People with Parkinson's die while waiting for NHS care funding

A new report has revealed that people with Parkinson's are dying while endlessly waiting for their local NHS to decide whether they're eligible for NHS continuing care funding - a funding package to provide free health care for people with severe health needs.

The first ever Inquiry into NHS continuing care, conducted by Parkinson's UK and the All Party Parliamentary Group on Parkinson's, uncovered huge failings in a system which is shrouded in mystery and disarray.

Thousands of vulnerable and sick people are being left with no choice but to pick up the cost of specialised care they cannot survive without - with those living with long-term, degenerative conditions such as Parkinson's particularly at risk.

The 'Failing to Care' report showed that 59 per cent of assessments didn't involve a professional with specialist expertise or knowledge in the applicant's condition - leading to inaccurate and incorrect decisions on funding.

40 per cent of people going through the assessment process reported a lack of empathy and transparency from professionals, when applying for NHS continuing care or appealing against a decision.

Steve Ford, Chief Executive of Parkinson's UK said: "It's a disgrace that people with Parkinson's are dying while waiting for the NHS continuing care funding they're entitled to. Putting vulnerable people and their families through this kind of distress - and in a position where they may have to sell their own homes to pay for care - is a tragic NHS failing.

"People in the advanced stages of a progressive condition like Parkinson's are being put through hell by trying to access financial support they desperately need, in a system so complex even heath professionals struggle to understand it."

David Goff, 40, went through a battle to receive the NHS continuing care funding when his father Leslie was admitted into a rehabilitation hospital with the advanced stages of Parkinson's.

"My Dad was so ill that initially it all seemed clear cut and all the health professionals said they felt he would be eligible for NHS continuing care, but the whole process took so long he died before we ever received a penny. For several months the panel kept deferring a decision saying they needed more evidence, and he was made to stay in the hospital so we could prove that his needs were severe enough to receive the funding. All the while, his medication regime was being disrupted and altered. He was trapped there, his health was getting steadily worse and we were in this catch-22 situation where we just felt helpless.

"The decision was deferred several times until a senior nurse quizzed my Mum on her savings and told her we had to pay for my Dad's care - even though NHS continuing care shouldn't be means tested. They discharged him and we had to start paying for a care home. All the while we kept reapplying for funding and eventually, over twelve months later and with no funding having been given, my Dad died."

David wrote to his local NHS once more after the death and was eventually back-paid NHS continuing care for the final 12 weeks of his father's life.

The 'Failing to Care' report found that despite living with a condition that can only get worse over time, the report found almost a quarter (24 per cent) of people with Parkinson's were continually reassessed for NHS continuing care, causing repeated stress and anxiety.

In addition, the NHS continuing care system is so complex that without exception, every health and social care professional who took part in the inquiry admitted they had difficulty following the correct process.

As an ex- Parkinson's Nurse Karen Guy, 55, saw the flaws in the system first-hand when she helped people with Parkinson's apply for NHS continuing care.

"The process can feel adversarial and some families feel daunted and even intimidated as though they have to justify how extreme their loved one's care needs are. Even if someone receives the funding there's no guarantee they will keep getting it as it is reviewed every year.

"This is often a very painful time for patients and their family and so frustrating for us as health professionals as it can be such a long, complex process which can cause delays in funding. On top of that, many professionals don't have the time, skills or training to correctly fill in applications."

Steve Ford urged: "The Government must act now to overhaul this pitiful system, ensuring that a simplified NHS continuing care process supports those who need it most and that organisations are held to account when things go wrong."