Today in Prime Minister’s Question Time, a Member of Parliament raised a question about one of his constituents who, like me, has neck instabilities caused by EDS and is also having to crowdfund for treatment overseas because there is nothing available on the NHS for us. There are thousands of people in the same boat. Just hearing this question raised in parliament was incredible. I’ve been consistently ignored by my own MP so it was refreshing to see this.
Mum has immediately sent off an email to the MP that asked the question to tell him about me and to ask him to keep us up-to-date on any developments or if the government are going to set anything in motion or if he can help in any way.
It would take years to train up neurosurgeons in this country and get the specialist equipment into our hospitals in the UK (there’s no hospital in the UK with the equipment needed to determine the amount of intraoperative traction needed for complex EDS patients). So it’s unlikely that this will help my situation personally but it’s great that the process has potentially been started for people like me in the future. I’m guessing that the government are not going to financially contribute to individuals currently fundraising because there are so many people who need these operations overseas. It’s unlikely. Given that there’s no help available to us on the NHS, I wish that they were legally required to fund the treatment that we need abroad. We’ll see what happens.
So I’ll still have to raise the money by myself. This MP seems willing to fight for his constituent. I’m not his constituent so I don’t know if he’ll be able to help me but we’ll wait to see if he replies to our email to see if he can help at all. Meanwhile, we keep fundraising (at gofundme.com/savejenny)
To see the question in parliament and the Prime Minister’s answer, go to time stamp 13:15 of the following YouTube link: https://www.youtube.com/live/aJ-x3Qy1WhA?si=MFiNmC7qm-fwU-Zm
Thank you to Simon Meadows for bringing these PMQs to my attention. We would have completely missed it otherwise!
Here is the video that explains what is wrong with my neck, details of the surgery that I need, my everyday bed-bound life as I fight to stay alive, and why it is getting more urgent that I get this neurosurgery as soon as possible:
