Irene Langley, a professional ballroom dancer, was dancing well into old age until, at 90-years-old, she was diagnosed with dementia.
Since she had no children of her own, the responsibility of arranging her care fell to her nephew Frank, who was forced to sell his aunt’s home and use up “every penny” of her life savings in order to afford the eye-watering fees.
Tragically, it was only after Irene passed away in 2017 – at age 100 – that Frank discovered half of this money should never have been spent at all.
This is because Irene qualified for NHS Continuing Healthcare funding. Frank had applied for the funding – which few people know about – on his aunt’s behalf, however his application was wrongfully rejected.
Here, Telegraph Money tells the story of how Frank’s family appealed the decision and successfully clawed back over £100,000 in care fees – and how you can, too.
This piece will cover:
What is NHS Continuing Healthcare?
An estimated 137,480 people are paying for their own care in England, many of whom could be due a refund from the NHS.
It is widely understood that the Government will pay for your care if you have assets below a certain threshold – in England, that’s £23,250.
However, few people realise that you can get your care completely funded by the NHS, regardless of how wealthy you are.
This funding package is called NHS Continuing Healthcare (NHS CHC). To be eligible, you must have what is called a “primary health need”, which is assessed on the complexity, intensity and unpredictability of your needs.
Today, self-funders can expect to pay, on average, £1,120 a week for residential care and £1,385 for nursing care, according to the healthcare data provider Laing Buisson – so getting the funding could save a family hundreds of thousands of pounds.
Nearly 80pc of people assessed for NHS CHC are not deemed eligible for funding, according to the latest data from NHS England.
However, since 2012, over 2,000 families have successfully had their care fees refunded after appealing the decision, according to new data obtained by the law firm Hugh James in a Freedom of Information request.
The rules around NHS CHC are extremely complicated, and critics say many health professionals do not understand the system well enough to carry out an accurate CHC assessment.
Dan Harbour is managing director of Beacon, a charity set up to help families navigate the complex process of applying for NHS CHC funding.
He told The Telegraph: “CHC is a highly complex field, which is currently suffering from a squeeze on resources leading to limited capacity within assessment teams and a lower awareness of the principles of assessment.
“A lack of mandated national training for CHC staff, combined with the highly complex nature of the eligibility criteria (which also has a degree of subjectivity), inevitably results in significant variation across the country.”
For example, in the first quarter of 2023-24, 28pc of referrals in the North West were accepted, compared to 16pc in the South East.
‘How can someone this unwell be paying for care?’
Irene’s condition deteriorated so badly that she was incapacitated, doubly incontinent, had problems swallowing, and was “totally dependent on care”.
After an NHS CHC assessment, Frank was left feeling confident that his aunt would receive funding, as most of her needs had been deemed “moderate” or “severe” by her assessors.
But when the decision came through, many of her care needs had been downgraded, which meant Irene was not eligible.
“It had all changed,” said Frank. “I know the NHS has to penny-pinch, but I thought it was wrong.”
In 2014, a few years before Irene’s death, Frank saw an advert which said he could challenge the NHS’s decision and reclaim care fees. He decided to make an appeal, enlisting the help of the law firm Hugh James. “It was never to do with money – it was about what’s fair. We shouldn’t have been paying for it,” said Frank.
It took several years, but Frank eventually found himself in a Zoom call with independent healthcare professionals, going through doctors’ notes and carers’ reports, reviewing the decision made about his aunt’s eligibility.
“You could see from the assessors’ face that she shouldn’t have been downgraded,” he said.
The decision was overturned, and Frank won back over £100,000 in care fees.
Frank said he hopes other families can learn from his experience. “I’m sure there are a lot of people in the same boat who shouldn’t have paid,” he said.
How a care funding decision is made
If you think you might be eligible for NHS CHC funding, the first step is to ask a nurse, doctor, social worker or other healthcare professional to carry out an initial assessment. They will then go through a Checklist to assess your needs.
The Checklist looks at 12 “domains” of care: breathing, nutrition, continence, skin, mobility, communication, psychological and emotional needs, cognition, behaviour, drug therapies and medication, altered states of consciousness and other significant care needs.
These are assigned either an “A”, “B”, or “C” rating, with A indicating a high level of need.
Once the Checklist is completed, you should receive a decision letter as soon as possible, saying whether you are eligible for a full assessment.
If you are assessed with any of the following, then you should qualify for a full assessment:
Two or more areas are assigned an “A”
Five or more areas are assigned a “B”, or one “A” and four “Bs”
An “A” in any of the following areas: behaviour, breathing, drug therapies and medication, and altered states of consciousness
This assessment should be completed by a multidisciplinary team (MDT) with at least two professionals from different disciplines, who have been involved in the individual’s care needs.
