Aplastic anaemia is now listed as a condition on the NHS inform website – after Stuart McMillan MSP highlighted the need to provide more publicly available information about the rare and life-threatening blood disease.
The Greenock and Inverclyde SNP MSP raised the issue with NHS 24 after being contacted by a constituent regarding The Aplastic Anaemia Trust (The AAT) campaign, which was launched on Aplastic Anaemia Awareness Day, 4 March 2024.
The campaign highlighted how the lack of information about aplastic anaemia on NHS inform’s website impacts patients – claiming it makes it harder for them to ask for the support they need from family and friends. This is a particular issue because the serious condition is often confused with having an iron deficiency.
The AAT also outlined how the lack of information from a trusted source like the NHS leads to difficulty for patients in taking extended time off work for life altering treatment, including bone marrow transplants, and often results in patients struggling to access benefits.
Stuart reached out to The Aplastic Anaemia Trust (the AAT), the only charity in the UK focused on the condition, to ensure their involvement in the drafting process for NHS inform’s webpages.
Commenting, Stuart said:
“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.”
Linzi Kavanagh, Support and Outreach Coordinator for The AAT in Scotland said:
“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, Consultant Haematologist at Queen Elizabeth University Hospital, who gave us his time to produce the content for the new pages.”
Families were keen to thank the team at NHS 24, Stuart McMillan and The AAT for campaigning to add the condition to NHS inform’s website.
Natalie from Aberdeen whose son Layton was diagnosed with aplastic anaemia at age 13, said:
“People have a limited understanding of the condition and there are many misunderstandings. Having facts on a trusted website will help educate and hopefully might in some way limit emergency admissions.”
Layton, who is now 14 and had a bone marrow transplant in September, added:
“My school did not understand that this was not just normal anaemia, and that I would be off school for a long time.
“It will help people get diagnosed faster and will give others an insight to what is going on.”
Dr Ron Cook, NHS 24’s Medical Director said:
“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.”
