It has been called the ‘best-kept secret’ in funding care, but campaigners argue the NHS should do more to let people know.
NHS Continuing Health Care (CHC) is free social care available to everyone.
Despite this, some 75 percent of people over 45 have never heard of HCC, which can fully fund the costs of care for those who qualify, such as dementia patients and others. with complex long-term health needs.
Another 15 percent have heard of CHC but don’t know any of the details, a study from Just Group recently found.
Retirement specialists said the low level of understanding – only one in ten knew what CHC is or had used it – reflected a system in which most people don’t know when to pay bills and when the NHS will step in. in.
However, among the five people who had heard of it, almost half had accessed a CHC plan.
CHCs can be provided in a variety of settings outside of the hospital, such as in your own home or in a nursing home.
Eligibility is based on an assessment by a team of healthcare professionals who will examine a person’s care needs and relate them to the following: what help does that person need, how badly those needs are -they complex and how unpredictable they are, including the health risks if the right care is not provided at the right time.
Stephen Lowe, group communications director at Just Group, said: “This is the second year that we’ve been asking questions about NHS continuing health care and it remains the best-kept secret of government support available to fund NHS. care.
“This despite a 2020 report from the Ombudsman for Parliament and Health Services (PHSO) recommending improvements to communications and the rating system to ensure people receive the support they are entitled to without jumping through the hoops.” . “
The PHSO report found that more than 175,000 adults were considered for NHS CHC funding in 2019-2020 and that around 112,000 were assessed as eligible. Assessments were suspended for five months last year due to pandemic lockdowns, but restarted in September.
Mr Lowe said that the recent announcement by the Prime Minister to reform the financing of care by introducing a tax on health and social care and a cap on the costs of care is a chance for the government to “be clear with the electorate “about who pays for their own care and when the state is ready to step in and help.
He said: “Reforms need a far-reaching public awareness campaign to avoid any misunderstanding. People should be aware that even with a levy and a cap on personal care costs, they are also likely to face significant costs out of their own pocket if they need professional care later in life, i.e. in their own home or in a nursing home.
“As we await the details of the reforms, information, advice and professional guidance becomes increasingly important to help people get the support they need when grappling with the complexity and cost of seeking care. “
Angela Sherman, who created the Care to be Different counseling website after her own parents’ experience with the system, says families have faced the same frustrating issues with CHC for years.
The website has seen “an increasing demand for information and help” at every step of the CSC process over the past 12 months, which has resulted in more helplines, where people can speak directly to a former specialist nurse at CHC or a current case manager.
“If you are alone you have no chance”
When Pamela Homer’s husband Rob was diagnosed with early-onset Alzheimer’s disease at the age of 65, she believed the couple would be able to get the support they needed.
“No one told me I would have a battle on my hands. When we asked for ongoing NHS health care, a package of care fully paid for by the NHS, the odds were stacked against us from the start, ”she said.
A first request for funding, presented by his occupational therapist, was ignored. Rob was transferred to a local Birmingham nursing home funded by his dismissal money in February 2019 but quickly escaped. After less than two months, Pamela was told that Rob’s complex needs were too much for them to handle. She ended up with individual care costs of £ 2,800 per week and the dismissal money quickly ran out.
Pamela began to look elsewhere for a home specializing in dementia precocious before receiving her first assessment of HCC. However, no social worker, psychiatrist, or anyone with clinical knowledge of Rob’s dementia was there.
“A month later, the formal rejection was issued, which was riddled with inaccuracies. I had the impression that they had the wrong person; Robert’s age was wrong; he said he had been hospitalized when he had not been; he said he refused to participate in the process when never asked, or even had the capacity to understand the question. Faced with a long three-month appeal process, with no prospect of funding during that time, I filed a complaint.
“If you’re alone, you don’t stand a chance. You are exhausted, mentally and physically, and are rejected at every obstacle. It just seemed like the professionals who were supposed to support the system were always busy and understaffed. “
CHC was ultimately awarded the award which enabled Robert to move into a specialist home in September 2019. Pamela said, “It made a huge difference. The staff were able to communicate with him and he got settled very quickly. I was able to spend more time with him instead of fighting for proper support. It will always be the most stressful time of my life. The toll this has taken on our children and myself cannot be underestimated.
“Throughout the CSC process, time spent keeping records, writing reports, trying to get calls answered, attending meetings was time that could have been better spent with my husband. It was unforgivable. Robert passed away in March 2021. It is vital, we are coming together now to correct this unfair practice.
Pamela supports Dementia UK’s Guiding the Way campaign to pave the way for a fairer and more cohesive CCS process. To find out more visit: dementiauk.org/guiding-the-way