MDS patients after COVID-19 restrictions lifting: “I only see the risk getting greater with rising cases and people being less cautious”

MDS patients do not know to which extent they are still extremely vulnerable to the virus

The results of the SOAP study have now been published. They show that most MDS patients have developed either antibodies or T-Cell response to COVID-19, as a result of having been vaccinated. However, their protection against the virus  is not as strong as for healthy individuals.

Learn more about the SOAP study results: How effective is the COVID Vaccine for MDS patients?

This means that individual MDS patients do not know to which extent they are still extremely vulnerable to the virus.

Blood cancer patients: prisoners in their own homes

The end of shielding has left every single MDS patient anxious. In addition, the lack of awareness among the general public about their vulnerability has devastating consequences.

Blood cancer patients become prisoners in their own homes, as the outside world has stopped using masks and no longer abides by the social distancing measures. On top of this, the situation causes severe practical and even financial issues for many who are being pressured to return to work.

Daniel, an MDS patient and MDS UK member wrote to us:

"I am very worried about potentially returning to a workplace and mixing amongst people who no longer have to compulsorily wear a face mask or social distance"

Read Daniel's full story >

Rebecca's story

Rebecca, one of our members, wrote to us this week on this issue:

“The end of shielding is a worry in so many ways, the few times I have been out to appointments or local places so many are not wearing masks which I understand as its now personal choice but there is a lack of understanding for those who wish to continue wearing masks. As I waited in line for my flu jab a gentleman with no mask stood right behind me and i had to ask him to move back a bit out of my personal space. I had hoped recent times would make people more aware that some in the community are more vulnerable to infections and to give people space where possible.

For my family, the fact that I live with the uncertainty of how well vaccines work in patients like me, post stem cell transplant, is a great strain. Not being able to do more, go to more places and socialise more, for me this gives the feeling of guilt and many still don't understand why we have to be extra careful.

I lost my job when first having to shield partly due to having to shield and partly due to my health, I can't imagine how those vulnerable feel with the possibility of having to decide to go back to work and risking health or losing their income.

"I live with the uncertainty of how well vaccines work in patients like me"

From a practical side, I live in Cumbria and my specialist consultants are in London. This has meant i have not been able to go to face to face appointments for nearly two years, because of the risk of covid with travelling and staying overnight in a hotel.

This makes it so difficult when different hospitals don't have access to other hospitals' patient information, results or the means to get tests or specialist appointments booked quickly. I only see the risk as getting greater with rising cases and people being less cautious.

As someone who is now 5 years post stem cell transplant, with multiple health issues that put me at risk until vaccine efficiency is better known, I feel stuck: unable to see friends and loved ones unless outside at unbusy places, unable to go to social or leisure events, unable to go shopping anywhere busy such as supermarkets or clothing stores, the list goes on but I will be 'shielding' until we know more.”

Rebecca contacted her MP, Tim Farron, who then raised the issue with the then Secretary of State.

Disappointedly, Mr. NADHIM ZAHAWI MP, Minister for COVID Vaccine Deployment, responded with just a standard answer:
"The Government has advised that, from 1 April, those who are clinically extremely vulnerable do not need to shield. This is because, since the national restrictions and shielding measures were introduced, the number of COVID-19 cases has fallen considerably across all parts of the country and prevalence rates are now significantly lower.”

As a charity and support group for those living with a rarer blood cancer, and working alongside our umbrella organisations, the Blood Cancer Alliance, and Cancer52, we call on all MPs to raise this topic in parliament with ministers. We also call on the APPG for Blood Cancer to assist in this task.

Please send us your story, we need as much evidence as possible.

Help us explain the situation to ministers, employers and the DWP.

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