Changes to shielding advice must involve patients and carers, says Charlotte Augst

“Whilst I appreciate how much everyone is stretched dealing with this crisis, it seems strange not to have anything in place where people can ask questions, and especially when the system isn’t working. It’s not right that government/public organisations just broadcast out information without an option to ask questions or express concerns.” — A person who is shielding with arthritis

At National Voices, we have no way of knowing what risks are involved in telling extremely clinically vulnerable people right now that it is safe for them to leave their house. We are not epidemiologists and have no access to the kind of expertise that is represented on SAGE. But we do know about how people who have been shielding have experienced the last 10 weeks. And we also understand what is required for making good policies, beyond epidemiological evidence: active engagement, shared decisions, personalisation. 

We understand why early on in this crisis decisions needed to be made at a pace and in circumstances that prevented good engagement. But guidance for people who are shielding will need to be developed and updated for months and months to come. Evidence for what is (clinically) safe or not, does not change overnight, or over the course of a weekend. We need to listen to those who are shielding, and the organisations that work for and with them. This is the only way we will maintain or rebuild trust, and keep people safe in the long run. 

“Shielders and vulnerable—there are probably 3 million of us. We are nearly all grown ups. Not bad at living life and making decisions. My partner’s condition from what we have found out, either means they are highly likely to catch the virus or the same as everyone else. Would be great to have a discussion about that. We live near a lovely park which opens at 6 am, and I am pretty sure there will be no one either in it or the way there at the time. Would love a discussion about that.”– Person shielding with and for their partner

Developing and publishing guidance without involvement from patients and carers will mean that the problems people actually experience, and how they deal with them, will not be addressed. Our experience (again and again) from guidance and policy that is developed only by clinicians and managers, without the input from patient groups, is that it doesn’t really work. It doesn’t treat mental and physical health as equally important, and it doesn’t understand how health is created, supported, or undermined in people’s houses, workplaces, and relationships. It won’t talk about family carers at all, or enough, and it probably won’t tackle inequality heads on—with not enough focus given to those circumstances and people where multiple disadvantages, conditions, or pressures collide.

“Once lockdown came into play, everything got worse. Firstly, getting food supplies was impossible in the early days, adding to my already heightened anxiety levels. This impacted further on my ability to eat the correct foods to control my blood glucose levels. My anxiety has been so high and has felt overwhelming and unbearable most of the time. I have tried to do things to help stay calm, for example jigsaw puzzles, but concentrating on anything has been near impossible. I have either been unable to sleep at all or wanted to sleep a lot and this has often left me feeling unwell.” — Person living with seven long term physical and mental health conditions

But it doesn’t have to be this way.

At National Voices, we have, together with over forty other charities large and small, from right across health and care, written to Government ministers to suggest a better way forward: better communication, clearer leadership, a more holistic perspective on the lives of the shielded by working with patients and their organisations. 

We can do things better and we and our colleagues across the voluntary sector stand ready and willing to help. Let’s set up a working group dealing with shielding issues that includes patients and their organisations. Let’s brief patient charities well in advance of policy change and help them get ready to deal with the massive increase of questions and support needs they have confronted since this crisis started. Let’s work more closely with colleagues from primary care, local authorities, public health and communities themselves to find solutions for the many problems we still need to sort out, ranging from the data not being good enough to what to do about crowds of people flocking to beauty spots on sunny days. 

We need to get the evidence for the shielding programme out of the black box it is currently held in and start a grown-up conversation about how people want to live. We need to contextualise clinical guidance within lived realities: with zero-hour jobs or in overcrowded housing. “No decision about me without me”, has never been more important or urgent. It is time to remind our healthcare and political leaders that transparency and accountability are not nice to have add-ons for less difficult times, but the bedrock of safe and effective decision making. 

“I’ve been putting off writing this because I felt I would be too emotional, not objective…. But now I think that’s important to be heard too. I am labelled ‘vulnerable’, what a horribly loaded term…” — A person who is shielding – on her own, with no garden

 

Charlotte Augst is the chief executive of National Voices.

Twitter: @CharlotteAugst

Competing interests: None declared.

 

 

All quotes taken from the www.ourcovidvoices.co.uk platform where anyone living with ongoing health and care needs can tell their story. Patient consent obtained.