Support ‘road map to dignity’ to help those with Parkinson’s, ministers urge

1 May 2025, 21:52

Ministers have been urged to support a “road map to dignity” to help people affected by Parkinson’s disease.

Campaigners have developed the "Parky Charter" describing the five things that people with Parkinson's "need from the Government but are not getting".

This includes ensuring people referred for a possible Parkinson's diagnosis see a consultant within 18 weeks and have annual reviews thereafter, access to instant information, a "Parkinson's passport" to help communicate a patient's needs, comprehensive care and work to find a cure.

A petition on the Parliament website asking the Government to "take the decisive five steps" in the charter has received almost 26,000 signatures.

Labour MP Graeme Downie (Dunfermline and Dollar) told a House of Commons debate: "Parkinson's is the fastest-growing neurological condition in the world, ironically mainly due to people living longer lives and being diagnosed in their later years.

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"It is sometimes said that people do not die from Parkinson's but the condition is life-limiting, complex and relentless.

"It does not discriminate by postcode, profession, political affiliation or any other characteristic. It strips away not only physical ability but voice, independence and identity and it affects not only those diagnosed but their loved ones in profound and lasting ways.

"There is no cure, no treatment to slow or halt progress and no respite, yet there is hope. There is a path to change, and today I call on the Government and this House to walk that path with the urgency and compassion that the Parkinson's community deserves."

He described the charter, developed by the Movers and Shakers group, as a "bold five-point plan" which is backed by the three major Parkinson's charities in the UK.

Mr Downie added: "This is not a wish list, this is a road map to dignity."

Speaking for the Conservatives, Gregory Stafford (Farnham and Bordon) said: "The House is united, I think, in wanting to improve treatment, support and outcomes for people with Parkinson's.

"We hope the Government will listen carefully to today's contributions and respond with clear commitments that includes action on workforce, waiting times, integration, support for carers and access to research and innovation.

"Parkinson's is a relentless condition that robs individuals of independence and dignity but with research investment, compassionate care and community support, we can fight back."

Health minister Ashley Dalton said: "Our Parkinson's nurses are worth their weight in gold. Neurology is particularly challenging, and we do need more neurologists and specialist nurses.

"Nationally, there are initiatives supporting service improvement and better care for Parkinson's patients. NHS England's Getting It Right First Time neurology programme supports improvements to Parkinson's care by promoting data-driven approaches, sharing best practices and fair access to services.

"It focuses on improving patient experiences, shining a spotlight on disparities in care and calling for well-integrated processes."

Ms Dalton concluded: "I began by talking about Parkinson's Awareness Month, and one strange thing that has struck me hearing from so many people who have shared their stories, and the stories that have been shared in this debate today, was the number of them that felt uncomfortable sharing their status, sometimes even with their close friends and family.

"This past month has been about smashing the stigma, and I know that this debate will play its part in that too."