Are you worried that Continuing Healthcare Funding may be withdrawn?

Are you worried that Continuing Healthcare Funding may be withdrawn?

Worried

“My relative has recently been awarded Continuing Healthcare Funding. I am worried it will be withdrawn at the next review”

If your relative is awarded NHS Continuing Healthcare Funding (CHC), then the Clinical Commissioning Group (CCG) will aim to carry out a review initially at 3 months, and then again 12 monthly thereafter.

A reassessment is a stressful and anxious time

The previous National Framework for NHS Continuing Healthcare (2012), provided that, “Regular reviews should be carried out, the first no later than three months after the initial decision, and then at least once a year subsequently.  Some people will need more frequent reviews…….”.

Under the 2012 NHS National Framework, the intended purpose of these reviews was to allow the CCG to reassess the care needs and review whether the individual still met the eligibility criteria for CHC, and to determine whether the individual’s needs have changed.

The 2012 Practice Guidance suggested that a Checklist should be carried out as part of the routine review and look at all of the Care Domains in turn as part of the reassessment (paragraph 139-144) “in order to reassess care needs and eligibility for NHS Continuing Healthcare, and to ensure that those needs are being met”.

It was in the CCG’s interest to carry out the initial 3 monthly (and 12 monthly) reviews promptly (resources permitting!) because the individual’s needs could have “changed” (ie reduced) in this short intervening period. If they no longer met the eligibility criteria, CHC Funding could be withdrawn from individuals who no longer qualified for it – potentially saving the NHS a fortune by needlessly paying for CHC where it was no longer merited.

After all, people’s healthcare needs can go up as well as down over time, and just because your relative obtains CHC Funding at a point in time, doesn’t mean that it is guaranteed for life. Needs can vary, and these reassessments were intended to check whether the funding arrangement was still appropriate.

However, more cynically, these reassessments offered the CCGs with a discreet opportunity – ‘second bite of the cherry’ if you like – to revisit the initial decision to grant full CHC Funding and to unilaterally reverse it, and to withdraw existing funding, occasionally without a seemingly robust explanation or rationale.

This potential ‘financial gatekeeping’ opportunity to protect NHS funds, could send families into a state of apoplexy, disbelief, frustration, heightened anxiety, panic and turmoil – at the realisation that they may now have to find huge private funds to pay for care. Being forced to sell the individual’s home to pay for their care was a common scenario. We hear of families who despaired with bewilderment, arguing that their relative’s needs had not changed since the completion of the Decision Support Tool when funding was granted, and if anything, their needs have deteriorated over time – not improved.

In short, how can it be fair that, having gone ’through the mill’ and stress of achieving CHC Funding in the first place, CHC funding can be unilaterally withdrawn in relatively short time after it was awarded?

So what has changed with the new National Framework (revised 2018)?

The new National Framework for NHS Continuing Healthcare and NHS-Funded Nursing Care (revised 2018) has hopefully rebalanced the position back in the family’s favour. But only time will tell as to how each CCG applies the guidance….

New shift in focus….

The focus of the initial three month (and twelve monthly) reviews has fundamentally changed with the revised Framework. The underlying intention of the review is not to undertake a reassessment of care needs and the individual’s eligibility for CHC Funding, but should instead now primarily focus on whether the care plan or arrangements remain appropriate to meet the individual’s needs.  It is expected that the majority of cases there will be no need to reassess for eligibility”.  

Note: A reassessment of eligibility should now only take place where there is clear evidence of a change in needs to the extent that it may impact upon the individual’s eligibility for CHC.  When carrying out these reviews, it is expected that the recent Decision Support Tool (DST) will be available and indeed the Framework provides it should be “used as a point of reference to identify potential change in needs”. See paragraph 181 to 185, on page 52 of the 2018 NHS National Framework.

Be alert! Despite this positive change intended to reduce unnecessary reassessments and reviews of eligibility, there is still a risk that CCGs may be selective as to how they apply this part of the new NHS National Framework.  Much will largely depend on retraining and each individual CCG’s ‘party line’ as to how it approaches the revised guidance.

If applied correctly, the revised 2018 NHS National Framework should provide some comfort for families. The reassessment process should no longer be seen as a ‘green light’ for CCGs to resume battle, challenge eligibility and overturn the decision of a Multi-Disciplinary Team assessment.  Instead, reassessments should be used more constructively – to consider whether the care package already in place adequately meets your relative’s ongoing healthcare needs and see what else needs to be put in place to assist them.

