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.
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 boost financial support for people living with the condition. Whether that's cost of living support payments or the benefits people with the condition may receive.
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
The Scottish Medicines Consortium are 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].