Why are CHC annual reviews a cause of anxiety for families?
There was an interesting article in the Daily Telegraph on Friday, 13 December 2024, entitled “Pensioners with crippling diseases lose funding for care”. The article starts by stating, “vulnerable pensioners with progressive and crippling diseases are increasingly having NHS funding for their care withdrawn”.
The article was not a surprise to us as this situation has been going on for many years, with the NHS withdrawing vital NHS Continuing Healthcare Funding (CHC) for the most vulnerable in society at a time when they need it most.
What is more disappointing is the fact that The Telegraph have only just identified the issue, when we have been helping families navigate the complexities of CHC funding for many years. Perhaps this revelation to The Telegraph should not be so surprising, as there is so little information readily available to the public.
Radio stations with call-in programmes, such as LBC, never discuss CHC funding, and all the calls on the subject of funding care tend to be dominated by focussing on social care funding – which is means-tested. CHC funding is not means-tested and is free at the point of need. It is both frustrating and infuriating when listening to these shows, that the radio presenters don’t mention CHC – presumably because they don’t know enough about it or haven’t even heard of it. Not surprising, when most GP and consultant surgeons generally have very poor knowledge themselves of CHC and the process to help their patients access free-funded NHS healthcare – which could save thousands of people having to sell their homes to pay for care.
Why is CHC always overlooked? Help spread the word…
Historically, this scandal has been brought to the fore by pioneers like Angela Sherman, the founder of Care To Be Different and Admiral Matthias (Retired); by the BBC in their drama ‘Care’ (2018) and Victoria Derbyshire’s BBC exposé (2020): https://www.youtube.com/watch?v=Fc3fsSEnEBo; and renown CHC experts, Farley Dwek Solicitors (ongoing since 2011). But since these beacons highlighting the availability of CHC funding, there has been very little publicly stated to promote CHC funding and bring it widely into the public domain. The NHS certainly don’t want to promote it for obvious reasons, as successful awards of CHC will drain their resources. Private care homes don’t tend to mention it either, as the fees received from the NHC for a CHC-funded resident is typically far less than the actual costs that can be charged to a self-funder.
What is CHC?
In short, CHC is a package of care paid for in full by the NHS to meet an individual’s healthcare and social care needs, including the cost of one’s accommodation in a care home or other care facility. If CHC is awarded, care homes are not lawfully allowed to charge residents a Top-Up fee for assessed healthcare needs and any shortfall in the cost of providing healthcare should be met, in full, by the NHS.
Reviews
Once an individual has been awarded CHC, they are obliged to review it after 3 months and then further reviews should be undertaken on at least an annual basis thereafter. The underlying purpose of the review is to ensure that the planned package of care in place is still sufficient to meet the individual’s needs. The NHS National Framework states that in the majority of cases there will be no need to reassess eligibility for CHC.
However, be under no illusion, as these reviews are notoriously anxious times for families, who are naturally fraught with worry and concern that the review could trigger a new full reassessment for CHC. The reassessment is conducted at another Multi-Disciplinary Team meeting (MDT). This is a particularly stressful time as your anticipated outcome is never guaranteed. Will the package of existing CHC funding remain the same, be enhanced, or possibly even withdrawn?
A negative MDT outcome could result in the local NHS Integrated Care Board (ICB) unilaterally reducing or withdrawing the existing CHC funding in place. Of course, if vital CHC funding is then withdrawn, the devastating financial impact left behind in its wake can be and overwhelming for families, who may then be forced to fund ongoing care from private means; typically being required to sell their own home to pay for care.
Families often consult with us as when faced with a pending review as they are extremely fearful that the NHS may try and use the review as an opportunity for ‘financial gatekeeping’ i.e., to withdraw current CHC funding; perhaps on unfounded grounds or misapplication of their own eligibility criteria – simply to save paying substantial ongoing care fees – even when the individual’s needs have not changed (or even possibly become more challenging). From experience, and considering the comments left on our Care To Be Different website over the years, such fears are not unfounded. The ICB is judge, jury and ultimately financial controller, and no doubt has a vested interest in the outcome, if not a conflict of interest. Therefore, such reviews should never be taken for granted. So beware!
