Local campaigns update

Influencing MPs and prospective parliamentary candidates

With the general election on the horizon in July, our campaigners spent time in the spring and summer developing relationships with MPs and candidates. They worked hard to influence the next generation of MPs to understand and prioritise the needs of people with Parkinson's.

For example, our Goole Support Group invited their local MP David Davis to a meeting on World Parkinson's Day, where they urged him to take forward a number of issues to improve life for people with Parkinson's.

In Norwich, Garth, a campaign volunteer, met with local candidates and spoke to them about getting medication on time in hospital. Volunteer Rob also contacted his local candidate in Cheadle to arrange a meeting, as did campaigners in Sheffield, Milton Keynes, North Norfolk, Essex, Selby, Yeovil, Tamworth and Cumbria. 

At our campaigner conference in June we shared our general election resources to support groups, encouraging them to make contact with their local candidates.

Kim Snape, our Senior Local Campaigns Officer, said:

"Local campaigning is incredibly important. It's about speaking up for what's important to our community and pushing for important changes for people with Parkinson's.

"We have staff who can support people across England to campaign on issues that are important to them. We can support you in delivering improvements to health, care and transport services in your area."

Engaging with decision makers

In January, we supported campaign volunteer Terry to host a stall at Barnsley Hospital. The stall highlighted the critical importance of Parkinson's patients getting their medication on time. It aimed to address concerns raised by the local Parkinson's UK support group about incidents of medication delays at the hospital. 

Patients with Parkinson’s are at risk of significant harm if they don’t get their medication on time, every time. Even short delays can worsen symptoms including rigidity, pain and tremors. 

The event was a success, with dozens of health professionals speaking to people with Parkinson's to learn about the impact of not getting their medication on time, and discussing ways to improve their practice.

The stall also helped act as a catalyst for the hospital to form a time critical medication working group. They're now working through our 10 recommendations for hospitals to make sure patients get their medication on time, every time. We'll be meeting with the group shortly to discuss progress. See our 10 recommendations for hospitals on time critical medication.

Campaigners also organised stalls at other hospitals across England to share this important message. For example, Tincy, a nurse who lives with Parkinson's, organised a stall at the Queen Elizabeth Hospital in King's Lynn for World Parkinson's Day in April, while Rob organised a stall at East Cheshire NHS Trust and Chris has organised a stall at Norfolk and Norwich University Hospital.

Successful campaigning to improve services

Thanks to joint working across the charity, with local groups, MPs and our campaigners, East Lancashire Parkinson's services will continue. The area's Parkinson's nurses - who support over 850 people - were at risk of losing their jobs. We'll now be working closely with them to further improve the service.

Local groups in Cumbria also helped to get a Parkinson's nurse in post after several years without one. The groups co-signed a letter to the Chief Executive and Chair of North Cumbria Integrated Care Trust, urging them to recruit a long awaited Parkinson's nurse. This led to a meeting with the Chief Nurse and after several years the post has now been filled. The new Parkinson's nurse started in June.

Our campaigners have also been instrumental in delivering service improvements in Anglia and Plymouth.

Volunteers making their voice heard

In Suffolk, campaigner Fiona wrote to Suffolk County Council about cuts to arts and culture activities and appeared on Channel 4 news to speak about the negative impact this will have on people with Parkinson's.

See Fiona's interview on the Channel 4 website.

Fiona commented:

"As an adult with Parkinson's who has been helped back to independence by the weekly Dance for Parkinson's sessions at Dance East in Ipswich, I felt strongly that the council had not understood how much they were already helping to keep vulnerable people like me safe and well in a very cost-effective way. I was happy to support Dance East by being interviewed for Channel 4 news."

In Norfolk, Chris from Norwich co-signed a letter to Norfolk County Council urging them to make changes to their Blue Badge process. As a result, we delivered a successful awareness session for the council's staff and will be giving them feedback on their Blue Badge communications.

Celebrating success

In June, during Volunteers' Week, over 50 Parkinson's UK campaigners from across the UK attended our annual campaigner conference.

Campaigns volunteers Rob, John, Terry, Richard, Steve and Carole shared their successes to inspire other volunteers. We also premiered our celebration and thank you video, which paid tribute to our campaigners' fantastic work over the last year. 

Watch our celebration and thank you video on YouTube.