THOUSANDS of vulnerable and elderly people who should have their care costs covered by the NHS are completely unaware funding is available.

A national poll commissioned by Farley Dwek Solicitors found that 87 per cent of people did not know about NHS continuing healthcare – funding that exists to cover the care costs of those with complex medical needs.

The poll measured awareness of continuing healthcare funding among 45-60 year olds across Britain – the demographic most likely to be taking care funding decisions for their parents.

Close to a third of respondents (29 per cent) said someone close to them suffering from complex health needs had to personally finance their care.

For those who had to personally finance care, 71 per cent exhausted their savings while 65 per cent had to forego their pension income. 14 per cent had to sell their house to cover care costs.

Over a third (35 per cent) of those forced to finance their care spent more than £10,000 doing so. Close to 10 per cent spent more than £50,000 on care that could have been provided for free by the NHS.

35 per cent of people with complex care needs currently financing care are paying more than £500 a week, according to the survey.

The findings raise serious questions about why so little is known about the crucial funding, which could save vulnerable people across the UK hundreds of thousands of pounds.

In light of the findings, Farley Dwek Solicitors is launching a national ‘Two Ticks’ campaign to raise awareness about the availability of funding. It aims to help people better understand if their loved ones are eligible.

Andrew Farley, a specialist in continuing healthcare funding at Farley Dwek Solicitors, said:

“These findings are shocking but sadly they reflect the conversations we have on a daily basis. They have laid bare the extent to which people simply don’t know about NHS continuing healthcare – a critical source of funding that is supposed to support the care of society’s most vulnerable people. These are people who find themselves stricken with serious and complex medical conditions through no fault of their own – and they are entitled to this funding.

“It’s a travesty that because so few people know about the funding, there are many, many people who will have unnecessarily spent the entirety of their savings, or even had to sell their house, to cover costs they are wrongly being asked to pay for. It’s a national disgrace.

“To make sure people can access the funding they are entitled to, there needs to be a concerted nationwide effort to raise awareness around continuing healthcare. Certainly, the NHS could be doing more to promote the availability of the funding. It’s a shameful dereliction of the NHS’ founding principles that its modus operandi appears to have been to keep knowledge of the funding as limited as possible.”

“People need to be aware that it’s available and they also need to understand whether their loved ones qualify for the funding. To that end, we’ve created a publicly available ‘Two Ticks’ tool to quickly help people understand whether or not their loved ones could be eligible.

“We’re hoping it will help bring much greater clarity to people’s understanding of the funding and that those who should be receiving the funding can make sure they are taking the steps they need to secure it.”

The survey also raised questions about the quality of primary care assessments – the means by which NHS practitioners decide whether continuing healthcare funding should be granted.

More than a quarter of people (26 per cent) who knew someone closely who had applied for funding said that person was dissatisfied with the way the assessment was carried out.

Similarly, 28 per cent said the person they were close to was dissatisfied with the outcome of the assessment. Only 54 per cent said they were satisfied.

Jim Butler, 61 from Rushden, is awaiting more than £100,000 in compensation for his mother Maria after a two-year battle saw her wrongly denied funding three times before it was finally granted at a tribunal hearing.

He said: “What we had to go through to secure support for my mum was disgusting. The first time we had an assessment, the NHS’s multidisciplinary team refused to grant funding even though my mum’s healthcare needs were found to be severe in two of its assessment criteria.

“We went for two more assessments. In the second assessment they tried to say my mum only qualified for a small fixed contribution. We knew that wasn’t right and our lawyers at Farley Dwek agreed so we went for a third.

“That final assessment was harrowing. My mum became very distressed, screaming and beating the walls and doors of the room in which the assessment was taking place. It was clear to anyone that she was really unwell and needed help. They still refused to support her with care funding.

“At that stage we went to a tribunal – it was the only option left for us. They were told not only that funding would be granted, but that funding should have been granted from the very first assessment. It was sickening.

“I honestly believe that the multidisciplinary teams that conduct the assessments are there to fob you off – there is no way my mum should have been denied help.”

These latest findings add to growing concerns that people across the country face a number of obstacles when it comes to accessing the funding they are entitled too.

