In July I attended a Reception for the All Party Parliamentary Group on stem cell transplantation at the Houses of Parliament. This is a group of MPs who support, campaign around and are interested in stem cell transplants, at a governmental policy level.
Last year I was invited by Anthony Nolan to attend a meeting of the APPG on SCTs to talk about my own experiences post-transplant, which was an interesting experience for me and I hope that it was effective in informing MPs and other interested parties about what what we face and what can happen after a transplant.
Anthony Nolan’s campaign last year, A Road Map for Recovery was to ensure good quality treatment and care at any point post-transplant, wherever we may live in England, rather than rely on the policies of the local CCGs [Clinical Commissioning Groups], who take over the funding of treatment after 100 days post-transplant, which is a fairly arbitrary date and can mean a fairly arbitrary decision on what care we may receive dependent on where we live. I’ve been very lucky living so close to one of the UK’s centres of excellence in haematology. Not everyone can say the same.
Here’s the Road Map for Recovery report, in which my story appears on page 23: http://www.anthonynolan.org/sites/default/files/PPA_report_FINAL_WEB.pdf
As George says in the video below, the transplant is only the beginning. I think the majority of people would probably think that once you’ve had and recovered from a transplant, that’s it: cured! It’s not quite so simple. I’ve been very lucky, but I know a number of people who received a transplant but died from an infection or from GvHD [Graft versus Host Disease], both of which are common issues post-transplant.
With Destination Cure, Anthony Nolan is campaigning to ensure that the destination for every person with blood cancer is a cure. See more at: http://www.anthonynolan.org/8-ways-you-could-save-life/campaign-us/destination-cure#sthash.IXZMpVfl.dpuf
If you look really closely, you may see me standing at the back as David Burrowes MP speaks to the gathering. And for once, I wasn’t on camera, speaking or interviewed on the video. A rare moment indeed!
Unfortunately my own MP, Anna Soubry, was not able to come to the Reception, but she has assured me that she is aware of and supports the work of Anthony Nolan.
If you have a spare 30 seconds, please contact your MP to encourage them to support the campaign:
Again, as George says, your support could make a lifesaving difference for people like me.
And if you’ve not registered as a potential donor already, please consider – it only takes a few moments and a few spits. You could be that person who saves someone’s life!
You could also donate blood, which many myeloma/blood cancer/transplant patients need. I’ve needed a few blood transfusions along the way: https://my.blood.co.uk/Account/Register
Under 30? You can register with Anthony Nolan: http://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells/apply-join-our-register
Over 30, and under 50? You can register with the British Bone Marrow Registry via the Blood Service when you next/first give blood. Here is the link to the register: http://www.nhsbt.nhs.uk/bonemarrow/
Under 55? You can register with Delete Blood Cancer, another charity: https://www.deletebloodcancer.org.uk/en/register-now
I hope you are still doing well because it has been a long time since you have posted… in any event, wherever you are in the universe, I wish you well…