Your voice in Parliament: the Parky Charter debate

The Parky Charter, a five point charter which calls for improved care for people with Parkinson's, was debated in Parliament on Monday (17 November). 

This comes after months of Parkinson’s UK volunteers campaigning across the country and securing over 113,000 signatures on the Movers and Shakers parliamentary petition.

Read more about the Parky Charter and its five point national plan.

Campaigners call for action

Many of our groups across the UK collected thousands of signatures at street stalls, local group meetings and on social media.

Bexhill campaigner Linda, whose group generated the most signatures and who attended the debate, said: 

"Since being diagnosed with Parkinson’s at 48, I have met some amazing people living with this condition. Their resilience, determination and positivity never fail to inspire me to campaign harder and raise awareness of the relentless difficulties we face every day. 

"Being present at the debate was very emotional to see every seat taken by MPs across all parties and the public gallery requiring additional seating! 

"The support in Westminster Hall for us all was overwhelming and what better way to set us up for the next part of this journey together."

Linda and her fellow campaigners Viv and Helen were mentioned by their MP, Dr Kieran Mullan, for their tireless work.

They weren’t the only ones. Many MPs commended their local Parkinson’s groups, campaigners like Liz and Chris Ryan for their work hosting the Big Sing in Huddersfield and securing new specialist posts in their area, and other constituents who deliver exercise classes and support groups across the UK. 

We were delighted that over 1,500 of our supporters contacted over 500 MPs urging them to attend the debate. And our public affairs team sent hundreds of briefings to MPs with our new prevalence data and local information about how long people are waiting and the cost of hospital admissions for people with Parkinson’s. Many MPs used this information and stats in their speeches.

MPs share constituents’ experiences

Paul Davies MP, who introduced the debate, said:

"We’re not just debating the Parky Charter, we’re shaping the future of how we care, support, and empower. This is more than policy; it’s a commitment to dignity, progress, and making every voice count."

40 MPs from across the UK spoke in the debate including members of the All-Party Parliamentary Group (APPG) on Parkinson’s, with most of them praising our services and support. 

They raised concerns that their constituents had shared with them, including:

• long waits for a Parkinson’s diagnosis, with some people paying for a private diagnosis and then waiting years for a follow up appointment
• the need for more Parkinson’s specialists, with many MPs arguing this should be part of the government’s forthcoming 10 Year Workforce Plan
• the need for information and financial support at diagnosis. Some MPs even shared how their constituents were benefitting from Parkinson’s Connect - our pioneering programme to provide support and advice to people with Parkinson’s, and their families, from the point of diagnosis.
• having access to therapies and technology to help people with the condition control their symptoms
• funding for research into better treatments and a cure, and greater support for government agencies to speedily authorise new technologies and treatment
• delays in people getting their medication on time in hospital
• better social care support and assistance for care partners.

You can read this transcript of the debate, or watch it on YouTube.

We’re proud to say we’re already campaigning on workforce shortages through our Can’t Wait campaign and Nurse Appeal. 

Our time critical medications programme and Get It On Time campaign were mentioned by the health minister and we’re delighted that they’re already making a difference across the country too. 

At the end of the 1.5 hour debate, the Government Minister Ashley Dalton responded by saying the government will publish a new 10 Year Workforce Plan to make sure the NHS has the right workforce with the right skills to meet the needs of the Parkinson’s community. 

They’ll introduce ‘Diagnosis Connect’ (inspired by our own Parkinson’s Connect). This will provide better information and support to help newly diagnosed people, expand access to digital health tools to help people better manage their symptoms, provide support for people with the condition to stay in work and for those who can no longer work, and commit more funding to Parkinson’s research.

Juliet Tizzard, Director of External Relations said: 

"Hats off to the Movers and Shakers and all the campaigners who did such an incredible job securing signatures on the petition and encouraging MPs to attend what was one of the best attended debates of this kind. It was great to see so many MPs from across the house share the many concerns of their constituents living with Parkinson’s and speak so passionately about the need for more support.

"The range of issues facing people with Parkinson’s that were highlighted in the debate, underlined by our latest research showing that up to 21,000 are stuck on a backlog waiting for a diagnosis, show how urgent it is that the government takes action. People with Parkinson’s need better health services, better benefits and serious investment in research to find better treatments and a cure."

Next steps

We’ll be thanking volunteers who wrote to their MPs to get them to attend the debate, following up with MPs who spoke in the debate and also staying close with the Department of Health and Social Care to make sure improvements happen. 

We’ll keep supporters updated with our progress. It was amazing to hear how many of our community inspired their MPs to take part in this debate and speak up for our community. A huge thank you to all of you!