Andrew Farley at Farley Dwek Solicitors added: “Even for people who are aware that continuing healthcare funding exists, there is a great deal of confusion about when it should be granted. I have worked on many cases with people who feel that the lack of clarity around this issue has been exploited and used to make it as difficult as possible for those most in need to access funding.

“Funding should be granted when a person’s healthcare needs are deemed greater than their care needs. If someone is unwell to the extent that they require round-the-clock, one-to-one care then it is highly likely that funding should be granted. Anyone with a loved one in that situation should certainly consider applying for the funding.”

Anyone looking for further information about NHS continuing healthcare funding, or to access the Two Ticks tool to see if their loved one could be eligible for funding should can visit https://www.farleydwek.com/two-ticks/.

The full documents can be downloaded here:

• Summary Document *
• Final Tables *

* Documents commissioned by Farley Dwek Solicitors Ltd and remain our property. No use or copying without our express permission.

More than one million people in the UK have sold their homes to pay for care for themselves or loved ones, according to a report by insurer NFU Mutual.

But for tens of thousands of people, this struggle to pay healthcare bills could have been avoided.

The NHS has a little-known funding programme called NHS Continuing Healthcare which means those people with a complex ongoing illness can apply for an assessment.

For those found to be eligible, all care needs – including nursing home costs of up to £40,000 a year – are met by the NHS.

There is no ceiling on the amount that can be paid out, it is not means-tested and the funds are potentially available to anyone over the age of 18. Care can also be provided in a private home or a nursing home.

Low uptake

At present, 59,000 people are receiving this funding from the NHS but estimates from lawyers and charities suggest that 150,000 people are eligible.

The shortfall can be explained, according to solicitors, by a lack of awareness that the programme exists.

“I think the NHS is to blame for not making it clear what options are available,” says Andrew Farley, a solicitor at law firm Farley Dwek.

“Everyone who is discharged from hospital into a long-term care setting should be assessed for this funding but often people aren’t told about it, or if they are, they are told ‘Oh, your relative won’t be eligible for this’. This is wrong.”

Delays in the process are also preventing people from benefitting from this funding pot, it is claimed.

In theory, a patient should know whether they are eligible within 44 days of first applying for an assessment. However, some wait for several months, or even more than a year, for a final decision. Families face care bills while they wait for the result.

Assessment process explained:

To be eligible for NHS Continuing Healthcare funding, the patient must be assessed as having a “primary health need” and a “complex medical condition with substantial and ongoing care needs”.

In theory, assessments for this funding pot should be given to people when they are discharged from hospital if they face continuing health related care expenses. An assessment can be requested from the programme co-ordinator at a local Primary Care Trust. A GP should be able to provide contact details.

The initial assessment consists of a checklist, which can be completed by a nurse or doctor.

Depending on the outcome of the checklist, the patient will either be referred for a full assessment or told they are not eligible.

The full assessment is carried out by a team of professionals. During the process 11 key areas are considered – including continence, cognition and mobility. Each area is graded from “priority” and “severe” through to “low”. A points system determines the final decision on whether the patient is eligible for funding.

The NHS website clearly states that not everyone with a long-term illness will be eligible.

Eligibility

There are also claims that the qualifying criteria – as set out by the NHS National Framework – are being interpreted incorrectly.

The dividing line between who qualifies and who does not is a key issue for many people.

Chris Andrews’s father, Bill, was assessed and denied funding just a few months before he died.

“The programme is obviously not going to pay out to everyone involved because the government couldn’t afford to do that,” says Mr Andrews.

“I think there are cases where people are in extremely poor health and they need to be funded.

“My late father was blind, immobilised, and doubly incontinent. Still, when he had a continuing care assessment he was borderline and didn’t qualify. How ill do you have to be to qualify?

“The assessment criteria are so stringent right now. It is not fair. For my parents, who both worked hard and paid their taxes, they get to the end of their life and hope to reap what they have sown and instead they have to give it all back to pay for care.”

Mr Andrews is now one of hundreds of people trying retrospectively to claim back care costs from the NHS. He says he has spent £243,000 on care for his parents so far. His mother is still alive and trying to cope with the final stages of Alzheimer’s. Her last assessment concluded that she was still not eligible for funding.

The NHS says that 131,000 assessments were carried out last year. An NHS awareness programme is also being launched in January to help people know what funding options are available to them.
‘Postcode lottery’

The charity Age UK says it is crucial for applicants to be prepared before an assessment takes place, to improve chance of qualifying for funding.

