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.
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:
Please leave a comment below, and help others, by sharing your experiences of a review which has lead to CHC Funding being wrongly withdrawn …