Thousands of families with relatives who have dementia are being wrongly denied a form of NHS funding that can cover the full cost of care home fees, according to healthcare experts, after official records showed 83 per cent of applications assessed this summer were rejected.
Prime Minister Andy Burnham has promised to fix what he called the 'broken' care system in England, and last week described the process of families having to sell a home to pay for care as a "really awful process." But NHS Continuing Healthcare, known as CHC, already offers full funding for people with complex care needs, covering the entire cost of a care home or home carer visits, and it is not means tested.
Applicants face a postcode lottery, according to Rachel Hutchings of the healthcare thinktank the Nuffield Trust, with many missing out on tens of thousands of pounds because of incorrect assessments over dementia cases. Although the criteria are set out nationally, differing interpretations mean similar cases receive different funding depending on the regional health body.
Lorraine Campbell's £200,000 case
Lorraine Campbell, 56, a former prison officer from Manchester, was forced to sell the home she shared with her mother, Valerie, in 2019 to pay care home bills after Valerie was diagnosed with advanced dementia. The care home cost £1,500 a week, or £78,000 a year, and Valerie stayed there from November 1, 2019, until her death in January 2022, aged 81.
Despite Valerie's symptoms, which included behavioural distress and failing to eat or drink without prompting, nobody suggested that she or Lorraine apply for CHC funding. It was only after her death that solicitors Hugh James helped Lorraine apply for the benefit, which was finally awarded last week. Once proof of the care fees paid has been sent to the health board, Lorraine will be reimbursed for the fees plus RPI interest, an amount that could exceed £200,000.
"It's just a minefield and other people should be aware," Lorraine said. "If I'd known about CHC we wouldn't have had to sell the house where we had both been living."
Lorraine was advised to sell after appointing a different solicitor to advocate for her mother, and money from the house also went to pay that solicitor's costs. She lives with her son Ashley, 32, who works in retail.
"I was made redundant at the same time, and we had to move miles from everyone. It's been a living nightmare. Things just seemed to start spiralling and get out of control," she said.
Defeating Dementia campaign
The Mail on Sunday and Daily Mail have launched a campaign called Defeating Dementia, in association with the charity Alzheimer's Society, after figures showed dementia is the UK's biggest killer, accounting for one in nine deaths and 76,000 lives a year. Families of dementia patients are being urged to apply for CHC funding, even after a relative's death.
Why families miss out
Many families are not told about the funding, according to lawyer Lisa Morgan of Hugh James solicitors, who is based in Cardiff and helps families appeal unsuccessful CHC assessments. She said care homes often don't tell families when to apply because they receive less money for NHS-funded beds. People with dementia are particularly likely to be turned down because their symptoms are wrongly classified as a "social need" rather than a health need, Morgan said.
"The majority of our clients suffer with dementia, and the majority of people in care homes have dementia," Morgan said. "Continuing healthcare is not about the diagnosis of an illness, it is about the needs you have as a result of that illness. It is also not about the type of care home someone is in. There are some good care homes out there that will advise families, but some receive a contract rate from the NHS that is less than from private patients, and that can be a reason why they might not support families."
When to apply
Families do not need to wait for a care home to raise the subject, and can apply for CHC as soon as a relative needs care if they believe they fit the NHS description. A dementia diagnosis alone does not guarantee funding: the key requirement is that a patient's primary need for care is a health need, not a social or personal care need, though dementia is typically classed as a social care need. Health needs relate to treating an illness, while social needs relate to things such as help getting dressed, personal hygiene or preparing food.
Assessors examine the nature, intensity, complexity and unpredictability of a patient's needs before deciding, usually starting with an initial checklist assessment with a healthcare team. Those nearing the end of life can apply for a fast-track assessment instead.
Medical professionals fill in a 24-page checklist, scoring each domain A, B or C. For mobility, for example, a patient scores C if independently mobile, B if unable to consistently weight-bear or largely confined to one position but able to co-operate with carers, and A if completely unable to weight-bear, assist or co-operate. An application moves to a full assessment once two or more domains score A.
Applications go through the local Integrated Care Board, and the national charity Beacon offers independent advice on the process at beaconchc.co.uk or by calling 0345 548 0300. Beacon is funded by NHS England and offers up to 90 minutes of free advice, though it charges for other services.
Building a strong application
"I always advise families to think about what their version of a bad day is, when writing about their mum or dad. Because those days happen," Morgan said. Assessors weigh evidence from care homes, GPs, social workers and family, she added: "Jot things down, speak to the care home, ensure that the records are correct. These count as evidence for what the individual's care needs are."
Morgan recommends using the same vocabulary found in the Decision Support Tool that assessors use, available at beaconchc.co.uk/decision-support. "Use the wordings," she said. "We are looking to see whether someone's needs are unpredictable, whether they're challenging, whether they're very intense. Those are the type of words that we're all looking to use to determine when we're trying to demonstrate someone is eligible."
If you're turned down
Most CHC applications are initially rejected. A recent Nuffield Trust report found only 18.6 per cent of those applying outside the fast-track route receive the benefit straight away, down from 31 per cent in 2017.
Charities including Age Concern and the Alzheimer's Society warn that hundreds of thousands of people are likely being wrongly rejected. Lauren Pates of the Alzheimer's Society said families are often unaware the funding exists, and that those who do apply describe a long process, complicated criteria and a high threshold for an award.
Nuffield Trust figures also show regional variation, with people in some parts of the country up to six times as likely to receive the benefit as others. Those assessed as ineligible for CHC may still qualify for the smaller NHS-funded nursing care benefit; 80,896 people were eligible for it this year, according to official figures.
Families have six months from an initial rejection to lodge a first appeal with the local board, and a further six months to appeal to NHS England if that fails; in Wales the limit is 28 days. If both appeals fail, families can apply to the Parliamentary and Health Service Ombudsman for a review, or take the NHS to court.
There is no charge to appeal, but seeking expert help can improve the odds: about 20 per cent of appeals succeed without assistance, while some specialist lawyers report success rates of 70 per cent or higher. Some lawyers work on a "no win no fee" basis, taking a percentage of the award. A list of free advocacy services is available on the Parliamentary Ombudsman's website.
Common but wrong reasons for rejection
Morgan said families should challenge certain reasons for rejection. "Well-managed needs are still needs," she said, referring to cases where assessors cite good management of symptoms as grounds to refuse funding. The type of nursing home, whether specialist or standard, should not affect eligibility, she said, and funding withdrawn without any change in a patient's circumstances should be appealed. More than 900 fast-track patients had their funding withdrawn within six months last year.
Backdated claims and how much you could get
Families can apply for CHC funding retrospectively as far back as April 2012, even if the relative involved has since died, Morgan said. "A retrospective assessment is made on the basis of the records completed at the time," she said, adding that families can gather care home, GP, hospital and social services records to build a picture of the individual's needs. She warned, however, that such records are typically only kept for around eight years.
There is no upper limit on a CHC award, and some families have received hundreds of thousands of pounds in backdated funding. Those awarded NHS-funded nursing care instead receive a flat rate of £254.06 a week, with retrospective claims paid back to April 1, 2012. According to Age UK, the average cost of a nursing home is £1,267 a week, meaning CHC could be worth £330,000 over a five-year stay.
