Ration Care Funding: We know that certain parts of the country are more likely to award NHS Continuing Healthcare (CHC) than others. This is often referred to as the ‘postcode’ lottery. Where you live can increase or decrease your chances of receiving CHC Funding from the NHS.
CHC Funding is assessed and paid for by the NHS, via its local Clinical Commissioning Groups (CCGs). CHC Funding is free of charge and is not-means tested. If you are 18 years or older, have had an accident, disability or illness, CHC will pay for your all your long-term assessed healthcare and social care needs as well as your accommodation – providing, of course, that you meet the eligibility criteria. Those criteria and guidance are set out in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.
Don’t make the mistake of confusing healthcare needs and social care needs! Social care needs are paid for by the local authority and are subject to means-testing, whereas healthcare needs are paid in full by the NHS, are not means-tested, and are free at the ‘point of delivery’ (ie need). Specifically, the National Framework, states:
35. Where individuals receive care, treatment or support from the NHS this is normally under the provisions of the National Health Service Act 2006, referred to from this point onwards as the NHS Act. This support is provided free at the point of delivery to the individual.
180. NHS care is free at the point of delivery. The funding provided by CCGs in NHS Continuing Healthcare packages should be sufficient to meet the needs identified in the care plan.
For more information read: Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs.
Families ask us…Why?
Why is the bar to obtaining CHC Funding set very high and why is the whole application process so tortuous, subjective and complex?
Why do so many families struggle to get this vital long-term CHC Funding for their relative in need of care? And more critically, once they have it, how do they keep it?
Why do we hear so many stories of funding being withdrawn following a review – causing untold anxiety, anger and frustration?
The most likely answer is perhaps due to a combination of:
a) budgetary constraints and money ie rationing care and/or;
b) incompetent or inadequately trained assessors, and;
c) being able to recruit highly proficient quality assessors due to a high staff turnover.
If correct, it is hardly surprising that so many individuals who are absolutely entitled to CHC Funding are being failed by the system and the application of the National Framework guidance which is designed to protect them.
No wonder there is an obvious anomaly, that despite an ageing population, so few people by comparison qualify for CHC funding. Read our blog: “Care crisis fear as over 85s to double by 2043”.
The NHS are under pressure to save £855m by 2021. Although paragraphs 37 and 41 of the National Framework categorically state that ‘financial gatekeeping’ should never be a factor when determining eligibility for CHC Funding – in the absence of other explanations, it is hard to find a plausible reason why so many individuals are not awarded CHC funding, or those that are, can have it wrongly withdrawn without robust justification. The National Framework states:
37.3. CCG decision-making processes should not have the function of:
- financial gatekeeping
41.2. CCGs do not have to use a panel arrangement as part of their process for ratifying eligibility recommendations, but if they do the panel should not be used for financial gatekeeping.
Contrary to the guidance, it appears that some CCGs are more aggressive in seeking to withdraw existing CHC funding than others. But again, perhaps that could be a symptom of the ‘postcode lottery’ rather than any calculated policy on protecting funds.
Yet, when an individual is perfectly entitled to receive CHC funding (and has been receiving it for many years to help with their long-term care needs), it is hard to understand how it can possibly be withdrawn – especially, if due to the nature of their illness or injury, there is no possibility of a reduction in the level of need over time, or their needs have remained constant since the last assessment, if not increased!
Annual Reviews – an opportunity to withdraw funding:
Paragraph 181 of the National Framework provides that CCGs are obliged to carry out reviews of CHC funded care packages, initially after 3 months from when the eligibility decision is made, and then every 12 months thereafter. According to the National Framework:
183. These reviews should primarily focus on whether the care plan or arrangements remain appropriate to meet the individual’s needs. It is expected that in the majority of cases there will be no need to reassess for eligibility.
142. The decision-making rationale should not marginalise a need just because it is successfully managed: well-managed needs are still needs. Only where the successful management of a healthcare need has permanently reduced or removed an ongoing need, such that the active management of this need is reduced or no longer required, will this have a bearing on NHS Continuing Healthcare eligibility.
In short, the 3 month or annual review is a safety mechanism to ensure that the individual’s needs are still being met by the care package in place. If their needs remain as before, then the care should continue unabated. However, if they have increased, the CHC care package should also be enhanced to meet those higher demands. However, unless there has been a substantial reduction in the individual’s needs, there should be no need to reconsider their eligibility for CHC funding at the annual review: review and reassessment are separate entities and one does not naturally follow the other in every case. Of course, where the need has been permanently removed and no longer exists, then the CHC Funding should be withdrawn upon reassessment.
However, what is clear is that CCGs should not try to use the 3 month or annual review as an opportunity to remove an individual’s CHC Funding when, in fact, their eligibility should never have been in question. This is entirely in contravention of the National Framework and there is no justification for it. What is more galling for families, is when their relative has obvious ongoing continuing care needs – which have not significantly changed – but face the daunting prospect of them being referred to a reassessment and funding being withdrawn.
