Know your rights – Appealing the CCG’s refusal to grant CHC funding.

Know your rights – Appealing the CCG’s refusal to grant CHC funding.

We recently came across a situation which we wanted to share with you as it is a warning to all those going through the CHC funding process.

The matter concerns a Clinical Commissioning Group (CCG) who are intending to launch an appeal to review their own funding decision some 3 years prior, where they approved NHS Continuing Healthcare Funding (CHC) for an individual’s care.

In short, the CCG now believe that their decision to grant CHC funding was incorrect, and that it should now be overturned and funding current withdrawn. And what’s worse, the CCG are also seeking a refund for CHC paid to the individual during this 3 year funded period!

Unless you are familiar with the National Framework for NHS Continuing Health Care Funding and NHS-funded Nursing Care (2018), you may not realise that this is fundamentally wrong and a clear abuse of process.

The CCG contend that ‘new’ evidence has now come to light which justifies ‘reviewing’ (ie overturning) the previous decision to award CHC Funding.

The CCG have attempted to justify their decision to appeal their own decision based on, “a legal thing in place.” When pressed, their representative could not identify what the ‘legal’ justification was. Certainly, the National Framework does not provide for this.

The CCG cannot simply overturn their own decision retrospectively, 3 years later, just because it’s costing them a lot of money to pay for this individual’s care or they have outlived their life expectancy.

The individual has long used their NHS funding award to pay for their package of healthcare needs, and so, to reopen matters after all this time is just not feasible and is grossly unfair. Nor is it compliant or permitted within the National Framework!

Beware! This latest development suggests that either this CCG are trying out new tactics to recoup funds from unsuspecting families, or else are simply incompetent and do not fully understand the National Framework.

So, if this happens to you, you must raise an objection in the strongest terms.

Firstly, for CHC Funding to be awarded, the CCG’s assessors must have carried out a formal assessment at a Multi-Disciplinary Team meeting using the Decision Support Tool. The assessor’s recommendations to grant CHC Funding will have been passed back to the CCG’s panel for further consideration and final approval. The CCG should follow the recommendation of their appointed assessors who will have had the benefit of assessing the individual first-hand in their care setting.

So, having considered all the care notes, contemporaneous evidence and the individual’s healthcare needs, and formed their decision, we cannot understand how the CCG can possibly seek to unravel and appeal their own decision made some 3 years prior!

Secondly, following guidance in the previous National Framework (2012), any appeal has to be lodged within 6 months of the CCG’s outcome decision to refuse CHC (or withdraw existing funding) being communicated.

Thirdly, it is for the individual patient (or their representatives) to lodge an appeal if they remain dissatisfied with the CCG’s decision to refuse or withdraw CHC Funding. Nowhere, does the National Framework provide for a CCG to appeal their own decision once they’ve granted CHC Funding if they retrospectively consider it was wrong! Stand your ground. This is a blatant abuse of process.

In the event that your relative has been refused CHC Funding, then the CCG will communicate their decision in writing with their reasons, and also stipulate the timescale for lodging an appeal.

The appeal deadlines were firmly established in the previous 2012 National Framework but were omitted in the revised version which came into effect on 1 October 2018. Perhaps this was an oversight, but it has caused great inconsistency throughout the country. Most practitioners are still relying on 2012 deadlines which allow 6 months to lodge an appeal. However, the omission to mention any appeal deadlines in the revised 2018 National Framework has given licence to some CCGs to use this to their advantage by imposing their own abbreviated, unreasonable and arbitrary deadlines, contrary to years of current practice.

Under 2012 National Framework you were permitted 6 months from the outcome of the Multi-Disciplinary Team’s decision to lodge an appeal to a Local Resolution Panel, and another 6 months from that decision to appeal to an Independent Review Panel conducted by NHS England. However, some CCGs have been taking matters into their own hands more recently and have been ignoring these deadlines, stating that the new National Framework in October 2018 overrides the old guidance. That gives them carte blanche discretion to impose any deadline to lodge an appeal that they deem fit – ranging from 2 weeks to the usual limit of 6 months.

Their apparent justification is based on Paragraph 195 of the 2018 National Framework 2018, which states:

All CCGs must have an NHS Continuing Healthcare local resolution process. They should therefore develop, deliver and publish a local resolution process that is fair, transparent, includes timescales and takes account of the following guidelines…

If you have ever had to make an appeal, you will know that it is essential to obtain all relevant care home, GP and hospital records as a bare minimum in order challenge the CCG’s Decision Support Tool and to present your appeal. It can, of course, take many weeks to obtain these records – despite the 30 day time limit imposed by GDPR – and longer, if the care home is no longer in business! It can then take many days (sometimes weeks) of painstaking work to consider each entry in these records and populate them into your own detailed written appeal submissions. Given the amount of paperwork that usually has to be reviewed when drafting an appeal, even the most skilled professionals with nothing else to do, could find it very tight to meet a 2 week deadline.

This inconsistency just fuels the opportunity for some CCGs to abuse existing practice and heap more misery and suffering on individuals as they struggle to fight the NHS through this complex process, fraught with anxiety and frustration.