“When you go through the eligibility process they will be asking for evidence as to what the level of need is – how intense it is, how will it change, how uneven they are such as deteriorating one day and being better the next,” says Tom Gentry, from Age UK.

“Keep a record of those kinds of accounts and so you can give it to the team making the assessment.”

A report by consumer group Which? says one of the reasons why people fail to qualify is because different clinical commissioning groups within the NHS are drawing different conclusions on who is eligible.

In Salford, 144.6 people per 50,000 receive care funding versus just 11.4 in South Reading. Health standards and funding distribution may vary in each region but many believe these numbers suggest there are other stark variations in how people are assessed.

A spokesman for the NHS says they are addressing these issues.

“NHS England is currently undertaking work to establish what progress has been made by local NHS commissioners with regards to requests for an assessment of eligibility for NHS Continuing Healthcare, including for a previously unassessed period of care,” he says.

FAMILIES are missing out on thousands of pounds for elderly relatives because complex NHS funding decisions on care homes are being made behind their back, say legal experts.

The average cost of a UK nursing home is £738 per week – that’s almost £40,000 a year.

But many families struggle needlessly to come up with the cash in a situation where they may be eligible for full funding from the NHS although few people know about it. This is known as NHS Continuing Healthcare and is not means tested. It is based on assessments of healthcare needs, such as mobility and severity of conditions.

Just 58,000 people currently receive continuing care funding but it is believed more than 150,000 are actually entitled to it.

Andrew Farley of Farley Dwek Solicitors, said many elderly relatives are being assessed for the funding without their families knowledge:

“The NHS is undertaking Continuing Care Funding assessments of patients in hospital without telling their families that an assessment is taking place. This gives them no opportunity to hear what they have to say. This is against the principles of the NHS Framework and we are urging families to consider an appeal any decisions that have been made in their absence.

“This means that in the worst case scenarios some families may have wrongly sold off their parents’ home to pay for care home fees when they were entitled to free funding all along.”

More than one million people have been forced to sell their homes to pay care home fees over the past five years. Tens of thousands more are unable to pass their homes on to their children as local authorities take charges out against properties that have to be paid when parents die.

Andrew Farley of specialist care funding solicitors Farley Dwek, which helps families secure NHS Continuing Healthcare Funding said:

“It is a disgrace. The problem is that the current funding system is unfair. It hits those who have worked their whole lives, spent their money wisely and put a bit aside for a rainy day. Families are spending millions of pounds on care home fees unnecessarily.

“They often struggle to secure the funding because they are given short notice by their local NHS to attend a complex funding assessment meeting, in many cases they are improperly assessed or even worse not advised that funding is available at all because they assessments are being carried out behind their backs.”

“Crucial ¬decisions are made that could spell the difference between paying nothing and paying £700 a week and families should not be ignored when these decisions are being made” added Mr Farley.

For Gail Rolfe, dealing with the complex system that deals with the financing of care-home places is almost as harrowing as her father’s dementia

My father has dementia. Nearly eight years after his diagnosis, I have accepted that there will be no miracle wonder drug, no last-minute cure that will free him from this devastatingly cruel, relentless illness.

He is an 83-year-old baby living in a specialist dementia nursing care home. He struggles to communicate, is doubly incontinent and has to be helped to eat and drink. In the past two weeks he has lost the ability to walk or stand. He no longer recognises his wife of 58 years, his 3 children or 5 grandchildren, is unaware of the time or the seasons and can be volatile and aggressive. On rare occasions he can be logical, lucid and very loving. But as I write he is reaching the point where he is losing the ability to swallow and therefore to eat.

Having been forced to take the agonising decision to admit him to the care home last year, naively we believed that our only anguish over the coming years would be witnessing his gradual decline. The home he is in is staffed by wonderfully caring people; the nursing team is diligent; the food is freshly cooked and delicious; his clothes are washed and ironed (something that does not happen in all homes). They do the best they can in difficult circumstances, especially on such low pay.

So, this is not a shocking tale of care-home abuse or neglect. My father seems to be content and settled, and therefore we should be, too. But sadly, that is not true. Instead, the past year has been fraught with despair, as we have battled the demons of care-home funding.

