The Miracle of our NHS
It is probably true that I would not be alive today if I had been born in almost any other country. It is most certainly true that I would not be alive today if it weren’t for the NHS.
In 1973, I was the first person in the world ever to survive a bone marrow (stem cell) transplant from an unrelated donor.
Last week I had the honour of giving a speech at All Party Parliamentary Group on Stem Cell Transplantation’s annual summer reception, held in the Terrace Pavilion of the Houses of parliament. The transcript of the speech and the video of it are below.
This APPG (to use the less verbally challenging and more time efficient acronym) exists to raise awareness of and to inform parliament about the need and importance of stem cell transplants to help save lives of people with blood cancer and haematopoetic disorders (i.e. diseases of the blood cells such as white or red blood cells or platelets.) In front of a friendly gathering of MPs, clinicians, medics, patients and their friends and relatives, it was an opportunity to tell not only my story but also the stories of both my mother and my brother – if it had not been for them, I would not have had my transplant.
The time was limited to three-and-a-half minutes so it is merely a brief introduction to this remarkable story of love, grit and the determination of a brave and courageous woman. My brother tragically died two days before he himself could have been the first to undergo the procedure – a match had been coincidentally found in Holland. It was too late – he had become too sick and was in terrible pain. The little golden-haired boy they referred to as being like an angel and too good for this world, died in his sleep listening to his favourite records of nursery rhymes.
His death would not be in vain. My mother started The Andrew Bostic Fund which quickly raised in excess of £10,000 (five times my family’s annual income back then) for research into immune deficiency disorders and to pay for the sterile units needed to be able to carry out risky procedures such as bone marrow transplants.
For those who prefer to read the transcript, it follows the clip below.
Thank you very much Prof Snowden for introducing me and also to Mark Tami MP for inviting me here today to such a wonderful gathering of friends and supporters of stem cell transplantation.
My story begins with my two-and-a-half year old brother Andrew who, in 1972 died from septicaemia caused by a rare, incurable immune disease. My parents were told they would lose me too as I had inherited the same condition. At 20 months, I was nearing death after 10 respiratory infections and numerous septic lesions.
My only hope was an incredibly rarely performed and risky procedure, known then as a bone marrow transplant and which we know today as a Stem Cell transplant.
However, even then there was little hope. I had no match within the family and in those days, nowhere to find an unrelated donor – no register or panel of donors waiting to be a match and save a life. And besides, no-one in the world had ever survived a bone marrow graft from an unrelated donor. So, a miracle was needed. In fact it would need a double miracle:
The miracle of finding a donor, and the miracle of surviving such an experimental procedure.
Such a double miracle would require miracle workers – heroes that need to be remembered.
First on my list of these to mention is my mother, Elisabeth Bostic.
After losing Andrew, my mother had tirelessly campaigned and fundraised for research and sterile units at Westminster Children’s Hospital where my brother and I were being treated. She was able to persuade Prof John Hobbs and his team to try and assemble a panel of unrelated donors.
But how to find them?
Amazingly my mother managed to attract the attention of the national media and a global search for a matching donor for me began.
The media sensation that developed led to thousands of people coming forward to have their blood taken to see if they could be a match and this formed the first ever donor panel of volunteers.
And in a miraculously short time a match was found, a young mother from Cambridge, Joan McFarlane, yet another miracle worker.
The overwhelmingly positive response of the general public astounded everyone and of course led to Shirley Nolan travelling all the way from Australia in the hope that her son Anthony, could benefit as I had.
Shirley came to meet my mother, found inspiration from her campaigning spirit, and in due course took my initial panel of volunteer unrelated donors and began building it to become the enormous register we have today. Sadly of course a donor was never found for Anthony – but the indomitable spirit of my mother and Shirley lives on today in the charity that bears his name.
My survival depended also on the miracle workers of the NHS, especially the pioneering team of medics at the Westminster Hospital under Profs John Hobbs and Joseph Humble who were negotiating hurdles and challenges that few others were prepared to take on at the time and encountering doubt and opposition on many fronts.
On Friday 13th April 1973 I received the donor stem cells. Against all the odds, the graft took and my body started producing healthy white blood cells. The impossible became possible.
It is true that due to the experimental nature of the procedure, the graft was too small to last a lifetime but I was saved from certain death, and the graft saw me through my childhood.
More importantly, I was living proof that it could be done, that volunteer donors wanted to help, that more lives could be saved …
The miracle workers of the NHS have saved my life on many occasions since, and without them I would not be standing here today.
This speech represents merely a fraction of what I want to say about my mother and Andrew. Yet since the speech, people have commented not only on how inspirational I am for still being alive at the grand old age of 47 but also on what a rallying cry it is for the NHS. Someone living with chronic illness in the USA messaged me on Instagram commenting on how lucky we are to have the NHS. Both the ITV and BBC programmes I was interviewed for this year as part of the NHS at 70 celebrations threw into great relief how much we all depend on this great organisation and which we all, to a greater or lesser degree, take for granted. These days, stem cell transplants are usually carried out with a probability of success in excess of 90%. To me this seems incredible. You will appreciate how shocked I was then to hear a consultant haematologist say that these days, this is just not good enough – so great are our expectations. We have come a long way indeed, yet we must take care not to overly burden the NHS with expectations that it just cannot meet in the current financial and political climate.