Aplastic anaemia is now listed as a condition on the NHS Inform website!

We launched our campaign to Add AA to the NHS website on Aplastic Anaemia Awareness Day last year (4th March 20204). Since then, 3690 of you signed the petition, and hundreds wrote to your elected representatives for help.

Stuart McMillan, SNP MSP for Greenock and Inverclyde, raised the issue with NHS 24 (Scotland’s provider of digital health and care services, including NHS Inform) after being contacted by a constituent, and they got in touch with us. 

The AAT highlighted how the lack of information about aplastic anaemia on NHS inform’s website impacts patients – and explained how this makes it harder to ask for the support they need from family and friends. 

With your help, by sharing your stories and quotes, we explained how the lack of information from a trusted source like the NHS leads to difficulty in taking extended time off work for life-altering treatment, including bone marrow transplants, and often results in people struggling to access benefits.

The NHS 24 team understood why this was important, and agreed to write the content. We assembled a group of volunteers from our community reference groups who met with their content team to let them know what the page needed to say. After this meeting, the content team decided to write three pages about aplastic anaemia! They worked with Ellie Dawes from The AAT and Dr David Irvine, Consultant Haematologist at Queen Elizabeth University Hospital, to create the content. 

The pages are now live on the NHS Inform website, and you can see them here:

Check out the new pages

When I was first made aware of aplastic anaemia, I immediately thought it would be related to iron-deficiency – but when I checked The AAT’s website, I realised it is a serious blood disorder caused by the bone marrow not functioning properly.

Worryingly, when I tried to search for this on the NHS inform website, it pulled up pages relating to iron deficiency anaemia, which is clearly a very different, and much more treatable and milder, condition. I therefore understood why having this added to the list of conditions was important.

I’m therefore delighted that the AAT were able to work with NHS 24 staff to bring together the appropriate people to ensure the information is accurate and what people are looking for.

Stuart McMillan, MSP

NHS 24 is pleased to work collaboratively with the AAT to provide accurate and trusted advice for those seeking more information and guidance on aplastic anaemia. This partnership ensures that patients and their families have access to reliable information, helping them navigate the challenges of this rare condition with confidence and support.

By working together, we aim to raise awareness about aplastic anaemia, improve patient outcomes, and ensure that those affected by this condition receive the care and support they need.

Our collaboration with the AAT highlights NHS 24’s commitment to providing high-quality, accessible healthcare information all patients in Scotland.

Dr Ron Cook, NHS 24's Medical Director

This is so important for people all over the country who are facing a confusing diagnosis, that they have to explain again and again – to their boss, healthcare professionals, to friends and family. We’re absolutely delighted to see these pages go live. The AAT would like to send heartfelt thanks to Stuart McMillan MSP, every person who signed and shared the petition and wrote letters, and to the NHS 24 digital content team who understood why this was important and have crafted such brilliant content with us. Huge thanks too to Dr David Irvine, who gave us his time to produce the content for the new pages.

Linzi Kavanagh, Support and Outreach Coordinator for The AAT in Scotland

Natalia and Layton

Joshua

Joshua has aplastic anaemia and lives in Edinburgh. "Much of my family misunderstood the diagnosis as being closely related to anaemia, and didn't take it as seriously at first. A family member even organized a meeting with a dietitian and sent loads of supplements, not understanding the severity of aplastic anaemia or that it has little to do with diet. It was challenging when I was first diagnosed, turning to learn more from trusted sources like the NHS website and not be able to find anything there. I felt confused, isolated, and scared. Thankfully I found The Aplastic Anaemia Trust, who provide a wealth of vital information."

Joshua was delighted to hear the new pages had gone live, "I was absolutely thrilled and I'm still buzzing. I wrote to every MSP representing Edinburgh with the appeal. This is so important as many of the NHS staff at the haematology ward I attend regularly for blood testing and transfusions are unfamiliar with aplastic anaemia, and they have to rely on other sources for information. With this new page, NHS staff now have an official NHS resource to help them better understand the condition. Being able to refer family and friends to the NHS website will help prevent having to repeatedly explain what the condition is, or how it differs critically from traditional anaemia. Thank you all so much. It was incredibly uplifting news to learn we had been successful in the campaign, and none of it would have been possible without all of you."