It is painful enough to endure the emotional turmoil and daily rollercoaster of losing a family member to dementia without having to fight a battle with social services and the NHS in a system that is bewildering, and often appears to be inhuman and unsympathetic.

Today, if you have a relative suffering from dementia or Alzheimer’s, you need to be very poor or very wealthy. For the unfortunate squeezed middle, the system is hopeless.

Those who have worked hard all their lives and paid taxes have too much money saved for their care to be funded by their local council or primary care trust, yet not enough in the majority of cases to self-fund when care home fees are about £800 to £1,500 a week. The maths is terrifying: the average yearly bill will be in excess of £50,000. Times that by four, five, six years and the figures are stupefying. How many ordinary families do you know who have that kind of money in a savings account?

This is the scale of the problem: there are approximately 820,000 people in the UK living with some form of dementia, predicted to rise to more than one million people with dementia by 2021; only 44 per cent of people with dementia are diagnosed, which means the true figures are far greater. Some 60,000 deaths are directly attributable to dementia each year and one third of those diagnosed with dementia live in a care home. Staggeringly, the cost of dementia to the UK exceeds £23 billion, whereas the comparative costs for cancer are around £15.8 billion.

While a cancer diagnosis now comes with the possibility of hope, with dementia there is no hope. Cast your mind back to my father’s current state, where he is as helpless as a six-month-old baby, reliant on his carers to provide his every need. And remember his condition is never going to improve. If he had been diagnosed with cancer, or any physical illness that would undeniably prove terminal, would we be facing the same scandalous financial battle to have his care met by the state? There seems to be a deplorable distinction between mental and physical illnesses.

I have read and re-read page after page of advice on the Age UK and Alzheimer’s Society websites until my brain is addled; waded through the “Charges for Residential Accommodation Guide”; read almost every pamphlet provided by the NHS; had several telephone calls and a lengthy meeting with a financial adviser who specialises in care-home funding, spoken to friends in similar situations and I am still baffled. There are just too many “ifs, buts, maybes and possible permutations”, and every single case is different.

We had made the situation even more complicated, because we had admitted my father in an emergency situation to a care home that was outside the jurisdiction of his local borough (he was staying with me in London at the time), and we were funding him privately. Unwittingly, we had bypassed the complex system that rules the entry into care homes and have ever since had to wiggle our way back in and begin the tortuous dealings with his local social services.

This is like playing a game in the dark, where you are unaware of the rules, and the criteria are open to wide interpretation between different health board areas. I cannot remember having to deal with anything that has made me feel so powerless.

As far as I can understand, this is what should happen: the person with dementia is assessed by the community support unit of mental health nurses; if you fulfil the criteria for entry into a care home, three homes will be selected for your relatives to visit, and then they select the one that is preferred.

In the period of time when we were still operating on the fringes of the system and paying privately, my father was rejected as being too aggressive and too difficult by the care home that is closest to my parents’ marital home. Because this was logically the best place for him, their refusal sent us into a tailspin and a frantic viewing marathon of other homes within driving distance for my mother.

The luxury care homes that anyone would be content to live in (while not that much more expensive) don’t accept advanced nursing dementia cases, so they were crossed off the list. We trailed despondently around a further three homes that would accept him, yet I wouldn’t consider any of them even for my worst enemy. The fourth home we looked at turned out to be a gem and that is where my father is still today. We are still paying privately, which brings us to the baffling issue of care-home funding.

The first test you have to pass or fail, according to how you look at it, is the “means test”. The upper savings threshold in England (above which the person has to pay all their costs) is £23,250, while the lower savings threshold in England (below which a person’s savings are no longer taken into account, although all other income including benefits and pensions is still counted) is £14,250.

In a nutshell you have to spend all that hard-earned, taxed income until it is below the magic figure of £23,500. We managed that in less than six months.

The second test, and the one that has caused us such distress, is the lynchpin that determines whether or not a request for fully funded NHS Continuing Healthcare is granted or not. A nursing care assessor and a community mental health nurse carry out lengthy continuing care assessments, together with the family and nursing staff from the home, approximately every three months.

This 54-page document assesses every aspect of the person requiring funding, from cognition, behaviour, psychological and emotional needs, communication and mobility to nutrition, continence, skin, breathing, drug therapies and medication symptom control, altered states of consciousness and other significant needs.

