The little-known NHS Continuing Healthcare benefit can help the most vulnerable, but with the clock ticking thousands of people could forfeit backdated payments
Time is running out for many of Britain’s most vulnerable people who are struggling to pay crippling care bills and could be eligible for several years backdated funding from a “secret” NHS scheme. If no one acts on their behalf before the end of next month the right to retrospective payments going back to 2004 will be lost.
Every year thousands of family properties are sold to enable mainly elderly people to meet the costs of their care. But if the main reason for a person going into a home is ill-health they should be eligible for the virtually unknown Continuing Healthcare, which means that the NHS covers all the costs, including accommodation. There is no ceiling on the amount that can be paid out, there is no means test and it is not age-related.
Anyone who is successful in claiming on behalf of a loved one could be entitled to have the payments backdated to April 2004, even if their relative is no longer alive. But applications must be submitted before 30 September.
Under the present system (which could be set to change – see below), anyone moving into a care home in England with savings or assets of more than £23,250 (£22,000 in Wales; £24,750 in Scotland) is liable for the entire costs – unless they are there because of a “primary health need”. That shifts the financial responsibility to the health service.
With care and nursing homes charging as much as £1,000 a week, the expense can be enormous. “Continuing Healthcare is a huge secret,” says Lisa Morgan, a partner at solicitors Hugh James. “People can’t ask whether or not a member of their family is eligible if they don’t know about it in the first place.
“Communication and information are even more important with the deadline approaching. The Department of Health said there would be a communication programme so as many people as possible would know about it. I’ve seen hardly any publicity. I’m worried that thousands of people are going to miss out.”
Access to Continuing Healthcare can be particularly difficult for those suffering from dementia. Michelle Mitchell, charity director general of Age UK, is also concerned. “The NHS needs to do more to make people aware of Continuing Healthcare, particularly for those families that may have been eligible in the past and are running out of time to make a claim,” she says.
“Assessment does, to an extent, take mental health into account, but factors such as cognition and emotional health, key symptoms of dementia, are disappointingly not weighted as priorities,” says Andrew Chidgey, director of external affairs at the Alzheimer’s Society.
While the charity does not have figures of how many people with dementia specifically access Continuing Healthcare, the latest estimate suggests it is only 46,599. There are around 100,000 people with late-stage dementia, so the charity believes many more should be eligible.
Anyone thinking of applying should be prepared for a long battle
The first step is to contact your local primary care trust (PCT) and ask for an assessment. If you can’t find the necessary contact details, call NHS Direct (0845 4647).
The initial screening is designed to see if there is a case for eligibility – it cannot, in itself, lead to automatic payment. Usually, a claim is rejected at this stage.
“If you are not satisfied with the outcome, challenge the decision,” says Morgan. In theory, you should be told why your application has been turned down.
Should the initial check suggest that a person may be eligible, the PCT will call on what is known in the jargon as the “decision support tool”, which involves a series of separate assessments covering 12 different “care domains” – including behaviour, skin condition and mobility. The results can take weeks.
The chance of success depends greatly on where you live. There is a “national framework” which covers England and Wales, but all the evidence points to a postcode lottery. (Continuing Healthcare is available in Scotland and Northern Ireland, but the eligibility criteria differ and the 30 September deadline does not apply.)
“Different PCTs interpret the rules differently,” says independent financial adviser Russell Hall of Almary Green.
However, anyone who is turned down can take heart from what has become known as the “Coughlan test”.
Pamela Coughlan needed full-time care after she was paralysed in a road accident. This was paid for by the NHS until her local health authority transferred responsibility to the social services, which meant she was subject to means-testing and had to pay the costs herself. After a two-year legal battle that went to the Court of Appeal, the ruling was that the responsibility for looking after someone with severe medical problems lies squarely with the health service, and therefore savings and assets don’t come into the equation about who picks up the bill.
But, despite the ruling, many people still find they have to call on a solicitor.
Lawyer Jennifer Margrave, a member of the 1,300-strong organisation Solicitors for the Elderly, says: “We can show someone who is not used to medical issues how to interpret the evidence.”
Many solicitors will offer representation on a no-win, no-fee basis – otherwise typical fees are around £2,000.
You can keep costs down by doing a lot of the legwork. Vital evidence to support your case is often found in the records of care homes, hospitals and GPs. Ask to see these under the Access to Medical Records Act.
“It helps if you have power of attorney,” says Margrave. “If not, argue that, as next of kin, you are protecting your relative’s interests.”
There are alternatives to paying for a solicitor. Age UK offers free advice, as do other charities including the Alzheimer’s Society.
A Department of Health spokesman said of the impending deadline: “We asked the local NHS in March to let people know about it and would encourage people to contact their local primary care trust if they think they are eligible.
“The deadline allows for a minimum of 12 months between the period of care in question and the deadline.
“And we have provided for exceptional circumstances which mean that some cases may still be accepted after the deadline.
“It is appropriate to set deadlines because it becomes more difficult with the passage of time to properly evaluate people’s historical needs.”
Family claims £100,000 after three-year legal battle
The weary family of 88-year-old Edna Witt, who suffers from Alzheimer’s, finally had to enlist the help of a lawyer to claw back more than £100,000 she was entitled to for care home fees.
Time and again since her mother’s diagnosis seven years ago, Julie Burton was told she wasn’t eligible for Continuing Healthcare funding. This was despite the fact that, as well as Alzheimer’s, Mrs Witt had been diagnosed with a string of serious medical problems including a heart condition and acute mental health problems that, on one occasion, caused her to attempt to strangle another patient in her Eastbourne care home.
Her family would not take no for answer. “This is not money we have ‘won’ – it is money that never should have been taken from my mother in the first place,” Mrs Burton, of Ringmer, East Sussex stresses.
When Mrs Witt went into care, Mrs Burton says: “Social services swooped on us and wanted to see all her bank accounts. They asked if she had her own house. When we told them she did, they said we would have to sell it to pay for the costs of her care.”
It all became such a bureaucratic nightmare that, at the beginning of 2009, they contacted solicitors Hugh James, and began what turned into a legal battle that lasted well over three years.
“To be honest, we would have given up without the help of the solicitors,” says Mrs Burton “The way the PCT acted was appalling.”
Mrs Witt had gone into care in 2005 after the death of husband, Clifford, hastened the onset of dementia.
“She went downhill very quickly,” says Mrs Burton. “We just couldn’t look after her any longer. Each time they turned us down we told them to go back and look at my mother again. It’s a box-ticking exercise. They almost always tell the relatives ‘no’. But don’t accept it – you have the right to appeal and demand a formal assessment.”
She advises anyone who encounters the same difficulties to submit as much evidence as they can. She believes the home’s daily care records were key, but the family also acquired hospital notes and details from Mrs Witt’s GP.
“A lot of people give up,” says Mrs Burton. “You have to remain strong and carry on. Have your facts ready and be prepared to challenge their decisions.”