How YOU can get a beloved one’s care charges paid for by the NHS with out promoting their residence. Lorraine received £200,000 after ‘residing nightmare’. Now specialists reveal what to do – and actual type of phrases to make use of

Thousands of families are being wrongly and unfairly denied Government funding for their loved ones’ nursing care because of flaws in a system meant to help those with dementia.

The NHS offers full funding for people requiring ‘continuing healthcare’ with complex care needs. This includes the entire cost of a care home or home carer visits, which can run into thousands of pounds a week – and it is not means tested.

But applicants face a postcode lottery, with many missing out on tens of thousands of pounds due to incorrect assessments over dementia cases, warns Rachel Hutchings of healthcare thinktank the Nuffield Trust. 

Despite the criteria being set out nationally, differing interpretations have meant that similar cases receive different funding depending on the regional health body.

Official records reveal that 83 per cent of all cases assessed this summer were rejected.

Many families are being left to shoulder the eyewatering costs of nursing care, often by selling their loved one’s home, without any support because of a flawed, complex assessment process.

The Mail on Sunday and Daily Mail have launched a drive to defeat dementia after shocking statistics showed the disease is still the UK’s biggest killer, accounting for one in nine deaths and claiming 76,000 lives each year.

This newspaper’s Defeating Dementia campaign, in association with the charity Alzheimer’s Society, aims to raise awareness of the disease, increase early diagnosis, boost research and improve care.

Applicants for healthcare funding face a postcode lottery, with many missing out on tens of thousands of pounds due to incorrect assessments over dementia cases, warns Rachel Hutchings of healthcare thinktank the Nuffield Trust

Families of dementia patients are now being urged to put in applications for NHS Continuing Healthcare funding (also known as CHC) – and many are eligible to apply for the money even after their relative’s death.

The call comes after a recent report highlighted a terrifying problem with applications for the funding. Ms Hutchings says: ‘Access to this vital funding is unfair and inconsistent. CHC is a window into the stark divide in our system between care that is funded by the NHS and care that isn’t, and it exposes yet more flaws with our wider social care system.’

Wealth & Personal Finance has spoken to top lawyers who specialise in winning funding back for families who have been unfairly rejected. 

Here are their top tips for securing thousands of pounds in funding for your loved ones – along with the exact words you need to include on the documents.

Everyone experiences dementia differently. Use this checklist to help you make a note of your symptoms before you talk to your GP.

WHY THEY’RE MISSING OUT

Many families whose loved ones have dementia are often not told about the existence of the funding for care that would help, experts warn, while those who apply often find their applications are rejected.

Many people who are not eligible for the funding at the time that they enter a care home may become eligible later as the disease progresses. But care homes often don’t tell families when to apply because they receive less money for NHS-funded beds, says lawyer Lisa Morgan from Hugh James solicitors.

Based in Cardiff, Ms Morgan helps families to appeal their unsuccessful CHC assessments.

She says that families whose loved ones have dementia are particularly likely to have their applications for funding turned down because symptoms of the disease are wrongly classified as a ‘social need’ rather than a health need, which would make them eligible for CHC.

Ms Morgan says: ‘The majority of our clients suffer with dementia, and the majority of people in care homes have dementia.

‘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

Don’t wait to be told by a care home that your family member may be eligible for funding.

You can apply for CHC as soon as your relative requires care, if you believe they fit the description given by the NHS.

A dementia diagnosis alone is not enough to guarantee you will receive funding. The key requirement is that the patient’s primary need for care must be for health reasons, not for social or personal care reasons.

But this is where it gets tricky for dementia patients in particular, as it is typically classed as a social care need – not a healthcare need.

Health needs typically focus on treating an illness, while social needs relate, for example, to needing help to get dressed, maintain physical hygiene or prepare food.

In short, healthcare heals, while social care sustains.

Assessors will look at the nature and intensity of your relative’s needs, as well as the complexity and unpredictability, before making a decision.

In most cases, you’ll start with an initial checklist assessment with a healthcare team, where they run through a list of questions before referring you on for more checks.

Health needs typically focus on treating an illness, while social needs relate, for example, to needing help to get dressed, maintain physical hygiene or prepare food

However, if your family member is nearing the end of their life, you can apply for a fast track assessment to cut out a step.

Medical professionals fill in the 24-page checklist, answering questions on a scale of A, B or C.

For example, when scoring a patient’s mobility, they are required to score C if they are independently mobile, B if they are not able to consistently weight-bear or if they are in one position (bed or chair) for most of the time but are able to co-operate with carers, and A if they are completely unable to weight-bear, assist or co-operate.

The application will progress to a full assessment when two or more domains receive an A score.

You’ll need to apply through the local Integrated Care Board, but there’s a national organisation to help you with the process and to help you find the right forms.