The professionals will look at recent care records and conduct a face-to-face meeting with the person in need of care and/or a representative.
They will then fill in a form called the Decision Support Tool. This looks at the 12 domains, which will be assigned a level of need, ranging from “No Needs” to “High”, “Severe” or “Priority”.
If you want to understand what each level of need means, you can download the Decision Support Tool from the government website.
To give you an example, someone who is “able to breathe independently through a tracheotomy that they can manage themselves, or with the support of carers” should be classed as having a “High” need, whereas someone who is “unable to breathe independently” and “requires invasive mechanical ventilation” should be assigned a “Priority” rating.
The MDT will then make a recommendation to the NHS Integrated Care Board (ICB), who will make the final decision. The ICB will almost always uphold the recommendation of the MDT.
Within 28 days of the assessment, the NHS should decide if you are eligible. If you are, then the NHS should backdate payments to 29 days after the assessment.
You do not have only one chance to get NHS CHC funding. If your loved one is turned down and their condition then worsens, you can – and should – apply again.
How to pay for care – without selling your home
How to prepare for an NHS CHC assessment
No one can guarantee you will get NHS CHC funding. But there are ways to improve your chances:
Create a detailed medical record including notes from GPs, hospitals and care homes
Ask the care home for a one-week log relating to a particularly complex need, if required
Read the National Framework, which sets out the rules for NHS CHC
Read the Checklist carefully so that you have an understanding of whether the needs have been correctly assessed
Keep a record of your interactions with care professionals and assessors during the NHS CHC assessment process, and all the paperwork
How to appeal a decision
If you have been turned down for a full assessment
You cannot appeal a Checklist decision, but you can ask for it to be reconsidered.
You can ask for the Checklist to be reconsidered if:
You have been turned down for a full assessment despite meeting the criteria
You feel the Checklist is inaccurate. Write down specifically which area you think has been graded inaccurately and why
If the Checklist has been altered so you no longer qualify for a full assessment, you must receive a written explanation about how the decision was reached. If you disagree, you can ask the ICB to reconsider its decision
The full assessment was carried out by just one care professional, or by professionals who have not been directly involved in the individual’s care
If the decision does not change after the ICB has reconsidered it, then you can write a complaint:
Send a written complaint to the ICB complaint manager explaining why you disagree with the decision
If you still disagree, you can complain to the Parliamentary and Health Service Ombudsman
If you have a full assessment and are rejected for NHS CHC funding
Once you receive a decision letter, you have six months to request a review of the decision. Information on how to contact the ICB should be included in the letter. The ICB then has three months to review the decision.
You cannot appeal because you disagree with the criteria in the Decision Support Tool. However, if the correct procedures were not followed during the assessment, or if the decision failed to take into account all of the relevant information, then you should have grounds for appeal.
Here are some examples of evidence that you may have been rejected unfairly:
The Decision Support Tool does not reference all the evidence relating to your care needs
A health or social care professional recently involved in meeting your care needs has not had the chance to contribute to the assessment
Following the assessment, the levels of need assigned to the 12 care domains were changed
The full assessment was not completed within 29 days of the Checklist referral
Frank’s advice for someone appealing an NHS CHC decision is to get their facts straight before they make a complaint. He said: “Keep doctors’ notes and a record of the fees you paid.”
How does the appeal work?
Write to the department that undertook your assessment, explaining all the reasons why you disagree with their decision, and your evidence that it was wrong.
The first stage is the Local Dispute Resolution Process. According to data from NHS England, appeals at the local level are successful in 19pc of cases.
Otherwise, the case will progress to the Independent Review, where an independent panel of health professionals review the ICB’s decision. An appeal to the Independent Review Panel at the national level at NHS England is successful 29pc of the time. Data obtained by Hugh James in a Freedom of Information request shows that 7,554 IRPs have been conducted since 2012, of which 2,180 were successful.
If you are not eligible after an Independent Review Panel, you can then complain to the Parliamentary Health Service Ombudsman.
Should you pay someone to help you?
There are a number of law firms that will help you appeal your decision, including Hugh James. The law firm, which takes cases on a “no win, no fee” basis, has recovered over £200m for thousands of clients over the last 15 years, and offers a free initial assessment.
However, it is possible to appeal independently. Remember that hiring a law firm will cost money, and there is no guarantee you will be successful.
Beacon is an independent service commissioned by NHS England which provides free advice for up to 90 minutes – although if you require more specific help, there will be a fee.
If you are thinking of hiring a firm, these are the questions you should think of asking:
How long have they specialised in NHS CHC?
How many cases have they won?
What is their charging structure? If they offer “no win, no fee”, what percentage will they take in the event of a win?
How long do they estimate your case will take?