My mother and I have now sat through three exhausting assessment meetings and appeared before the quite formidable Essex Multi-disciplinary Team and Continuing Healthcare Panel (six of them on one side of the table and me and my 81-year-old mother on the other side), and still we are no wiser.

At the end of every meeting we leave more confused than ever. When every single person employed within this field shamefacedly describes the current system as “a minefield” or “a nightmare”, and concedes that even they find the system complex and bewildering, how do we, the uninitiated, begin to understand or navigate the system?

My father both passed and failed the first test in September. His savings were below the higher-level threshold, but above the lower threshold. So we fell in a no man’s land. In a bewildering phone call in the same week, I was told that my father’s income was too high. “What income?” I felt like screaming. He’s been in a care home for the past five months and has had dementia for almost eight years. “Oh, sorry, I mean his pension is too high, his state pension,” came the answer. “Plus the other five private pensions he has,” she concluded.

He also failed the second test. According to the letter I received in December, “The Panel agreed with the MDT (Multi-disciplinary Team) that Mr Rolfe does not have a Primary Health Need but would be eligible for FNC (Funded Nursing Care).

“Having considered the nature, complexity, intensity and predictability of the totality of Mr Rolfe’s healthcare (taking into account any interaction between those needs and the evidence from risk assessments), as at December 12, 2013, the Panel decided that Mr Rolfe’s healthcare needs were of a nature which a local authority could be expected to provide, that his needs were predominantly for personal and social care and that Mr Rolfe did not have a primary health need. Consequently the panel decided that Mr Rolfe was not, as at date of assessment, November 6, eligible for 100 per cent funded NHS Continuing Healthcare.”

Which places us in an impossible situation. My father, if he knew what was going on, would have lost every last vestige of dignity and pride. Consigning him to spend his last years in a care home was difficult; having to almost beg for him to keep his place there is beyond harrowing.

In the first years after diagnosis, my father remained essentially undiminished from the man he had been all his life. He knew he was married, had three children and five grandchildren and remembered all our names. He knew where he lived, the name of the prime minister and could converse coherently on any subject.

But the signs were there. My father would ask for “the thing you read in the morning”, instead of the newspaper, and refer to “the thing you wear on your wrist to tell the time” instead of his watch.

It would be a lie if I said that life was completely normal. There were the times when he behaved eccentrically; whispered conversations about the fact that my mother was having an affair/trying to poison him/being incredibly unkind to him, or just that he was desperate to talk to me about something, but could never remember the topic.

The reality is that these delusions are simply a stage of the illness. Frightening for him, and distressing for us, particularly our mother, who was living with this daily. Try living with someone who, like a toddler, has no concept of time or distance or danger; who can no longer understand the changing seasons and why it’s not time for bed at 3.30pm on a dark winter’s day or who disappears for hours because he still loves walking and being independent. Contemplate the loneliness of living in a house where there is little or no conversation and you are exhausted from being a carer.

With eight years’ hindsight, it is easier to understand how my mother was struggling to come to terms with the fact that the tall, handsome and intelligent man she married in 1955 was slowly but surely vanishing.

The deterioration when it came last April was rapid. For a while, the local Alzheimer’s Association had taken him to a daycare centre twice a week and he spent one morning a week with a kind volunteer in her house. But lack of funds forced the centre to close and then my father’s behaviour made it impossible for him to go anywhere else.

That left my mother, who stands 5ft 2in to his 6ft 3in, as his sole carer, 24 hours a day, 7 days a week. By now it was as though he had regressed to the toddler-like “terrible twos”, wetting the bed twice a night, throwing tantrums, escaping from the house holding grimly on to a selection of obscure “treasures”, disappearing for hours and taking himself to bed at whatever time he chose.

Yet he still possessed phenomenal physical strength, and a recent medical had confirmed he had the stamina of a 50-year-old. But his grasp on life was precarious and my mother’s quality of life as a full-time carer was practically nonexistent. To give my mother a break, I whisked my father to London to stay with us. I had booked a carer, Sarah, for the week, who proved excellent.

I invested in a waterproof bed sheet, various types of incontinence pants and crossed my fingers. In my mind, this was a trial run and if it worked Sarah was going to live with my parents from May onwards.

