Is your relative waiting for a review of their CHC care package?

Is your relative waiting for a review of their CHC care package?

It will not come as a surprise to learn that most NHS Clinical Commissioning Groups (CCGs) are generally understaffed and under-resourced, and so have to look externally to recruitment agencies and pay for additional resources. One such area for nurse recruitment is the need for CCGs to carry out regular reviews of existing NHS Continuing Healthcare packages, to determine whether they are still appropriate to meet the recipient’s ongoing healthcare needs or whether funding should be removed.

NHS Continuing Healthcare (‘CHC’) is a package of fully-funded care provided by the NHS free of charge to individuals who have intense, complex and unpredictable healthcare needs. CHC is not means-tested, and is free at the point of need. So, if an individual meets the eligibility criteria, they are entitled to this free care for all their healthcare needs, and this includes the cost of accommodation in a care home or other care facility.

Don’t get CHC confused with social care which is provided by the Local Authority and is means-tested. For more information, read our blogs:

Part 1 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs and Healthcare Needs

Once CHC has been awarded, many families wrongly assume that funding will be in place for the rest of their relative’s life, to cover the cost of care, whether living in their own home or in a care home. That is a fundamental misconception.

The revised National Framework (October 2018) specifically deals with reviews and sets out the guidance. CCGs are obliged to review individuals 3 months after they have received CHC Funding, and again at least every 12 months thereafter, to check that the package of care is still sufficient to meet their ongoing healthcare needs. The underlying intention of the National Framework is that these reviews are not to be used as an opportunity to conduct a fresh reassessment of the individual’s healthcare needs, but are means of genuinely checking that the existing package of care is still adequate to support their needs.

The underlying risk to individuals is that, in some cases these 3 and 12 monthly reviews have given CCGs a veiled excuse to remove existing CHC.  Annual reviews can lead to CHC Funding being withdrawn arbitrarily based on flawed assessments, incorrect information or insufficient knowledge of the patient’s day-to-day needs.

Our caretobedifferent website contains many personal experiences shared by contributors, detailing how their relative’s CHC Funding was wrongly withdrawn after a review, only for it to be reinstated following a lengthy and tortuous appeal.

Why was CHC Funding wrongly withdrawn? Because it’s all to do with saving money!

We know that the NHS has to save £855m by 2021, and so, these reviews can potentially present an opportunity for CCGs to screen individuals out of the system, and in doing so, put them through the frustrating process of appealing if they believe the decision is wrong.

So, if your relative’s CHC package of care is withdrawn incorrectly, the burden now shifts to you to appeal. That is no simple task and you can expect an uphill battle fighting the NHS to get their funding reinstated.

Inevitably, some families will simply give up or be left floundering, not knowing how to go about appealing successfully, and what is really expected of them in the appeal process. Others who try and go it alone, are likely to get steam-rolled out of the ballpark by the CCG’s representatives, who can use the rules (ie the National Framework for NHS Continuing Healthcare), to their advantage. Unfortunately, some individuals may not survive long enough to get their CHC Funding reinstated, and so, their current claim for CHC will become a retrospective claim instead, and get kicked into the long grass by the CCG or put on the back burner – until you stir it up. Those who cannot do this themselves or lack the confidence to tackle the CCG, should seek professional advice. Visit our one-to-one page if you need help.

The cost paid to recruitment agencies to supply additional support for these reviews, may seem a waste of valuable NHS resources. But, it is obviously a price that some CCGs are willing to pay – both to help clear their backlog of outstanding reviews – and potentially to save funds at the same time by ‘financial gatekeeping’ contrary to the National Framework.

We agree that CHC Funding should be withdrawn where it is clearly no longer appropriate or where the individual’s healthcare needs no longer exist – as that, too, is a waste of valuable NHS funds.