If your relative is able to secure CHC funding at the outset, then it is likely to continue, unless those healthcare needs significantly change (i.e. reduce or disappear).

Here’s some of our top tips:

  • If you hear that CHC Funding is likely to be withdrawn even prior to the reassessment taking place – then you must object!
  • Remember: the reassessment should be fair and impartial, and not be pre-determined without first reassessing the individual;
  • Make sure the CCG doesn’t try to use the reassessment process as an invitation to investigate eligibility again. That issue has already been resolved by the Multi-Disciplinary Team.
  • If it becomes clear that ‘eligibility’ is the focus of the review, not whether the care package in place is adequate, then ensure that the CCG assessor records the reasons why that is the case and has noted down your concerns.
  • Revisiting eligibility “in the majority of cases” – however ‘dressed up’ – is an outdated ‘attitude’ and is contrary to the new Framework (2018).
  • Quote paragraphs 181 to 185 of the new Framework above.
  • Remember our motto: the reassessment is to “help not hinder”.

In summary, it is early days yet, and we shall have to wait and see how CCGs respond to the new Framework guidance and approach these 3 monthly and 12 monthly reviews.

Spread the word and tell others if your relative has undergone reassessment since 1st October 2018, and you believe the CCGs used this opportunity to undermine eligibility, rather than looking at whether the existing care package is sufficient for your relative’s needs.

23 Comments

  1. David Chambers 2 months ago

    My father has had multiple heart attacks and a bypass and is a renal patient on full dialysis.

    In December he became so weak that he was admitted to hospital.

    After a few weeks he was allowed home and was fast tracked so as to get care at home.

    My mother had dementia and we have a live in carer helping her.

    My father had an assessment after three months and at that point we deemed eligible for the cover to continue.

    He has now had another assessment after six months we thought to assess the care needs and have just received a letter to say that he is no longer eligible.

    Staggered at how they now treat a 92 year old man in the final stages of his life who has deteriorated over the past few months and now abandon us because he hasnt died think the situation has improved such that it now isn’t their problem.

    Disgraceful and quite frankly distraught as to how this country is treating people.

  2. TERESA 3 months ago

    My mum has been paying full cost for her care £1250 per week -we had to sell her small council house to pay for it she has no savings . She has had vascular dementia
    for 6 years , been in nursing home for 21 months as hospital said homecare was not appropriate anymore.I also had my Learning
    Disabled son who needs 24 hr care and my Husband who was seriously ill and died 18 months ago at home. Mum is now late stage , double incontinent, pureed food and thickened drink which and has to be tea spoon feed, she has behaviour problems can’t walk and has lost all speech from the last stroke she had in February when she was admitted to hospital.They discharged her on palliative care and CHC funding. After 12 weeks we had another assessment and funding has been withdrawn as they think she has improved or didnt die. The MDT meeting was a very stressful 4 hours long . We have been through this twice before and always turned down . Mum is a seriously sick lady but they do not care ..the tool they use is flawed in so may ways ..I would love to know the person who drew up this document, it might have been easier to scrap the domains and just ask the questions as to what definitely constitutes CHC. The money this procedure costs of 7 people’s time and all the paper work is mind boggling ..at the end of the day NHS have washed their hands of my mum, Ambulance , GP , and hospital won’t admit her now and nursing home are responsible when she has another stroke or TIA. … 86 year old who worked all her life . TV programmes only ever show early stages of dementia, perhaps late stage ought to be seen by government departments to really understand what it’s all about and to see how they are in their beds or chairs all day needing 24 hr care and nursing …Maybe too scary for them. The Decision tools should be be looked at again and be made clearer to all . I haven’t a clue how ill you have to be to qualify for CHC.

