14/11/2016 06:42 GMT | Updated 15/11/2017 05:12 GMT

Continuing To Care?

As an organisation we exist to make life better for every one of the 127,000 people living with Parkinson's in the UK. By listening to and understanding their needs and experiences we can better support and empower people with Parkinson's to feel more in control. We do this by offering information and support and funding research to find better treatments and ultimately a cure. But it also means that we speak out and campaign for change to improve systems that aren't working well.

As Desmond Tutu said "there comes a point where we need to stop just pulling people out of the river. We need to go upstream and find out why they're falling in."

In line with this ambition, today Parkinson's UK, as part of the Continuing Healthcare Alliance, is shining a light on a system that is fundamentally flawed and failing the most vulnerable in society, and we're making an urgent case for change.

NHS continuing healthcare (NHS CHC) is free healthcare provided outside of hospital by the NHS, which aims to enable people to go on living as full and independent a life as possible. Everyone who applies is likely to have significant health and social care needs, yet many are found ineligible to receive this support.

But new research into NSH CHC that we've released today reveals a system which is complicated, confusing and intimidating for those who desperately rely on it. We spoke to people across England about their experiences, and found a worrying pattern of people struggling to receive much needed help. People like Angela, who had to battle for years to get the support her parents, who both had Parkinson's, needed, and finding time and again that assessors simply didn't understand their condition. And Graham, who cares for his wife, who has advanced Parkinson's and dementia. She can't stand up or walk and has a tremor which makes her whole body shake, but still has to go through pointless annual reviews despite the fact that she will never get better.

Their experiences are reinforced by the views of health and social care professionals, which you can read more about in a report on our findings. Well over a third (39%) of professionals we surveyed felt the assessment process was difficult or very difficult to navigate. On top of this an overwhelming 80% of healthcare professionals also felt the Decision Support Tool (DST), used to help decide whether someone should receive NHS continuing healthcare, was either not fit for purpose or there was room for improvement.

With significant cuts to social care and access to welfare benefits being restricted, some of the most vulnerable people in our society are seeing too many avenues of support being stripped away. This makes the failures of the NHS CHC system even more harrowing.

The Continuing Healthcare Alliance, which Parkinson's UK chairs, is calling for NHS England, Clinical Commissioning Groups and the Department of Health to urgently address the numerous shortcomings of the system and ensure that people in the greatest need are not abandoned.

We will continue to campaign to ensure that no-one is left without the care they so desperately need.

You can support the Continuing Healthcare Alliance campaign by sharing the Continuing to Care? report with your MP and local clinical commissioning group. Just visit