Parkinson's UK at the 2022 party conferences

Against the backdrop of a volatile political environment, we attended the Labour and Conservative party conferences to raise awareness of what living with the condition is like. We also wanted to get ministers, MPs and councillors to support our campaigns.

We're now putting pressure on the Government to bring much-needed change to the health and care workforce to improve these services for people with Parkinson’s. And we're also calling for the Government to increase benefits in line with inflation so people with the condition don't lose out.

Raising our profile at the Labour conference

Clive and Gary, who both live with Parkinson’s, met with delegates and MPs at the Labour conference in Liverpool. 

Clive, who was diagnosed with Parkinson’s 3 years ago at the age of 40, said:

"I found the conference an amazing experience. There were so many people, from all walks of life with different agendas, congregating and meeting about all sorts of political topics. 

"All the MPs we met were very supportive of the Parkinson’s UK campaign and recognised some if not all, the issues Gary and I have experienced.  

"Interestingly most of the MPs also could tell us their own experiences of Parkinson’s, either their neighbours or family members.   

"If I were to give anyone else advice I’d say wear comfortable shoes and be prepared to dodge the fast-moving crowds!"

The Parkinson’s UK team met with councillors and 6 MPs, including Sir Stephen Timms who chairs the influential Work and Pensions Parliamentary Committee. In our meeting with him, we focused on the challenges people with Parkinson’s face when applying for benefits including Personal Independence Payments (PPI).

Putting Parkinson’s on the agenda at the Conservative conference

As Conservative party members congregated in Birmingham, the Government was in turmoil over their recent mini-budget. 

Parkinson’s UK volunteers Barrie and Jeff eagerly met with local and national politicians and asked questions at meetings held at the conference. 

They raised the profile and awareness of Parkinson’s. And they highlighted what Governments across the UK need to do to support people affected by the condition to live independently.

This was the first volunteering experience Jeff, 55 and who was diagnosed with Parkinson’s just over 3 years ago, had been involved in. Jeff said:

"The conference was an interesting experience. The fringe meetings along with the MP meetings went pretty much as expected. I have been to lots of similar conferences, although not political.

"It was a challenge to get our message out, with so many organisations fighting for the same attention. And the conference was at a difficult time with the Queen's passing and change of leadership. 

"There are definitely challenges ahead to get buy-in from the Government to inflation-proof benefits, but it was good to see the MPs we talked to recognise the importance of this to support disabled people."

Barrie has previously won a Parkinson’s UK volunteer award. He's lived with Parkinson’s for 17 years. He commented:

"I have never been to a party conference previously so this was an eye-opener. 

"We managed to get support from the MPs we met and we talked to party members about the growing challenges facing the NHS as they try to integrate health and care services and establish the right number of staff to provide the high-quality services our community needs."

Our next steps

Right after the meetings, we shared briefings with MPs. However we intend to follow up to support them in raising our concerns in Parliament.

We’ll also continue to work with other charities to put pressure on the Government to uprate benefits in line with inflation, so people with Parkinson’s don’t lose out.

In November we’ll be launching our latest campaign in England to urge the Health Secretary to share their long-awaited health and care workforce plan. This will help improve access to Parkinson’s services, which we know has been impacted by the pandemic. 

We’ll be asking our campaigners to:

• contact the health secretary with this request
• make contact with their local health system leaders to ensure they’ve got plans in place to educate their workforce about Parkinson’s and make sure they have the right health and care professionals in post, so people with the condition get the support they need.

Make your voice heard

We’re always looking for volunteers to attend events and share their experience with decision makers. If Barrie, Clive, Gary or Jeff’s experience has piqued your interest then get in touch [email protected].

You can also get monthly updates and actions on our campaigns by signing up to be a member of our Campaigns Network, or even become a Campaigns Volunteer.

Finally you can always share your experience of living with Parkinson’s with us. 

Our work is only effective when our community shares their experience and makes their voice heard.