What our campaigning community achieved in 2023

Right across the UK campaigners have shared their experience of living with Parkinson’s with decision makers, government departments and the NHS to improve the services they receive. 

In 2023 more people with Parkinson’s and care partners were involved in our policy and campaigning work. And together we delivered some fantastic improvements for the Parkinson’s community.   

Health and social care

We put pressure on the Health Secretary to publish the NHS workforce plan, which he did in June. While the plan delivered on some of our key asks for the Parkinson’s community, we still have concerns about how it will address the gaps in provision of healthcare professionals for people with Parkinson’s across England.

Locally we were successful in our campaigns to grow the Parkinson’s workforce with: 

• 2 additional nurse posts in Leicester

• a new Parkinson’s nurse in the north Powys area and 

• an increase in services in Nottingham including a physiotherapy suite and more professionals added to the multidisciplinary team.

And 1,000 of you supported our joint call for more training for health care professionals on Parkinson’s-related dementia.

Getting medication on time

We relaunched our Get It On Time campaign, to get people with Parkinson’s their time critical medication on time in hospital, with a joint statement with other charities and professional organisations. See how you can get involved with Get It On Time in 2024. 

We held a briefing in Parliament to urge English MPs to take action and also met with NHS England Medical Director Professor Sir Stephen Powis, who vowed to support this work.

And campaigners in Scotland wrote to the Cabinet Secretary for Health to call for action on medication management in Scottish hospitals.

Locally work continues with hospitals to improve their time critical medication policies and practice. We’ve had success in Leicester, Barnsley and Hertfordshire. And we’ll keep this work going with campaigners next year.

New treatments approved

We were also delighted that our work to convince NICE to approve a new treatment for Parkinson’s paid off. Produodopa will be available on the NHS later in 2024 for people who experience movement related symptoms in England, Northern Ireland and Wales. Read more about Produodopa and how you can access it if it’s right for you.

And in Wales another treatment Lecigon was approved for restricted use for people with Parkinson’s, when other oral medications have failed.

Support for carers

In Northern Ireland we outlined the impact of budget cuts on those living with long-term conditions and the needs of carers to the Permanent Secretary  of the Department of Health.

We forced ministers in Scotland to pause the National Care Service legislation, as we felt there needed to be greater detail about their plans to support carers.

Prescription charge success

We also worked in partnership with other charities and were successful in getting the government to scrap their plans to make people over 60 pay for their medication for another 6 years.

Making our voices heard

Throughout the year members of the Parkinson’s community shared their experience of living with the condition with decision makers, civil servants across government and the NHS. 

In March almost a dozen people with Parkinson’s and carers urged MPs to celebrate World Parkinson’s Day, with a briefing in Parliament.

And throughout the year campaigners shared their experience of accessing health and care services, employment support and benefits with Ministers and MPs. 

With a general election looming it’s more important than ever that the voice of the Parkinson’s community is heard by decision makers. 

If you’d like to share your story or work with us to put Parkinson’s on the agenda this year please get in touch.

Cost of living, benefits, employment and transport campaigning

It’s been an expensive year with costs rising. While there has been some government support, our report at the start of the year showed that people with Parkinson’s were struggling to heat their homes and stay well. Read the full report.

That’s why we called for boosted support for people with the condition and hundreds of you didn’t disappoint, as you urged your MP to ask for more support from the chancellor.

In 2023 we recognised the 10 year anniversary of Personal Independence Payment (PIP). And we highlighted how the system still doesn’t meet the needs of people with Parkinson’s. 

In fact our own analysis of DWP data found that the rate at which people with Parkinson’s have an initial negative decision on their PIP overturned at first appeal (known as Mandatory Reconsideration), is, on average, 10% higher than all other Mandatory Reconsiderations. 

We raised this with the Minister for Disabled People and worked with other charities to jointly brief MPs at an APPG meeting with the MS Society and Crohn’s & Colitis.

We also shared our concerns about the government’s plans to reform the Work Capability Assessment and employment support, which were announced as part of the chancellor's Autumn Statement. Read more about the plans to reform the Work Capability Assessment, getting support and our campaign opposing the plans.

Campaigners also demonstrated the issues they face when applying for and renewing Blue Badges. We managed to address issues in Norfolk, Lancashire and York and we also met with Transport Scotland and Edinburgh City Council to explore how they could improve the process for people with the condition.