Remember: You are entitled to have sufficient time to decide if you are going to appeal, to think about the evidence you will need to collate to support your case, and then how you are going to present your written appeal submissions.

This is a critical time which you must use wisely.

Do not delay or bury your head in the sand!

Even if you are given the full 6 months to appeal, you need to gather all your evidence together as quickly as possible in order to give yourself the best chance of success.

Don’t be pressured by the CCG into accepting an unrealistic or unfair timetable. Stand your ground and complain.

Lodging an appeal is an area where we would strongly recommend that you seek professional help as it could make the difference between getting (or retaining) CHC Funding or paying thousands of pounds a month in care home fees.

You can find lots more free information and resources on our website, but here’s a short selection of some previous blogs to help you navigate the CHC assessment and appeals process:

If you have been subjected to an appeal deadline and given less than 6 months, then let us know and tell others what you did about it. Please don’t mention any particular CCG.


New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

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

‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’


Don’t Give Up When Faced With Ongoing Delays

Frustrated with CCG delays? Here’s how to complain


Preparing for the Multi-Disciplinary Team Assessment

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

Don’t let the Decision Support Tool become a ‘tick box’ exercise

Can The MDT Panel Refuse To Proceed If I Have An Advocate?”


Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision

Rejected for CHC Funding? Part 2: How to appeal the Local Resolution Decision


  1. Susan H 6 months ago

    I am new in this area, and am quite appalled at what people are going through, and I agree with the comments on ‘ rights’, there are none if it’s not policed in some way. A question: can they not be taken to court over this? A bit naive of me I suppose but it seems that unless they are challenged en mass then nothing is likely to change in the near future and carers of indivduals will continue to suffer stress and CHC will continue to both behave in this appalling manner and fail in its duty.

  2. Shirley L 6 months ago

    This is absolutely appalling , how low will these people stoop ?

    Having recently been involved with the appeals process for more than 5 years with regard to my late mother , with no success of recouping any of the £211.000.00 she paid for her care , I thought I had seen all of the” tricks of the trade “ Continuing Healthcare teams use to deny funding , however this is unbelievable.
    This surely cannot be allowed to happen .

    I am in agreement that the media should be informed of the situation and I am in full support of any class action that may be needed to stop this happening .
    CCG.s are NOT adhering to the National framework .
    I wrote to Trish O’Gorman , Head of Continuing Healthcare in the UK , to highlight my mother’s case and this National scandal . It took 4 additional emails to get a reply from her but she insisted that she could not comment on individual cases .
    What a pathetic way to dodge the issue .
    I received the same reply from the office of the Secretary of State for Health and Social care , Matt Hancock , following a letter sent to him in which I raised the same issues .

    Read into that what you will . They should all hang their heads in shame .

    Thank you so much to the CTBD team who continue to assist families in so many ways and also to Rear Admiral Philip Mathias who is doing his very best to help all of us . I am in full support of everything he is trying to do .

    My mother’s case was featured in the Daily Express and the Daily Mirror in July of this year where the CCG in question admitted that “mistakes were made ”during my mother’s assessment but it made no difference to the funding decision !!!

    In other words , C C G s are a law unto themselves . !!! I think this has definitely proved to be true .

    • Care to be Different 6 months ago

      Thank you for your comments Shirley. It is a disgrace and we are doing our best behind the scenes to bring about change to this broken system. If you would like to discuss your situation with us to see if we are able to help you please do call us on 0161 979 0430 Kind regards

  3. Andy 6 months ago

    You state: So, if this happens to you, you must raise an objection in the strongest terms. But that means nothing to them. From my experience they simply ignore you.

    You state: This is a blatant abuse of process. Well that is typical behaviour. They are a law onto themselves.

    This is a horrendous new development in this ongoing scandal. I don’t see how they can claw money back without taking people to court.

    • Stephen Reeve 6 months ago

      Andy, so very much agree. Really get irriated by this ‘know your rights’ concept. What rights? There is no ‘right’ that says CCG must fund and as we all know there is no objective measurement of Primary Health Need. I have been fighting this for two years and mum is probably three months away from being evicted from her home of over six years because CCG withdrew funding and we are running out of funds. Mum has been assessed as Risk Feeding by SALT who state that every ingestion is a risk of aspiration. (three 999 calls in past few months & visit to A&E). She is High Falls Risk (catastrophic fall last December). Significant eye problems and everything else that goes with end stage Alzheimer’s. The home have told Adult Care that moving mum would be catastrophic but do they care? Absolutely not. Oh, forgot – managing company of care home have now decided that if people living in the home are awarded CHC then they have to leave. Suggestions please, but don’t talk about rights.

  4. Michelle wetherall 6 months ago

    Thanks CTBD for continuing to highlight topics of concern.
    What an absolute disgrace this is.
    So it begs the question, will other CCGs follow suit and try to re claim funding from claimants that have passed away?
    It never ends! Now families will be left wondering if their CCG are going to pursue them for money long after claims are settled and in many cases their loved one has died.
    This simply can not be allowed. It will only add further to the national scandal that is CHC. I do hope that CTBD have forwarded this latest information to Victoria Derbyshire.

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