Where an individual’s needs have significantly reduced, or become less severe or challenging, such that NHS funded care is no longer required, then that’s fair enough. We agree in those circumstances that CHC funding should rightly be reduced or withdrawn – which in theory should release more funds for those who absolutely are eligible.
The difficulties that some families face is that, even where CHC funding continues after a review, the existing care package may not be sufficient to meet the increased levels of needs, even if it is obvious to everyone that more funding is required. Such conversations can be huge frustrating when trying to plead with the NHS to increase the package of care.
Appealing
If the family feel the reassessment outcome is wrong, or that the process wasn’t carried out robustly, then there is an opportunity to appeal the negative decision (within 6 months of receiving the outcome letter). But again, appealing takes time. There is a process to follow and the chances of success diminish as you climb up the appeal ladder. Frustration and anxiety are common as the ICB won’t assist you to overturn their own negative decision, however fundamentally wrong or unfair it may seem.
Make no mistake, you will have a fight on your hands to persuade them and most families will not know how to approach the appeal, what evidence is required, or how to present it and argue their case.
This is an area where we strongly suggest you seek specialist advice and we recommend contacting Farley Dwek Solicitors, experts in this arena and have years of experience undertaking successful appeals.
Get help
We recommend that you seek professional advice and advocacy support if you have an upcoming review so you can be confident that the process is done fairly and robustly and is not just an excuse to formally withdraw valuable funding.
Please leave a comment below if you have encountered an unfair review to help others…
It is a battle every time get advocate
We have had awful trouble with CHC and funding and my Uncle is now in a care home and CHC are doing everything they can to reduce funding. It was interesting to read your comments “ The underlying purpose of the review is to ensure that the planned package of care in place is still sufficient to meet the individual’s needs” because they are most definitely not assessing to see if the package is sufficient to meet the needs. They assess will the sole aim to reduce funding. An assessor actually told me she had been given a list and was told that she had to save money and cut funding. She told me that she didn’t think it was right and left her job because of the pressure they were putting her under. Be under no illusion they don’t abide to the rules of having a duty of care , it’s all about money and if you are fortunate to get funding they are forever trying to reduce it. My uncle needs 1.1 and they are trying to reduce funding by hours when he’s asleep saying he doesn’t need 1.1 then but his sleep patterns are erratic and he often is awake all night. They tell you they will cut funding but then if there is a need for it to be reinstated they will review it. By then it’s too late. I have said that if they reduce my Uncle’s funding and he has a fall or worse I’ll hold them responsible. It’s crazy to think they can take it away and then wait for an accident and then look at reinstating it. That’s a duty of care ??? It’s truly awful what they put the families through. I nearly had a nervous breakdown dealing with it all. They need to be assessed themselves because o feel they are acting illegally but they hold all the cards. So many of us are afraid to rock the boat and complain for fear of them reducing funding or cutting it altogether. They ignore doctors reports and do what they want.
Of some interest in relation to the conflict of interest point is that the person at my father in law’s ICB who made the decision not to award CHC for him, the deputy chief nurse, is also the person appointed by the ICB to have responsibility for the funding of CHC. I only know this because during my research I came across an advert for her deputy which stated that the person appointed would have responsibility for CHC funding if the Dep. Chief nurse was absent for any reason. If this is not a conflict of interest, I don’t know what is and I propose to cite this in my appeal to NHS England – not that they will take the slightest bit of notice if what has gone on previously is any indicator.
It is quite clear that unless there is a ‘clear rationale’ then funding should continue.
My own funding has been in place for nearly two decades and, it doesn’t appear to be a problem when reviews are undertaken.
In my experience, it is being able to evidence the needs and, if required why an increase is required that determines the outcome. Be informed, be confident and use evidence of need and case law to win your argument. It works.
I agree, get professional help. I was successful in overturning a decision. It was though a complete nightmare.
I was on the verge of raising a safeguarding case ie the aggressive denial or withdrawal of funding for health care needs being an abuse through omission and neglect. I wonder how that would work.
