A group representing Spotlight YOPD and the interests of those with Young Onset Parkinson’s in the UK, recently went along to meet with (Labour) MP Nick Thomas-Symonds – who is constituency MP for our new poster girl, Hayley. Spotlight YOPD has no affiliations with any political parties (we’re all at risk of being diagnosed whatever our political leanings).
We have long known that those with YOPD tend to fall through the gaps when it comes to a comprehensive medical care package. Having done some research as to the frequency of issues relating to PD being brought up in the House of Commons (or indeed the Lords), entries in Hansard were sparse. We had made approaches to MPs but were clearly languishing in their inboxes.
Then, in conversation with our new poster girl, Hayley pointed out that her MP lived around the corner from her and was actually a friend on Facebook! Spotlight sent him a message and a friend’s request. Both prompted an immediate positive response. We were consequently invited to the meeting at the Houses of Parliament within the month, taking place on Wednesday 18 January 2017. Speedy progress in anyone’s book; we figured it was a very good start to Spotlight’s year and produced much more than we expected.
Nick has been and continues to be hugely proactive, pushing for a dedicated debate on YOPD.
On our list of issues to be addressed is:
• Free prescriptions for those with YOPD. Currently people with Parkinson’s still have to pay until they are 60.*
• Implementing the NICE guidelines as set out in 2006**
* The current prescription charge is £8.40 per item. This price can be reduced with a prescription prepayment certificate (PPC) – currently £104 pa. Having to buy that potentially for the next 20 to 30 years would mount up.
*On the few occasions that PD was mentioned in Hansard the stock answer given referred to the nice guidelines, with an assumption that they had, in fact, been adhered to. A new set of nice guidelines is imminent – including plans to stop the availability of Duodopa.