NHS Continuing Healthcare Funding (CHC) is a package of fully funded care provided by the NHS where an individual has a ‘primary healthcare need’ ie care needs over and above those that can lawfully be provided by the Local Authority (via Social Services). CHC Funding is free at the point of need and is not subject to means-testing. Wealth is not the issue, as it’s all about healthcare needs.
Where CHC Funding is granted to an individual, the National Framework for NHS Continuing Healthcare Funding and NHS-Funded Nursing Care (Revised 2018) provides that the package of care should be reviewed regularly by the NHS Clinical Commissioning Group (CCG) to ensure that it is still adequate to meet your relative’s healthcare needs. Needs can, of course, fluctuate over time.
Paragraph 189 of the National Framework (2018) provides that such reviews should be carried out within 3 months of the eligibility decision to grant NHS Continuing Healthcare Funding, and then again at least every 12 months thereafter (although the Framework states that “some individuals will require more frequent review in line with clinical judgement and changing needs”).
According to the National Framework, these regular reviews should be referenced against the latest Decision Support Tool for comparison purposes, as a guide to identify any potential changes in an individual’s healthcare needs since the last review. The review is therefore an integral part of monitoring and assessing your relative, and checking whether the NHS funded care package is still adequate and appropriate to meet their needs. Does CHC Funding need to be increased (or decreased) to reflect any changes in their healthcare needs? For example, perhaps since the last annual review there has been a marked deterioration in cognitive impairment, considerable weight loss, or decreased mobility now requiring 2 carers to assist with all transfers. Each healthcare need will impact on and interact with another aspect of the care needs required. Consequently, if upon review, your relative’s needs have become more difficult to manage, intense, complex, or unpredictable, then increased funding may be needed to meet any adjustments to the care plans previously in place.
So, if the current CHC funded package is insufficient, then use the review as an opportunity to encourage the CCG’s assessors to recommend that an increased package of funded care needs to be implemented to look after your relative.
However, beware! The review process can present an opportunity for some CCG assessors to argue that there has been a change in an individual’s needs, such that CHC Funding may no longer be appropriate. This is often contrary to the reality as families contend that their relative’s needs clearly haven’t changed, and if anything, they have got worse!
If at the review the assessors feel the needs have changed (ie improved), the matter will be referred back to the CCG to arrange another Full Assessment before a Multi-Disciplinary Team (MDT) and an updated Decision Support Tool completed. The risk, of course, is that CHC Funding will then be withdrawn at this next formal MDT reassessment.
The review process is entirely subjective, and therefore open to abuse. It can lead to inconsistent results across the country, where an individual with the same healthcare needs might get CHC Funding in one part of the country but be rejected if assessed elsewhere. It is often referred to as the ‘postcode lottery’. Families are at the mercy of the CCG’s assessors, and unfortunately, the less savvy could fare badly.
It is our experience that some CCG’s assessors wrongly recommend that CHC funding be withdrawn when it is blatantly obvious that it should be sustained and kept in place. Why do so many families tell us that funding is removed following a reassessment by a Multi-Disciplinary Team, despite there clearly being no improvement in their relative’s healthcare needs? Perhaps this is because some CHC Assessors just don’t understand the National Framework or else have been insufficiently trained in the review process, leading to incorrect application of the assessment criteria. More cynical readers might say that it’s simply a matter of finances and assessors towing the ‘party line’ to save money and protect their CCG’s budget! The NHS has to save £855 million by 2020 in NHS Continuing Healthcare Funding. Whilst the National Framework states that financial considerations should never be part of the assessment process, inevitably, increased care needs mean more cost, and hence more funds leaking from CCG budgets.
If CHC funding is incorrectly or improperly withdrawn following a review, families can rightly feel aggrieved and angry, as they will now be subjected to a lengthy fight towards an appeal seeking reinstatement of CHC, whilst being saddled with anxiety, frustration and debt as they’ll now have to get alternative finding to pay for their relative’s care. There is an added risk that without adequate (replacement) funding, your vulnerable relative could be ejected from the security of their care home. The appeal’s process is not quick either, only adding more misery, anger and resentment to an already inflamed emotional and stressful situation.
