Correct as of 30/07/2020
Do you live in an area affected by a local lockdown? The advice in these blogs is designed for people living in areas where shielding has been paused. The areas in local lockdown may be subject to different rules, including the extremely vulnerable being advised to resume shielding and restrictions on who can meet up and where. Please make sure that you follow all rules and/or guidance in your local area. These areas may also change. You can find out more information here: https://www.gov.uk/government/collections/local-restrictions-areas-with-an-outbreak-of-coronavirus-covid-19.
Please also get in touch for further information using the contact details at the bottom of this blog.
Whilst guidance on shielding has become less strict in the last two weeks, the pausing of the guidance on the 1st of August (16th of August in Wales) represents a difficult step for many. You may still feel anxious about the risk of catching the virus when out and about, or you may be looking forward to getting out and about more. Both are equally understandable feelings.
The risk of catching the virus has decreased significantly since the height of the pandemic, but COVID-19 is still present to some degree. Whatever you feel about the change in guidance, this blog is designed to help you to understand the latest information on COVID-19.
Note: this blog does not replace advice from your medical team; it is designed to help you understand all the information available to you. We always suggest you take advice from your medical team about your personal risk of severe illness from COVID-19 if you are concerned.
What risks am I taking if I go out and about? Is COVID-19 still present?
Yes, COVID-19 is still present in the community, although the number of cases has decreased since the height of the pandemic in April.
When someone talks about the “risk of COVID-19”, they could be talking about one of two things:
1. The risk of severe illness if you catch the virus.
Your risk of becoming severely ill if you were to catch COVID-19 is determined by your personal characteristics. You may have seen discussed, for example, that being overweight, over a certain age or having other illnesses, like heart or lung disease, are thought to increase your risk of severe illness if you catch COVID-19.
2. The risk of catching the virus itself
Whether or not you catch the virus in the first place is a separate consideration. It will depend on the number of cases of COVID-19 where you are and the actions everyone takes to prevent the spread, including your own actions. For example, if cases are high and everyone meets up with others in enclosed spaces, the risk of those people catching the virus is likely to be high. If the number of cases are high, but everyone avoids contact with others, then COVID-19 can’t spread and cases will eventually fall.
The difference between the general public lockdown and shielding comes down to these two different types of risk. Lockdown, including social distancing measures, was put in place to curb the spread from person to person, with the aim of giving the virus fewer opportunities to meet someone else to infect. However, we still had to go out for food and exercise in order to live, and others had to continue to work, so there was always some risk of spreading the virus.
This is where shielding comes in. Blood cancer patients were deemed to be at extra high risk of severe illness, so going out for any reason and risking catching the virus was not advisable for a while. Shielding is being paused because it is thought there is currently less risk of you catching the virus, since the number of cases has dropped significantly. This pausing does not necessarily change your risk of severe illness if you are to catch the virus. The shielding guidance could be issued again if cases were to rise again; this has been the case in places that have experienced local lockdowns recently.
When you are discussing or thinking about your personal risk from COVID-19, be clear which type of risk you are referring to. If you were shielding, you are still likely to be susceptible to severe illness from COVID-19 (although you should discuss this with your doctors; see next section) but you are less likely to catch COVID-19 now than you were at the height of the pandemic.
Is there a way of finding out how risky catching COVID-19 is for me?
If you need advice about your own risk of severe illness from COVID-19 now, the best person to talk to is your haematologist. They will be able to work through the available evidence and your own risk factors, including things such as your age or other illnesses you have. Leukaemia Care are not able to provide you with any sort of assessment of risk.
This virus was unknown in the world before the pandemic. Therefore, the list of those who should shield was based on advice from doctors about who is most likely to get ill from other viruses and bacteria about which more is known. The doctors made a judgement about how this knowledge could be applied to the new virus. This included shielding people with reduced immune systems or taking treatments that dampened your ability to deal with viruses.
In an ideal world, we would be able to give everyone a personalised risk score, so they would know their likelihood of being seriously ill. This would then allow each person to decide whether it is safe to go to work, to the supermarket, to a concert etc. However, the ability to do this across a whole population requires several things:
- Information about the illness/virus and how it circulates. Viruses spread in different ways; even though we know the virus spreads by coughs and sneezes, there is still some unknowns. You might think of coughs and sneezes as putting the virus into the air, where it floats around and goes up other’s noses. However, coughs and sneezes also aerosolize viruses, meaning they can stay in the drops of liquid that comes out your mouth and nose. These drops behave differently to free virus circulating in the air, being more likely to drop on surfaces and infect people through touch. We need to know how the virus moves around before we can know how to protect people properly.
- Information about who has become most ill so far. No one has had this illness in a controlled environment; each person who has caught it is an individual and working out what factors make one person more ill than another person takes time. This virus is still very new and even though there have been many cases worldwide, it will take time for all this information to come together. We have also protected the most vulnerable, meaning there are (thankfully) fewer cases to study in these groups.
- Research time. Researchers will need to bring together all this information, analyse it and turn it into a formula by which people can work out what makes them more at risk and why.
Work is underway to try and do this, but it is at an early stage. You can read more here.
You may have seen some research about COVID-19 in blood cancer patients. Work done looking at all blood cancer patients suggests it is likely that, broadly, the shielding guidance was correct in who it listed as most vulnerable, with blood cancer patients showing an increased risk, especially soon after diagnosis. When it comes to specific leukaemia or blood cancer types, more evidence is becoming available. However, many of these papers include very small populations of patients, making any conclusions uncertain. Scientists and doctors are used to making decisions on large amounts of data and clinical trials, which is not yet available about blood cancer patients with COVID-19 and may never be if the virus is controlled well.
Again, if you need advice about your own risk of severe illness from COVID-19 now, the best person to talk to is your haematologist. They will be able to work through the available evidence and your own risk factors, including things such as your age or other illnesses you have. Leukaemia Care are not able to provide you with this assessment.
So how can I go out without putting myself at risk?
Many of you will need to get out and about more; perhaps you want to see friends and family or need to go to the shops because some support with this is now ending. It’s important to remember that nothing in life is risk free; try to focus on what you can control in order to minimise this risk. We have written another complementary blog to help you do this as safely as possible – see ‘Further Information’ below for the link to that blog.
- End of shielding blog – this covers the key dates for each devolved nation and quickfire answers to questions you may have.
- Returning to work blog – this provides an easy step by step guide to help you decide whether to return to work and where to go for more information about your rights.
- Going outside safely – a blog to help you safely get out and about if you want to, once you have taken advice from your doctor.
We are hosting a webinar on the 4th of August to further discuss the topics in these blogs. You will get the chance to put your questions to leading haematologists from across the UK. You can sign up here. The webinar will also be recorded.
You can also get in touch with the Advocacy team by emailing email@example.com or by calling our helpline on 08088 010 444. The helpline team will help you or will make a note of your enquiry and the correct team member will call you back.