People with dementia forced to fight for free NHS care

People with dementia are being forced to fight funding battles so they can receive Continuing Healthcare, with some ending up dying before a decision on eligibility has been made.

Continuing Healthcare funding is not means tested and pays for a person’s healthcare as well as their personal care needs.

A report by the Public Accounts Committee found that although NHS Continuing Healthcare (CHC) funding is intended to help some of the most vulnerable people, who have significant healthcare needs, they often aren’t even aware the funding is available and there is no one to help them navigate through the process.

People that are assessed spend too long waiting for a decision, with some dying before a decision has been reached. In 2015-16, around a third of assessments took longer than 28 days.

In addition, the Committee found that there is ‘unacceptable variation between areas in the number of people assessed as eligible to receive CHC funding, ranging from 28 to 356 people per 50,000 population in 2015-16, caused partly by clinical commissioning groups (CCGs) interpreting the assessment criteria inconsistently’.

Committee chair, MP Meg Hillier MP said: “Conditions such as Alzheimer’s disease and multiple sclerosis have devastating effects on sufferers and their loved ones. Help with meeting the costs of ongoing care can make a critical difference to their quality of life.

“It is therefore distressing to see the system intended to support such people fall short on so many fronts.”

The Public Accounts Committee called on the Department of Health and NHS England to ‘recognise that the system is not working as well as it should’ and do more to ‘ensure CCGs are meeting their responsibilities, or to address the variation between areas in accessing essential funding’.

Ms Hillier added: “Oversight of CHC funding has been poor and NHS England’s demand that clinical commissioning groups make big efficiency savings will only add to the financial pressures on the frontline.

“Government must step in now to ensure people with continuing healthcare needs are aware of the help available and that those eligible for funding receive essential care in a timely and consistent manner.”

Janet Morrison, chief executive of Independent Age, called it “utterly unacceptable that some people who are eligible for the package of care either don’t know about it, find it too complicated to access, or are waiting too long for a decision, in which time their health may have significantly worsened.”