I thought I would update you all of the things that have been happening over the last few weeks and what I have planned!
It all started in the last week of spring term at university, when I spoke to Gloucestershire Live who write for the local papers in Cheltenham. I spoke to them about my recent experiences of Cheltenham General Hospital and, how I had experienced what many CRPS sufferers experience which is ignorance of the condition and doctors calling it "psychological", despite showing the physical symptoms. This went out on the 22nd of March, link below:
I thought this would be it in terms of media, but how wrong was I!! The following morning I had messages from lots of journalists, news agencies and also BBC Radio Gloucestershire. Once I had sifted through them, I picked the ones I wanted to follow up. I chose to do an interview with Anna King on BBC Radio Gloucestershire. This was pre-recorded on Tuesday 27th of March and released on the 28th. It was an amazing experience as I got to see what radio studios are like and what is like to do a proper radio interview! We talked about CRPS and the ignorance of medical professionals when it comes to the condition, using my recent experiences as an example. Rebecca from the charity CRPS UK did a live interview after it came out on the 28th to explain more about CRPS.
Following that interview being released I was then contacted by various tv producers and journalists. Two of whom were channel 5's health correspondent for the national news and also by ITV West Country. I didn't really expect them to follow through with it but again I was proved wrong!
On Tuesday 3rd I received an email from channel 5 news asking if they could come and film that day or possibly the next day. Once a few things had been sorted at their end they came to film that day. The process took about 2hrs to complete. They asked me lots of questions about CRPS, my life and also the problems faced when interacting with a medical professional. It was really enjoyable and I was very excited to see the finished article on the news at 5pm that day.
The following day they released the synopsis video onto their Facebook page. I made the CRPS community aware and they got sharing on their social media. I periodically checked on the viewing figures and it kept going up, by the evening it was on 30k views, it went up again to 60k views and the shares eventually hit over 1k and the viewing figures kept going up and are now over 80k. I am still speechless as the speed in which it went up and how it was received all over the world.
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| Channel 5 synopsis report |
On the 10th of April, ITV West Country came to university to film. I was not really sure what to expect after filming with channel 5. However the process was very similar and some of the questions were similar but we also looked at other areas of CRPS. They also did an interview with one of my friends who had been in the ambulances and on various trips to hospital, so we were able to get a friends perspective on some of the treatment I had received and also what it is like to have a friend with CRPS. They are still in the process of interviewing some medical professionals so the report hasn't gone out yet but we hope it will be aired by the end of the month, I will post the link on here when I can.
On the 12th of April I had a meeting with MP Alex Chalk (Cheltenham). Alex has been following my story since he met me at a talk at university. He was very keen to help me with my awareness work and was very encouraging. He invited me to hold an awareness event in Parliament so that I could further my awareness and make more MPs aware of what CRPS is, how they could help constituents with the condition and also hopefully talk to those who can influence policies that may effect CRPS sufferers. We are hopeful that this event will happen in June or July. I am honoured that Alex has given me this opportunity and very thankful to have his support.
So that is a quick journey through my life in the last few weeks. Its been absolutely amazing and I'm still running on adrenaline! I am waiting for my CRPS to seriously flare up now in retaliation!! Lots of people have been asking so what next? Well here is what I can reveal,
In the next few weeks I have got a few more leads to follow up in terms of media, hopefully we will have the release of the ITV news report. On the 27th April I have the first meeting of the society I set up with two friends, its called the Disability Welfare Society and is the first disability support society to be set up at the university. The primary aims of the society are to provide a place where students can come together to share experiences and support each other. But also for people to come together and raise awareness of their chosen conditions. Very exciting!!
I will keep you all informed when I can, thank you for all the support!
Helena