By some kind of miracle, it worked. He slept through the night wearing his “funny pants”. I woke him in the morning, where he would kick his legs like a baby and smile at me. “Sarah the carer”, as she became known, washed him, shaved and dressed him and brought him down for breakfast where he consumed an enormous bowl of cornflakes, followed by two slices of toast and marmalade finishing with a cup of tea. But it had to be served in that order; there could be no deviation from the routine.

During that week we walked the dogs on Wimbledon Common; we ate out twice and he sat at the table and tried to join the conversation in his own way and his body clock reverted to normal: up at 8.30am, lunch at 1pm, dinner at 8pm and bed at 10pm.

I cherished my week with my father and would love him to have stayed, but it is a 24/7 job, and that week I ignored my partner and my 14-year-old daughter. I am a classic example of the sandwich generation, torn between duty to the past generation and the future one.

A week later, I took him back home to my mother. I stayed for lunch and when I got up to leave my father grabbed his coat and asked to come with me. When I said no, he asked why: “Have I been bad?” The look of consternation and anxiety was palpable. My heart broke. I got back in my car and drove back to London, tears running down my face.

As a family, we were novices in the field of mental illness and the chaos that travels in its wake. Middle class, middle of the road, our very ordinary life had been untouched by contact with the police or social services.

But all that was to change as a result of my father’s illness and the rollercoaster ride that was to become our version of normality.

At the beginning of April last year, his condition was often alarming and challenging, but still manageable. Yet by the middle of that month my father had been sectioned under an s5(2) (part of the 1983 Mental Health Act), and held for two days in an acute mental health unit. My mother, my sister, my brother and I spent more than 12 hours locked in the “quiet” room campaigning to get him released.

Outside, madness reigned. One of the other patients threw herself at the door repeatedly; another, wearing a flimsy nightgown, danced manically to loud pop music, while others schemed about how to escape, clutching their belongings in a bundle. We telephoned doctors, lawyers, and the local Alzheimer’s Society, while pleading with doctors and the senior staff nurse to release my father from this terrifying modern version of a Victorian asylum.

Amazingly, we achieved our goal and after less than 48 hours he was released back into my mother’s care. Two weeks later, he left the house on an unknown mission and had not returned three hours later. The police, who were helpful on this first occasion, changed their attitude on his third escape attempt, when he was discovered three miles away sitting in a stranger’s garden, confused and frightened. Their suggestion was to handcuff him and place him in “protective custody”.

Only the intervention of the house owner, my mother and my sister prevented that from happening. I scooped him up and brought him home to stay with me. That weekend was the start of the next phase where we became fully immersed in the life of the mentally ill.

Three days later, on May 7, I broke the promise my sister and I had made 30 years ago and placed him in a care home. Since then I have run the gamut of emotions from guilt, desperation, rage, frustration to fear, despair and anguish.

For too many people the word dementia conjures up a mental picture of a sweet-natured, white-haired elderly person who is nothing more than forgetful, but my family and the thousands caring for anyone with the disease can testify that the truth can be more frightening than it’s possible to believe.

While Alzheimer’s is the most common and is a progressive physical disease, the lesser known fronto-temporal dementia, which is what my father has, affects the frontal lobes of the brain behind the forehead that control behaviour and emotions and the understanding of words. The damage is the same: nerve cells die, the pathways that connect them change and gradually the brain tissue shrinks. Those affected begin to lose their vocabulary and understanding of what objects are, and their personality, as we were to discover, can undergo a radical transformation.

I have come to envy my friends whose fathers are struck down by heart attacks and die instantly. Their grief is sudden and driven by shock, but knowing what we are going through, none would trade the extra years, to endure the long, drawn-out pain we are suffering.

All we want are simple answers to several straightforward questions: “How ill does my father have to be to qualify to be fully funded? What do we do when my father’s savings have been exhausted? Who is the elusive ‘third party’ the Multi-disciplinary Team and the Continuing Healthcare Panel keep referring to? Will the third party fairy appear and wave her magic wand in time to pay the shortfall?”

As an update on the financial aspect, the council agreed to pay £680 a week, leaving us with a “third party top-up” of £110.21 a week to find. Then came the blow – the payment was backdated to September 25 but expired on January 16. And the money would go straight to the home, whose fees we have already paid.

