Message to our members from Liz Carroll, Chief Executive

Written by Aaron Dennis, March 18, 2020

I know it’s a worrying time for everyone, but we also know our community are incredibly supportive and know what it’s like to be stuck at home. I want to reassure you that we are still here for you, and continue to work on your behalf to answer your questions and find ways to ensure you keep healthy and have some fun too.

We have currently postponed all of our face-to-face events; some have been postponed to later in the year, others we may look to do differently. We are testing a range of video conferencing tools and thinking about ways of bringing you together virtually, rather than physically. We’re starting this with our board meeting this week, so will see how things go. Do keep an eye out for news on how you can get involved. We have also temporarily closed our online shop while we plan the logistics of posting items, but we will update you as soon as possible – WHD is coming soon and we want to make sure you can get what you need.

For now, we have checked with our Clinical Advisory Group and there are no indications that having a bleeding disorder on its own will put you at greater risk of catching the virus. Some of our community will be included in the high risk groups as advised by government due to other treatment or conditions and should follow all official advice, as we all should. We are checking regularly for any updates as more is learnt about the virus and will share any relevant information as soon as possible.

In terms of access to treatment, we know due to Brexit preparations there were large stocks of treatment in the country that would have lasted 12 weeks with no additional stock being supplied, and we are checking what is in place to ensure security of supply longer term, but are confident plans are in place. We will of course keep you updated on this too.

If you have a hospital appointment booked, do check with your centre before travelling, they may be changing how appointments are held, or postponing non-urgent issues. One thing that will be important at this time is completing your Haemtrack records. This is a great way for your team to know if you are having a bleed, or are not managing to have treatment. 

We have also heard from the Public Inquiry team that the hearings that were planned for June and July have now been postponed until later in the year.

If you have any questions do let us know and we will do our best to find answers from reliable sources, so you know you can trust the information. We will continue to update information on any area we can that impacts the community on our website and on social media.

Where possible, we will also post newsletters to those who are not online, however if you don’t usually use email, but do have access, it would be really helpful if you could contact us with your email address giving us written permission to contact you via email for general updates, to save cost and ensure we can get messages to you if printers and postal systems struggle as time goes on.

Finally, I personally I want to say a huge thank you to everyone for being so understanding over the last few days as things changed at a fast pace. If nothing else, this has brought out our creative team spirit, so we hope to bring some great information, opportunities and (we hope) some fun to you soon.

In the meantime, spare a thought for our fundraisers who are absolutely essential to us as we lose many of our big fundraising events and income. Runners will need to keep training for a few more months (and stay off the cake and chocolate!) bakers will be drowning in cake, but hopefully you too will feel inspired to help us be here for you throughout this unusual time.