Ask the Experts - Winter Worries - Continuing the discussion

Hi there - please keep an eye out for the session ljnk being posted. There were technical difficulties tonight so we have recorded the session. Hope you find it of interest

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Our apologies again that a technical issue meant we weren’t able to stream this event live as planned. Thank you all for your patience!

The recording of the event is up now on YouTube.

Gemma, Lauran, Jude and Nick had a great discussion and we’d love to carry it on here.

If you have a winter worry we didn’t cover, please share it here so our Support Team and other people affected by blood cancer can share their thoughts - and if you want more information on anything we covered, don’t hesitate to get in touch.

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Hi Lousy T,

I must say that I agree with your concerns. I find it disgusting that when seeing one of my GPs last year, he was not masked, although at least he had the window open. When having medical appointments, which unfortunately have been many over the last few months, I always ask that the person I am seeing to wear a mask if not already doing so and explain my situation. They are usually most agreeable to this. However, this is something that I should not have to do. I sometimes get that “government policy says that we do not have to do this” type of responses, but they do mask-up for me eventually.

People seem to have short memories about us vulnerable folk, but medical professionals should know better.

A month or so ago I had to attend two different hospital A & E departments and seating was all wedged together. I have Chronic lymphocytic leukaemia (CLL) and no way would I want to sit with an unmasked people for several hours in an A & E setting or GP surgery setting. Therefore, I managed to find or asked for an individual seat, so I could sit away from the unmasked. I should not have had to ask for this in a medical sitting. (By the way, I always wear FFP3 masks for maximum protection when attending medical appointments, plus also when being inside places such as indoor malls, etc.).

As I said, hospitals and surgeries should know better.

Perhaps BCUK can contact Trusts throughout the UK about making sure that hospitals and surgeries and other medical facilities could arrange for separate seating for us vulnerable folk.

I am also concerned about Nice restricting the use of Antivirals for us. Again, can BCUK do their utmost to see that this does not happen.

So glad Lousy T you brought these subjects up. Take care.

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Hi @Lulu999, thank you so much for sharing this, and your concerns raised here are very understandable. I just wanted to reference a forum thread, in which Alice’s response there summarises what we know about NICE’s draft guidance, and what Blood Cancer UK are doing in this area-
(Just seen this in Sunday paper - COVID-19 (Coronavirus) - Blood Cancer UK Forum). I hope this is helpful.

As ever, please don’t hesitate to reach out to us if you need any support at all or wish to talk anything through. We are here for you. (0808 2080 888 or support@bloodcancer.org.uk).

Best wishes,
Tanya.

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Have to say I was shocked recently when we visited wife’s sister in an English hospital. NOONE was masked, staff or patients. Up here in Scotland, almost all “medical settings” (GPs, pharmacies, opticians, even dentists) request, though they don’t enforce, mask wearing. Masks can certainly cause communication problems, and there are already plenty of those surrounding our conditions, but surely this inconvenience pales into insignificance compared to the risk of COVID infection to the potentially immunocompromised like many of us?
The continuing impasse over Evushield and the difficulties with the other antivirals has become shameful. Are blood cancer patients to be relegated to “potentially disposable”?

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