Price of dementia: the families struggling to get NHS help

Dementia Awareness Week aims to raise understanding of the often heartbreaking process of trying to get NHS funding

The Observer,

Tenacious Ann Reid has fought hard to get Continuing Healthcare funding for her mother Peggy Belcher. Photograph: Sam Mellish/Age U

  • Thousands of relatives and carers of dementia sufferers are battling to receive funding towards crippling care bills. Under the NHS Continuing Healthcare scheme, older people can qualify to have care and nursing home fees paid in full if they are judged to have chronic health needs. This money can help alleviate the burden for families who are otherwise forced to spend every penny and sell their home to meet the cost of care.There is no ceiling on the amount that can be paid out, no means test and it is not age related. Yet access to this fund can be a particular struggle for people suffering from dementia.

    Those acting on their behalf are often forced through lengthy assessments and appeal processes.

    “This is causing unnecessary stress and anxiety for sufferers and their families, when all they want is access to healthcare,” says George McNamara, head of policy for the Alzeimer’s Society. “They shouldn’t be affected by a system that isn’t working.”

    As Dementia Awareness Week kicked off on Sunday, charities said more must be done to increase awareness of the problems. “The care system needs an overhaul to improve access to funding,” says Ruthe Isden, health programme director at Age UK. “It’s very complex, and people struggle to know what they’re entitled to.”

    Peggy Belcher, 95, has suffered with dementia for 14 years. She is bedridden, unaware of her surroundings, struggles to communicate and receives round-the-clock care. Without the tenacity of her daughter, Ann Reid, 68, she wouldn’t have received Continuing Healthcare funding.

    Ann sold her mother’s two-bedroom house for £176,000 nine years ago to pay for care home fees that have so far amounted to £222,000.

    Peggy had some savings, but they were quickly used to fund the £850 weekly cost for the home in Bexhill-on-Sea, East Sussex.

    “She is now on end-of-life care,” says Reid. “The level of care is excellent. But every penny has been put towards this.”

    Together with nurses at the home, Reid applied for funding on behalf of her mother in February 2013. Despite describing the assessment as a “bureaucratic nightmare”, she managed to get her mother’s care and accommodation costs funded, with payments backdated to December 2012.

    Access is assessed by local authorities and clinical commissioning groups (CCGs). “I had to spend three hours answering questions,” says Reid. “It was a seemingly endless tick-box – but fortunately I had a brilliant nurse to help.”

    She was asked about everything from her mother’s propensity to bed sores to whether she could sit up or talk. “At the end of it I’d absolutely had enough. I burst into tears as the process was emotionally exhausting.”

    The assessor told Reid she could appeal if the funding was turned down, but even then it wasn’t guaranteed. “I wouldn’t have taken no for answer – but I felt they were trying to put me off. I hear that a lot of people give up,” she says. “But you have to be prepared to challenge their decisions.”

    Many people remain unaware of Continuing Healthcare. According to charities such as Age UK and the Alzheimer’s Society, tens of thousands of people who might qualify are not applying. One problem, they say, is that the NHS faces stringent financial targets. “It might be tempting for CCGs to prioritise their bottom line when the main concern should be providing seamless integrated care,” says McNamara.

    There are around 59,000 individuals receiving Continuing Healthcare, according to the Department of Health. However, the Alzeimer’s Society believes many more could be eligible.

    The chance of success depends greatly on where you live. There is a “national framework” which covers England and Wales, but it is somewhat of a postcode lottery. Continuing Healthcare is available in Northern Ireland, but the eligibility criteria differ. Scotland is reforming its rules and funding may be restricted.

    “There are big variations in the number of people receiving this in different parts of the country,” says Isden. “Different areas have responded differently to the financial pressures that they face. The framework isn’t always followed correctly with different eligibility criteria across different local authorities.”

    Dementia is too often seen as a natural part of ageing, with the needs of patients failing to be properly assessed.

    “The system is fraught with problems, and many turn to us for help,” says Stephanie Rose, director of Solicitors for the Elderly. “It’s a minefield with all the administration and limited funds available – we are seeing rising numbers of people having to appeal, which is a long-winded process.”

    If you take this route, many solicitors will offer representation on a no-win, no-fee basis. Alternatively, charities offer free advice. To support your case evidence can be found in the records of care homes, hospitals and GPs. You can also ask to see these under the Access to Medical Records Act.

    A spokesperson for the Department of Health says: “Eligibility for NHS Continuing Healthcare is based on an assessment of an individual’s overall needs. It is not condition specific. We are working with NHS England, charities and other organisations, to make sure people who should get this are able to.”

  • http://www.theguardian.com/money/2014/may/19/dementia-awareness-nhs-funding