⚠️As infection levels in the UK continue to rise, we want to reiterate exactly what you need to do if you're immunosuppressed and think you have Covid.

It's important to act quickly so you're able to access the new antiviral and antibody treatments available to you 👇 First, confirm your diagnosis using a Government-supplied lateral flow or PCR test immediately.

Immunosuppressed people should all be sent a pack of lateral flow tests, but if you don't have any you can order more here if you're eligible:

gov.uk/order-coronavi…

It's #MyelomaAwarenessMonth & we're going to share some facts about #myeloma

First things first... what is #myeloma?

Myeloma is a type of #bloodcancer that affects plasma cells in the bone marrow.

Keep reading to find out more & help us educate others by giving us a RT

1/6 Did you know...

That the acronym 'CRAB' is used to remember the common symptoms of #myeloma?

Each letter of CRAB stands for something that causes the symptoms of myeloma.

Find out what they are 👇
2/6

This month @sajidjavid assured Parliament that immunocompromised people in England would continue to get free asymptomatic Covid tests.

But last night, the Govt announced the immunocompromised would only get tests to use if they have symptoms. 🧵(1/6)

https://twitter.com/bloodcancer_uk/status/1498930221864689664

We’re disappointed the Govt has changed its mind on this.

Without asymptomatic testing, immunocompromised people can’t get an early warning if they think they may have been exposed to Covid. (2/6)

NEW: Next week, the Government will announce its 'Plan for Living with Covid-19' in England🧵... Around 500,000 people in the UK are immunosuppressed, including people living with blood cancer and stem cell transplant patients.

Many do not get the same level of protection from the COVID-19 vaccines as everyone else.

🩸 We were started in 1960 by a family who lost their 6-year-old daughter to leukaemiaand so funding research into childhood blood cancer has always been a key part of our work.

🔬So this International #ChildhoodCancerDay we wanted to share just how far our research has come... 🎉 Improvements to blood cancer treatments now mean 89% of children survive leukaemia and lymphoma, up from 79% 20 years ago!

🤗This means that 700 more children and young people survived blood cancer who wouldn’t have done if the survival rate had stayed the same. #ICCD2022

We’re concerned the Government have announced plans to bring forward the scrapping of isolation rules in England and know how much anxiety and anger it will cause for people in our community.

🧵1/5

https://twitter.com/BBCBreaking/status/1491387487687786500

We’re yet to see the Government set out their plan describing how the country will learn to live with Covid, specifically how people with blood cancer and others who are immunocompromised will be able to return to a normal life.

2/5

This is the news we like to hear! 🙌 🎉

Two people with leukemia who were first to receive CAR-T cell therapy remain “cured” after 10 years. ❤️

https://twitter.com/Independent/status/1489855316036669440

...Since then, this treatment has been approved in the UK for some people with leukaemia and types of lymphoma. It is also currently being looked at as a potential treatment for people with myeloma too 🩸

1/ Last night, the Govt issued new guidance for everyone who is clinically extremely vulnerable, but we need specific support for 500,000 people within the group who have compromised immune system and who, as this guidance recognises, the vaccines may not work as well for. 2/ If the Government thinks this constitutes adequate support for people with blood cancer at a time when many of them are hugely worried about the spread of the virus, I am afraid we can add it to the long list of times the Government has let them down.

1/ @PHE_uk has now added a line to its press release to make clear immunocompromised people may not respond as well to covid vaccines.

https://twitter.com/bloodcancer_uk/status/1413908090966233090

2/ We’re pleased to see this. While there are aspects of its press release that are still misleading, it is good they have at least now acknowledged there is still lots of uncertainty about vaccine efficacy in immunocompromised people.

⚠️A press release and several articles have been published this afternoon with misleading information about how the COVID vaccines “work well” for people who are immunocompromised.

Thread 👇 (1/6) The study they refer to groups all “immunocompromised” people together, of which vaccine response is only looked at in a small number of people. (2/6)

🏴󠁧󠁢󠁥󠁮󠁧󠁿🇩🇰 As we all get ready for #ENGDEN, we’re thinking back to 3 years ago, when @England were also playing on a Wednesday in a major semi-final.

