The first ever inquiry into NHS continuing care has uncovered huge failings in a system which leaves people with Parkinson's no choice but to pick up the cost of care they can't survive without.
People in the advanced stages of Parkinson's are being put through hell by trying to access financial support they need, in a system so complex even health professionals struggle to understand it.
Our new report into NHS continuing care – a funding package to provide free health care for people with severe health needs – marks the launch of our new Failing to Care campaign.
We're urging the Government to overhaul a system that is not fit for purpose.
The inquiry - by the All-Party Parliamentary Group on Parkinson's - found that 59% of NHS continuing care assessments don't involve a professional with specialist expertise or knowledge in the applicant's condition. This leads to inaccurate and incorrect decisions on funding.
And 40% of people going through the assessment process reported a lack of empathy and transparency from professionals.
Continuing care system is a disgrace
Our chief executive Steve Ford, comments:
"It's 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. It's a tragic NHS failing.
"People in the advanced stages of Parkinson's are being put through hell by trying to access financial support they need, in a system so complex even health professionals struggle to understand it.
"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."
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.
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.
"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 process took so long he died before we 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.
"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. We kept reapplying for funding but eventually, over 12 months later and with no funding having been given, my dad died."
Get involved in our Failing to Care campaign
You can help by putting pressure on the Government to change NHS continuing care. As part of our ongoing campaign we will keep you posted on actions you can take.
- See our Failing to Care campaign for details of the latest action.
- Sign up to our Campaigns Network to receive email updates on ways to get involved.
Take a look at our Failing to Care report on NHS continuing care: