- 22 June 2015
Bob Doris SNP MSP for Glasgow and Deputy Convenor for the Health and Sport Committee chaired the event on 17 June 2015 at Holyrood where he welcomed over 90 guests from across Scotland and the UK to raise awareness of Progressive Supranuclear Palsy.
PSP is a rare brain disorder that is caused by the progressive death of nerve cells in the brain, leading to difficulty with balance, movement, vision, speech and swallowing. The disorder's long name indicates that the disease begins slowly and continues to get worse (progressive), and causes weakness (palsy) by damaging certain parts of the brain above pea-sized structures called nuclei that control eye movements (supranuclear). The average life expectancy is around seven years from onset. Unfortunately, PSP is often misdiagnosed as a stroke or Parkinson’s disease which is why raising awareness is so important.
Amongst the attendees and speakers included Shona Robison Cabinet Secretary for Health, Keith Swankie and his wife, Sheelagh and daughter Jordan, and representatives from the PSP Association including Fergus Dalton the organisations Chief Executive, following a social media campaign by Keith Swankie, who lives with PSP.
People living with PSP and those who care for them told the 10 MSPs who attended about the impact of the disease, the issues that affect them and how services could be improved to help them. The event also included a heartfelt and emotional speech from Jordan Swankie, Keith’s 17 year old daughter about her personal journey and experience in coping with her father’s condition since 2012.
Bob Doris MSP told guests it was ‘a privilege’ to host the event: “I commend Keith and others for their dedication in championing both awareness of PSP, as well as research and treatment,” he said. “Keith’s work came to my attention during this year’s PSP Awareness Week and I wanted to learn more about PSP and what can be done to help sufferers. Hopefully the event I have arranged at Holyrood will help achieve this.
“Following the event I will now be meeting with PSP Care Support staff to see how I can help improve the service constituents receive when living with PSP, be it the sufferer or their family
Fergus Logan Chief Executive for the PSP Association said: “The PSP Association (PSPA) is grateful to the Scottish Parliament for enabling us to hold an awareness-raising event, in particular Bob Doris MSP for hosting it, the Health Secretary for speaking and all the MSPs who attended.
“I would like to thank all our supporters in Scotland, a growing band, who are working hard to ensure PSP is becoming better known.
Keith Swankie commented: “Many thanks to Bob Doris and everyone involved in helping to organise the event and those who were able to attend and participated in making the event so special. This is just one example of a successful gathering in raising greater awareness of PSP - this is only the beginning and I hope we can build on this in moving forward.