The system for NHS continuing healthcare funding is chaotic and opaque, say leading charities Parkinson’s UK and the Alzheimer’s Society. 

It’s failing the very patients it is meant to help, forcing them to pick up the cost of care they can’t survive without. And is so complicated that even health and social care professionals struggle to understand it, they say.

Prompted by concerns that the system was not fit for purpose, the All Parliamentary Group on Parkinson’s disease and charity Parkinson’s UK carried out the first ever formal inquiry into the funding package that is designed to provide free healthcare to people with severe health needs.

The Inquiry found that 59% of NHS continuing care assessments don't involve a professional with specialist expertise in or knowledge of the applicant's condition, leading to inaccurate and incorrect decisions on funding. 

Somed 40% of people going through the assessment process reported a lack of empathy and transparency about the assessment or the appeals process on the part of professionals.
And one in four of patients were repeatedly reassessed despite having a progressive condition, and in one in five cases, there was evidence that national guidance was not being followed. The process also takes far too long.

The health and social care professionals interviewed for the inquiry admitted that they found the system so complex, it was hard to follow correct procedures. Parkinson’s UK chief executive, Steve Ford, said that it was “a disgrace that people with Parkinson's and their families are being put through this kind of distress – and put in a position where they may have to sell their own homes to pay for care.”

He added: "The government must act now to overhaul this pitiful system, and bring in a simplified NHS continuing care process which supports those who need it most." he charity is asking the public to get involved in the charity’s Failing to Care campaign to put pressure on the government to change NHS continuing care. 

It is calling for NHS England to take charge of monitoring and performance managing continuing healthcare assessments, with the establishment of an improved national framework with clear processes, guidance, and timelines for decision-making to be applied by CCGs. 

George McNamara, Head of Policy and Public Affairs at the Alzheimer’s Society, said: “The financial support provided by NHS continuing healthcare is a lifeline for people with dementia and their carers. It is deeply concerning that so many people struggle to access this support and are subjected to frequent and unnecessary assessments.”

He added: “A system where people are left abandoned when they are at their most vulnerable is nonsensical and not fit for purpose. We fully support Parkinson’s UK in their call for an overhaul of this system.”