NHS Continuing Healthcare Funding – Don’t take ’No’ for an answer. If you believe you are right, fight on!

Here’s an example where determination in the face of adversity has paid dividends for a client who was wrongly being denied her proper entitlement to NHS Continuing Healthcare Funding (CHC).

CHC is a free package of care provided by the NHS for care fees, accommodation and social care costs. It is provided to adults 18 and over, regardless of the setting where the care takes place (eg your own home, a care home or other care facility, or hospice) and is paid regardless of wealth (ie it is not means-tested). Wealth is never a consideration.

Case Study:

Farley Dwek Solicitors represented the family of the late Mrs Thompson (not her real name – to preserve anonymity), and after a lengthy 7 year battle, have recently  received confirmation that the care fees paid to her care home will now be refunded with interest dating back to 2006.

The case study below illustrates just how important it is to be tenacious in pursuit of CHC funding and that, with such tenacity, success is possible; even in instances where the Clinical Commissioning Group (CCG) has attempted to rebuff an early request for review and deprive families of much needed CHC funding for their elderly relative in care.

Remember: The overriding principle is that CHC funding is ‘free at the point of need’, and so, every individual who is entitled to it, should be properly assessed and receive an appropriate care package to meet their health and social care needs. However, as you will read below, the process is not straightforward, and if you don’t understand its complexities, you could be losing out!

The retrospective claim process started in 2012 when Farley Dwek Solicitors were instructed by Mrs Thompson’s family to look into recovering historic care home fees (paid between 2004 to 2011) which they thought had been wrongly paid and which should, in fact, have been paid for in full by her local CCG.

Registration deadline for previous unassessed periods of claim (or ‘PUPoC’):

Under Department of Health deadlines, families could retrospectively claim for repayment of care fees paid in relation to any previously unassessed periods of care (PUPoC), going as far back as 1st April 2004 to 31st March 2012, provided that they had lodged a claim with the CCG before the deadline of 30th September 2012.

We first wrote to the CCG in August 2012 (ie before the deadline), notifying them of Mrs Thompson’s early intention to pursue a retrospective claim to recover care home fees she had already paid.

The CCG responded in September 2012, advising that they would investigate matters in 3 stages and would:

  • collate data and evidence;
  • look at whether there was eligibility during the enquiry period; and
  • conduct a reassessment, if necessary.

Note: It is the individual’s responsibility to prove their claim for CHC eligibility by providing detailed information about their needs and, if possible, supporting evidence in the form of care and medical records.

At the time, the CCG anticipated the matter would take 12 months to complete their investigation. A gross underestimation – as you will find out below!


The CCG sent out a standard Information Request Form, which was duly completed with the family’s input and returned to the CCG in July 2013.

In August 2013, the CCG advised that it was transferring the case to a centralised service run by a Commissioning Support Unit (CSU). The premise was that the process would be more streamlined and efficient, given the high volume of similar retrospective claims that it was investigating, following the imposed September 2012 deadline.

In November 2013, the CSU confirmed that they had undertaken their screening Checklist assessment which indicated that a full assessment should be undertaken. This Checklist was completed using the information on the application form and at this time none of Mrs Thompson’s care or medical records had been considered.

The CSU set about obtaining all relevant care and medical records. No timescales were given for completion of the review.

In December 2014, the CSU allocated the matter to a nurse assessor to review.

A Needs Portrayal Document (NPD) comprising of some 30 pages was served on Farley Dwek in February 2015, requiring any comments in reply to be served by mid-March 2015. The CCG had notice of this claim for over 30 months, but unreasonably, gave just 3 weeks to reply to their extensive NPD!

Farley Dwek drafted Written Submissions in reply with the family’s input, and submitted the document in time to meet the CSU’s arbitrary deadline.

The matter went to the CSU’s Multi-Disciplinary Panel (MDT) for consideration in April 2015, and eventually, we were notified of the outcome in November 2015. Until then, we were unaware that the Panel refused to assess Mrs Thompson’s eligibility for CHC retrospectively, because they were satisfied that:

1. Mrs Thompson’s eligibility for CHC funding had already been considered on several occasions during the requested review period (between 2008 and 2011); the outcome of those assessments was that she was not eligible for CHC funding.

2. The contemporaneous assessments and reviews conducted by the CCG during Mrs Thompson’s lifetime were robust and correct. She was not eligible for CHC funding at any time.

3. The September 2012 PUPoC deadline was intended to offer individuals in receipt of care between April 2004 and March 2012 who had never been considered for CHC funding, and may consequently have been funding their own care incorrectly, the opportunity for retrospective assessment.

