Campaigning for change

Following our work, the NHS in England, Northern Ireland and Wales have agreed to fund a new treatment foslevodopa-foscarbidopa (also called Produodopa) for people who experience movement related symptoms.

We shared testimonies from people with Parkinson's and care partners who were involved in a clinical trial about the therapy with NICE, who assesses whether treatments and technologies are clinically and cost effective for use in the NHS. 

We also nominated a person with Parkinson's and their care partner to present evidence to the committee, making the decision about the treatment. They shared their experience of the therapy, which had been life-changing.

The Scottish Medicines Consortium is 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.