NHS ‘system failures’ leave tens of thousands without ongoing care available to them

Relatives of people affected dementia are still struggling to access NHS support due to ‘system failures’, according to a leading charity.

Dementia UK’s head of policy said I problems with NHS Continuing Healthcare (CHC) have left families wrongly paying for help. HCC is available to adults with complex long-term health needs who are entitled to free social care organized and funded solely by the health service.

However, many patients and their carers do not know the service exists, often because their GP or doctor does not tell them. A poll earlier this year 75% of people over 45 have never heard of it and do not know what help they are entitled to.

“When seeking continued NHS healthcare funding, families with dementia find themselves faced with a system that can be difficult to navigate, plagued by delaysand can be confrontational,” said Andrew Pike, Head of Policy, Campaigns and Public Affairs at Dementia UK. I. “They also lack knowledge about HCC and receive little support throughout the application process.”

Dementia UK is calling on the government to “urgently” publish its ten-year dementia strategy, which was announced in May but has yet to materialise.

Around 900,000 people have dementia in the UK with a number expected to reach 1.6 million by 2050.

To be eligible for the CHC, patients are assessed by a team of healthcare professionals who look at all their care needs and relate them to the help needed, the complexity of the needs, their intensity and their unpredictability, including no risk to their health if the right care is not given at the right time.

Eligibility for CHC is based on assessed need and not on a particular diagnosis or condition. Charities say the complexity of the system means many people with dementia have their claims wrongly rejected. Anyone who needs urgent care – for example, the terminally ill – can have their assessment expedited.

The NHS itself says the process involved in ongoing NHS healthcare assessments can be ‘complex’ and directs people to an organization called Beacon, which gives free independent advice on financing.

“Families with dementia and our specialist dementia nurses, known as Admiral Nurses, have told us that CHC assessors often lack understanding and knowledge about the complexities of dementia and how disease can impact the needs of the individual,” Pike said.

“Decisions are often made that do not seem to reflect the nature of their loved one’s complex and unpredictable health needs. A rejected CHC application also means families are missing out on funding that would have paid for their loved one’s care. This may mean that they find themselves faced with increased care responsibilities; they may also have to fund the care of the person themselves, straining their finances and increasing levels of caregiver stress and burnout.

“More needs to be done to educate families and professionals about the existence of CHCs, improve the quality of the process and the experiences of families who apply so that their loved ones receive the care they so urgently need.

This is a survey from Dementia UK, released on Thursday to coincide with Carers’ Rights Day, highlights the impact unpaid care can have on those caring for someone with dementia .

More than half (54 per cent) do not know what support exists or what benefits they are entitled to when caring for someone with dementia. Almost a quarter of people (23%) did not know benefits such as care allowance, The reduction in housing tax and the disability premium, among others, are available to them.

About two-thirds (66%) say they cannot admit they have difficulty caring for someone with dementia, while 55% said their physical health has negatively affected as a result of caring for a person with dementia. Almost a third (31%) of the 507 respondents said they felt excluded from services due to limited awareness and understanding of dementia.

Mr Pike said: ‘Many families affected by dementia struggle with the additional demands that a diagnosis of dementia can bring. Carers often tell us they need to reduce their working hours or stop working altogether, and support and benefits such as continued NHS healthcare funding can be difficult to access, with the system failing to recognize their needs.

“In May, the government announced it would produce a 10-year dementia strategy, but that has yet to materialize. We urgently need this back on the agenda, with a fully funded dementia strategy and an integrated model of health and social care so that people with dementia and their families don’t feel more abandoned by the systems that should support them.

The government has said its dementia strategy will be published “later this year”. Officials said it will focus on how new drugs and emerging science and technology can be harnessed to improve outcomes for dementia patients across the country.

A government spokesperson said: ‘Carers play a vital role in our communities, and we are providing local authorities with £291.7 million in funding for short breaks and respite services, as well as counseling and additional support. We are looking at plans to improve dementia care in England to ensure that everyone with dementia, their families and carers receive high quality, compassionate care from diagnosis to end of life.