The cost of a care home can reach an eyewatering £7,000 a month, and with plans to limit the lifetime cost of care to £86,000 per person pushed back to October 2025, many may worry how they, or their loved ones will cope.

However, while many may not have heard of NHS Continuing Healthcare (NHS CHC), others may have been mistakenly rejected for the lifeline funding.

Lisa Morgan, head of the care home fee recovery team at Hugh James Solicitors says “information is power and sadly people are not aware of NHS CHC”.

She adds: “It is a misconception that people have to pay the full cost of care. It is important that people know NHS CHC may be an option.”

In the last 16 years, the team has recovered £200m in wrongly paid care home fees on behalf of 6,000 individuals and families. Separate figures obtained by the firm from the NHS reveal it has refunded £400m in total.

Here’s what you need to know about NHS CHC, who’s eligible, how to get it and how to appeal a rejection.

What is NHS Continuing Healthcare?

Introduced in 1996, it covers the full cost of care and residential accommodation for adults living in England and Wales who have particularly intense, complex and unpredictable needs as a result of disability, accident or illness.

It covers the entire package of care including personal care, food and accommodation if you live in a residential nursing home.

But it also covers costs for those who remain at home, including social and healthcare packages as well as essential equipment, Morgan explains.

However, it won’t cover food, rent, mortgage payments or utility bills, as well as services such as hairdressing or chiropody expenses.

Unlike local authority funding, it is not means-tested so the usual £23,250 asset limit (£50,000 in Wales) which dictates whether you pay for care isn’t a factor here.

Eligibility is based on whether you have a “primary health need” but the way this is assessed is very “subjective”, according to Morgan.

She says: “It is not based on a diagnosis alone. It is looking at both the type and amount of care someone needs as a result of their illness.”

Funding rejections

Due to the subjective assessment process, it “can lead to restrictive and unreasonable decisions”, with people wrongly denied the funding because their needs are “well-managed”, the person’s needs are treated as “insignificant” or due to a “lack of understanding of the process”.

Morgan says: “The Decision Support Tool is used to gather information about an individual’s physical and mental health needs. It considers 12 care domains, for example, cognition, behaviour, mobility, continence and determines the level of need.”

For example, dementia can affect people in different ways which determines the type and amount of care that individual needs.

In one case handled by Hugh James Solicitors, Mabel Etherington suffered severe dementia and recurrent mini strokes which meant she was unable to communicate effectively, had challenging behaviour and required a full package of care.

She was a resident of an Essex care home between 2007 and 2010 and paid fees which were finally recovered from the NHS and shared with charities supported by the late Mrs Etherington.

It came after Hugh James requested a retrospective review in 2012 and following numerous appeals, an independent review panel concluded she was eligible for NHS CHC, ordering the fees to be refunded.

Her family said: “The NHS system did not seem able to accommodate what we knew should have been her right.

“After receiving many rebuffs from the NHS over a period of more than a decade, an independent review vindicated our position and granted her the justice she should have received in her lifetime.”

‘Postcode lottery in funding’

In other cases, people are often not assessed for NHS CHC in the first place.

Indeed, the latest quarterly NHS England CHC statistics revealed 52,874 people are currently eligible in England. However, in 2014/15 this number was higher at 62,939.

Morgan says that with an ageing population, “this number should have increased or at the very least stayed the same”.

“The number of people referred for a full assessment that resulted in them being awarded the funding has fallen by a third in the last decade, from 34% in 2011/12 to 22% now.”

She says the statistics also “demonstrate a clear postcode lottery”.

“For example, the number of people receiving NHS CHC in NHS Bury is 230.14 per 50,000 population as opposed to 19.68 in NHS Berkshire West. It is also clear you are more likely to receive CHC in the North of England than you are in the South,” she explains.

How to apply for the NHS CHC and appeal a rejection

The first step is to contact your local Integrated Care Board (Health Board in Wales). Each area has a dedicated assessment team.

This can be done by the individual, or a family member or friend can request an assessment in the person’s best interest.

Once a decision has been made, the health authority will write to you, informing you of the decision and will set out the steps you can take if you are unhappy with the decision. Each health authority has an appeals process.

Morgan says: “The first step is to write to the health authority to set out why you are unhappy with the decision and it will invoke the local review process. This will involve a meeting with the health authority. If you remain unhappy with the decision, you can ask NHS England for an Independent Review Panel.”

There is no financial limit or time period for the application, and in England, you can request a retrospective review of an unassessed period of care back to April 2012, even if the person in care has since died, as in the case of Mrs Etherington by her family.

However, if a full assessment has been done, it’s important you act quickly as there are strict deadlines to appeal, Morgan warns.

She says: “Once a decision is made, the letter should inform you there is six months from the date of the letter to appeal the decision. It is important this deadline is met or the health authority will reject your appeal.”

People wishing to appeal can do so on their own, or instruct a solicitor to take on the case. Always check and question the fees when going down the professional route, for example whether it’s on a no win, no fee arrangement, hourly rate or whether it takes a fixed cut of the refunded money.

Is it right that the NHS should pay for those who can afford the costs?

Supporters and critics say the NHS is at ‘breaking-point’, with stretched services, staff shortages, long A&E and operating wait times and just recently, nurses voted to strike for the first time over pay dispute, while ambulance staff also walked out earlier this year.

NHS CHC isn’t based on wealth, which means it’s available for the richest in society as long as they meet the eligibility criteria.

Some would question whether it is right to put the NHS under further strain, particularly from those who can afford to pay care costs.

Morgan says: “The NHS is available for everyone from cradle to grave. Funding of care is not based on means, but what everyone is entitled to if they meet the criteria. NHS CHC is not available to everyone, but those who have the greatest level of care needs.”

She concludes that care homes can also be reluctant to accept NHS CHC as the NHS can “negotiate a lower rate than a private individual”.

This guide is aimed at residents in England and Wales. NHS CHC is available in Northern Ireland, but different guidance is in place. In Scotland, there is a different approach, where nursing and personal costs (but not accommodation costs) are funded at set levels.