Living with dementia magazine July 2009 issue

Lisa Morgan, Associate Solicitor at Hugh James Solicitors in Cardiff, represents families in England and Wales claiming they have been wrongly charged for nursing care fees. Here, she explains why people need to know about NHS continuing healthcare.

Background
If a person is eligible for NHS continuing healthcare, they will not have to make any contribution towards their long term care fees. The NHS pays the lot. In October 2007, a new national framework for England of eligibility criteria for NHS continuing healthcare came into force. The aim of introducing it was to end the postcode lottery of care funding, and to clarify who is eligible for NHS continuing healthcare.

Although the new framework was aimed at improving the system, I still see a clear disparity across the country of who is deemed eligible. Under current government policy, there should be a comprehensive assessment for people as soon as they are considered as needing long-term care to determine whether they are entitled to have their fees paid (see below). In many cases, that is not happening and too many families are losing out.

Who is eligible?
The NHS is responsible for meeting the full cost of a package of care for people whose primary need for care is a result of their health. This care can be received in hospital, a care home, or at an individual's home. It is a common misconception that if someone is not in hospital, they have to pay for healthcare.

It is very important for families to ask for continuing healthcare assessments to be undertaken. Everyone needing long-term care as a result of an illness should be assessed by their primary care trust in England, or local health board in Wales. Initially, the assessment should consider the person's medical and health needs only - not their ability to pay.

If you are unhappy with the outcome once an assessment has been done, you can challenge the decision through a review procedure. Many cases are turned down initially, but with persistence a successful outcome can be reached, as highlighted here.

Harry Denham
In 2002 at the age of 76, Harry Denham, who had Alzheimer's disease, was admitted to a nursing home in Newport, Wales. Harry was severely confused and disorientated as a result of his Alzheimer's. He was also experiencing anxiety, agitation and aggression. Social services informed his family that he needed to be admitted to a nursing home. Harry was financially assessed and asked to contribute £85 a week towards the cost of his care.

When his wife Florence died in April 2003, social services informed Harry's family that his home would have to be sold in order to pay for his ongoing care costs, which had increased to £750 per week. The family home had been taken into account in assessing his ability to pay.

Harry's assets rapidly dwindled so they ended up being below the threshold for local authority support (currently £23,000 in England and £22,000 in Wales). Social services then paid the bill, but the family was told it had to pay £40 a week as a top-up fee so their father could remain in the same nursing home.

First informed
Jane Czyrko, Harry's daughter, first heard about continuing care after attending an Alzheimer's Society annual conference in 2007, after her father had died. Jane says,

'I'd wrongly been led to believe that Alzheimer's disease wasn't regarded as a health issue, but a social issue. I was never told there was something called continuing care and that there was a possibility that my father's fees should be met by the NHS.'

The family asked the local health board to carry out a retrospective assessment of their father's health and nursing care needs. Following a panel hearing, the board agreed that Harry should have been eligible for NHS continuing healthcare and his estate was reimbursed with all the nursing home fees he had paid.

Jane says,

'We should have never been forced to sell the family home. They took money that belonged to my parents and I'm sure they would be proud that we fought to recover what they had worked all their lives for. Not everyone with Alzheimer's disease will be entitled to continuing healthcare, but families should at least be given information and the opportunity to ask for it.'

Challenging the decision
If you disagree with the outcome of the continuing care assessment, you can appeal. The first step is to ask the primary care trust or local health board in Wales to assess your relative and undertake a retrospective assessment from the date they went into the home. Challenging continuing healthcare can be a hard and long slog. However, I believe that if you are persistent and cases are argued in a thorough way, cases will be won.

Further help
Alzheimer's Society's NHS Continuing Care Volunteer Support Group offers advice for people who wish to appeal against a decision refusing continuing care. If you would like to get in touch with the group, call our helpline on 0845 3000 336.