Anthony Nolan joins our Patient Partnership Programme

Patient Partnerships Spotlight Interview: Anthony Nolan
Two of the Anthony Nolan team
This month, our Patient Partnership Programme welcomed Anthony Nolan, a UK charity that saves the lives of people living with blood cancer and blood disorders. By Dr Ankita Batla, Dr Kiran Khepar and Caitlin Rich

In the UK, someone is diagnosed with blood cancer or a related disorder every 14 minutes. For many of these people, traditional treatments such as chemotherapy and radiotherapy don’t work, so transplants are their only remaining option for survival. This happens for around 2,000 people every year in the UK. Anthony Nolan matches those desperately in need of lifesaving transplants to incredible individuals willing to donate their blood stem cells or bone marrow.

Many thanks to Henry Ellinger-Gane, Katie Griffee and Alice Hirst for presenting to us and tackling all our questions! Here’s a flavour of what they told us…

Why is the charity called Anthony Nolan?

In the early 1970s, Shirley Nolan found out that her 6-month-old son Anthony needed a stem cell transplant. Shirley was told that it was possible to do this transplant, but they’d have to find a donor. She therefore started a campaign and managed to add 1,500 people to the register in just one year. The register grew throughout the seventies, but unfortunately they never found a donor for Anthony. He passed away at age 8.

The campaign, however, sparked an incredible movement. There are now over 800,000 people registered on the stem cell register. Anthony Nolan has 50,000 regular supporters and thousands of young activists across 50 UK universities. The campaign has saved over 20,000 lives.

What are your key challenges?

Unfortunately, we can’t find a matching donor for everyone who needs one, and not all transplants are successful. If you’re from a white Northern European background, you have a 71% chance of finding the best possible match. This drops to a 39% chance if you’re from a minority ethnic background. Only 50% of people who get a transplant survive for more than 5 years, although without the transplant they may only have months to live. Cancer can also return post-transplant.

What do Anthony Nolan do?

They have 3 key areas of work:

  • Stem cell donor register – recruit new lifesavers to the stem cell donor register.
  • Patient support and care teams – set up pre-, during- and post-transplant support services, such as clinical nurses and psychologists, who support patients throughout their transplant journey.
  • Research – the Anthony NolanResearch Institute focuses on improving survival chances following stem cell and marrow transplants. For example, the Patient Donor project analysed 4,000 transplants over 20 years and found that younger donors provide better survival rates for patients, hence why we focus on recruiting 16-30 year olds. They also have a new area of research – cell and gene therapy.

Could you tell us more about the cell and gene therapy research?

We’ve been looking at longer-term ways to benefit patients who have haematological disorders and cancer. We set up the cell and gene therapy service with the aim of facilitating the research and development of advanced cell and gene therapies – leveraging the donor register and umbilical cord bank in Nottingham to provide cellular materials for researchers and developers. We then support them throughout the process, development and scaling of this research. This is how we work with biotech and pharma companies to ultimately benefit patients in the long term. Partners include GOSH and ONK Therapeutics.

How did you adapt your services during the COVID-19 pandemic?

Anthony Nolan sends and imports stem cell donations from all around the world. This was a challenge when travelling was banned. We therefore set up the Heathrow Hub – a conference room at Heathrow where couriers would meet and swap stem cells and paperwork, then take them to the patient. We also have volunteer couriers who may spontaneously need to transport stem cells around the world. Many volunteer couriers are retired, with some having to shield through the pandemic. We therefore had to call out to staff and train them to be stem cell couriers. Lifesaving operations luckily continued, but transplant centres were pausing non-urgent transplants.

For support, we set up telephone emotional support services for patients and their families. We also introduced an emergency grant program for patients hit with the effects of a transplant and COVID-19. This provided financial support for those shielding, as well as ensuring that employers knew they could furlough extremely clinically vulnerable people who couldn’t work from home. We are now focusing our efforts on ensuring that those with transplants and their families get vaccinated.

How do you recruit people to the register?

The donor recruitment team usually recruit people face to face and spread awareness of the importance of the register, although this has not been possible this year.

It costs money to sign up to the register, so it’s really important that people who sign up understand what they are signing up for and go on to donate if they are a match. Education is incredibly important. People who sign up need to meet the joining criteria, join at a recruitment event or online, then be ready to save someone’s life!

Follow this link to learn more about how to sign up and what happens if you are matched.

Anthony Nolan has several initiatives to educate and recruit people:

  • The Hero Project – an educational programme delivered to students (16+) throughout the UK. This allows for education before registration, hits the target audience, educates teachers and opens conversations.
  • The Marrow-University volunteering programme –  student volunteers who recruit people on campus and raise funds to cover recruitment costs. 1 in 100 people who sign up through Marrow go on to donate, compared to a 1 in 900 chance in the general population.
  • Corporate partnerships – another lever for recruitment. For example, the Scottish Fire and Rescue Service delivers our education programme through a network of firefighting staff in hubs across Scotland.

Anthony Nolan now has materials available for supporter-led recruitment, meaning anyone who wants to run an event can order supplies online and recruit up to 30 people. The kit includes promotional materials and testing kits for workplaces to recruit employees. VMLY&Rx will take part in this scheme when the offices are open.

Many recruiting events are run by volunteers, most often donors and people who have received a transplant. Donor and patient stories are also incredibly powerful tools to get people to donate. Recipients and donors cannot meet for 2 years except for anonymous contacts. Following this period Anthony Nolan facilitates meetings if both parties would like to. Sean and Johnny’s story here is a great example.

What are the main reasons people don’t sign up, or drop out having first signed up?

People don’t sign up because of lack of understanding, leading to fear and perceived inconvenience. This is why education is so important.

As for those who have signed up, some people do drop out for health, personal or convenience reasons – but around a third of people on the register who didn’t donate couldn’t be found or contacted as they hadn’t updated their details! We are improving our use of technology to help us build more accurate records – creating contact journeys for people on the register that remind them to update their details.

To learn more about Anthony Nolan, visit their website or follow them on Facebook, Twitter, Instagram or YouTube.