Our priority campaigns
We're demanding a boosted Parkinson’s health and care workforce, and healthcare staff that better understand the condition, including Parkinson’s-related dementia.
Parkinson’s medications need to be given on time, every time, in hospital. Read our latest report and take action to help people get their medication on time.
We're campaigning to stop the benefit cuts recently announced by the UK government and fix Personal Independence Payment.
The impact of our policy and campaigning work
We know public services are failing people with Parkinson’s and we’re determined to improve them. This is why influencing and campaigning is at the heart of the work we do.
While change doesn't happen overnight, we’re proud to work with the Parkinson’s community and health and care professionals to share your experiences with politicians and NHS leaders and demand better.
Read our policy and campaigning impact report to understand how we've influenced improvements to services in 2024.
Our campaigning achievements
Over the last year campaigners across the UK have been busy educating people about living with Parkinson's.
You've encouraged decision makers to support our campaigns to improve care, ensure people get their medication on time in hospital and make local councils improve their Blue Badge processes.
This video highlights some of the things you've been involved in. Thank 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 were 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 is currently considering if they will approve the therapy in Scotland. We have submitted evidence and are hopeful.
After joint campaigning with other charities, NHS England has published data on the rate of Lewy body dementia diagnosis. We've been calling for this welcome step to improve care.
The new data will help NHS staff understand how many people are affected by the condition and better plan their care. But it shows that diagnosis rates for Lewy body dementia need to improve.
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].