Campaigning for change

Over 8,000 supporters help our campaigns to make change happen. Together, we're fighting for better support for the Parkinson's community.

Achievements of Parkinson's UK campaigners in 2023-24

Our campaigning achievements

Over the last year campaigners across the UK have been busy educating people about living with the condition. 

You've also encouraged decision makers to support our campaigns to improve care and ensure people get their medication on time in hospital. 

This video highlights some of the things you've been involved in and also thanks you for your support.

Want to get involved?

Great! We need people to fight for the community now more than ever. There are loads of ways to be part of this movement and all your help is valuable.

Parliament, policies and partnerships

Parkinson’s in Parliament 

We work with elected representatives across the UK on a cross-party basis, to make sure that the voices of people with Parkinson’s are heard across all levels of government. Find out more about Parkinson's UK in Parliament.

What we think

We influence public policy to benefit people with Parkinson's and carers. Read our policy statements and get involved in our Policy Panel

Who we work with

We work with other charities, Royal Colleges, professional bodies and thinktanks in our campaigning work.

We are also members of various alliances and coalitions that bring charities together to improve health, care and benefit services for disabled people and those living with long-term conditions like Parkinson’s.

Find out more about the coalitions and alliances that we are members of:

Our campaigning successes

Following our work, the NHS in England, Northern Ireland and Wales have agreed to fund a new treatment foslevodopa-foscarbidopa (also called Produodopa) for people who experience movement related symptoms.
We shared testimonies from people with Parkinson's and care partners who had been involved in a clinical trial about the therapy with NICE - who assesses whether treatments and technologies are clinically and cost effective for use in the NHS. 
We also nominated a person with Parkinson's and their care partner to present evidence to the committee, making the decision about the treatment. They shared their experience of the therapy, which had been life-changing.

The Scottish Medicines Consortium are currently considering if they will approve the therapy in Scotland. We have submitted evidence and are hopeful.   

Working with other charities in the sector we were successful in getting the government to uprate benefits in line with inflation. Due to government spending, it was feared they would uprate them in line with average earnings, which could see someone lose out on hundreds of pounds per year.

From April 2023 benefits like Universal Credit, Personal Independence Payments, and pensions will be uprated by 10.1%, meaning millions of people will receive more money, to help them survive the cost of living crisis.

We joined with other neurological charities to call on the NHS England Medical Director, Professor Steven Powis to put in place a national clinical director to strengthen clinical leadership for neurology across the NHS.

Our joint charity letter and influencing behind the scenes was successful, as 2 clinical directors have been appointed for the NHS in England: one for neurology and one for neurosurgery.

Following our support, the NHS in Scotland and Wales agreed to fund opicapone, a COMT inhibitor that helps levodopa medication to work more effectively.

We shared testimonies from people with Parkinson's who had used the medication, and this helped the Scottish Medicines Consortium and the All Wales Medicines Strategy Group to approve the drug for use on the NHS.

Using the experiences people with Parkinson's shared with us on our forum and social media, we targeted pharmaceutical companies which needed to improve their packaging, so that people could access their medicine. 

We also contacted the medicines regulator to raise our concerns and it wrote to the pharma companies urging them to make changes to their packaging.

2 companies have made changes to their packaging, so it's easier for people with the condition to access their medicines.

Get in touch

We're here to answer any questions and give you any support around campaigning. Email the Campaigns team at [email protected].