Young people have a very mixed understanding of what stem cell donation involves. In this blog, Anthony Nolan’s Chief Executive Henny Braund explains how new guidelines from the Department for Education could help change this. She also reflects upon her last ten years at Anthony Nolan and the vital role that education has played in saving the lives of people with blood cancer.
New guidelines from the Department for Education
On 19 July 2018, the Department for Education published draft Health Education guidelines, saying that all secondary school pupils in England should be taught ‘facts about wider issues such as organ/blood donation’.
By Monday 25 February 2019, the guidelines had been updated to say that pupils should be taught ‘about the science relating to blood, organ and stem cell donation.’
The difference may only be a few words, but the impact could be huge: the new guidelines mean that, from September 2020, every secondary school pupil (aged 11-16) in England will have the opportunity to learn about stem cell donation.
This is important because we know that students have a very mixed understanding of what stem cell donation is and what it involves. For example, when we surveyed 460 young people last year, 44% thought that stem cell donation uses embryonic stem cells – but this is never the case.
Our hope is that every young person in England will now leave school with the facts about stem cell donation. This isn’t about encouraging students to sign-up to the stem cell donor register, it’s about empowering them to make a properly informed decision about whether to join once they become eligible at 16.
A ten-year journey
As I reflect upon my ten years as Chief Executive of Anthony Nolan, there is no doubt in my mind about the vital role that education has played in saving the lives of people with blood cancer right across the UK.
Recruitment event at Newcastle Sixth Form College – the 1000th school to deliver our education programme, ‘The Hero Project’
In 2009, we started collaborating with NHS Blood and Transplant to deliver a nationwide education programme called ‘Register & Be a Lifesaver’ – now known as ‘The Hero Project’. The programme sees trained volunteers deliver inspirational sessions to 16-18 year olds, teaching them about the importance of stem cell, blood and organ donation. Afterwards, students have the option of registering as a donor.
This work is the legacy of a young journalist named Adrian Sudbury who, in 2008, presented a petition to the UK Government calling for better education about donation. He very sadly died from leukaemia shortly afterwards, aged just 27, but his vision became a reality.
I am immensely proud that, during the past decade, we have educated more than 330,000 young people. We have also recruited over 5,000 students to the organ donor register, 8,000 students to the blood donor register and 32,000 students to the stem cell donor register – more than 100 of whom have gone on to donate and potentially save a life.
Leah is one of these incredible individuals. Her cousins, Ella and Sam, both needed a stem cell transplant to treat a rare, genetic blood disorder. They weren’t able to find a perfect match and sadly died, but their search inspired thousands of people to sign-up to the stem cell donor register – including Leah, who joined after spotting an Anthony Nolan stand at her college. She went on to donate in 2018, saying:
‘It was obviously so close to home, I knew exactly what the recipient would be going through so it kind of made it that much more overwhelming and exciting. It means the world to me to be able to donate to somebody, knowing that I’m giving somebody a possible chance.’
2009 is also the year that marks the origin of our groundbreaking partnership with the Scottish Fire & Rescue Service (SFRS).
The partnership was initiated by Ally Boyle who, at the time, was Area Commander of Strathclyde Fire & Rescue Service. Ally had recently been diagnosed with a type of blood cancer called myelodysplasia and told that his life would likely depend on a stem cell transplant in the future. He quickly realised that both the Fire & Rescue Service and Anthony Nolan existed to save and improve lives, and that together we could have a hugely positive impact.
Strathclyde Fire & Rescue merged with the other seven Scottish brigades to form the SFRS in 2013. This allowed the partnership to grow and there are now more than 20 volunteer groups, operating all the way from Orkney to Dumfries.
The main focus of the partnership is going into secondary schools across Scotland to educate 16-18 year olds about the potentially lifesaving impact they can have through positive citizenship, whether that is by becoming a stem cell, blood or organ donor, or by becoming an ‘SFRS Champion’ and leading peer-to-peer engagement.
Since 2012, SFRS volunteers have delivered over 140 school events and educated more than 18,000 students about stem cell, blood and organ donation. This has led to over 8,000 students joining the stem cell donor register – a truly outstanding achievement.
What’s next?
Anthony Nolan, along with partners including the All-Party Parliamentary Group on Stem Cell Transplantation, called on the Department for Education to add stem cell donation to the Health Education guidelines – so we are delighted to see this happen.
We now look forwards: this means working with the Department for Education to ensure that every young person in England leaves school with the facts about stem cell donation, and doing all we can to raise awareness of the stem cell donor register amongst young people right across the UK.
To find out more about the Department for Education’s proposals, visit gov.uk.
If you are a school or sixth form college who is interested in getting involved with The Hero Project, visit anthonynolan.org/education.