I have a life-long friend who suffered a stroke in December 2023. After 7 Months in hospital and a further 6 months in a Level 1 rehabilitation centre he has just undergone full CHC assessment. I supported my friend’s wife as advocate in the CHC assessment and thankfully my friend was awarded CHC funding. Nevertheless, despite my friend’s severe disability it was a battle to achieve CHC funding and regardless of the focus of the assessment supposedly being to determine the patients care needs, the underlying politics and financial agendas were plainly visible. So now we are looking for an appropriate care home for my friend and anticipating the review in 3 months time. So this article could not be more timely. I note that, “ The underlying purpose of the review is to ensure that the planned package of care in place is still sufficient to meet the individual’s needs”. This is a useful lever that I will use if needed. I feel that my military background serves me well for this fight but any further advice from those with experience of this process would be appreciated. Watch this space.
I always read with interest your articles about NHS CHC funding as I have personally experienced the many many failings in a system that promises one thing but delivers absolutely nothing if they can get away with it.
It does not surprise me to hear that their conduct in the management of this so called service remains as bad as it ever was when I was fighting for my wife’s rights at a time that she and I were both badly in need of the help that CHC is supposed to provide
.The assessor from LASS colluded with the NHS assessor both during and after the MDT assessment to ensure that she would not qualify based on her not identifying as having a Primary Health . This is in fact only the tip of the Iceberg. The even bigger part of the problem is what happens once the patient has been denied CHC and thus falls within LASS departments means tested system. It is no exaggeration to say that my experience of this side of the 2 headed “Care System “!!! is in fact nothing other than a means to enable the local authority to extract every last penny from such vulnerable citizens. They achieve this by whatever means they choose, by lying, cheating, ignoring the law, refusing to answer perfectly reasonable questions and above all operating in a Fraudulent way to achieve their goal.
The faults in the operation of the CHC assessment is not only to save the NHS the cost of providing the care that a patient may be entitled to, but to ensure that the next step in the process can be enacted to help reduce the cost of those peoples care needs who have managed to fight their way through the mine field of proving they have a Primary Health Need.
After a considerable time and effort, involving much research and writing of letters, I did manage to prove that my wife’s MDT assessment was seriously flawed and the ICB accepted that at the time of the assessment there were no fewer than 5 categories that identified as being Primary Health needs, each of which in their own right would have given entitlement to CHC funding. Meanwhile the LASS were claiming that my wife had been assessed as being able to contribute over £1000 per month to her own care costs from monies that she simply did not have. I refused to pay even 1 penny of this money simply because their fraudulent assessment was based on illegal and unlawful interpretations of the law together with the fact that she did not have the savings or income that their calculations were based upon.
This led them to believe it was sensible to do 3 principle things (1) Tell more lies to cover up for the lies they had previously told. ( 2) Commence with scare tactics and threats. (3) To finally hide their heads in the sand, and refuse to even acknowledge or reply to correspondence from myself which included the asking of perfectly reasonable questions.
Their failure to apply the conditions as set down in law extended to not even following their own policies. They seemingly only apply such conditions if they are favourable to themselves but if favourable to the claimant then they are ignored.
I am, and will continue, to fight against these dreadful people who are remunerated most handsomely to fulfil specific job functions but choose instead to ignore their responsibilities and deny help to the very people they are meant to serve.
I will do anything I possibly can, within the bounds of the law, to name and shame those employees of Milton Keynes Council, in the hope that there will be a day of reconning for these dreadful people and that in doing so many others can be spared the trauma of living through a similar nightmare.
DAVID ALLOTT
Hi completely saddened the widespread disregard for vulnerable people and their families. I can relate fully with issues of CHC staff behaviour doing everything they can to manipulate and trick beaten down families to say the wrong thing. I have have experience of 7 year battle with reports refused as evidence,claiming they never received them,using questionable language and actions that would breach the mca,refusing to provide care plans so budgets cannot be estimated, forcing families to pick up the costs. We constantly record everything and send all information tracked. Is this what NHS CIC care has resorted to?