Copy and paste, and then edit the below to write to your MP about adding aplastic anaemia to the NHS website.

Your letter will have more impact if you use your own words and personal experience, so please do edit and replace bits of what we've suggested below, or write your own from scratch!

Add your address to the top of your letter.
This lets your MP know that you are a constituent of theirs.

Dear add your MP's full name

Tell them your name and whether  you / a family member have aplastic anaemia. 

I am writing to ask you to use your influence or offer advice about how we might ensure aplastic anaemia is added to the list of conditions on the NHS website as soon as possible.

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 often receive similar treatment.

However, unlike other similarly  rare conditions, aplastic anaemia is not listed as a condition on the NHS website. 

This is a particular problem because aplastic anaemia is frequently confused with "being anaemic" (having an iron deficiency.) Not only is aplastic anaemia absent as a condition on the NHS website, but when you search for it you are presented with pages about iron deficiency and other, less serious conditions, making this confusion worse. This makes it difficult for people with aplastic anaemia to ask for the support they need from family and friends and leads to difficulty with taking extended time off work for life altering treatment, including bone marrow transplants. It also results in people who are seriously ill struggling to access the UK benefits system. 

I know other MPs who have tried reaching out to the NHS website team about this have received a copy-and-paste response that "new content on the website would be considered according to user need."

I would like to know if there is any other way to submit evidence of user needs for their consideration. (So far, over 2300 people have signed a petition about this, which is a very significant number for a condition affecting just two in a million people.) We would specifically 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.

Previous replies also cite the need to take into consideration "the need to base new content on trusted, evidence based source material." But there is already a page about aplastic anaemia on a different official NHS website, Unfortunately the fact that aplastic anaemia is listed on the Great Ormond Street Hospital website and not the NHS website is misleading – the content suggests the condition only affects children, which is false. The Aplastic Anaemia Trust has offered the support of several NHS consultants - world-leading experts in the condition - to update this NHS content to include adult patients so it can be added to the NHS conditions website. 

Any advice you can provide on how  we might prompt an answer to these questions, and hopefully add aplastic anaemia to the NHS conditions website as soon as possible would be very much appreciated.

Yours sincerely, 

Other points you could make: 

  • The need to explain the condition and its impact to family, friends, workplaces and schools without any NHS webpage to summarise is taking its toll on the community. The recent Rare Voices report shows high levels of anxiety and isolation in people with aplastic anaemia or a similar/related condition, and reports that over half would like more support with navigating the healthcare system, and 50% would like advice on how to explain the condition to others.

  • Many patients go to clinicians for letters that explain the impact of the condition, to take to employers. Having aplastic anaemia on the NHS conditions website would save NHS staff time and improve the mental health of aplastic anaemia patients. The Aplastic Anaemia Trust have leading NHS haematologists on their Research and Clinical Advisory Panel and have offered to draft text for a webpage.