Help and Resources Resources & support Add Aplastic Anaemia to the NHS conditions website Donate Fundraise Aplastic Anaemia is a rare and life-threatening blood disorder caused by the bone marrow not functioning properly. In people with aplastic anaemia, the bone marrow fails to produce enough of all three types of blood cells. People with aplastic anaemia are treated in the same wards as people with blood cancer and receive similar treatment (for example they may have chemotherapy, or a bone marrow transplant). But you won't find any mention of Aplastic Anaemia on www.NHS.uk. Sign the petition Write to your MP The Aplastic Anaemia Trust have tried a number of times to contact the NHS website team with this request, but with no success. That’s why we’re launching this public campaign, to help spread the word to see if we can contact anyone who might be able to help. Being diagnosed with a serious condition that no-one has heard of means having to explain again and again what the condition is and how it affects you. It’s a burden that will be familiar to many people with a rare disease. But for people with aplastic anaemia, the situation is made worse by the fact that, to most people, aplastic anaemia sounds like it's the same thing as having an iron deficiency. This common confusion means that people with aplastic anaemia will often have the severity of the condition underestimated by friends, family, employers, even by non-specialist medical professionals – like their GP. Aplastic anaemia has nothing to do with iron deficiency anaemia. In fact, the treatment for aplastic anaemia sometimes means that people with the condition have too much iron in their blood – so the confusion is potentially dangerous. And yet, if you search for aplastic anaemia on the NHS website, because it isn’t listed, all the results you will see are for Vitamin B12 or Iron deficiency anaemia: People with aplastic anaemia have a serious condition that is likely to affect their ability to work or attend school, their friendships and relationships. But it's likely that they will never meet anyone else with the condition, and that noone in their life will have ever heard of it before. The Aplastic Anaemia Trust have heard from people unable to access the benefits system because the assessors do not understand the condition. No wonder that half (50%) of people affected by aplastic anaemia or a similar rare condition would like advice on how to explain the conditions to others, with 54% describing the level of public understanding of the condition to be ‘no understanding at all’.* The NHS is the authority for health information in the UK. Having a page about aplastic anaemia on the NHS website, which people can use to explain their condition, would make a real difference. That's why The Aplastic Anaemia Trust are asking for the NHS website content team to add aplastic anaemia to the NHS website. And we're offering to help in any way we can to make that happen. What can we do? 1. Sign our petition We are not expecting to attract thousands of signatures on this petition. Just 2 in a million people are diagnosed with aplastic anaemia! But we hope that by asking those who understand this to sign this and comment with how this might help them, we can show the NHS website team that adding aplastic anaemia to their list of conditions is really important to our community. Sign the petition now 2. Write to your MP Your MP's job is to represent you. Write them a letter or email today to ask for their help in adding aplastic anaemia to the NHS conditions website. You can find your MP's name, email address and social media accounts by searching for your postcode on the website They Work For You:Find your MP We have created a template letter for you to use, which you can send in the post or by email: Read the template letter We recommend you take a couple of minutes to personalise your letter and add in a few sentences about how having aplastic anaemia listed as a condition on the NHS website would impact you. 3. Ask around! Do you know someone who might know someone who might know who we need to talk to in order to list AA on the NHS website? Please get in touch by emailing Ellie at [email protected] We think adding AA to the website is so obviously important, we just need to reach the right people and explain it to them. We hope that by sharing this campaign, we might reach the right person who will read this page and know how to help. We've created a campaign poster for you to share. You can download it here If you've had a response from your MP that is similar to this. Here is what you could respond with; Ask them if there is a process for you or The Aplastic Anaemia Trust to submit evidence of user needs for their consideration. We would like to know whether it has been considered that a search on the NHS website for aplastic anaemia brings up results for other, less serious conditions that the condition is commonly confused with. This should make this an urgent case for inclusion. In this case, the rarity (and common misunderstanding) of the condition makes inclusion more important, not less important as is suggested by the content team's reply. The Aplastic Anaemia Trust have offered to work with their Research and Clinical Advisory Panel (made up of world-leading NHS experts in the condition) to produce and review draft content for the website. This could be modelled on the content that the NHS has already approved for inclusion on the Great Ormond Street website, which simply needs to be adapted to include adult aplastic anaemia patients. We believe that adding aplastic anaemia to the NHS website would save the NHS money and time. At present, aplastic anaemia patients are individually requesting explanation letters from their clinical team to explain the condition at work or school. To add aplastic anaemia would mean these patients could simply share the information page, saving busy doctors valuable time. Have you seen this article that the Mirror wrote about Lizzie, Patrick and our petition? Read it here Questions people might ask Surely the NHS can’t be expected to list every ultra rare condition on their website? The fact that aplastic anaemia sounds like a less serious condition which does have a listing on the NHS website makes an urgent case for the condition to be included. Other equally rare conditions are listed on the website, with signposting to the charities that can support people with those conditions. Is it a good use of NHS time and resources to create this page for just a few people? The Aplastic Anaemia Trust can write the copy for this page and have the content reviewed by the UK’s leading experts in the condition, who work for the NHS and who sit on our Research and Clinical Advisory Panel. Why do we need a page about aplastic anaemia on NHS.net when a page about the condition already exists on the Great Ormond Street NHS Website? We are pleased that aplastic anaemia is listed on the Great Ormond Street website, and suggest this NHS approved content could be adapted to include adult AA and replicated on NHS.net Great Ormond Street is a children’s hospital, and aplastic anaemia can affect people of any age – in fact it is more common in both younger and older people. The fact that aplastic anaemia is listed on the GOSH website and not the NHS website is misleading – it suggests the condition only affects children, which is false. Have you tried contacting the NHS website team using the "Contact the NHS website team” link?Yes we have done this several times as well as contacting everyone we can think of who works in the NHS. We encourage you to contact them too and let them know that you support our request to add aplastic anaemia to the NHS website, and let them know how this would impact you. Convinced? Sign the petition *Figures from Rare Voices report, 2023, super-rare.org/report Manage Cookie Preferences