Don’t Give Up When Faced With Ongoing Delays

Don’t Give Up When Faced With Ongoing Delays

As well as being a ‘national lottery’ as to which areas around the country are more likely to award NHS Continuing Healthcare Funding (CHC), it is also much of a lottery as to how quickly each NHS Clinical Commissioning Group (CCG) will process a retrospective claim for wrongly paid care home fees.

It seems so unfair that individuals who have saved all their lives for a rainy day, paid their taxes and at a point when they need the NHS funding for all their healthcare needs, are being wrongly turned down for CHC Funding – resulting in them selling their home to pay for their care, or else using up their private life-time savings.

If you believe that your relative has been wrongly charged for care home fees which should have been paid for by the NHS, you are entitled to request that they undertake a retrospective review for any unassessed periods of care after 1st April 2012. Write to the CCG making your request.

If successful, your relative could be entitled to a substantial repayment of care home fees, plus interest. That refund could amount to tens of thousands of pounds in wrongly paid care fees.

How far can I go back?

Previously, you could claim a refund going to back to 2004, but only if you had lodged a complaint before 31st March 2012.

If out of time, you can now only claim a refund for care fees paid from 1st April 2012 to date.

Since this new deadline, we have come across many successful cases where refunds have been granted, dating as far back as 2012.

Unfortunately, due to incorrect assessment decisions, compounded by inordinate delays caused by CCGs, some of these cases are only just now resolving – some 7 years on! That gives you a flavour of how difficult and long it can sometimes take to achieve a successful outcome, and how much perseverance and resolve you need to stick to your guns!

Read our blog: Has your retrospective claim for care fees been rejected?


Many families who embark on this retrospective reclaims process will either get fed up and give up or get bamboozled during the process, and potentially miss out on the opportunity to reclaim their entitlement to a substantial refund. (All pleasing outcomes for a CCG whose goal is to protect NHS funds and their allocated budget!)

CCGs will not make life easy and will make you work hard for every penny, often putting up obstacles and hurdles along the way to try and frustrate your claim and deflate your energy and resolve. Whilst you can, of course, make a retrospective claim yourself, many families find it beyond their emotional, physical and mental capabilities to do. Battling the NHS for your relative’s right to funding is complex and hugely time-consuming, and for most it is necessary to seek the reassuring help of professional expertise to guide them throughout this reclaims process and give them the best chance of success.

The first hurdle is to persuade the CCG to undertake a retrospective review, and refusal can, in itself, lead to a complaint.

If successful, and the CCG agree to carry out a retrospective review, they will allocate the matter to a Nurse Assessor. The Nurse Assessor will collate all your relative’s medical and care home records and populate salient entries into a detailed Needs Portrayal Document (incorporating the Decision Support Tool).

In support of your relative’s claim, you will need to draft a considered written Submission in reply to their Needs Portrayal Document, checking the entries recorded line by line against the records you have obtained, and pointing out any missing entries and highlighting any errors, misunderstandings and wrong assumptions. To do this task diligently is very time-consuming and can sometimes take many hours, spanning several weeks. Given that a successful claim could result in your relative recouping many thousands of pounds in wrongfully paid care fees, getting professional support is a price worth paying if you require help. For more information, visit our one-to-one page for specialist advice.

Complain, complain, complain!

If you or your relative are in the process of starting a retrospective claim, embarking on an appeal, or stuck in the CCG’s appeal’s pipeline, then be prepared for lengthy delays!

Don’t be any under illusion! Making a retrospective claim can sometimes take years,  This is not PPI, where you write a letter of complaint and a cheque arrives in a matter of weeks! The reclaims process follows the National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care (revised 2018).

Case study:

• A retrospective claim was presented to a CCG in September 2015.
• After numerous chasers, the letter was eventually acknowledged in May 2016.
• The CCG were understaffed and unable to deal with the retrospective cases.
• In January 2017, the CCG wrote to advise that the case was to be transferred to the Shared Services Team.
• That letter was not received until July 2017 and the case eventually transferred in September 2017.
• Despite regular constant chasers, the family representatives were told in April 2018 that the matter was still awaiting allocation to a Nurse Assessor to complete a pre-screen review.
• In September 2018, 3 years later, the family were still waiting for the Checklist Assessment to be completed.
• The matter is still awaiting review!

Such delays are totally unacceptable. No wonder families and their legal representatives are becoming extremely frustrated due to the incompetence and lack of NHS funding available to cope with these retrospective reviews.

Top tips:

1. Don’t just accept the CCG’s delays. COMPLAIN at the first sign of delay.

2. Keep chasing the CCG for progress and updates.

For further help, read our blog on the art of complaining: ‘Frustrated with CCG delays? Here’s how to complain’.

Don’t be slow to use the CCG’s complaints procedure

Most CCGs are grossly understaffed, adding to delays. Others are plainly inefficient and less competent in processing these retrospective claims; raising unreasonable barriers to frustrate you and your claim; arguing invalid points (eg as to previously assessed periods) or raising procedural points, and making you jump through unnecessary hoops at their whim just to comply with some arbitrary internal process they have introduced (extraneous to the National Framework).

If you encounter similar problems and remain dissatisfied, do not hesitate to write to the CCG for their internal complaint’s procedure. Complaining will get their attention!

