Inquiry Reveals Appalling Gaps In Care For Parkinson's

Main Category: Parkinson's Disease
Article Date: 10 Jul 2009 - 1:00 PDT

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The All Party Parliamentary Group (APPG) for Parkinson's Disease has released a shocking new report that documents severe inequalities in access to Parkinson's services in the UK.

More than 350 people with Parkinson's and health and social care organisations gave evidence to the Inquiry. They reported problems such as limited information for patients, lack of respite for carers, and poor access to expert nursing and therapy, all underpinned by a failure to deliver a 'joined up' approach to care.

Jim Henry (66), lives with Parkinson's and said: "I had to wait six months to see a specialist for my initial diagnosis, but received no information about Parkinson's at that or any subsequent appointment. At once stage, my neurologist went on sick leave for more than a year, with no notification or replacement service. The impact on me was one of uncertainty. I was left not knowing whether I needed more or different medication, and the only information I got was from the Parkinson's Disease Society. From what I can see, the resources for Parkinson's are dismal."

The report, Please mind the gap: Parkinson's disease services today shows that NICE guidelines on Parkinson's disease are not being followed. This is despite potential savings of nearly 3million for the NHS. These savings would come from a reduction in avoidable NHS treatment for people with Parkinson's.

The key recommendations in the report to the UK Government and the devolved administrations in Wales include:

- Strong national and local leadership with an authority on Parkinson's within Governments.

- Effective monitoring of Parkinson's services to ensure they meet national guidelines and standards.

- A review of the health and social care workforce to guarantee that enough skilled staff are in place to provide the services people need.

To ensure the APPG report recommendations are carried out, the Parkinson's Disease Society has launched a new campaign, Fair Care for Parkinson's. The campaign will support the 120,000 people in the UK living with Parkinson's and the thousands involved in their care and support.

Steve Ford, Chief Executive of the Parkinson's Disease Society said: "The report uncovers just how bad services are for so many people with Parkinson's. This needs to change. We want to see effective monitoring of Parkinson's services to ensure they meet national guidelines and standards, an urgent review of the health and social care workforce, and stronger national and local leadership by government. Why is it that some conditions have these, for example a 'Tsar' within Government, and other conditions like Parkinson's don't?

"We are passionate about making sure that people with Parkinson's get the best possible care and support to help them manage their symptoms and get on with their lives. So join us and sign up to our Fair Care for Parkinson's campaign to help make sure that people living with Parkinson's get the services they need, wherever they live in the UK.

" Baroness Gale, Chair of APPG for Parkinson's Disease said: "My father lived with Parkinson's, so I know first hand the negative impact the condition can have on someone's quality of life, especially without the expert support they require.

"We hope that the APPG Inquiry report released today will provide the boost to the UK Government and the devolved administrations in Wales and Northern Ireland to reprioritise Parkinson's, and to deliver against the report's recommendations."

Source
The Parkinson's Disease Society