The true cost of caring for your loved ones

Long-term care for ill relatives can lead to huge debts – but help is at hand, you just have to know where to look

Success: David White won back £10,000 from his local NHS Primary Care Trust

The care funding crisis continues as the Government drags its heels over a decision on how much people should have to contribute towards long-term care needs.

Meanwhile, with so many organisations involved in the process, families are being forced into debt as they get turned down for funding, or have it taken away by the ridiculous complex system and end up facing enormous bills.

David White knows only too well the financial burden the cost of caring can have upon a family.

The funding for his mother-in-law’s care in a nursing home was withdrawn after two years and left the family £10,000 worse off and in debt to the nursing home.

But after a year long fight he has just received all that cash back from his local NHS Primary Care Trust.

“It was a hard slog but certainly worth persisting and I would recommend other families to do the same as I did,” says David, 71, from Bournemouth.

“It has been a difficult and stressful time for the whole family, especially my wife Diane.

“Her mum, who has vascular dementia and a host of other conditions, was funded by the NHS under its continuing care package until 2010 when they reassessed her and the decision was made to withdraw it.

“I challenged that assessment under the Department of Health’s National Framework, which lays out what procedure the NHS assessors have to follow for elderly people with care needs. It’s a bit complicated but, basically, all the vast number of organisations involved in making the funding decision have to make a unanimous decision and they didn’t.

“I realised this when I started checking the details of the assessment and I couldn’t believe they thought she didn’t qualify for funding in her terrible ill state of health.

“It’s a bit difficult to know where to start.

“But the crucial thing for anyone who feels that they have been turned down for funding wrongly is to make sure they have all their facts right.

“I got help through the Alzheimer’s Society , and that has led me to become a volunteer and try and help others. But there are other organisations that can help those with all sorts of different illnesses and conditions.”


There is a glimmer of hope on the care funding front, however, as the Department of Health has recently announced some new deadlines for people who have been previously turned down for funding and who want to appeal for retrospective funding.

While this means families have to get appeals in quicker, it also means the NHS has to get its finger out and deal with cases within a strict time frame.

David was lucky to have got it sorted in a year.

The process has been dragged out for years and years for many others.

Anyone who has been turned down for funding help before March 31, 2011 has to put in an appeal before September 30, 2012.

Those turned down between April 1, 2011 and March 31, 2012 have to launch appeals before March 31, 2012.

From April 1, 2012 people who have been turned down will have six months to appeal to the Primary Care Trust concerned.

The Primary Care Trust then has three months in which to conduct a review.

The person then has six months to begin an appeal with the Strategic Health Authority.

The authority, in turn, has three months to conduct a review.

So, in theory, all cases should be sorted within a year.

Andrew Chidgey, from the Alzheimer’s Society, says: “It is devastating enough for people to cope with family members with serious illnesses without them having to battle through all the hoops to get the right care and funding in place.

“This is something everyone is facing and it’s only going to get worse as we all live longer and have more complex care issues and needs.

“The Government needs to act on the funding of care.

“They need to look at what care is available and look at how fair the funding system is.

“People are not expecting the state to pick up the full bill

“However, we think there should be a funding system that is fair and straightforward.

“And that simply is not there at the moment.”

How you can secure funding

These hints and tips are based on the experience of members of Alzheimer’s Society NHS continuing healthcare volunteer group who have been successful in getting NHS continuing health care for people with dementia.

But they should help people, whatever their condition. The basics, especially for those diagnosed with dementia and their carers, is to start thinking about continuing care funding as early as possible. Even if a person is not yet eligible, it’s worth preparing for assessments in the future and it can be used to challenge decisions on NHS continuing healthcare.

● Create a medical history for the person you care for. Ideally this should be on one page, and should be regularly updated.

● Good record-keeping is essential. Record the date, time, contact person and brief summary of all conversations with staff from your primary care trust, hospital, GP, care home, social services and so on about the person’s needs. Records kept by the various bodies involved in a person’s care can sometimes be inaccurate or inadequate and a high staff turnover may mean a lack of continuity.

● Request medical records from various bodies involved in the care of the person, such as the hospital or the GP.

● When applying for or challenging a decision on NHS continuing healthcare it is often best to put your case in writing and keep all correspondence.

● Use the Department of Health National Framework for continuing care to do your own assessment of the person’s needs.

● Try to attend all assessments or appeal/review hearings by health bodies. Visit for lots more advice.

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