How should coronavirus shielding guidance for blood cancer change?

On 23 March 2020, life changed for everyone in the UK as we entered lockdown. But people with blood cancer were among the 1.5 million initially asked to take extra steps to “shield” themselves from infection, including staying at home at all times, the reasons for which we explored in a previous article.

Immediately, people with blood cancer, and their doctors, recognised that shielding was a huge burden, but that it felt necessary.

Based on their experience of the ability of different people with blood cancer to fight other infections, doctors discussed passionately whether people with some types of blood cancer might have less need to shield than others. But while this seemed likely, there simply wasn't evidence to say that this was true for coronavirus, and an approach that kept everyone safe seemed right.

Two months later, we have the first indications of how coronavirus is affecting people with blood cancer. The evidence supports the view that they are at higher risk if they get coronavirus. And while we don’t have definitive numbers yet, it appears the number of people with blood cancer dying from coronavirus has been kept low.

But everything we have heard since from the thousands of people with blood cancer who have contacted us, bears out the impact shielding is having. Much more than an inconvenience, shielding has had a huge effect on mental health, family relationships, and for many, financial security.

For many people with blood cancer the thought of being asked to stay at home until the unknowable time when a vaccine is available is awful. A leading blood cancer doctor told me recently that they treat people with blood cancer to give them their lives back – and shielding just doesn’t feel like that.

But many people with blood cancer are also understandably fearful of shielding guidance changing without a clear explanation of why it is safe to do so. And so far, that information has been lacking.

This is the million dollar question, and the answer is, probably, no.

But now it gets difficult.

People with blood cancer are different, and the way they are different is important. This is both the key to changing guidance and a huge challenge. Shielding everyone with blood cancer keeps everyone safe. But once you start to say that some people can safely move away from shielding, how do you define those groups to make sure they don’t include anyone at increased risk?

The way that people with blood cancer are different is important. To fight any virus, we need a healthy immune system, and a weakened immune system is what we think puts people with blood cancer at higher risk from coronavirus. But not everyone with blood cancer is the same.

Our immune system is often compared to a military defence system with many ways of fighting disease. So,what part of a person’s immune system is weakened by blood cancer is important.

Different types of blood cancer affect different parts of our immune system. Some have a rapid impact. Others are slower and may not require treatment for some time – but may still weaken the immune system. What type of blood cancer a person has and how long they have had it is important.

What treatment they have is important too. Different treatments affect the immune system in different ways – as does how much treatment you receive and for how long. But what about people who have been successfully treated and are in remission? Do they really all need to shield, or is there a time after treatment when they can safely stop? Almost certainly, yes, but is it possible to set simple guidance that works for everyone with so many differences between everyone?

And finally, there is coronavirus itself – a virus that we have only known existed for five months. How coronavirus attacks the body is important too, but we're only just beginning to understand that mechanism. When people get seriously ill with coronavirus and need intensive care, it seems that their immune system over-reacts and starts damaging the lungs. So, in theory, it is even possible that some people with the “right type” of weakened immune system might be at an advantage – but we're a long way yet from understanding if that’s true.

There's no doubt that changing shielding guidance is difficult. The changes announced by the Westminster Government, via the Sunday Telegraph and on social media on 31 May, is probably not the way to do it.

There are some straightforward principles that can guide everyone if we put the needs of people affected by blood cancer first.

1. People with blood cancer need to be part of the conversation. This is a basic requirement for trust and is true both in the development of changes to national guidance, and changes to guidance for individuals that are recommended by blood cancer doctors and GPs.
   
2. Blood cancer doctors need to be part of the conversation. Expert health care professionals must be visibly part of the process of changing shielding guidelines, to make sure they follow the evidence and can be practically delivered.
   
3. The reasons for changes to shielding guidance must be published. This is particularly true when changes mean that individuals will be added to or removed from the “highly vulnerable” category. People with blood cancer need not only to be kept safe, but to feel safe. The reasons for changes to shielding guidance, whether for groups of people or individuals, need to be openly shared, or they will not be trusted.
   
4. Guidance needs to help people protect themselves. Providing guidance and requiring people to behave in a particular way are two different things. As a principle guidance should err on the side of caution, but allow individuals to make their own decisions about what’s right for them. Over time, people with blood cancer will grow more confident in making changes to their lives, but only if guidance continues to give people the information and critically, the support they need to stay safe.
   