Our #WasitcoatWednesday took the country by storm! ⚡️

mirror.co.uk/interactives/w… We had memes…

https://twitter.com/bloodcancer_uk/status/1016652261097959431?s=20

1/ Many of you will be concerned about what this evening’s announcement that restrictions in England will be lifted on July 19 means for you. 2/ People with blood cancer are unlikely to have got as much protection from the vaccines as people without cancer, and so many of them will be worried about whether lifting restrictions is sensible at a time when the infection rate is rising.

💬 "My daughter Emma died tragically of #leukaemia aged just 7 months in 2012. Being a bereaved parent is a uniquely awful experience, I have found losing a child to cancer particularly traumatic. The isolation I have felt is unimaginable.”

#NationalBereavedParentsDay "What does help me is Emma having a legacy. We do this through our fundraising for Blood Cancer UK and have created Team Emma who do events in her memory.”

It's #ResearchSpotlight time! Today, we're shining the spotlight on Professor Francesco Forconi...

🔬 Follicular lymphoma and diffuse large B cell lymphoma (DLBCL) are the two most common types of non-Hodgkin #lymphoma. We can treat this disease, but many treatments have harsh side effects.

💊 Professor Forconi from the University of Southampton wants to find better ways to treat these diseases.

1/ People with blood cancer will be concerned by this news. We have been worried about how much protection the vaccines will give people with blood cancer because vaccines do not usually work as well for people with compromised immune systems.

https://twitter.com/bbcnews/status/1369897146649042945

2/ This study, while not peer reviewed and only looking at a small number of people, adds to that concern.

1/ THREAD: With many schools going back on Monday and the infection rate now high across the country, we are concerned that parents who have blood cancer are not being considered in the Government’s decisions. 2/ Where schools are staying open, the Govt urgently needs to give advice and support for parents with who are vulnerable. This include ensuring high-quality home learning is in place, so children don’t fall behind if they have to stay at home to protect the health of a parent.

BREAKING: people with blood cancer who are extremely clinically vulnerable have been moved up the provisional priority list for a vaccine. They are now at the same priority level as people aged over 70. This is great news! /1 Previously, younger people with blood cancer were only expected to get a vaccine after everyone aged 65+ had been offered one. But the new priority list better reflects the fact that people with blood cancer are especially vulnerable to #COVIDー19. /2

⚠️ The Government yesterday published guidance for people in England who are clinically extremely vulnerable (CEV), for after England returns to the tier system on December 2nd.

Here are our thoughts (thread). 1/
gov.uk/government/pub… It says: “your employer may be able to furlough you under the Coronavirus Job Retention Scheme, which has been extended until the end of March 2021”. 2/

👧 Supporting your child's mental health 👦

(A thread...) 👨‍👩‍👦 Our Support Services Team have been hearing from lots of people who's children are experiencing anxiety around going to school, and are worried about the risk of bringing the virus home with them and infecting a parent who has #bloodcancer. 1/

⚠️ Shielding announcement - 22/06/20 (England only) ⚠️

Shielding has been incredibly tough for many people, but this blanket approach to lifting it is only going to add anxiety in many cases. 1/ This announcement does not give people greater freedom, as the shielding guidelines have only ever been optional.

Instead, it risks taking away people’s freedom not to go to work or to the supermarket if they do not feel it’s safe to do so. 2/

Today is #BiomedicalScienceDay2020 - and what better way to celebrate than sharing our latest #ResearchSpotlight with you all!

🔬 This month we're celebrating the work of Professor James Allan, who leads on a Blood Cancer UK funded project and is based at the @UniofNewcastle. 💉 James' work is about understanding how unique genetic changes in acute myeloid leukaemia (AML) can be used to tailor treatment.

🧓 AML is most common in the elderly and many of these people cannot have #chemotherapy because of the harsh side effects it causes.