The Aplastic Anaemia Trust has been contacted by many people with aplastic anaemia about the UK government's decision to remove all restrictions in England from 19 July. We know that this is a difficult time for those who are clinically extremely vulnerable. 

Our government is moving on from providing guidelines and rules to help control the virus, to emphasising personal responsibility and decision making. The Aplastic Anaemia Trust urges anyone who is clinically vulnerable to exercise extra caution as we wait for results from ongoing research and to see the impact of the vaccination programme. While Covid cases are high, it is important to take measures to protect yourself if you are at increased risk. 

We know that it can be very difficult to set boundaries with your friends, family, and employers. Many people are keen to get "back to normal" and may not fully understand the additional risks that you face. We are here to help you. 

Working from home 
The government are still advising everyone to work from home wherever possible, and The AAT would recommend this for anyone who is clinically extremely vulnerable. If you need support on requesting this from your employer, we have provided some useful advice about your right to ask for reasonable work adjustments based on discrimination legislation here. 

Attending school
Children and young people who are clinically extremely vulnerable have been advised to return to school, college or university. You can discuss this with the educational setting to ensure that all safety measures are in place, and with your clinician if you are concerned. The Aplastic Anaemia Trust will soon be publishing a new MarrowKidz guide for schools, which is a useful tool to help explain the severity of aplastic anaemia to your school, to request a copy now, drop us an email at [email protected].

Socialising 
We recommend that people who are clinically extremely vulnerable should socialise outside and socially distance from others by two metres if possible. You should speak to your clinician about whether socialising is safe and appropriate for you.

It is reasonable for someone affected by aplastic anaemia to request to friends and family that they meet outside. It is also completely reasonable for you to continue isolating from people outside your support bubble and stick to socialising online, if you feel safer doing so. 

Difficult conversations
You might find it useful to share this social media post on Facebook (pinned post), Twitter and Instagram, to help set expectations among your friends and family, before you meet in person.

We have ordered badges for you to wear that emphasise your need for extra personal space:

We are selling these at cost in our shop for £1.75. We also sell face masks. If you need a badge or a mask but paying or ordering online is a barrier for you please email [email protected] to request one for free, we are happy to support you. 

When setting boundaries with someone, it can be useful to use "I" statements. This can help you make the conversation feel more like a personal request and not a political debate. Try: 

• I know you're comfortable with going to indoor events but I'm clinically vulnerable and still concerned about the risks. Please could you humour me and meet me for a walk in the park instead?
• It would make me a lot more comfortable if we could both wear masks, would you mind wearing one today for me?
• I've been advised by The Aplastic Anaemia Trust to keep my distance for now, because of my health condition. Would you mind staying over there to help me to feel safer?

Telling someone they are wrong or being selfish is likely to be less effective. 

Face masks 
Wearing a face mask is a simple way to protect those around you. We would like to help members of our community to feel comfortable requesting this small act of kindness from people they are in contact with, particularly indoors. 

Masks are currently still mandatory on public transport and most indoor public spaces until 19 July. England's Chief Medical Advisor and Chief Scientific Advisor have both said they will continue wearing masks indoors when they are in close proximity to other people, or in any situation where it would make another person feel uncomfortable if they were not wearing one. We recommend the same approach. 

Testing 
If you are meeting with someone who you feel might represent more of a risk to you (for example because they are not vaccinated, or have recently come into contact with a lot of people) it would be reasonable to ask them to take a test. 

Rapid Flow Tests are free and easily available. They give instant results and are suitable for regular testing, which is appropriate for people who may need to be in regular contact with someone who is clinically extremely vulnerable. Find out more about these tests and how to order them for free here. Regular testing can help with anxiety and make you feel safer.

If someone is showing symptoms of Covid-19, has a positive result from a rapid flow test, or is instructed to self-isolate by the NHS Covid app, they should self-isolate immediately and can order a PCR test kit from here.  

Vaccination for people with aplastic anaemia 
In December 2021, we announced the results of a trial that investigated the efficacy of Coronavirus vaccines for people with aplastic anaemia and PNH, which was led by Professor Peter Hillmen and a team of researchers in Leeds. The research showed promising results. Whilst people with aplastic anaemia and PNH often fail to mount a satisfactory immune response after receiving one dose of a Coronavirus vaccine, this improves significantly following the second dose. Almost 100% of trial participants mounted a satisfactory immune response after receiving two doses when compared to healthy trial participants.

The study also showed that taking Ciclosporin had no significant impact on the immune responses shown by trial participants. 

As these results show, the vaccines are very effective for people with aplastic anaemia and can significantly reduce the risk of you becoming seriously unwell. We strongly recommend that you have all doses of the vaccine that you are offered, including a third primary dose and any further booster vaccinations.

More information about the trial results

Vaccination for people who know someone with aplastic anaemia 
For healthy people, the Covid-19 vaccine will make them less likely to get the virus, and less likely to pass it on to those around them. We strongly advise anyone who is offered the vaccine to have it, to protect themselves and others. This is important to help protect those who are clinically vulnerable, including people with aplastic anaemia, who may be unable to have the vaccine and for whom the protection is can offer them is still uncertain. 

Being careful even when vaccinated  
No vaccine provides 100% protection from Covid-19, and anyone who has been vaccinated should be wary of feeling more confident and becoming complacent about other useful safety measures. This is particularly true for people with aplastic anaemia, as we do not yet know how effective the vaccine is for them. 

Seek professional advice 
When in doubt, get in touch with your clinical team and ask their advice. Your clinician will know your individual case and be able to advise you from an expert’s perspective. 

Personal choice 
As restrictions ease, government advice is for people to exercise caution and common sense. We are happy to support with advice, but you should be the judge of what is right for you.  You can take into account your personal situation as well as your mental and physical wellbeing. The Aplastic Anaemia Trust respects your personal decisions and is here to support you regardless of how you choose to interpret the risks and guidelines. 

Share your voice 
As restrictions ease, The AAT is keen to represent your views and are working together with other charities and organisations to ensure the needs of aplastic anaemia patients are prioritised. You can help us do this by adding your voice here. 

If there's anything else we can do to support you, please contact us via our Support line. We would love to hear from you.