What matters most: the survey results

11 August 2016

Earlier this year you told us what matters most to you and the issues we should prioritise in an online survey.

I was overwhelmed by the response to this survey.

Laura Cockram, Policy and Campaigns Programme Manager

Over 1,000 people across the UK shared their views. Here's what you said we should be campaigning on:

•  improving financial support and benefits for people with Parkinson's

•  improving access and the quality of health and care services across the whole of the UK

•  the development of new and better treatments and ensuring the funding to deliver these is adequate

Financial support and benefits

People affected by Parkinson's told us they want us to "ensure that the benefits system is fair for people with Parkinson's."

We will:

•  campaign to improve the benefits system so that it works better for people with Parkinson's and also defend support such as Attendance Allowance from cuts. We will also campaign for free prescriptions in England

Access and the quality of care

Those affected by Parkinson's stated they want "good care available locally. Not a postcode lottery." And "availability of therapies e.g. physiotherapy to make life bearable."

We will:

•  improve access and the quality of health and care services across the whole of the UK including improving access to therapies and respite care and eligibility for NHS Continuing Care

•  grow and empower local campaigners to increase the amount of specialist staff so that everyone has the same access to support regardless of where they live.

Development of new and better treatments

People living with Parkinson's told us they want "a cure to give us hope for our future."

We will:

•  campaign to protect research funding 

•  ensure there is investment and support for our work around drug repurposing

Public awareness

However the biggest majority of respondents in the survey stated improved public awareness of the condition would help them. "Awareness – particularly relating to non-motor symptoms."

Therefore we'll be working across the charity to ensure we improve awareness of the condition.

We will:

•  raise awareness with decision makers in Parliament, local government and health and social care professionals about the full range of Parkinson's symptoms

•  continue to improve understanding in hospitals and care homes about people with Parkinson's getting their medication on time

•  encourage local councils, retailers and providers of public services to deliver our Parkinson’s awareness sessions.

We can't do this on our own

Laura Cockram, Policy and Campaigns Programme Manager said:

"I was overwhelmed by the response to this survey. People affected by the condition have shared their views and now we'll be using this to direct the campaigns we will deliver to the end of 2019.

"We can’t do this on our own so would welcome anyone who wants to get involved and join our network of campaigners to improve health and care services across the UK."

To get involved in campaigning to deliver changes for people affected by the condition please visit our campaign pages.

http://www.parkinsons.org.uk/news/11-august-2016/what-matters-most-survey-results