It is no wonder that families going through the application or review process become so stressed. The fear of vital funding being withdrawn could throw their relative into the open arms of the local authority and subject them to a means-tested assessment for social care funding. If they don’t meet the local authority assessment criteria, they will then have to pay for their own care out of private funds and savings. Families will then be forced to appeal and join the back of the queue, and potentially face years of delay whilst having to finance their relative’s care.
Unjustified reassessment:
Here are some examples where it would be unjustified for a CCG to conduct a reassessment of CHC eligibility following an annual review, eg where there has been:
- Failure to review the care arrangements;
- Failure to conduct annual reviews;
- Conflated annual review combined with reassessment where there is no justification to do so;
- Failure to identify any significant change in needs to justify full reassessment;
- Failure to make any comparison with the most recently completed Decision Support Tool (DST);
- Failure to apply the ‘well-managed need’ principle;
- Failure to accurately summarise the patient’s needs;
- Too much reliance on written records, over verbal staff testimony, despite being aware that the care home records were not reflective of needs;
- Minimising and marginalising the patient’s needs;
- Improperly analysing the four Key Indicators (Characteristics);
- Failure to ensure consistency of assessment;
- Failure to provide adequate procedural and clinical training for its staff;
- Failure to take the family’s or patient’s view of needs into account;
- Failure to recognise/correct clinical failings in its assessment when informed by the staff/family;
- Expressing the view that it doesn’t matter if CHC is withdrawn because the individual will be funded by the local authority anyway!
Justified reassessment:
There are various ways a CCG can go about the annual review, but here’s an example where it would be justified to conduct a reassessment of CHC eligibility following an annual review:
Scenario: The CCG’s Nurse Assessor visits Mr A to conduct a review of his care package. The DST or CHC review template is completed and, when compared with the DST from the previous review/assessment, Mr A’s needs are evidenced to have reduced in a number of key domains. For example: Mr A, who was assessed as meeting the CHC criteria on the basis of the complexity and intensity of his behaviour, has subsequently fractured his hip and is now bedbound; his dementia has advanced and he no longer resists necessary care or presents as distressed; all psychotropic medications have been withdrawn with no negative effect on his behaviour, psychological state or presentation; Mr A has been discharged by the Community Mental Health Team and is no longer under the care of the Community Psychiatric Nurse.
In this scenario, the CCG would be justified in proceeding to a full reassessment of CHC eligibility. The Nurse Assessor should make a recommendation to the CCG that Mr A’s needs have changed and a full MDT, with a local authority representative, should be convened to reconsider CHC eligibility.
Remember, if your relative’s CHC funding is withdrawn, they are most likely to be passed over from the NHS to their local authority and with it, the financial burden. Your relative with then be subjected to a local authority means-tested assessment, and if they have assets or capital (including a home) valued in excess of £23,250, they will end up self-funding and having to pay for their own care privately.
We applaud Admiral Philip Mathias’ pioneering public campaign to bring the NHS to task and create a fairer and more transparent process. For more information watch his recent TV interview with Victoria Derbyshire https://www.youtube.com/watch?v=Fc3fsSEnEBo and visit his website here: www.nhschcscandal.co.uk
Here are some other useful blogs for additional reading around the subject:
Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’
Is your relative waiting for a review of their CHC care package?
Should you pay care fees if your NHS Continuing Healthcare Funding is refused or withdrawn?
Over the years, we have been contacted by many families facing the worry and anxiety of an annual review, especially as they are already aware that critical CHC Funding for their relative could be referred for reassessment and possibly withdrawn. If you need specialist advocacy help visit our 1-2-1 Support page.
If you feel your relative has been the victim of a poor or biased review and has then had CHC Funding unfairly or wrongly withdrawn, share your details below and let others know how you went about getting it reinstated, whether you were successful, and how long it took…
 |
 |
Another excellent, detailed and highly pragmatic article. Thank you.
Have you further information and guidance on what to do and say when it is argued that the patient’s care and needs are now “Routine”? This seems to be slipping in where “Managed Needs” was previously used, and is sometimes used to discount the level of care needed, often during Review.
order of assessments 1 3 2
PUPOC
assessment appeal 28/06/2014 assessment
to
23/10/2014
date of assessment 01/08/2013 11/04/14 22/07/2016 24/10/2014
behaviour L M No needs H
cognition S S H S
communication H M L H
This shows just how ridiculous a CCG can be when it downgrades a previously anassessed period of care despite scoring higher before and after. Backed up by NHS England! Now on route to PHSO – good job my late mother can’t see it – unbelievable!
The failings you highlight here are exactly the hell I am still going through, three years on.
My CCG called a for annual review just seven months after the previous one because they couldn’t find the details of the care package. But they didn’t tell us this, they just kept lying about the reason.
Then, despite the strongly worded letters from consultants, GPs, specialist nurses etc, the outcome of the review was for an MDT to reassess eligibility. But the story is more sinister. My wife, who is in her 40s, has life-threatening epilepsy. One seizure could kill her due to complications that can occur. The assessor wanted to reduce the hours of care during the day. We said we would appeal any reduction so he changed the outcome.
There were other failings and the CCG did call for another review two months later (but failed to answer and have never answered, why the reviewer changed the outcome).