Visit Beacon at beaconchc.co.uk for independent advice on how to get started with the application, or call 0345 548 0300. Beacon is funded by NHS England, so you won’t have to pay for up to 90 minutes of free advice, although it does charge for other services.

A STRONG APPLICATION

Ms Morgan says that using the right wording and collecting the right evidence is crucial in putting together a strong CHC application.

She says: ‘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.’

She adds that advisers will consider evidence from care homes, GPs, social workers and family when deciding whether to award the money.

‘Jot things down, speak to the care home, ensure that the records are correct,’ she advises. ‘These count as evidence for what the individual’s care needs are. It’s important that they give an accurate reflection of that person’s health needs.’

A dementia diagnosis alone is not enough to guarantee you will receive funding. The key requirement is that the patient’s primary need for care must be for health reasons, not for social or personal care reasons

She recommends using the same vocabulary that can be found in the Decision Support Tool, which the healthcare team will use to make its decision. You can find it at beaconchc.co.uk/decision-­support.

‘Use the wordings,’ she says. ‘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.’

Download the checklist sheet to see the wording used in A answers that suggest a patient needs funding. You can find it at gov.uk/government/publications/nhs-­continuing-healthcare-checklist.

IF YOU’RE TURNED DOWN

Most CHC applications are initially rejected. The recent Nuf­field report says only 18.6 per cent of those who apply for non-fast-track CHC receive the benefit straight away – a percentage that has fallen from 31 per cent in 2017.

Charities such as Age Concern and Alzheimer’s Society warn it is likely that hundreds of thousands of people are now being wrongly rejected for CHC.

Lauren Pates at Alzheimer’s Society says families often aren’t even aware that the funding is available. ‘If they are,’ she says, ‘they tell us the process is long, the criteria are complicated and the threshold for award is high.’

There are regional variations, too. According to Nuffield those in some parts of the country are six times as likely to get the benefit than others, suggesting many people are being assessed incorrectly.

In some cases, if you are assessed as ineligible, you may still be awarded Nursing Care, a smaller benefit for those who don’t qualify for the full package. A total of 80,896 people were eligible for NHS-funded nursing care this year, according to official figures.

Whether you receive this or not, you should still appeal for the full amount if you believe you have a case. But don’t miss the deadline. You have six months from the date of your initial assessment being turned down to appeal.

If your first stage appeal – which is to the local board – fails, you then have a further six months to apply to NHS England for another appeal. Those in Wales have a shorter, 28-day limit.

If both fail, you can apply to the Parliamentary And Health Service Ombudsman for a review, or take the NHS to court – although this is a costly process.

You don’t have to pay to appeal, but you may increase your chance of success by seeking help from an expert.

About 20 per cent of appeals are successful when done without help, while some specialist lawyers claim a success rate of 70 per cent or even higher.

Some lawyers offer a ‘no win no fee’ service, but take a percentage of your award.

There is also a list of free advocacy services on the Parliamentary Ombuds­man website at ombudsman.org.uk/making-complaint/getting-­advice-and-support.

COMMON – BUT WRONG – REASONS FOR REJECTION

When deciding to appeal, look out for these reasons why your claim was rejected.

Their needs are well managed

‘Well-managed needs are still needs,’ Ms Morgan says, and you can challenge this point.

The relative is in the wrong type of nursing home

It doesn’t matter if the home is a specialist home or standard home – funding is not about the setting.

Funding is removed without a change in circumstances

In some cases, funding is awarded and later removed. If there has been no improvement in circumstances for that patient, this should be appealed.

Last year, more than 900 fast-track patients had their funding withdrawn within six months.

HAVE I MISSED THE BOAT?

If you think your relative missed out on CHC in the past, it isn’t too late to apply for it – even if they have died.

Ms Morgan says you can apply for CHC backdated as far as April 2012.

‘A retrospective assessment is made on the basis of the records completed at the time,’ she says. ‘So you can get copies of care home records, GP records, hospital records and social services records, then build a picture of what the individual’s needs were.’

But, she warns: ‘They only retain records for a certain period,’ – typically eight years.

HOW MUCH SHOULD I GET?

If your relative is awarded CHC, there’s no upper limit on what you may receive.

In some cases, families have received hundreds of thousands of pounds in backdated funding.

If your relative is awarded NHS-funded nursing care instead, there’s a flat rate of £254.06 a week. Retrospective claims will be paid back to April 1, 2012.

According to Age UK, the average cost of a nursing home is £1,267 a week, so over a five-year stay, CHC could be worth £330,000.

• Worried you or a loved one may have dementia? Use the Alzheimer’s Society symptoms checklist at Alzheimers.org.uk/symptoms. For confidential advice, call its Dementia Support Line on 0333 150 3456.Alzheimers.org.uk/symptoms. For confidential advice, call its Dementia Support Line on 0333 150 3456.