Take the case of John Morrison who featured in Victoria Derbyshire’s BBC programme on the 11th June 2019. John suffers with cerebral palsy and has no use of his limbs. His mother, Suzanne Morrison, and her husband give a very moving account of their struggle to get CHC for John, which was initially granted, but then withdrawn upon review in 2009. His needs were clearly healthcare needs and had not improved, despite funding being withdrawn. Following a 10 year battle with the CCG, John’s CHC Funding was only recently reinstated. A great result for the Morrisons after many years of anguish, stress and frustration fighting the NHS for John’s rights. His family are now seeking to reclaim £300,000 for wrongly charged fees paid for John’s care needs.
Cases like John’s are a national disgrace. Here’s a link to the BBC’s main news item and Victoria Derbyshire’s current affairs news programme in case you missed it: https://www.bbc.co.uk/iplayer/episode/m0005x2h/victoria-derbyshire-11062019.
You can also read more about John’s case in our blog: Exposed: NHS Continuing Healthcare makes headline BBC News.
We are pleased that at last common sense and fairness has prevailed to reinstate John’s funding, but inevitably the struggle has taken its toll on his family who will never get back these precious 10 years whilst battling with the NHS for justice. It’s all about cost! We applaud Victoria Derbyshire and her BBC team for exposing this national scandal and highlighting other appalling cases of abuse, including our regular contributor, Admiral Mathias’s struggle to get CHC Funding for his mother. We recommend you read Admiral Mathias’ blog: ‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’
Our three top tips:
- Make sure that you get adequate notice of any review and that it is not carried out behind your back.
- It is vital that you attend any review to give your input and check that it is carried out thoroughly and robustly.
- Reviews and MDT reassessments can be stressful. Seek professional advocacy help if you need it.
Summary
Don’t forget, that an individual’s healthcare needs can fluctuate, and can therefore deteriorate as well as improve over time.
Don’t make the mistake in thinking that NHS CHC Funding, once granted, is guaranteed for life. It isn’t, and this causes great consternation and anxiety when the CCGs carry out their reviews.
The review should be about whether the funded care package is sufficient to meet your relative’s needs.
Be aware that there is always a risk that CHC funding can be withdrawn if the CCG undertake a fresh reassessment at an MDT. So be prepared to argue your case.
Consider whether it would be beneficial to incur the cost of a professional advocate to represent you at the review or MDT reassessment and take the stress on their shoulders. Securing ongoing CHC Funding could save your relative paying many thousands of pounds a month in care fees and save you the anxiety and worry of undergoing a lengthy appeal. Visit our one-to-one page for more information about advocacy services.
For further reading, look at our blogs:
Attending an Assessment or Independent Review Appeal?
Can The MDT Panel Refuse To Proceed If I Have An Advocate?
Please leave a comment below, and help others, by sharing your experiences of a review which has lead to CHC Funding being wrongly withdrawn …
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My partner is having a CC review soon. I am well prepared for this review.
Thanks to all the various comments and advice through CTBD I asked for and received the original DST report .
Reading through that report it is obvious that one of the domains must now be changed from High to Severe and the rest are unchanged.
Everyone who has an impending review should ask for the original DST report and the most recent review as well.
The DST report states not only that any domain subject to challenge by the patient or representative must be reported in the DST but it specifically states what an assessor must and must not do, so it is of the utmost importance when any review is proposed, to have the original or up to date DST to hand. Then when any either ill-informed or criminal minded assessor does the review, you will all the ammunition you need to defend your corner and stop any potential withdrawal of funding.
Without it you are going into a review blind, and this how they will get away with removing funding.
Attention Teresa –
I feel very Tearful for you Mother she shouldn’t have to be going through this – I watched my Mother going through the same thing – Basically they don’t care about the Elderly all they care about is money! and who pays for what.
