intend submitting to the panel, or even the decision of the panel if the assessor has forgotten to do this. It’s therefore vital to include the comment that the needs are beyond the remit of the local authority at the end of every domain you complete with supporting evidence using the words from the domain and Nature, Intensity etc on your relative’s behalf.

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