An awareness campaign in memory of Lord Garfield Davies of Coity, CBE (1935 – 2019) author of ‘From Overalls to Ermine’ has been established
The campaign has been set up by Garfield’s family and friends and they are now devoting themselves to raising awareness and fundraising to support research into PSP, calling it the Hummingbird campaign as the brain cells die they take on the characteristic shape of a hummingbird.
Progressive Supranuclear Palsy (PSP) is a terminal, degenerative neurological condition with no known cure or treatment at present. It causes increasing levels of disability, until eventually the person is likely to be entirely bedridden, unable to communicate, and in need of 24 hour care.
Prior to diagnosis of PSP some people are misdiagnosed as having Parkinson’s. Unfortunately the medication for Parkinson’s does not work for PSP. The scan to identify Parkinson’s will not show if they have PSP. It is only a DAT Scan that can do this.
PSP is relatively unknown – meaning that no emotional or intellectual connection is made – unlike with Parkinson’s or Motor Neurone Disease. PSP can affect 6 in every 100,000 people yet only a quarter will receive a formal diagnosis. Currently there are estimated to be 4,000 people in the UK living with PSP.
The statistics regarding deaths from PSP are misleading. People are dying from the symptoms of PSP without being diagnosed – such as falling, choking and pneumonia.
It is considered rare when in fact it’s not rare, it’s just going undiagnosed and it’s failing to get the recognition that it deserves.
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 and dignity.
Lord Garfield Davies was USDAW’s General Secretary between 1986 and 1997, receiving a CBE in 1996. He then went on to serve in the House of Lords and became Lord Garfield Davies of Coity. He only took temporary leave in February 2018 on health grounds and passed away in March 2019 as a result of PSP.
Garfield only received his formal diagnosis in September 2017 when he was already in stage four of the condition – and that was after going to several different specialists.
People with PSP often fall backwards without warning and memory problems along with changes in personality are often dismissed as being part of the ageing process, or it may be dementia, or it might be Parkinson’s.
When Garfield and his family received the PSP diagnosis after 4 years, they were told there was no treatment, no cure received no advice, not even a leaflet about PSP.
Garfield left hospital in 2018 with palliative care, which was withdrawn when he made a slight recovery, leaving his family to continue their support with only a basic care package which took no account of his medical needs. The family had to go back to social services and fight for an appropriate care package that should have been given from the start. This was only provided for the last 21 days of Garfield’s life.
The PSPA Helpline can provide information; by chance the family discovered and attended a support group for the first time a few days after his death, and through this experience they learned that people are still today enduring the same journey that Garfield went on.
PSPA celebrated its 25th anniversary in 2019, yet after all that time people are still being misdiagnosed due to a lack of awareness of PSP in the medical profession.
In 2002 Dudley Moore died from PSP and in 2012 so did Sir David Attenborough’s brother, John. Years later this condition is still largely unknown to the general public but more importantly, and unfortunately, also to the medical profession. PSPA held their first International Symposium in London in October 2018.
Red Flag leaflets on PSP and CBD which alerts medical professionals on what to look for when patients present with symptoms of PSP.
Garfield spent his life helping others – and in death he donated his brain to further research efforts.
If you are able to take the Red Flag leaflet to your GP and let PSPA know the doctor’s name, surgery name, address, telephone number and contact email address (if possible), by emailing [email protected].