However, if your complaint is then rejected by the CCG, complain to the Parliamentary and Health Service Ombudsman (PHSO) and seek their intervention. The PHSO are not generally quick to investigate matters either, but will hold the CCG to account if there has been an abuse of process.

The onus is on you to progress matters.

All these tiers of complaint do take time. In the meantime, the CCGs can refuse to take any further action, and sit back, letting the complaints process take its time to work through the system, in the hope that the claim may not proceed. This can be hugely frustrating and time-consuming, as you prepare lengthy written arguments of complaint to justify why the CCG’s handling of this retrospective review is fundamentally wrong. In our experience, more often than not, the PHSO will uphold your complaint against the CCG as being valid and recommend that the CCG reinstate the retrospective case. The CCG should follow the PHSO’s recommendations and then reopen the case. In the meantime, many months may have lapsed from your initial complaint to the CCG before the claim is resurrected and goes back into the CCG’s queue for allocation to review and by a specialist nurse assessor.

Sadly, the reclaims process can often become so protracted, that many individuals die in the meantime, leaving their families to pick up the pieces and gather the strength to continue with the retrospective claim to recover care home fees.

How can it be right that families have to wait so long to find out whether their relative is entitled to reimbursement of care fees?

Clearly, it is not in the CCG’s interest to process these reclaims quickly, because, if successful, it means repaying families substantive care home fees, plus interest. Cynically, therefore, the more cases that are rejected and pushed down the appeals route, or the longer they can drag out a retrospective review, the more chance there is that families will give up in frustration.

A number of CCGs have been named and shamed in the press over the years for their delays and incompetence. It is a question of perseverance. Do not give up or give in!  If you believe that your relative has wrongly been charged care home fees that should never have been paid in the first place, had a proper and robust CHC assessment been carried out, you must fight on, however long it takes.

Remember to claim interest!

Furthermore, interest is accruing on the sum to be reimbursed, which was being paid for by the NHS.

Since the 1st April 2015, interest is paid at RPI rate. For decisions reached before this date, interest is payable at the statutory rate of 8% per annum.

In exceptional cases, where the CCG has delayed matters unreasonably, or their conduct has been so appalling, you can try and argue for 8% interest per annum – even if the decision to award funding retrospectively comes way after 1st April 2015.

Argue, had the CCG correctly assessed your relative in the first place, and then not wrongly forced you through the lengthy appeals process, the correct outcome as to CHC Funding would have been made before 1st April 2015. As such, interest would have been paid at the higher rate of 8% per annum.

For more information, read these helpful blogs:

Can I claim interest on my refund of care fees paid?

Watch out for the CCG’s latest tricks to save costs

Make sure that you have proof of payment

Getting the CCG to accept they wrongly assessed your relative and will make reimbursement is not the end of the matter.

Even if you win the case and the CCG agree to reimburse the cost of care fees, it is then taking most CCGs far too long to process repayment – sometimes spanning several more months!

Even at this late stage, some CCGs won’t rest and will make unreasonable demands, requiring you to prove your losses and show what exact payments were made for care during the reclaim period.

Once satisfactory proof has been provided, it can then take some CCGs an inordinate time to draft their calculation offer (with interest) for reimbursement. You must chase them regularly!

We recommend that you read our blog:

What Evidence Do I Need To Prove My Claim For Past Care Fees Paid?

Make sure that you have legal capacity to receive payment

If your relative is living when the CCG are due to release payment, then you will need to provide the CCG with a certified copy of your Lasting Power of Attorney for Property and Finance as your authority to act.

If your relative has since passed away, you may need to provide a certified copy of their Will and/or Grant of Probate. If you don’t have these documents in place, you should attend to this to avoid further delays.

Essential: Have You Got A Power Of Attorney?

Why you should consider making Lasting Power of Attorney or a Will

I have a will, so why do I need a Lasting Power of Attorney?

For more essential reading around the subject, look at these helpful blogs:

How do I claim back care fees that have been paid?

“Health Service is chaotic and dysfunctional, says NHS Chief”

14 Top Tips for 2019 to help you – Part 1

14 Top Tips for 2019 to help you – Continued Part 2

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

1 Comment

  1. Jenny 10 months ago

    Excellent and clear article, thank you.
    Could I also add from experience that claimants may often find the CCG or CSU thoroughly confused as to their own process.
    I gained CHC for my relative during lifetime, but had struggled to get the assessment for many years beforehand, and so there was a case for Restrospective eligibility. Despite repeated requests for procedure and guidance from my CCG and CSU I received nothing more than IRP procedure – which of course relates to appealed cases.
    I prepared and submitted a massive file of evidenced based information for retrospective consideration of eligibility – which I had to chase for an acknowledgement and push along for action in precisely the same way I’d experienced at all stages of the initial and repeated requests for an assessment. The CSU again assumed this was an appeal – although it was clear there had been no DST during the period requested for Retrospective consideration.
    They eventually decided to treat this aspect of the case, and the fact that they could not provide any published policy as a complaint!!
    Don’t get thrown off course. I really don’t know whether this conflation of Retrospective consideration for eligibility with Appeals is accidental or not, but I’ve now seen it on 3 occasions – so somebody thinks it’s worth continuing with muddled claimants and muddled staff.
    Get informed and stay persistent. There is no doubt that you will eventually know more about CHC than the staff administering it.

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