Challenges and priorities for the PSP and CBD community: Insights from Mark Jackson
UK charity PSPA has recruited its first director of policy and influencing to help grow its campaigning and influencing work.
Mark Jackson joined the charity in March 2024, introducing this new function to raise awareness and help tackle some of the challenges people living with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) face.
Progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are two rare neuro-degenerative diseases.
Here Mark shares his thoughts on the challenges the PSP & CBD community has highlighted in PSPA’s 2022 survey and at support groups meetings, and the difference he hopes to make:
“I’m just few months into my role at PSPA but already I’m struck by how much impact a small charity has. PSPA is small but it is certainly agile. It is also very close to the people it exists to support and that is very important to me.
“Even though there hasn’t been a dedicated policy and campaigning function, it’s incredible to hear about so many PSPA volunteers raising awareness among GPs and opticians, and for being so involved in our awareness campaigns. I hope to build on this great work. Already I can see so much opportunity for us all to unite around campaigns that will have lasting impact on people living with PSP & CBD.
“To drive forward research, to improve diagnosis, to ensure people have access to the latest treatments and to make the incurable curable, we need to campaign. When campaigns are successful it has a huge impact on people’s lives.”
“Going forward our policy and influencing priorities will include raising awareness of PSP & CBD among health and social care professionals, as well as MPs, and policymakers. In addition, we aim to address challenges people experience around continuity of care and support, gaps in access to services like Continuing Healthcare, as well as improving support for carers.
“To make a start, on 3 June we launched our 2024 awareness campaign called #WeCare. This campaign asked people to contact their parliamentary candidates ahead of the General Election about the vital role of unpaid carers and asking for them to support calls to provide a better deal if they are elected.
“So far, the #WeCare campaign has had an excellent response. More than 247 people have downloaded our template emails, 63 people have downloaded our press release and a further 40 people have used our social media graphics to reach out to their parliamentary candidates and community to ask for support.
“I aim to build on this response, not only with elected MPs but our supporters too, to drive change in both care and research funding. As such, I want to be accessible to people and would welcome anyone from our PSP & CBD community to get in touch to say hello or share a problem they are facing. It will take collaboration to achieve our goals, but with the determination and dedication I’ve already seen from the PSP & CBD community, I know we will get there.”
Anyone who would like to share with Mark their experiences of PSP & CBD can do so by emailingcommunications@pspassociation.org.uk
More information about the #WeCare campaign can be found on the PSPA website:PSPA Association | Awareness week 2024
About PSP and CBD
Progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are two rare neuro-degenerative diseases.
They are caused by the loss of neurons in certain parts of the brain. Over time, this leads to difficulties with balance, mobility, speech, vision, swallowing and cognition.
Both conditions are life limiting. There is no treatment and no cure.
Currently, around 60% of people living with either disease, are initially misdiagnosed with other conditions including Parkinson’s, stroke and depression.
PSPA is the only UK charity dedicated to creating a better future for every affected by PSP & CBD.
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