Families in England recover over £400m in wrongly paid NHS nursing care fees

New figures show 1 in 5 people are successful in overturning NHS decisions at local level and points to a ‘postcode lottery’.

Families fighting for NHS care costs have recovered over £400 million in wrongly paid fees since 2013. However, this is the tip of the iceberg, with families forced to appeal restrictive NHS decisions.

Our analysis, using figures obtained via the Freedom of Information Act, shows one in five people are successful in overturning NHS decisions at local level and 30% at national level.

Lisa Morgan, Partner and Head of the Nursing Care team at Hugh James said:

“Despite many obstacles, the figures show that victory is possible for families who should never have been burdened with the care fees of their loved ones in the first place.

“Individuals who are denied funding to pay for the long-term care are often forced to take the costly and heart-breaking step of selling their homes to foot the bill – care bills can cost up to £6,000 a month. Paying for care is a huge burden for families at a very difficult time.”

Many families remain either unaware of their legal rights and the support available to them or their loved ones are wrongly assessed by the NHS as being not eligible for the funding.

Lisa Morgan goes on to say:

“The line between healthcare and social care is a very thin one, but the impact for the individual is the difference between free care and care which is means tested. NHS Continuing Healthcare can remove a heavy financial burden of healthcare costs at a very stressful time, when a loved one is very ill.”

As Lisa explains, the NHS will pay for care if an NHS assessor deems a person’s health needs and condition is serious enough. All costs will be covered, regardless of their wealth, under what is known as NHS Continuing Healthcare (CHC). However, with 35% of Britain’s 400,000 care home residents self-funding their care, thousands of families in England are likely to be wrongly paying out themselves.

Clinical Commissioning Groups (CCG’s) in England assess eligibility for care funding using a checklist developed by the Department of Health and Social Care (DHSC). Health boards in Wales make assessments based on a Welsh Government framework.

Eligibility rests on an assessment by a team of health professionals who will look at someone’s care needs to consider what help they need, how complex those needs are, how unpredictable they are and any risks to health if the right care is not provided at the right time.

Critics of the assessment say that it is far too easy for CCGs to deny care funding as the wording used is too subjective. This often leads to decisions that individuals are ‘not ill enough’ to receive funding.

The appeals process is an onerous, lengthy, and complex one, which can put a huge strain on individuals and their families. In some cases, delays mean money is refunded some-time after the individual concerned has died.

Whilst over £400m in past care has been refunded, families are still missing out with the number of people receiving full NHS funding declining.

At the end of 2015/16, 62,939 individuals received the funding. However, recent statistics confirm, sadly, there has been a slow decline with 53,745 eligible by the end of 2021/22.

54.56 people out of every 50,000 people in England are now eligible, a clear regional disparity remains from 232.53 people out of every 50,000 in NHS Bury CCG, but NHS Berkshire West CCG only funds 10.29 in every 50,000. The North-South divide is also clear with an average 70.53 people out of every 50,000 funded in the Northwest oppose to 41.42 people out of every 50,000 in the Southwest. As a result, many vulnerable people are still missing out.

The recent statistics also confirm that the percentage of people referred for a full assessment that resulted in the person being found eligible for standard CHC has dropped by a third in a decade, from 34% in 2011/12 to now 22%. There is also a clear North-South divide, with 28% receiving funding at first assessment in the North-East oppose to 17% in the Southeast.

Lisa Morgan concludes:

“It’s extremely disappointing to see people denied care funding – their legal right – and have to fight to receive the vital funding they deserve. It is hugely concerning the level of successful appeals after evoking a complex and lengthy appeal process. It shows that lessons have still not been learnt over the past decade of appeals.

“But it’s not just the thousands of families losing out. It is a cautionary tale for the NHS too. In cases where funding is found to be wrongly denied, it is forced to pay years of interest on back-dated payments, as well as reimbursing families for care at private rates instead of the cheaper contract rates that would have been available to the health service had it negotiated the care package to begin with. In many cases, if the CCG had made the right decision in the first place, they could have saved themselves thousands of pounds and saved families from years of heartache.”

Case study

At 81 years of age, Mrs Margaret Copus (known as Peggy) suffered a severe stroke and was unable to return home. She was admitted to Beaumont Park, but due to her increasing dementia was transferred to Wykeham House Memory Lane Unit in Horley, Surrey in July 2010. Her needs became increasingly very complex, and her next of kin requested transfer to Sussexdown Care Home in Storrington, West Sussex in January 2019, which was closer to family and facilitated regular visiting. She lived there until she died in March 2021.

Peggy suffered with vascular dementia and as a result was disorientated in time, place and person and exhibited challenging behaviour. She was unable to speak and, as a result of her stroke, suffered left side paralysis resulting in her not being able to walk and was bed bound. She was unable to be transferred to a chair, as she was unable to sit up unaided or unsupported, and needed constant repositioning.

As she was unable to engage with physiotherapy, she suffered multiple contractures to her left hand, and left leg, which remained bent with her foot parked under her left buttock. This was exacerbated by her chronic and painful osteoarthritis. She had a dislocated left shoulder which could not be reduced. She was nutritionally at risk, as she could neither eat nor drink unaided and without prompting to ensure hydration.

A current re-assessment was undertaken by the then Surrey Downs Clinical Commissioning Group in September 2017, which found Peggy not eligible for full NHS CHC funding. Hugh James appealed this decision and a local family review meeting took place with the CCG in June 2019, following which the negative decision was upheld.

Hugh James appealed to NHS England in December 2019 and an Independent Review Panel took place with NHS England in September 2020. In October 2020, following three years of appeals, it was confirmed the independent panel found the CCG’s decision was unsound and Peggy was eligible at the time of the assessment. As a result of the independent review decision, the CCG accepted that Peggy was eligible for full NHS funding and would refund her care fees from September 2017 and reimbursed £160,000 in wrongly paid care fees and interest.

Whilst the above appeal was ongoing, Mrs Copus moved care homes and counties so the responsible commissioner changed. A current assessment was undertaken by West Sussex CCG on 15 October 2019 and she was found eligible for CHC. The NHS took over funding from 2 December 2019 and met her ongoing care costs of £5250 per month from December 2019 until her death in March 2021.