What we achieved in 2023, together

From marching in London Pride to running marathons. From donating to research to donating your time. You continued to blow us away with your incredible dedication to changing the lives of the Parkinson’s community.

A community of support

Our helpline and local adviser service was as busy as ever, providing expert advice and support to over 19,000 people, making over 11,000 home visits. 

Our Benefits and Employment team supported people with Parkinson’s, family, friends and carers to identify an astonishing £1.9m in benefits and financial support that they were entitled to claim.

And because being physically active regularly can help manage Parkinson’s symptoms, we funded over 100 projects and teamed up with more physical activity providers than ever before to help you get and stay active.

Tackling loneliness

We teamed up with Re-engage to trial a telephone befriending for people with Parkinson’s and their carers called call companions. Over 360 calls were made, or roughly 1 a day. That’s about 22,000 minutes less loneliness! The service is now available across the UK. Find out more about call companions. 

Shaping Parkinson’s information and support

We’re always improving our information and support, and we can’t do this without you. Thinking and memory changes and dementia are important but challenging topics for people diagnosed with Parkinson's, their friends and family, and even health professionals. 

So we collaborated with people with Parkinson’s and University College London (UCL) to develop 2 new booklets about Parkinson’s dementia. They include information about how to have better conversations with healthcare professionals, what can slow down the progression of these symptoms, and practical tips and advice on how to manage them day-to-day. Download or order the thinking and memory changes leaflet.

Our Speak Up, Speak Out programme, which is shaped by and supports people with Parkinson’s in Northern Ireland with speech issues, won a Giving Voice award from the Royal College of Speech and Language Therapists.

And throughout 2023, we’ve worked with over 500 people from the Parkinson’s community to make sure your experiences shape what we do.

In the summer, 2,600 members completed a survey to let us know how the cost of living crisis has impacted them. We’ve used the responses to put together a report which will recommend how the government can better support people with Parkinson’s and their loved ones. 

Investing in the most promising research

We started recruiting for the second phase of a study into whether CBD can treat hallucinations following a successful first phase in 2019. And research led by Neurolixis, co-funded by us, announced positive results from research into a drug called NLX-112. The research could mean a valuable drug to treat dyskinesia, and potentially other motor symptoms, by 2030.

Our research is nothing without you

In 2023, thanks to your generosity, we’ve invested over £1.8m in new Parkinson’s research projects. This included Maria-Grazia Spillantini’s research into how and when alpha-synuclein forms in the gut. Following our May appeal, you gave more than £144,000 to this exciting project. 

Our Research Support Network is the main way we stay in touch with people who are interested in research. It grew by almost 2,000 people! That means there are more than 8,700 people connected with, and getting involved in, Parkinson’s research, from keeping up to date with the latest research news to taking part in clinical trials.

Parkinson’s research should involve and represent all members of the community which is why, in 2021, we launched our Race Equality in Research project, to engage Black, Asian and Mixed Race backgrounds in research. In 2023, we ran 2 Race Equality in Research events, one for Black African and Caribbean communities in Brixton and another for the South Asian communities in Bradford. 

And back in 2021, we ran a focus group on the impact of a potential new treatment, Foslevodopa-foscarbidopa (also called Produodopa), for people with Parkinson’s and their loved ones. In 2023, the treatment was approved by NICE (The National Institute for Health and Care Excellence) for use in England, Northern Ireland and Wales. 

This is the first new treatment for Parkinson’s that’s been approved by NICE in years and it can be life-changing for people with severe movement-related symptoms. We also want the treatment to be available in Scotland, so in 2024 this year we'll be working with AbbVie and the Scottish Medicines Consortium to make sure that everyone with Parkinson's can benefit from it.

Improving health and care services

Whether you live with Parkinson’s, or love and care for someone who does, you need access to the best health and care services possible.

In 2023, 38,000 professionals have taken part in Parkinson's education courses so that they can give the best care and support possible. These range from bite-sized to in-depth programmes on Parkinson’s for all levels of experience across a range of disciplines. 

We presented the 2022 UK Parkinson’s Audit results. This recognised quality improvement tool for Parkinson’s services showed a significant improvement in bone health assessments and identified focus areas for change across all services. 

And we celebrated the incredible health and care professionals who make a difference for people with Parkinson's at the Parkinson's Excellence Network Awards.

Campaigning for better health and care services

Local campaigners improved training and management of time-critical Parkinson’s medication in Leicester. And we managed to get new physiotherapy services at hospitals for people with Parkinson’s in Nottingham and Hertfordshire. 

In Lancashire and York, the councils have committed to making applications and renewals for Blue Badges easier for people living with Parkinson’s. And we worked with our Barnsley and District branch who bravely shared their experiences around receiving time-critical medication in hospital. The local NHS trust has now signed up to our Time Critical Medication pledge. 

And in Scotland, we put together a fact sheet of advice on getting people with Parkinson’s their medication on time when they’re being transported to hospital. It is now available to every ambulance team in Scotland and shared through the Scottish Ambulance Service’s internal channels.

It’s all powered by you

Together, we achieved so much in 2023. And we have so much to look forward to this year. It’s all powered by you. Thank you for all you do with us.