I reasoned that we would get a few months grace offset against that money when we would not have to pay. The conversation continued and I have to admit that I honestly could not comprehend the maths or the logic. From January 17, it seemed, the council would only pay £472.57, leaving us with a “third party top-up” this time of £317.64.

It is the collusion between some care homes and the councils that is dismaying. Some, and I use this word carefully, some care homes have facilitated “deals” with local councils and agreed preferential lower rates for funded patients. Sadly, the home my father is in does not have that arrangement. However, the home that is within walking distance from my parents’ home, whose weekly rate is even higher than the one he is living in, has the elusive deal with the council. Unfortunately, this is the home that refused to accept my father because of his volatile behaviour. As my daughter would say, “Go figure.”

Then, my father was rushed to hospital because he was unable to eat or drink; it seemed as though he had suffered a mini stroke. If that wasn’t distressing enough, my mother received a bill from the council demanding £6,185.48 for care, calculated as two days per week at £379.81. But hang on, we are privately funded and those bills have been paid. I thought we were going to be credited, not debited.

So, what do you do if your family find themselves facing this situation? With dementia numbers increasing year on year, there is unlikely to be any family in the UK that will remain untouched. As a nation we must take responsibility constantly to challenge this government, or any that succeeds it, to ensure the prime minister’s inspirational words become reality, not just a vote-winning campaign.

There needs to be a complete overhaul of the way care homes are designed and run, with improved facilities for people with dementia to live in. You only have to read about the revolutionary Hogewey Village in the Netherlands, where they have transformed the living environment, treatment and care of people with dementia. So it is possible.

To ease the unnecessary trauma requires someone very powerful and brave to rip up the existing rules about funding, implement a simple and straightforward set of directives and make sure they are followed by every council. No more postcode lottery with each council adapting and implementing its own illogical and incomprehensible funding requirements.

Of course, most importantly, we should undertake to alter our perspective of the elderly, especially those with dementia, who deserve to be treated with dignity and respect, acceptance, understanding and kindness.

My hope for the future is that the precious time any family spends with a loved one suffering from dementia (or any other terminal illness) is dedicated to love and laughter, rather than consumed by financial anguish.

Gail’s father, Raymond Rolfe, sadly died a few weeks after this article was written. Gail and her mother were invited to attend a meeting this week with the West Essex Continuing Healthcare Panel to discuss her late father’s funding. On January 30, 2014, Essex County Council paid £11,074 to the care home but reclaimed the money on April 30. On May 23, the same amount was repaid to the care home. At the time of going to press, neither Gail nor her mother had received a breakdown of what that payment covers

IFAs play a key role in alerting clients to a little-known compensation scheme for victims of mistakes made by NHS trusts over care home fees, say legal experts.

Lawyers estimate that £100m has been set aside for families to recover care home fees wrongly paid by elderly patients – which means a windfall for IFA’s through referral fees.

However, many IFAs are unaware of the scheme – and the tight March 2013 deadline – because NHS trusts are barely promoting the policy by only fulfilling its minimum obligation to do so.

Many victims had to sell their home to pay for their care even though they were entitled to full funding.

Alarmingly even family members who kept appealing the initial decision and were rejected again and again – have now been told they were entitled to funding after all.

Experts say new deadlines to make a claim set by the Department of Health have been poorly communicated and ‘smack of a cover up’.

Andrew Farley, director of Farley Dwek Solicitors, which has set up a dedicated free advice line for IFA’s said:

“IFAs have a key role to play in raising the profile of this national disgrace. If the Government is to avoid being accused of a cover up it has to give the NHS the resources it needs to communicate this policy effectively. Putting it up on a single webpage where it will never be found is scandalous.

“We estimate the Government has earmarked at least £100m for the relatives of victims but we believe they are quietly satisfied at the relatively slow take thanks to a strategy of trying to keep the issue low profile. By highlighting the issue with IFA’s hopefully more victims will come forward.

“If your client or a relative of a client was rejected for funding on financial eligibility aloneand their healthcare needs were never consideredthen they should challenge the decision immediately. We’re handling more than 250 cases and it’s just the tip of the iceberg.”

Farley Dwek has set up a specialist IFA hotline for advisers who need more advice (0161 272 5222).

A new deadline of 31^st March 2013 has been set by the Department of Health for families to lodge a claim to recover care home fees spent between 1^st April 2011 and 31^st March 2012.