Keeping safe as rules change

Keeping safe as rules change

In recent weeks there has been a lot of news about the Government’s plans to help the UK return to normal as people learn to live with COVID-19. For many, this is a welcome discussion that means freedom from restrictions and rules. For others, it is met with caution and worry about exposure to COVID-19.

For myeloma patients and other clinically extremely vulnerable people in England, one of the most concerning announcements was that the Government plans to stop the legal requirement for self-isolation when a person tests positive for COVID-19. This has caused concern that patients will be coming into contact with people with COVID-19 more frequently and will, therefore, be at greater risk of catching it.

The things you can do to keep yourself safe

Although these changes are outside of your control, there are things you can do or keep doing to lower your anxiety and protect yourself from COVID-19.

Focus on the things you can control

It may be difficult but focusing on what you can control or change can help you accept the things you have no control over. You can control your routine, who you see and what you do, and small changes to these can make a big difference to your wellbeing.

Plan ahead

You are in control of where you go, when you go, and who you meet. You can plan to meet at quieter times or in quieter, more open, outdoor places.

When making a booking at a pub, restaurant, or beauticians, ask questions about the layout and the measures they have in place to make sure you are comfortable with the level of precautions they are taking. You can also request extra precautions, such as more space, a table away from busy areas and walkways, or a private appointment with your hairdresser or beautician.

Remember, you can always leave or cancel if you feel uncomfortable or change your mind at any time.

Review your work arrangements

Talk to your employer and tell them (or remind them) you are high risk from COVID-19, previously on the clinically extremely vulnerable list, and you need support to protect yourself from COVID-19.

Employers have a legal responsibility to protect their employees and others from risks to their health and safety. They may be able to allow you to continue working from home, change where or when you work or provide extra safety measures to minimise your interactions with others.

If you are worried about going to work, try speaking to your occupational health service, health and safety representative or human resources team. You can also get advice from your workplace union, Citizen’s Advice, or ACAS.

Have open and honest conversations

Talk to people you are meeting in person, including your friends, family and colleagues. They may not know the strict precautions they should take to continue to protect you from COVID-19 or what interactions you feel comfortable with. Therefore, it is worth telling or reminding people that you have a high risk of serious illness from COVID-19. Ask the people you are meeting to take a lateral flow test before meeting you and to stay at home if they test positive.

Understand your level of risk

Every patient will have a different level of risk depending on their health, the stage of their myeloma and their vaccination status. Knowing your personal level of risk can help you decide what you are comfortable doing now that restrictions are coming to an end.

Talk to your healthcare team about your level of risk and if there are any reasons you should be particularly careful.

The things we are doing to keep you safe

Like many myeloma patients, we are concerned about these changes, especially the latest news about a possible end of self-isolation.

We are working hard to make sure myeloma patients voices are heard by the UK Governments and that their strategies for living with COVID-19 consider the needs of immunocompromised people.

At the start of this year, we wrote to the UK Governments and called upon them to produce a comprehensive framework that offers financial and legal protection to patients required to continue to self-isolate and take additional measures to protect themselves.

We have also asked for a commitment that the Government will prioritise clinically extremely vulnerable patients for further COVID-19 vaccine doses and booster shots, as well as for lifesaving COVID-19 treatments.

Lastly, we raised the need for lateral flow tests to remain free and accessible to all immunocompromised patient populations and their families.

We have also responded to the Scottish Government’s survey on wellbeing and living with COVID-19 protection measures, highlighting the concerns of myeloma patients, families, friends and carers.

We continue to work with the media to highlight the challenges immunocompromised patients face navigating this new world with articles in The i, The Herald, and The Times.

You can read the latest CEO blog to find out more about how we feel about the proposed change to guidance and what we are asking the Governments to do.

If you have any questions or concerns about how the upcoming changes in guidance will affect you, you can contact us on the Myeloma Infoline (0800 980 3332) or email us at

We have written a letter that you can send to your MP to ask them to help keep lateral flow tests free.

We believe that lateral flow tests should remain free for clinically extremely vulnerable people as well as members of their household and carers. No one should be put at risk because they cannot afford to pay for a lateral flow test. Download this letter and ask your MP to support our call. If you aren’t sure who your MP is then email Head of Campaigns Janis McCulloch

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