    • Care to be Different 3 months ago

      Hi Teresa – many thanks for getting in touch. We have posted your comments on the Facebook page and there have been some helpful replies if you would care to visit the page https://www.facebook.com/CareToBeDifferent/?ref=bookmarks If you would like to discuss the matter with us direct however please do not hesitate to call us on 0161 979 0430 Kind regards

    • Nicky Thomas 3 months ago

      Hi all. Had the DST today and had a really good social worker. He supported us and we fought every domain and used the four characteristics to evidence the complexities of her needs. In the domains two went up , Nutrition and physiological and well being. Mobility went down as mum can’t walk anymore , but this obviously impacts her health more due to increased risk of pressure sores and muscle loss. Despite all the evidence that mums needs were not routine the nurse assessor still said they were and it was her opinion mum does not qualify for CHC. We asked what evidence she had that mums needs had changed but she just said that’s my opinion. The SW did not agree and therefore the outcome was undecided. So now the LA and CCG discuss and we shall wait for the final decision. Doesn’t matter what the domain levels are, or indeed what is evidenced, the nurse assessor will just say no! Very disappointed as I really have no idea what else we could do. The assessors seem to be a law unto themselves, accountable to no one.

  3. Nicola 3 months ago

    The change in the national framework, made no difference when my mum had her 12 month assessment. They had to lower the score in at least one domain to say that it constituted a significant change, and therefore needed to go to full DST. I knew that they already had a date book for the MDT before the yearly assessment even took place. I was fully prepared , but they argued that her behaviour had improved, particularly her aggression. They couldn’t argue any other domain. The care home manager put evidence forward and despite my mum biting a carer , they said that happened 10 months ago and did nor count! I argued her needs were well managed with carers she has known for 5 years, but they stood their ground and said her behaviour was now moderate and not high. The nurse said that’s all we need to take it to DST. So now I’m facing DST where they will no doubt use the four characteristics to down play her needs. I’ve spent the last week gathering all info and preparing, but I know they have their chat around the four characteristics privately and will use them to take away her funding. She is less aggressive, but has declined overall and is now not mobile , no awareness, can not communicate in any coherent way and has to have all her needs anticipated, need feeding, takes meds covertly. It’s all about her aggression, surely that’s not right? Feeling overwhelmed really, and dreading the DST next week. Any advice will be greatly appreciated. Thanks everyone, this site is amazing. Nicky x

    • Care to be Different 3 months ago

      Hi Nicola – thanks for sharing your experiences. Please do not hesitate to get in touch if you would like to discuss the matter with us in detail. 0161 979 0430 Kind regards

  4. Teresa 3 months ago

    Mum was sent home from hospital with fast track palliative care not expected to last long ? We had her 12 week assessment today .
    Her funding was withdrawn. She didnt die so she is better apparently .??? She has no mobility no speech, double incontinent. Has no idea who we are . She has had dementia for 6 years funded the last 2 years herself when she had to go into a nursing home from the sale of her small 2 bed council house . There is not much left so the conversation today about what happens when her money has gone was frightening. She is a very sick lady but CHC didn’t care .

  5. Matt 4 months ago

    My mum is being re-assessed as we speak. Already they are saying her mental capacity has not worsened since 2015. This is wrong. She has been fully funded for the last 6 years. Her care needs are very varied. I suffer from depression and anxiety and worry how things will turn out for mum and the family. Stressful times.

    • Care to be Different 4 months ago

      So sorry to hear this Matt – Keep strong. Let us know if we can help in any way. Kind regards

      • Matt 4 months ago

        Thank you. I will. I found your website quite by accident. I’m glad I did. It’s tragic that finances and the heatlthcare of a loved one should cause so much worry and anxiety to so many.

    • Jane 4 months ago

      Matt you must provide all the evidence you can. Consultants, care home, hospital, any information you have. Collect it all together. They need to be challenged continually. Question what they are saying, what is there evidence for suggesting your mother’s health has improved. Ask them what there qualifications are in mental health, what do they know and what is their expertise? How long have they been doing this job and the Social Worker too. Get as many people who deal with your mother to provide support concerning her behaviour.
      Do everything you can to put them on the back foot and do not let them intimidate you. If your mother has a complexed health need she is not a Social Services case, because she probably will not benefit from social interaction and requires one to one.
      Do not show weakness, make them understand you are going to fight the decision if it doesn’t support your mother.
      If you are struggling get help from other family member or a friend if possible..
      All best wishes, Jane.

