Calls for reform of NHS care packages for disabled people

Charities have voiced frustrations at a lack of action from the Government after repeated warnings over access to NHS Continuing Healthcare (CHC), designed to provide ongoing care for people with complex needs.

They highlighted that patients have been facing long and stressful delays and some have died while waiting for care.

Latest figures show that in the last three months of 2018 alone, almost 12,000 people in England were deemed not to be eligible for a care package after being referred for CHC. The number told they did not qualify for CHC in that period included 1,190 people in Yorkshire and the Humber.

Parkinson’s UK is part of a coalition of disability charities which have been calling for reforms since a report in 2016 found that 42 per cent of people were waiting more than the 28-day deadline to receive their decision.

The charity renewed its call for action as it awaits the Government’s Green Paper on the future of adult social care.

Lloyd Tingley, a senior policy adviser at Parkinson’s UK and the co-chairman of the Continuing Healthcare Alliance, said: “The NHS Continuing Health Care system is denying many vulnerable people free health care they are entitled to. Some are dying before they get the care they need or are forced to sell their homes to pay for care that should be free.

“There are fundamental flaws throughout the system, from the not fit-for-purpose checklist and decision support tool, to assessors’ lack of expertise on the complex conditions they are making life-changing decisions on.”

NHS England figures show in the Harrogate and Rural District Clinical Commissioning Group area, there were 203 referrals for CHC in the three months to January and 70 were not eligible.

A CCG spokesperson said: “We apply the established national framework when assessing referrals for continuing healthcare and there are robust processes in place of assessing people’s eligibility accurately.”

In Leeds, 185 referrals for CHC were not eligible in the same period after 998 applications were made.

A Leeds CCG spokesperson said: “All patients referred for continuing healthcare have a nurse or social worker involved in their care. Based on the person’s assessed needs, they will be able to offer patients alternatives to Continuing Healthcare if they are found not to be eligible, for example, adult social care or voluntary sector services.”