Equally, we have no objection to CCGs recruiting external resources from outside the NHS, to assist in these reviews, if they are satisfied that is a truly more cost effective option. But, the appointed assessors must be familiar with the patient, know and understand their daily healthcare needs, and be trained in the National Framework. What is not acceptable, in our opinion, is assessors being recruited to undertake reviews, who are apparently clueless as to the individual’s needs (perhaps meeting them for the first time), who don’t understand the National Framework, and who are empowered to make arbitrary decisions which bear absolutely no reality to the patient’s challenging daily needs.

These are potentially life-changing outcomes which could make the difference to having ongoing NHS ‘free care at the point of need ‘, or having to self-fund and pay for it from private means – and in many cases having to sell your home.

The public needs to have confidence in their CCG and be certain that any review of their relative’s CHC award will be conducted properly, fairly and robustly in all cases. Sadly, as many readers will testify, that has not always been the case. So beware! Don’t let your relative’s review of their care package turn into a fresh reassessment of needs, contrary to the National Framework.

Take, for example, the case of John Morrison, featured on BBC’s Victoria Derbyshire show. This is an example of one such disgraceful failing by the NHS. John suffers from cerebral palsy and has no use of his limbs. John is totally dependent on his family and carers to do everything for him. John had CHC in place before it was wrongly withdrawn in 2009 following a reassessment, leaving his family to fight a 10 year battle to seek reinstatement of funding. In the meantime, John’s family are reported to have paid out £300,00 which they are now seeking to recover retrospectively, plus interest. John’s mother, Suzanne, told the BBC, “This is the dark side of the NHS.  This is the hidden side.  This is the disabled side, the dementia side, the Alzheimer’s side…..”

If CHC Funding is removed, then the likely result is that your relative will have to pay for their own care. If you believe the decision is wrong and want to challenge it, then you only have 6 months to lodge an appeal – but again, may be forced to pay for the cost of care (ie self-fund) until the appeal is heard and the outcome is notified to you. Pre-COVID-19, that appeal decision could easily come a year later, costing your relative upwards of £45,000 to £100,000 a year, depending on the particular care home’s annual fees. We deal with appeals extensively in many articles on the subject which you can find on our caretobedifferent website.

But, with the advent of COVID-19 and the recent Coronavirus Act 2020, these 3 monthly and annual reviews are currently on hold. That will benefit those individuals who are already in receipt of a CHC package, as they will now be saved the anxiety and stress of a review, and of course, the risk that their CHC Funding could be withdrawn. However, those whose current package is now inadequate to meet their increasing needs, may well be underfunded. For more information, read our blog:

COVID-19 – The Impact on NHS Continuing Healthcare Funding (‘CHC’) and How The Current Changes Will Affect You!

For further background reading on the subject, also take a look at:

My Dad Has Dementia – So Will He Automatically Qualify For CHC Funding?

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Let’s Talk Fast Track! Vital NHS Funding Withdrawn After 3 Months – The Latest NHS Controversy…

If your relative has had their CHC Funding improperly or incorrectly withdrawn at a 3 month or annual assessment, and you have mounted a successful appeal, let us know and share your story with others below.



  1. ruth booth 1 month ago

    we had a DST MEETING on the 26 of febuary for full funding. it is now july we still havent heard anything is this normal

  2. Steve Moxon 2 months ago

    As I recall, the new rules state that a review is not to be undertaken unless prompted by a significant change in the patient’s condition, and even then only to check that the care package is still appropriate or needs amending.
    There has to be a priori evidence of a significant change for a review to be initiated.
    It seems NOT the case, therefore, that annual reviews remain.

    • Care to be Different 2 months ago

      Hi Steve – you are mistaken I’m afraid.

      Page 52 (paragraphs 181 to 185 of the 2018 Framework clearly states as follows:-

      “NHS Continuing Healthcare Reviews (at three and 12 months)

      Purpose and frequency of reviews

      181. Where an individual has been found eligible for NHS Continuing Healthcare, a review should be undertaken within three months of the eligibility decision being made. After this, further reviews should be undertaken on at least an annual basis, although some individuals will require more frequent review in line with clinical judgement and changing needs.