Make your mom feel Safe and Comfortable -having dementia makes them feel very confused
Yes I agree its disgusting how they try every trick in the book to avoid paying for the Care of the Elderly – Hope they get the same treatment when they are old !
Appeal !!! We have a right to be taken care of in our old age.
Also if your parents are Claiming Rent they are still entitled to still receive it – this is because the Assessment of receiving C.H.C is ongoing – therefore you parents are Temporary away from home.
Huh! CHC don’t want to commit themselves and neither does the Council. So they are having a Money battle on who pays for what – In the mean time everybody’s life is on hold.
My mum was sent back from hospital after another severe stroke to her nursing home were she has been self funding for 2 years on palliative care ,
Received CHC funding , after 12 weeks she was reassessed and funding had been withdrawn as they said she had improved ?? She can’t do anything for herself , can’t speak , walk , double incontinent and doesn’t know us now , all she does is chew on her clothes and bedding , carers don’t know if she is in pain ..? she is a very sick 86year old lady. We believe she was sent back from hospital with the funding just to stop bed blocking and as she didn’t “die” she is deemed improved ?? We are appealing the decision but don’t feel confident , they run rings around you and contradict every domain to suit themselves. End stage dementia is never seen in the media or tv and I do wonder if the powers that be really understand the illness at this level
We have just had our CHC Funding taken away last month. My mother’s needs have not changed since receiving CHC. The Nurse Assessor was a nasty piece of work, held court in the meeting and didn’t let anyone else have a chance to put their views across. She had pre-empted that my mother’s needs had changed and that we were not going to get the funding. She was rude to the nurse at the care home and to myself and shot me down straight away when I challenged her on one of the scores on the DST. The social worker had no input at all.
Hi Amanda – This is fairly typical of the experiences which we hear about I’m afraid. If you would like to chat it through please get in touch and we can discuss whether we are able to assist. 0161 979 0430 Kind regards
So I have now got to the bottom of what has happened. The CHC team phoned the nursing home to fill in a Health Needs Form. They were put through to someone that does not know my Mother and has not nursed her, she only works there 1 day a week and is on a different floor. She was asked if my Mother could eat independently and she said yes. My Mother can not eat or drink independently. This triggered the CHC team to do a full assessment as there was a change of need, with a pre-determined outcome of withdrawing the funding. We are now in the position of funding my Mothers care. Where do I go from here? I have complained to the nursing home as this person should not have taken the phone call. I have also appealed the CHC decision.
Hi Amanda – this is awful behaviour! Please do call us if you would like to chat through how we might assist you with this. Kind regards 0161 979 0430
Amanda, make a formal complaint. It is clearly stated in the framework that the assessment is an agreement not one person stating their decided view. I’m sure it also goes so far as to say where there is a disagreement on scores the highest one must be recorded.
Hi Sara, yes I have made a complaint and am in the process of gathering information for an appeal.
Thanks for your response.
Amanda
Why is it at all the meetings that the representatives ask about money as the first question? We’ve had two meeting and it’s been the first question twice!
It would appear that a common practice by CCGs is to claim that the interventions are social and personal care and not health/nursing services, even though significant healthcare needs have been identified. They deliberately muddle between the two deny funding.
Where is the line drawn legally on what counts as a ‘social care’ service and what counts as a ‘health/nursing service’?
Andy that is what I’d like to know. Also what is the difference between a NHS framework and the law?
Many assessors deliberately use this trick to get around the definition of the primary health need test, which refers to ‘health or nursing services’ being coincidental or ancillary’. They can easily raise the bar of eligibility by simply saying more of these services come under social care. This is totally disingenuous.
I’m not sure what you mean by “NHS framework”. The ‘National Framework’ is statutory guidance that the CCGs are supposed to follow. Much of it is derived from Case Law. As it is guidance, the Case Law takes precedent.