The second review accepted that my wife had one priority (should have been two but she scored breathing as no needs) and two severes. She agreed my wife was eligible but had to go to MDT. Why? A small improvement in an insignificant (to the main health needs) domain. She said it was “simply the guidelines”.
A challenge to this outcome resulted in the unlawful altering of the review outcome by a senior nurse who had no consent to review the medical records. Now there was just one severe.
Formal complaint – and the head of CHC at the CCG reviewed the medical judgement for herself and still decided an MDT should be called. But the complaint was about the process followed, not the clinical judgement. The Head of CHC did not have consent nor our knowledge that she would review the clinical judgement.
The head of CHC then lied to us. She accepted that the process was wrong but the case had to go to MDT due to the paperwork. But the truth, as found in emails from a Subject Access Request, was that the head of CHC felt there may be an outside chance of cancelling the care package.
Roll on two years, and multiple complaints to CCG, PHSO, NMC, ICO, MP and Social Service (plus some tampering of documents by the CCG). The. CEO has accepted that there were failings and that my wife is clearly eligible and will be eligible for the rest of her life unless there is the unlikely miracle cure.
But the CCG still denies any wrong doing.
All this because they wanted to save money as there was a lot of social care in the package. Take the social care out and health care is need 24/7 (and I do it all unless I am at work). Only last year, the CCG was self congratulating themselves in saving £14m from CHC against a target of £11m. Just so happens that the rate of eligibility at DST has dropped from 31% to under 20% in the last two years. And when you consider that they called an MDT for us because we wouldn’t agree to a reduction in the package, they called an MDT instead.
This has destroyed our lives for the last three years. Severe depression and anxiety multiple times and I lost my career when I was an executive headteacher.
But I will not stop. I will get justice for me and my family. And I am going further. I am part of the campaign team with Rear Admiral Philip Mathias. Having created a website about my own case, I led on the website for the Rear Admiral’s campaign.
I don’t agree with suggestions that assessors must be very badly trained. On the contrary I believe they must be very deliberately trained in how to misinterpret, ignore, misapply and in every other way disrespect the National Guidelines. Proof of this would surely be extremely helpful to the Judicial Review. That proof can be obtained through a Freedom of Information Request for all induction materials and all training materials for CHC staff/assessors. I hope the Admiral’s team are pursuing this.
Then there are the comments of the judge in the Pamela Coughlan case that his judgement means that the majority of patients in nursing homes should be funded by the NHS and the observation that if the eligibility criteria of the DST had been applied to Pamela Coughlan she would not have been found eligible, supporting the view that the National Guidelines/DST are themselves unlawful.
I don’t know why Care To Be Different and other sources stress the importance of the difference between Health Needs and Social Needs. I have never seen any convincing explanation of this difference, To me it is simple. Ignoring medication and medical procedures (which surely are health needs) all other needs are identical whatever description may be applied to them. Obviously they will vary in degree between patients and not all patients will have all needs, so some may be fully mobile, others will be able to feed themselves. Surely these needs are primary health needs if they are the direct cause of an underlying medical condition. Denying the relevance of the diagnosis, as the National Guidelines do, is a denial of common sense, a denial of the Coughlan judgement and a denial of justice.
Take the case of Mr A in the example in the article above. He was assessed as meeting the CHC criteria on the basis of the complexity and intensity of his behaviour, has subsequently fractured his hip and is now bedbound; his dementia has advanced and he (is) no longer (able to) resist(s) necessary care. Have his care needs reduced? No. Being bed bound his needs have almost certainly increased. True they may be easier to meet because of lack of resistance and he may no longer present the same threat to his carers but that is because his medical condition has deteriorated. Is it truly justifiable or justice to reclassify his needs as no longer primarily medical when they have actually increased due to the progression of his medical condition? And he has been discharged by the Community Mental Health Team and is no longer under the care of the Community Psychiatric Nurse. Is this because his mental condition has been cured? No it’s because they consider that they can do nothing more to help him and probably because they want to reduce their case load to save money. It is certainly not indicative of an improved health condition nor of a reduction in Mr. A’s needs.
I hope that the Judicial Review will find the National Guidelines/DST unlawful in some important respects and decide that where the care needs are directly caused by the medical condition they are the responsibility of the NHS.
My relative has not yet had and is due for a first review. There were interminable delays and numerous breaches of the NG before and during the full assessment and I am fearful of the review. Mr. A’s (fictional) case is of great interest and concern to me for my relative’s condition has considerably worsened since the full assessment. In the year before that assessment blood was drawn on three occasions from carers and other people but my relative no longer has the mobility in her arms to be the same threat. In addition she has been discharged by her CPN because they consider they can do nothing more for her. And of course that is one less voice and vote for her in the MDT if it came to another assessment.
I have some useful information and correspondence which should be of interest to the Admiral’s legal team.
Thank you so much for the work you do. I am also stressed out by the thought of the next Review to be carried out.
I have contributed to the court case twice and will continue to do so.
It is an appalling system and people and relatives
affected by this should be so grateful for the unselfish work you do.
Kind regards Kathy Sawdon