4. As Mrs Thompson had been assessed for part of the requested review period – i.e. from 2008 onwards (albeit not the full period going back to 2004) – that was sufficient to conclude that her eligibility for CHC had been fairly considered at the time. As the PUPoC deadline only applied to unassessed periods of care, it was beyond the CSU’s remit to consider the case further.

5. In the circumstances, Mrs Thompson wasn’t entitled to a retrospective review.

6. The claim was rightly dismissed.

7. Furthermore, the family was now out of time to appeal [6 months from the date of the outcome letter] the outcome of any assessment conducted since 2008.

Outrageous! Effectively, the CSU had done all this work, led our clients down a merry path for 3 years, convened an MDT, only to conclude that because Mrs Thompson’s needs had previously been partially assessed during her lifetime, they could reject the matter out-of-hand – irrespective of whether those earlier assessments were procedurally and clinically sound. And, in any event, the CSU claimed that the family were out of time for appealing any past periods of care that had been assessed (where Mrs Thompson was found ineligible for CHC funding).

Although the PUPoC process is only intended to apply to previously unassessed periods of care registered before the deadline, there are circumstances where a patient or their family can retrospectively challenge the outcome of assessments already undertaken [i.e. outside the usual strict 6-month appeal deadline], where:

1. The CCG is unable to provide evidence of the previous assessment;

2. The patient/family was not made aware of assessment and/or right to appeal;

3. The previous assessments were procedurally flawed, inaccurate or clinically* unsound.

The family asserted that they were unaware of any CHC assessment taking place between 2008 and 2011, and had not been invited to contribute at any stage. Furthermore, neither Mrs Thompson nor her family had been advised of the outcome of those assessments, their right to appeal the decision and the process and timescale for doing so. The family rightly pointed out that a considerable period of care, from 2004 to 2008, had not been assessed at any time.

Therefore, we felt quite within our rights, and in time, to challenge the CSU’s refusal to review, on the grounds that:

1) the period 2004 to 2008 had never been considered, and so, was a previously unassessed period of care (PUPoC); and

2) decisions made between 2008 and 2011 were procedurally unsound.


We complained to the CSU in December 2015 about its refusal to review, arguing that any previous decision to reject CHC funding was flawed, inaccurate and clinically unsound, especially given Mrs Thompson’s abundant healthcare needs as evidenced in her care/medical records. Moreover, the fact that Mrs Thompson and her family had been denied a rightful appeal, rendered any previous decisions invalid. Finally, a significant portion of the requested review period had never been considered and was, therefore, within the remit of the PUPoC deadline. Copy of any assessments previously undertaken by the CCG were requested.

The CSU’s position remained firm. Mrs Thompson’s eligibility for CHC funding had been considered during her lifetime and, regardless of the merits of those decisions (incorrect or otherwise), it was not prepared to reopen the matter. The CSU could only consider those patients who had never been assessed for CHC funding, in-line with the PUPoC guidance. The CSU was unable to provide copy of any previous assessment undertaken by the CCG. As far as they were concerned, the matter was closed.

A formal complaint was lodged with the CCG in March 2017, requesting copy of any assessments previously undertaken. The only reference to any assessment for CHC funding was contained in Mrs Thompson’s GP records. We did not accept this as cogent evidence of a formal, robust assessment! Similarly, we did not accept that the CCG could hide behind the argument that Mrs Thompson’s eligibility for CHC funding had already been (partially) assessed and, as such, wasn’t within the remit of the PUPoC deadline. The CCG referred the matter to the CSU, which seemed equally disinterested, having already made their position clear.

We chased the CCG to provide evidence of any assessments for CHC carried out in Mrs Thompson’s lifetime, as the family had no knowledge of any such consideration, and had not been invited to attend any assessment (contrary to the NHS National Framework). Bizarrely, the CCG could only supply circumstantial proof gleaned from entries in Mrs Thompson’s records, and seemed unable to provide a copy of any actual assessment. Had Mrs Thompson, in fact, ever been assessed by the CCG for CHC funding in her lifetime? Certainly, she had never received any outcome letters rejecting funding or advising of her rights to appeal and the timescales for doing so. If the CCG was unable to provide such documentation, this was a previously unassessed period of care (PUPoC), and therefore should be considered in full.