5. Evidence from patient data is really important. Understanding how people with blood cancer actually respond to coronavirus infection is the ultimate guide for decisions. And that requires careful collection of a range of information about blood cancer type, stage of treatment, treatment history and immune status.
   
6. Perfect cannot become the enemy of good. Doctors rightly hate to make recommendations without evidence, but practical decisions are needed about how much evidence is enough. Waiting for “gold standard” evidence means waiting for a long time until large numbers of people with blood cancer have been infected with coronavirus. Policy makers are used to taking decisions based on the best evidence available, but it must be the right evidence. How policy makers and blood cancer doctors work as a team is central to success.
   
7. We need to test and learn. When guidelines change, we need to keep collecting the patient data that will tell us if they’re working or not and keep publishing the data. Not every decision that is taken will be perfect, and where there is evidence that guidance changes aren’t working that should be acknowledged openly, guidance should be improved, and the reasons for change communicated.

The good news is that governments around the UK are thinking about how shielding guidance can change, and we see some signs that evidence and clinical judgement is being sought.

We know that the Scottish Government has been involving blood cancer doctors in carefully assessing their shielding guidelines, and that this has led to some changes in who is asked to shield – which means some differences have developed from guidance in England. This is an important part of what needs to happen, and the Scottish Government has been open about their use of expert advice. But people with blood cancer haven’t yet been included in the conversation and the advice from health care professionals isn’t yet public. So, this is a good start, but there is still some way to go.

In England, as mentioned above, Government announced changes to the shielding guidance on 31 May to start on 1 June so people who are shielding can go outside with their household or with one other person, socially distanced, if they live alone. As a charity our work remains focussed on ensuring that all the UK Governments are prepared to provide people with blood cancer all of the support they need to continue to shield if they need to. The announcement of a relaxation of shielding requirements for all highly vulnerable people in England on 31 May was not specific to people with blood cancer. But it was a complete surprise and fails many of the tests we believe are important. Similar, advice has been issued for people shielding in Wales by the Chief Medical Officer. Advice for people shielding in Northern Ireland is due in the week commencing 1 June.

Finally, and perhaps most importantly, the research community and doctors have been active. Across a variety of expert groups, I have seen blood cancer doctors working hard to tailor treatment guidelines for their patients in response to coronavirus, and these conversations always considered shielding guidance too. In research that has already begun, the UK Coronavirus Cancer Monitoring Project is collecting data on patients with blood cancer who catch coronavirus from many centres around the UK and other research is ongoing around the world.

For adults with blood cancer I believe this will help doctors gradually identify people with blood cancer who don’t need to take the most extreme shielding measures – provided always that the necessary funds are provided to do the research.

For children with cancer, this data has already led paediatricians to develop specialist guidance on shielding for children with cancer, something we’ll be writing about very soon. This is a good example of how evidence can be used quickly by doctors to give guidance. But the response of some parents has shown just how wary they will be about evidence that relies on small numbers of patients. And now, hopefully for a short time only, we have guidance from clinical specialists that is different from guidance provided by the health service – a gap between doctors and policy makers that needs to be closed to retain trust.

First of all, lets acknowledge the enormous hard work and good intent we see from civil servants in the health departments in all four nations of the United Kingdom to get things right working under enormous pressure. Just like front line NHS staff they face huge challenges. There is no single electronic health record system for NHS patients, so it is impossible to centrally identify people everyone who should shield. That means GPs and specialist doctors have had to do extra work locally to identify patients who should shield – a frustrating job for which they should also be thanked. And of course, this has resulted in mistakes and confusion for people with blood cancer, and more time spent sorting out queries and problems.

But accepting all of that, it important to say honestly that right now there is confusion. That evidence for decisions is not being shared. And most important of all, that right now it feels like the views of people with blood cancer are an after thought. Let’s not forget just how very hard it has been in the first phase of shielding simply to get shielding guidance letters to everyone who needs one – and that some people with blood cancer say they are still waiting for one of those letters. Or how badly handled some of the communication of changes of guidance to individuals has been. Or how worried many people with blood cancer are about the protection of shielding and the support from government to do it being taken away.

So, while I believe we have the expertise we need in this country to do a great job, we need a change of approach to deliver. That means putting people with blood cancer and their doctors at the heart of the conversation and sharing the evidence for decisions publicly. If we can achieve that, then we can begin to do what everyone wants – give people with blood cancer their lives back in way that keeps them safe and feeling safe.