  6. Jane Jones 5 months ago

    Jane Jones.
    My mother had a reassessment after having received CHC for 1 and a half years. The reason given, it was felt she had improved. She had been moved to Nursing Care by the NHS CHC team just over a year ago as the care she was receiving was not adequate.
    My brother and I arrived with all paperwork in order, from the Nursing Home, consultants and other specialists who had dealt with my mother. The evidence was too obvious to be denied and she did retain her CHC funding. It did demand a lot of work and preparation from us, but we did feel this time the Social Worker was more aware of the process. It was a long day, but we felt we had a fair hearing and were able to discuss and argue our case. We now have a year before a review which we will again go into full prepared and giving that my mother is 95, I can not see her condition improving in the next twelve months. Emotionally draining for all the family and this time I felt for the assessors too!

    • Care to be Different 5 months ago

      Hi Jane – Very well done! Prepare well and it pays off. Excellent. Kind regards

  7. Meggie 8 months ago

    I read this article about the change to the NF and this line in particular – “A reassessment of eligibility should now only take place where there is clear evidence of a change in needs to the extent that it may impact upon the individual’s eligibility for CHC.”

    I recently became a financial advocate for people with learning disabilities. A client who is currently fully funded by the NHS through CHC is in the near future (I have been told) going to be switched to being funded 50/50 between the NHS and social services. It is as though they have already decided, even though there has not yet been any assessment of her health and care needs to see if these have changed. This is in Wales and a social worker told me quite emphatically that this is common in Wales and many people receive 50/50 funding.
    Any advice much appreciated before I question/challenge the social worker and care home about this. I will certainly ask to be invited to the MDT meeting and completion of a DST if this is the route they go down. My own knowledge of CHC comes entirely from personal experience when fighting for care for my elderly father.

    • Nicola 6 months ago

      Hi all! My mum has her 12 monthly review next month and I’m already dreading it. Last year they said her needs had improved , one of them being her communication …they didn’t even try to speak with her, if they did they would have realised that nothing she says makes sense! They said she can communicate non verbally as she sometimes rubs her knees and that indicates she’s in pain!! The whole meeting was flawed. I finally went to appeal and I was successful, so funding continued . I’m pleased to see the new wording in the framework but have no real hope it will be applied correctly . I found out that the CCG have already booked a date for a full MDT meeting , although the review has not even taken place! It seems to me that they are already going to challenge eligibility and take my mums case to a full MDT. I have asked the CCG about this and they say if her needs have changed then they need to carry out a full MDT within 28 days. Is this correct? I thought that the 28 days only applied following an initial checklist , not a review meeting.?

  8. Jane Lewin 10 months ago

    my mother has Alzheimers and has received CHC for 2+ years, she has an assessment tomorrow and the nursing home are sure the CHC will be withdrawn because some of her symptoms have improved (aggression being one of these) in reality my mum is worse as she has no idea what is happening around her and is in bed all the time. She is totally dependent on her carers. Has anyone else experienced this? The home told me they have had funding withdrawn for 2 others recently on similar grounds.

    • Care to be Different 10 months ago

      Hi Jane – sorry to hear this. I think you could do with some professional advice at this stage. Why not contact http://www.farleydwek.com Kind regards

  9. Sheridan 10 months ago

    hi
    I seem to be in a similar position to Karen. My mother was fast tracked end of life care 12 weeks ago and i have just heard from the nurse who
    assessed her 2 days ago, and apparently she has improved ie still alive! and she will be not reccomending that the funding contiues.My mother cannot move at all unless with a hoist, she is on oxygen and has a catheter fitted

    The so called improvement seems to be when she was in the hospital she could not feed herself and now she can , but she cannot use a knife and fork and eats small amounts with a spoon so there we go

  10. Linda Nelson 10 months ago

    My mother received NHS continuing care funding for the final three and a half years of life. After the assessment when the award was made, as far as I know, there was never a follow up assessment.

    • Karen 10 months ago

      How long ago was that Linda? Don’t think it’s likely to happen now sadly – when every penny is watched!

      • Linda Nelson 10 months ago

        Mum died in 2017.

  11. Karen Wright 10 months ago

    Mum’s fast track end of life taken away after 12 weeks. Reassessment done and found to have “improved” ie hadn’t died!! Furious!

    • Care to be Different 10 months ago

      Hi Karen – this can happen but it doesn’t always mean it’s right! Why not get in touch and we can assess whether we can assist you to overturn this decision. enquiries@caretobedifferent.co.uk Kind regards

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