June 19, 2015

It’s complicated, which is why Team Margot is a ‘signpost’

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I first read about Sue Lloyd Roberts on Wednesday morning. This lady is a celebrated BBC journalist who has myelodysplastic syndrome and she desperately needs a bone marrow transplant.

My heart goes out to Sue & her family & friends; having played ‘the waiting game’ to see whether a donor match for my daughter Margot could be found, I can tell you that the waiting & wondering period is an utterly dreadful time, full of anguish and despair.

And to compound matters, it seems that initially, there were three potential donor matches identified for Sue – but for various reasons two were unable to donate & the third failed their medical, just two weeks before harvest was scheduled to occur. Hence Sue’s current appeal which highlights just how tenuous the whole situation is: of the 25 million people on the worldwide registries, three potential tissue type matches are identified and give hope to the patient and their family, who are then, in a cruel twist of fate, suddenly left empty handed.

There have been a few articles written about Sue’s plight, initially by the BBC (that article appears to have since been taken down), in The Guardian on Wednesday and then The Daily Mail & The Times yesterday, but they all make for frustrating reads. Don’t get me wrong, these articles are well founded and cover the story understanding that people care and want to help, which is why communicating the right information is vital. Literally.

So I was frustrated to read in the initial BBC article on Wednesday that people needed to be under 30 years of age to join the register. I wrote to James Clayton, the BBC contact named in the article that morning, pointing out that those over 30 can indeed also register and here’s how ! And I also tried to contact Sue directly. We don’t want to limit the extent of the search for Sue or indeed anyone else.

But then my upset was reborn on reading the Guardian article which states: “Anyone between the ages of 16 and 30 can sign up to be a potential donor on the website of the blood cancer charity Anthony Nolan”. This is of course a truism, but it omits to point out that those between 17 and 55 can also register via Delete Blood Cancer UK. Ditto with the Daily Mail article which simply states: “Visit the Anthony Nolan website here if you’re interested in becoming a stem cell donor” and The Times article that reads to give a saliva sample and sign up people “must be younger than 30”.

Thankfully, James Clayton & Sue Lloyd Roberts co-wrote an article on Channel 4 & got this point correct, but whilst their article does include reference to the higher age limit of 55 catered to by Delete Blood Cancer UK it omits the point that anyone who regularly gives blood can also join the stem cell register by giving a one off blood sample the next time they go to donate blood.

We want the public to get the facts right and so I started trying to do this, initially beginning with the Daily Mail journalist this morning only to find myself wasting time, continually being referred back to the operator in reception because the journalist in question appears to be a freelancer & doesn’t have a telephone extension.

Grrr.

Hence this blog post which I’m sharing with all and sundry.

Please can you also do the same.

Thank you.

To find out how you can register as a potential stem cell donor, in the UK or indeed anywhere in the world, please visit: http://www.teammargot.com/how-to-register/

Team Margot
Together, saving lives

ps To read Sue Lloyd Roberts blog: https://sllrblog.wordpress.com/

pps for the sake of completeness, cord blood can also be donated at birth – for more on this visit: http://www.nhsbt.nhs.uk/cordblood/

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015) & Margot (2012-2014)

Posted in: Journal