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Why we've decided to push the NHS on vaccine effectiveness

2nd Jul 2021

As much as we don’t want to have to push the NHS to do even more, there are still lots of people with blood cancer who don't have all the information they need to judge their level of risk. Our responsibility lies with them.

We've called on the Government and NHS to communicate with every immunocompromised person to tell them that the covid vaccine may not be as effective for them (Coverage: Sky News, The Times, The Metro).

Why we've made the decision to publicly push the NHS on this issue

Firstly, we know that one of the impacts of the coronavirus pandemic has been the effect it has had on the mental health of people with blood cancer and those around them.

Our support team have been working with people every day to help manage this anxiety, and we know this can range from the mild to the severe, and can be triggered by different things for different people.

But one of the things we know can be difficult for some people, is to be constantly reminded about the dangers of Covid and the challenges our community faces. Earlier in the pandemic, this was around the increased risk from Covid if you have blood cancer; now, it is about the questions about how effective the vaccines are for our community.

Finding the right balance

In every communication we put out, we try to balance the potentially lifesaving impact of our health messages with not wanting to make people’s mental health worse. Hopefully, this is a balance we get right more than we get wrong, but we’d love to hear your views on this.

Against this background, we’ve thought long and hard about our call for the NHS to write about vaccine efficacy to everyone affected by blood cancer, as by talking about this there is always a risk that we will add to the anxiety people are already feeling. We also know that the NHS has been brilliant during the pandemic – when we were all out on the doorsteps clapping for it, no one was clapping louder than us – and so we’re very reluctant to call them out publicly.

But in the end, reluctantly, we’ve decided that we need to talk about this. The fact that 80% of people on our survey had not been told by the NHS, as well as the increase in calls to our support service following this message from guests on shows like The Lorraine Show told us that the risk of not doing this was too great.

Keeping our community safe is our top priority

As much as we don’t like the idea of criticising the NHS and demanding that it does more, we hate even more the idea that there are lots of people with blood cancer who are making decisions about their level of risk without having all the information they need.

So in the end, speaking out about this was an easy decision. We hope that it will convince the NHS and the Government to start communicating with people who are immunocompromised and their families. The more the message appears in the media and on social media, the more people will find out about it and have the opportunity to be more informed about their individual risk.

We’re constantly listening to our community and doing everything we can to represent their needs to decision makers such as NHS and Government, but the more feedback we get the better. If you’d like to see us doing things differently, please get in touch.

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