.. for a second chance at life for all transplant patients.
Yesterday I was invited to attend a meeting at parliament to discuss the decision to not routinely fund second transplants. The day went of to a stressful start with me realising whilst on the train to London that I had thought the meeting was at 4pm, where as in actual fact it was at 3pm! Cue panic! I phoned Anthony Nolan to apologise for my lack of brain (can I still blame chemo brain?) saying I would be with them as soon as I could.
Now I had to work out the most efficient method of getting to westminister. Previously I had allowed 1.5hrs. Enough time to get a hot drink, have a wee, take a leisurely stroll over to westminster and be prepared for a potential long queue (up to 40minutes) to get through security,. Now I had 35 minutes, assuming my train arrived on time!! Gah!!
Amazingly my train arrived 2 minutes early, I ran whatever parts of the route I could, AND there was only 3 people in front for security. How lucky!!
The meeting was a bit daunting. First time I have been to anything as official/formal as this. Around 20 people in the room, a couple of MPs but mostly clinicians or charity represenatives (however no one from NHS England turned up who we needed to talk to most!). I was called up first to say my 2 minute patient story. Here is a shortened, and more concise version of what I said:
‘ I have been fighting blood cancer for 12 years, and I have been fighting it hard. I have taken every opportunity given to me to treat it and live my life to the fullest. When my MDS relapsed and showed signs of progression to AML in July 2015 I was shocked to find out that the choice to fight was no longer in my hands. I had to ask for permission to fight. Whilst waiting for approval from the IFR I got sicker and sicker, I spent roughly 3 months in hospital on continuous IV antibiotics as my immune system weakened and the AML progressed. In the end my consultants made the decision that we needed to go ahead with chemotherapy regardless of the decision on the second transplant funding. This was a risky choice, as although the chemo would kill the cancer cells, it might also kill too much of my normal bone marrow for me to stand a chance of recovery. However, if we left the AML to progress further then the transplant might not stand a chance of working full stop.
I was lucky and I got given a second chance. I was deemed to “demonstrate exceptionality” and to be a “cohort that would benefit due to long term survival”. BUT I knew of others that weren’t as lucky as I and weren’t deemed exceptional. What gave me the right to live but not them?’ (here I did give more information on their story, but I won’t do so in my blog without their permission!)
The room was very much on our side. The MP’s were asking lots of questions to all the room so they could find out as much information as possible to back up our case. They will then hopefully get a meeting with NHS England in the next few weeks to discuss it further.
I was horrified with how money driven all of this is….. At the end of the day a second transplant isn’t to try and buy a patient 1/2 years…… its in the hope they will get to live till they are old and grey and have a normal life! How can you put a price on that?!?!?
Emma's fight against MDS 