      182. Bearing in mind the minimum standards set out above, a guiding principle is that the frequency, format and attendance at reviews should be proportionate to the situation in question in order to ensure that time and resources are used effectively.

      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.

      184. It is expected that the most recently completed Decision Support Tool (DST) will normally be available at the review and should be used as a point of reference to identify any potential change in needs. Where there is clear evidence of a change in needs to such an extent that it may impact on the individual’s eligibility for NHS Continuing Healthcare, then the CCG should arrange a full reassessment of eligibility for NHS Continuing Healthcare.

      185. Where reassessment of eligibility for NHS Continuing Healthcare is required, a new DST must be completed by a properly constituted multidisciplinary team (MDT), as set out in this National Framework. Where appropriate, comparison should be made to the information provided in the previous DST. CCGs are reminded that they must (in so far as is reasonably practicable) consult with the local authority before making an NHS Continuing Healthcare eligibility decision, including any re-assessment of eligibility. This duty is normally discharged by the involvement of the local authority in the MDT process, as set out in the Assessment of Eligibility section of this National Framework. CCGs should ensure an individual’s needs continue to be met during this reassessment of eligibility process.

      To clarify therefore, annual reviews should still be undertaken to ensure that the current Care Plan and placement remain appropriate. The CCG cannot be criticised for undertaking an annual review. Only where a change in need is identified which may impact on CHC eligibility, is it necessary to undertake full assessment by way of DST.

      Kind regards

  3. Steve Moxon 2 months ago

    I see you here now state that reviews are on hold, whereas in your previous post on this you said that it is expected that their frequency will decrease (or possibly stop).
    Is that what you infer from guidance, or from reports of patients/relatives exerience, or is it now the official position?
    It’s anyway hard to see how formal multi-party reviews could be conducted given the necessity of visiting the care home by nurse assessors and with relatives to conduct the assessment, which obviously would be in serious breach of strict ‘lockdown’ of all care homes.
    I had heard it suggested that reviews could be conducted virtually, but surely they cannot: the meeting face-to-face with the patient is absolutely core to assessment, and without it an inaccurate assessment easily could be made.
    Of course, there might have to be changes to the treatment to take account of a patient’s changed condition, but this is just usual clinical response, and if a doctor can’t really advise remotely and has to be called, then that wouldn’t breach ‘lockdown’ as it’s actual medical care. So any change then would not be recognised in a ‘care package’ formally agreed by all parties until after ‘lockdown’ ends, such is the emergency situation … I assume.

    • Care to be Different 2 months ago

      Our experience from speaking to families is that most reviews are on hold. As you say Steve this is unlikely to change until lockdown of the care homes comes to an end. Kind regards

  4. Michelle Wetherall 3 months ago

    Thanks CTBD! Useful information as families navigate CHC in these unprecedented times.
    I would just add that families should be mindful of sending any documents to CCG/CHC offices during this period. Most CCG offices are closed as staff work remotely.
    Post is not getting delivered by the Royal Mail and is being held by them in their distribution centres. Unless CCG’s specifically set up a delivery method with Royal Mail then I’m afraid sacks full of post are just being held.
    It is the same for the Parliamentary Health Ombudsman. I received a call today from a call handler tasked with just answering emails about cases.
    They are not taking on any new cases and any mail that is sent to them is being held by the Royal Mail. It could be weeks before it is collected and months before it is opened!
    The advice at this time is to communicate through email only.
    Even then, if your case hasn’t been assigned a case handler then your unlikely to hear from them for months!
    I suspect lots of families will give up on CHC, thinking that their case is over.
    I would recommend that families keep sending their complaints and appeals and requests for updates via email. This keeps your case “on the desktop!” as handlers work through emails.
    Don’t give up!

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