Finally, in September 2017, the CCG eventually disclosed a number of purported CHC assessments undertaken between 2008 and 2011. The CCG was unable to supply evidence of any communication with Mrs Thompson or her family advising of the outcome of these assessments and their right to appeal. Upon review of these documents, a further complaint was lodged with the CCG, citing the lack of family involvement, the denial of rightful appeal and the inadequacy of the extant assessments in evidencing proper consideration for CHC. The CCG still did not uphold the complaint and confirmed that the matter remained closed.

Parliamentary and Health Service Ombudsman (PHSO):

Formal complaint was then lodged with the PHSO in early 2018. Following a lengthy investigation, the PHSO found firmly in Farley Dwek’s favour.

The CCG was advised that the period 2004 to 2008 had never been assessed and should, therefore, be considered under the PUPoC deadline. Furthermore, the “previous assessments”, relied upon by the CCG as reason not to review, were both procedurally and clinically unsound. The family had been denied their right to participate and denied their right to appeal. The assessments themselves were inadequate and there was no evidence that Mrs Thompson had been robustly assessed for CHC funding during her lifetime. The PHSO instructed the CCG to consider the full period of care retrospectively.

In the light of the PHSO’s findings, the CCG softened its position and, in October 2019, agreed to conduct a retrospective review of the full period of care after all! At last, some common sense after more than 7 years of dogged and unrelenting perseverance!


The outcome of the retrospective assessment was favourable to Mrs Thompson. Having considered her care and medical records, the CCG agreed that Mrs Thompson was indeed eligible for CHC funding from 2006 and that her care fees should have been paid by the CCG from this date – had they carried out an accurate assessment in the first place! Any fees paid by Mrs Thompson would be refunded to her Estate in full, in addition to compound interest at the rate of RPI. Had the CCG and CSU dealt with matters more transparently and fairly, they would have saved a lot of time, resources and money, including substantial interest payments.

Mrs Thompson’s family was certainly put through the mill and had to endure more than 7 years of anxiety and frustration whilst battling against the CCG to uphold their rights. Yet, at every stage, the CCG, and the appointed CSU, seemingly did whatever they could within their power to try and put obstacles in the way to defend their position. They had misapplied and misunderstood the guidance, to Mrs Thompson’s detriment.

This was a complex, drawn-out battle. Without legal representation to fight such injustice, we wonder how many more families in similar circumstances have also missed out on their entitlement to CHC funding and had the wool pulled over their eyes?

What you can learn from this experience:

1. You really have to know your rights and the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (recently revised 2018).

2. Never take what the CCG tells you at face value. This CCG and CSU clearly did not understand the national guidance, or if they did, chose to mis-apply it in an attempt to deny Mrs Thompson her CHC package of funded care. Many would have accepted the CCG’s decision implicitly and without question; others may have given up, or been left floundering, not knowing their rights or how to argue their case in a coherent and robust manner.

3. Do not give up! This case has taken many years of perseverance and tenacious chasing, despite this CCG and CSU’s sheer ineptitude, incompetence and inordinate prevarication – seeking to frustrate the family’s rights at every corner, and putting up hurdles to obstruct their access to justice.

4. Don’t be afraid to challenge the CCG. As illustrated in this example, they do get things wrong – whether through misunderstanding, misapplication or unwritten financial gate-keeping policies!

5. Stand your ground. Complain and challenge them whenever you believe their decisions are incorrect or flawed.

6. Cases dealt with under PUPoCs guidance are unusual. Generally speaking, there is a strict 6 month deadline to appeal any MDT decisions – so beware to ensure you comply, otherwise you will lose your right to appeal!

7. Where the CCG provides a copy of a previous assessment (but it is not sufficiently robust), we would always recommend that you challenge it via a formal complaint to the CCG and PHSO, if necessary.

8. A clear procedural failing, for example: no consideration of eligibility for CHC prior to an award of Funded Nursing Care, or where family are excluded from the process, or are not informed of their right to appeal – should always result in a complaint to the CCG (and an appeal for reconsideration retrospectively if the MDT has made a decision).

9. If there are no procedural flaws, but the assessment is felt to be clinically unsound i.e. there is disagreement over the levels of need and/or application of the eligibility criteria – then this is less clear cut, but we would still advise lodging a formal complaint setting out your disagreement.

10. Prepare your case thoroughly.

11. If you find arguing your relative’s care needs with the CCG too emotive, daunting or frustrating, then seek early legal assistance. Farley Dwek Solicitors offer a full Retrospective Review Service.

Visit our website for more information and do call us on 0161 272 5222 or 0800 011 4136 for a free initial consultation, or email your enquiry to us at: enquiries@farleydwek.com