On Aplastic Anaemia Day in March, many of us took the time to sit down and write an email to our MP or MSP to ask for their help adding aplastic anaemia to the NHS website.

Some of us never got a reply. 

Others were pleased to hear  back that their MP or MSP  had contacted the NHS Content Team, but they had been passed back a generic response. The response said that "new content on the website would be considered according to user need."

We updated our suggested email template and lots of you wrote back to your MP again. "We are highlighting a user need! Where do we send this evidence to?"

We're really pleased to let you all know that all your signing and writing is making a difference. Here's what we've achieved so far...

Our campaign in The Mirror

Shortly after we launched the campaign, we were so happy to see it mentioned in The Mirror newspaper, thanks to Lizzie who was telling her story to the paper, and made sure she told them all about it! You can read the article here

Approval in Scotland!

One of the MSPs who received a letter was Stuart McMillan MSP for Greenock & Inverclyde. Stuart submitted a question and he and Seonaid in his office highlighted the issue with the NHS Inform website team, and they gave us the opportunity to apply for the work to be completed.

We have just heard that this request has been approved - and we'll be working with the website team to have aplastic anaemia added to the website!

Special thanks to Laura, whose husband Craig was diagnosed this year. Laura works in the NHS as a midwife, and provided this explanation of why adding this information to the website is important to them, which we included in our application:

When Craig first had symptoms, we thought it must be leukaemia. You research the symptoms and that’s all that comes up. Then when we heard that they thought it might be aplastic anaemia, we were waiting two weeks for the Bone Marrow Biopsy to confirm it, and you’re googling and trying to do research and most of what we could find about aplastic anaemia was medical studies, information aimed at clinical professionals. It feels very daunting – there's next to nothing about it in layman's terms, explaining what it means for normal people who are diagnosed with it.

Craig is self employed and can’t get sick pay. We were turned down for financial support (ADP) and it was clear from the response that the person assessing our claim thought he had [iron deficiency] anaemia. Next to where we’d put details of how far he could walk, they’d put comments like the issues you report are not consistent with your condition” and “on the balance of probability, it is likely you could do this task. It was only by appealing with the support of The Aplastic Anaemia Trust that we managed to explain to them what aplastic anaemia was.

I work in the NHS and of course as a midwife, sometimes I’d look a condition up online if a patient’s been diagnosed with something I’m not familiar with. I would definitely look for what’s on the NHS website, so I can be sure what I’m saying to the patient is correct. So I’m sure that NHS staff would look up aplastic anaemia in the same way. Even in haematology, where Craig goes twice a week, the junior doctors still don’t really understand the condition. They assume he’s on the same treatment plan as people in there for other things. We have to speak directly to the consultant if we want to ask anything.

Next steps for the rest of the UK

Meanwhile, you continued receiving replies from your elected representatives, and sharing them with us. In response to her call for an opportunity to submit evidence, Karina's MP, Lia Nici sent her this promising response:

I have been asked to respond. I have passed on your further concerns to the Digital Citizen team for their consideration. We have also received a small number of letters from MPs in recent months about this issue, as well as direct contact from the Aplastic Anaemia Trust. In response to [Karina's] direct questions about submitting evidence of user needs, the team have advised that individuals can email this information to...

This is really encouraging, as it means all your letters have been noticed! Thank you so much to everyone who has raised this issue.

What we're doing next

  • We'll be working with the NHS Digital team in Scotland over the next few weeks to draft the content for the NHS Inform website, with clinical input from members of our RCAP and referring for feedback to our Youth Board.
  • We're putting together a pack of evidence to send to the email address Karina's MP recommended
  • Our Youth Board are writing a personal letter, which we'll be sending to the new health minister and including in our pack of evidence of need.
  • We're working with new big charity partners to get more aplastic anaemia information out there. This week, a new page about aplastic anaemia went live on the Teenage Cancer Trust website, with huge thanks to Rosie and their team - and for input from our RCAP and Youth Board! 

What you can do next

Get ready to write to your new / returning MP after the election! 

On Monday 8th July, we'll all have our elected representatives back in office, and many of us will have new ones! We know that the number of MPs raising this issue has made a difference. Could your new MP do for your country what Stuart McMillan has delivered for people with aplastic anaemia in Scotland?

 If you're in England, Northern Ireland or Wales, put the date in your diary and write to your new representative on that date, you can find a template letter and details of how to do this here

Add your experience to our bank of evidence

If you have examples of how the lack of awareness and understanding of aplastic anaemia affects you and the people you know - then email us! We can use your words to publicly call for aplastic anameia to be added to the NHS website, and we'll collate these in the evidence pack we're collating to send to the NHS content team. You can email Ellie, our Head of comms, at [email protected].

Keep sharing and signing the petition! 

Our petition helps us show that although aplastic anaemia is rare - thousands of people care about this.

Keep sharing and signing!


Donate

We can stand up for people affected by aplastic anaemia because our community fund us. If you think the work we do is important, any donation large or small helps us to keep that work going. Thank you!

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