My secret weapon for profitable care dwelling funding value £25k for my aged mom – and how one can too

When Andy Machin’s mother Lily developed Alzheimer’s in her 70s, he knew the next few years would be emotionally challenging.

What he didn’t expect was the battle he would face each year to secure funding towards the cost of Lily’s £3,000-a-month nursing home in Sheffield.

Andy, 63, from Wakefield, says that despite it being clear his mother needed professional care and should qualify for funding, his applications were repeatedly rejected by the NHS.

When he finally secured the funding and was awarded £25,000 in backdated payments, his relief was short-lived. 

In a cruel twist, the NHS tried to strip his mother’s funding once a year until her death in 2022, he says.

The NHS offers full funding for people requiring ‘continuing healthcare’ (CHC). This includes the cost of a care home or home carer visits. For many families, CHC is a lifeline.

But Money Mail can reveal that thousands of families are having funding for their elderly relatives wrongly removed during ‘reassessments’ and face costly appeals to have it reinstated.

Experts tell us that health boards are turning a simple review process into formal reassessment, during which time funding worth thousands is stripped from families.

Dan Harbour, who runs healthcare advocacy group Beacon, a social enterprise that is funded by NHS England to provide advice on CHC to families, has called out the shocking practice.

He says the review process, put in place in 2018, is supposed to check whether patients are receiving the right care for their needs, but is turning into a reassessment process to cut funding.

Mr Harbour says: ‘We are seeing a greater proportion of people dropping out of eligibility as a result of reassessments that should not be taking place.

‘It’s a nightmare process, and when people are affected by it, it just takes over their lives.’

In Andy’s case, these annual reviews triggered nail-biting months of back and forth.

To receive CHC funding, families must prove that their relative has a ‘primary health need’ for care, rather than needing social or personal support. But the criteria for deciding this are woolly and charities have identified a postcode lottery over who is awarded it.

Despite his mother’s worsening symptoms, Andy’s attempts to receive funding were rebuffed by the NHS and he struggled to get the local Clinical Commissioning Group to follow the correct process to proceed to formal appeal.

‘It got to a point where they wouldn’t even answer my letters and emails,’ he recalls.

As part of the appeals process, the NHS undertook further eligibility assessments, each one deeming ineligibility. But each time, Andy, a retired legal contractor, appealed.

He says: ‘It took three appeals, an FoI [Freedom of Information request] and a subject access request before I “won”, and it took a year to go through all that.’

Eventually he secured £25,000 in funding, which covered the cost of her care home fees, backdated to the date his mother went into care.

But a year later, her eligibility for funding was reviewed once more. By being present at each review and arguing his case, Andy secured an agreement that his mother’s eligibility was met and continued until her death.

He says: ‘It was incredibly stressful and a huge amount of work. Mum’s need for care was not diminishing – dementia is not a condition that improves.’

Lily eventually died at the age of 85 in 2022. By that time, she had been in a care home for around five years.

Andy says that although taking on the system and receiving CHC funding is daunting, you can do it alone if you take it step by step.

He’s written a guide, Practical Steps To Protect Your Assets From Care Fees: A Step-by-Step Personal Account of How I Was Able to Make Sure My Parents’ Property and Finances Were Protected Against Care Fees, under the pen name Kingsley Nicholls, which can be found on Amazon and Audible.

‘From my experience the system is set up for you to fail,’ he says. ‘Start by keeping a diary as early as you can. 

‘Document everything and make sure that you check relevant evidence against the criteria for receiving CHC. You are looking for consistent and relevant evidence.

‘Even if your family member is awarded CHC, don’t expect the process to be smooth from there,’ he says. ‘I had to keep fighting. Make sure you continue to document your visits to the care home, including encounters with staff and your loved one’s symptoms and behaviour.’

Rachel Hutchings, a fellow at the healthcare research charity Nuffield Trust, says the training and experience of CHC assessors who decide who gets the funding is ‘patchy’. 

As a result, many people have to use an appeal process to receive the funding at all, and statistics show that you’re more likely to be successful in this process if you pay to use an advocate or lawyer.

The average success rate for CHC appeals is around 17 per cent, but Beacon says about 70 per cent of clients using its paid-for advocacy service succeed in getting funding.

How you can fight back

If your loved one is awarded CHC it is crucial to remember the fight is not over and to understand the constant review process. 

Mr Harbour, at Beacon, says the policy is ‘crystal clear’ but often not followed by professional staff.

It is crucial to attend all care meetings and ensure you know your rights on whether a meeting is purely a ‘review’ meeting about care or whether your relative’s need for funding is also being reassessed.

A reassessment should only take place if there has been a ‘material change in need’, Mr Harbour says, and the team assessing your relative should be able to clarify what this is.

If they cannot, or they insist on reassessing funding in a review meeting, you should ask them to stop the meeting.

He says: ‘I would be refusing the assessment and going straight to formal complaint.’

Mr Harbour says that a long period without a reassessment being done is not enough to prompt an automatic reassessment either, unless there has been a ‘material change’ in need, so meetings that suggest this should be rebuffed as well.

Ms Hutchings, at Nuffield, says reviewers often use ‘unacceptable’ excuses for funding being removed.

One is the claim that the patient’s needs are being well managed. Ms Hutchings says: ‘Often it’s the fact that they’ve been able to get that funding that means those needs are being managed properly.’

Assessors sometimes claim the decision was made wrongly in the first place. It is worth appealing, since the fact that you have received funding before makes it more likely another assessor will agree with the initial award.

You have six months from the date of the original letter to appeal a reassessment decision, and there are three possible stages to the process.

The first is an appeal to the local Integrated Care Board. If that fails, appeal to an Independent Review Panel, and finally the Parliamentary and Health Services Ombudsman.

Use the Beacon free helpline on 0345 548 0300. This gives 90 minutes of free advice.

Many families give up, but the money can be backdated, so it is worth going through it to get a refund of what you have spent on care.

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