Campaigning for change

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 where their packaging needed to be improved, so they could access their medicines.

We also contacted the medicines regulator to raise our concerns and they 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.