The family of former USDAW general secretary Lord Garfield Davies of Coity CBE, who died from a rare neurological condition earlier this year, have teamed up with a national charity and trade union to launch a GP-targeted awareness campaign.
Trade union activist and Labour peer Lord Davies died in March 2019. He was diagnosed with the rare condition Progressive Supranuclear Palsy (PSP) in 2017. A terminal, degenerative neurological condition, PSP has no known cure or treatment, It causes increasing levels of disability, with sufferers eventually rendered bedridden, unable to communicate and in need of 24-hour care.
Lord Davies' widow Lady Marian Davies, her family and trade union USDAW have teamed up with the only charity in the UK that specifically supports sufferers and their loved ones, the PSP Association (PSPA), to raise awareness of the rare condition and help GPs spot the signs - before it's too late.
Carol Amirghiasvand, Director of Engagement for PSPA, commented: "People are affected by the symptoms of PSP without being diagnosed - such as complications of falls and infections, which often include pneumonia.
"Without a formal diagnosis patients are missing out on essential care and effective measures being put in place to manage the symptoms, keep them safe, and allow them to live their lives with respect dignity."
In 2002 actor Dudley Moore died from PSP. Ten years later, in 2012, the condition claimed the life of Sir David Attenborough's brother, John. The condition is sill largely unknown to the general public but more importantly - and unfortunately - also to the medical profession.
To increase awareness, the PSPA have created a Red Flags guide for GPs and medical professionals, highlighting the signs that someone is suffering from PSP.
The campaign also stresses that a DAT scan is the correct way to diagnose PSP (the red flags guide is here: https://pspassociation.org.uk/app/uploads/2019/01/New-PSP-Red-Flag-Final-LR.pdf).
Lady Davies said: "PSP took the life of someone who was committed to making a difference in the world. Garfield spent the majority of his life campaigning for change and even in death supported the campaign to raise awareness of PSP, donating his brain to science. It's our hope that the Red Flags guidance will make it into GP surgeries across the country and raise awareness of this debilitating terminal condition."
Paddy Lillis, USDAW General Secretary, added: "PSP is currently incurable, there's no effective treatment to prevent the condition getting worse and life expectancy can just be six or seven years. There needs to be greater public awareness of PSP. We also need to see more government-backed research into the condition and while there is no cure for PSP, many of the symptoms can be managed to help people achieve the best possible quality of life."