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