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An update from Liz Carroll, Chief Executive

It seems a lot longer than a week ago that I wrote my first blog. This week we’ve been working really hard to try and ensure that we answer the questions that you have and ensure that you have information to help you manage at this difficult time.

One of the questions lots of people have been asking us is how will we make sure that there is enough treatment for you and your family? We’ve been able to speak to the commissioners and the people responsible for ensuring that you have access to treatment and home delivery across the UK, and we’ve been reassured that there is plenty of treatment available.

Supply chains are well set up and the home delivery companies have been working really hard to ensure they can continue to deliver through the next coming weeks and longer if needed. Where you don’t have home delivery, in Northern Ireland for example, the centres have asked that you continue to do what you normally do, ring them up, come and pick up the treatment as normal, and if you’re not well enough or there’s a reason why you can’t pick up the treatment they will arrange something with you.

We hope that will reassure everybody that you will continue to get your treatment in a timely way.

The other thing we have been talking to people about is when you have an appointment booked what should you do? Most haemophilia centres are switching to phone appointment so you should be able to give them a call, they will let you know what they want you to do, and hopefully consultations will continue just in a slightly different way.

If you are worried about whether you or a family member have had a bleed do exactly the same as you normally do – ring your centre and they’ll advise what to do, they might be a bit busier than normal because they might be helping colleagues in the rest of the hospital but they are still there for you and have encouraged you to ring if you have any concerns.

The other thing that would really help is for everybody to fill in their Haemtrack record. We know that not everybody fills it in but actually it makes a really big difference to the haemophilia team and they can keep an eye on what’s happening, and they’ll call you if they think there is a worry.

There have been some changes recently, so if as a parent you used to have three different devices for your children you can now do it all on one device so it is worth having a look if you haven’t been on for a little while. That will make a big difference to keeping everybody up to date with what is happening for you.

We’ve also been looking at how we can support you going forward. It is really tough when you’re stuck at home and you can’t go out so we have some ideas for what you might be able to do to keep yourself occupied. Whether that’s some exercises that the physio has recommended, some craft ideas that might help people going forward, the goods that you produce might be very beneficial for others in our community at a later date. And we’ll be bringing those to you during the week.

If there’s anything you particularly want us to find out for you or work with our clinical advisory group then let us know you can send us an email to info@haemophilia.org.uk or give us a phone call on 020 7939 0780.

We’ll continue to provide updates during the week and share them on our website and on social media where we can so if there is anything you’re looking for that is your first point of call but if there is extra information that you would like us to find we will do our absolute best.

I hope you have a good week, do get in touch with us if there is anything we can do.