Transforming Parkinson's together: 2020-2024

Donald Grosset, Clinical Director of the UK Parkinson's Excellence Network and Steve Ford, Parkinson’s UK Chief Executive, share their thoughts on what the new Parkinson's UK 2020-2024 strategy holds for the Excellence Network in this open letter to the healthcare community.

Dear colleagues, 

As many of you are likely aware, Parkinson’s UK launched its 2020- 2024 strategy in January 2020. This new strategy builds on our previous successes and ensures that people affected by Parkinson's are at the centre of everything we do - people are the 'P' in the middle of the diagram at the end of this page. 

Developing the strategy was a joint effort and we are grateful to have received input from over 600 people affected by Parkinson’s. We also reached out to many of you in the health professional community, to help us analyse our services and research and would like to thank you for your support and valuable contributions.

As you can see in the diagram below, the new strategy focuses on three key areas that matter most to people with Parkinson's, and to us as a charity: 

  • Accelerating breakthroughs in research
  • Better support, every day
  • Getting Parkinson’s understood

Working together over the next 5 years, we want to have the biggest possible impact on improving the lives of people with Parkinson's.

As health and social care professionals working with Parkinson’s, you will play a key role in helping us shape the Better support, every day strand of our work. So, as the Clinical Director of the UK Parkinson’s Excellence Network, and Chief Executive of Parkinson’s UK, we wanted to take the opportunity to write to you at the start of this exciting new journey and share some of our key ambitions in this area.

Parkinson’s changes lives. From the day of diagnosis, people with Parkinson’s and their loved ones need to know we’re by their side. And so by the end of 2024, Parkinson’s UK will provide personalised information, services and opportunities, to many more people affected by the condition, through Parkinson’s Connect, our information and support service.  

People will be able to draw on invaluable support from their peers, and learn more about how exercise and other proven approaches can help them manage their Parkinson’s.

In the new strategy period, we will also focus on strengthening the UK Parkinson’s Excellence Network,  by supporting those of you within the NHS, and using external levers, to continually improve the expert care and support on offer. Crucially, we want to continue developing access to expert multidisciplinary support for everyone. 

A sincere thank you for all that you’ve done to support the Excellence Network thus far. Your collaborative approach, willingness to share best practice and your commitment to service improvement has brought tangible improvements in care for people living with Parkinson’s. The 2019 UK Parkinson’s Audit results, with 90.4% of PREM respondents rating the quality of service they receive as excellent or good, are testament to that, and give us a great platform to build from. 

To set key priorities for the Excellence Network in 2020, we met with the Excellence Network Clinical Leadership Team and Katherine Crawford, Director of Services at Parkinson’s UK earlier this month, and agreed on:

  • Driving service improvement through the 2019 UK Audit - We will use the audit results to nurture a collaborative approach to service improvement. We’ve invited all participating services to sign up to service improvement projects in two key areas: improving bone health, and supporting therapists to build their knowledge and skills in Parkinson’s. We want to encourage individual service innovation too - you know your services best and can identify the areas to improve through your Service Improvement Plan. Log in now to access your Individual Service Report.
  • Delivering a clinical led, evidence based consensus statement on MDTs.
  • Providing a definitive statement on the value and impact of Parkinson’s Nurses - using key findings from the Understanding the Scope of Parkinson's Nurse Specialists (USP) research study, led by Professor Annette Hand and colleagues at Northumbria University, Newcastle and funded by Parkinson’s UK.
  • Using the momentum from Parkinson’s UK’s 2019 Get It On Time campaign to further enhance this work across all areas of the NHS.
  • Building and delivering an even stronger partnership between the Excellence Network’s Exercise Hub and the charity - together, we can deliver a plan that opens up exercise opportunities to all. 
  • Supporting and nurturing the Excellence Network regional teams, working groups and hubs, and our communication channels. We know we have more work to do to make these powerful associations as effective and as easy to use as possible. 

We’re working in a challenging landscape - we all know that. Championing and supporting a workforce for Parkinson’s is key to our success, and we’re determined that the UK Parkinson’s Excellence Network does just that. By doing this, we’ll improve the quality of life for everyone affected by Parkinson’s. 

We kick off the 2020 strategy with renewed energy and purpose. With your support, we’ve built a Network to be proud of. We want to use this now to continue to improve the quality of Parkinson’s services, taking them to the next level. We hope you’ll join us. 

If you have any questions about the 2020-24 strategy or the work outlined above, please don't hesitate to contact us via [email protected].

Looking forward to the joint work to come,
Donald Grossett, Clinical Director of the UK Parkinson's Excellence Network
Steve Ford, Chief Executive, Parkinson’s UK


Transforming Parkinson's - together

Our new strategy focuses on the areas that matter the most to people with Parkinson's:

  • Accelerating breakthroughs in research
  • Better support, every day
  • Getting Parkinson’s understood