Two months ago Spotlight YOPD made contact with MP Nick Thomas-Symonds who has happily become a champion of the YOPD cause. We are delighted to announce that Labour MP for Torfaen in South Wales, Mr Thomas-Symonds has secured a debate in the House of Commons this coming Monday (6 March 2017) at around 10pm – to be broadcast on parliamentlive.tv.
The Young Onset Parkinson’s cause was flagged up by his constituent, 30 year old mother of two, Hayley Huxley (diagnosed five years ago at just 25). Hayley hasn’t seen a neurologist since diagnosis and relies on her Parkinson’s nurse, who she hasn’t seen since July last year.
It’s 200 years since an English doctor named James Parkinson penned his paper on The Shaking Palsy. In it he noted many of the non-motor symptoms alongside the tell-tale signs of the ‘movement disorder’ we know today. No doubt it would come as both a surprise and a disappointment to the man who gave it a name that Parkinson’s Disease is not only still waiting for its cure – but that the numbers experiencing its myriad symptoms, including pain, depression and insomnia are growing, in both young and old.
With an ageing demographic, it can – of course – be expected that all diseases associated with seniors will be on the rise. If people live long enough, statistically they are likely to get Alzheimer’s, Parkinson’s, cancer, stroke or some other condition associated with the elder generation.
Gaynor Edwards, co-founder of Spotlight YOPD and diagnosed at 42, said: “From anecdotal evidence, we believe the Parkinson’s population is growing for the early-onset group as well. Figures based on a conservative guesstimate put the number of people with Parkinson’s under the age of 50 at 6 500.*
“With no database for the condition in the UK (or in the US for that matter), it’s hard to provide a definitive figure,” she continues. “Many younger people with PD go undiagnosed, moving all too slowly from GP to consultant or misdiagnosed. Many will end up having unnecessary operations and treatment for such conditions as a frozen shoulder. Others are reticent to start the process or told that ‘it’s all in their head’.
Those diagnosed in their 20s, 30s or 40s are often intelligent people, professionals and high-flyers.
They should be seen as a long-term investment; still able to contribute to society, their community and the UK economy. Called ‘Awareness of young-onset Parkinson’s disease’, Monday’s debate is seen as a step in the right direction…
Spotlight YOPD – the UK’s dedicated charity for Young Onset Parkinson’s – has aspirations beyond awareness. On their wish list is:
• Free prescriptions for those with Young Onset Parkinson’s.
• Greater access to Parkinson’s nurses – offering a comparable service, whatever the postcode,
with evening clinics and some kind of ‘out of hours’ facility.
• Understood ‘in-hospital’ rules (stronger than guidelines) – allowing YOPs to manage their own
medicines, wherever possible.
• Access to counselling from diagnosis onward.
• Better training or information for GPs on motor and non-motor symptoms, so that they are more
likely to refer patients to Neurology.
• Information and access to care packages and personal health budgets for self-management,
addressing specific symptoms and sourcing the best help.
• Young Onset priorities – encourage and match suitable research programmes.
• Ensure there are options for when the oral medication no longer works.
• Implementing the last set of NICE guidelines – before creating a new set.
NB. Some of these campaign aims are already in place in Wales and Scotland – we would like to see consistency across the UK for all with YOPD.
“We are delighted that Nick has gotten this on the political agenda,” says Gaynor. “We are also surprised at the speed that the debate has come about, within two months of our first meeting with him…
“We made contact via Facebook. I think there’s a lovely synergy that we have a young MP fighting our corner, using social media, as the YOPD community does. Of course 200 years down the line, it’s a refreshing change from the painfully slow pace we are used to with PD issues,” she concludes.
*(Until recently Parkinson’s UK – the largest UK PD charity – used the formula 1 in 500 of UK population has PD. Of the 127,000 people in the UK with PD, 1 in 20 under 40. They now use the phrase: “Most people who get Parkinson’s are aged 50 or over but younger people can get it too.” https://www.parkinsons.org.uk/content/facts-journalists
Spotlight YOPD believes the percentage with the condition may be far greater. However, using current population stats: UK pop in 2017 = 65 000 000 / 500 = 130 000 PWP 5% = 6500