People’s Perspective: Preparing
for a challenging winter 2020/21
Nothing about us, without us.
July 2020

Academy of Medical Sciences1

People’s Perspective: Preparing for a challenging winter 2020/21“Only when patients can influence do they have power. When patients hold influence,services are designed for their experience...”1
Dr Jessica Drinkwater, General Practitioner

This is our perspective
Our words accompany an Academy of Medical Sciences report ‘Preparing for achallenging winter 2020/21’. The report describes the scientific perspective on factorsthat could make winter 20/21 difficult for everyone in the UK, and see the NHS stretchedbeyond its capacity. We2 all live with, or care for someone who lives with, one or more
long-term conditions3. These conditions make us uniquely vulnerable to the coming UK
winter and the challenges it brings. Between us, we have lifetimes of experience of livingwith long-term conditions. It has never been more important to involve us in thedecisions made about our lives. We have rarely experienced more meaningful andgenuine involvement than we have with this project. This is our perspective.
“I was wary before COVID-19. Every cold, tummy bug, every child with chickenpox was a threat.
Now, any contact with anyone might be fatal. I don’t play Russian roulette.”
Colin Wilkinson

We are all used to being vigilant about infections. For one reason or another, we are allat greater risk from every kind of infection. We’ve all learned to live with that. When thispandemic struck, it took away our control of our lives, our care and our futures. Our
support networks vanished overnight. At best, the partnerships we had built with theNHS workers who care for us were put on hold. At worst, we were forgotten, somemissed off shielding lists when we knew we should be on them, unable to accesssupermarket online shopping slots or council food boxes, feeling we didn’t matter. Now,
like many, we’re exhausted. We recognised the feelings of those interviewed by Ipsos
MORI,4 but we all felt the stakes were higher for us.
“for those in vulnerable groups the prospect of going outside, near people who may not abide bysocial distancing rules, was a major source of concern. Some wondered whether they might evertake public transport or visit town centres again.”
Ipsos MORI workshop participant

Many vital processes came to a sudden halt – not just our care. This was understandable,
given the life or death struggle in which the whole of the UK was engaged at the time. As
that struggle subsides, we feel that the most crucial, pervasive and fundamental need ishttps://blogs.bmj.com/bmj/2020/06/04/jessica-drinkwater-back-to-the-future-patient-participation-ingeneral-practice-during-covid-19/
2
A full list of the members of the Academy of Medical Sciences Winter challenges Patient and Carer ReferenceGroup is available at https://acmedsci.ac.uk/policy/policy-projects/coronavirus-preparing-for-challenges-thiswinter (tab 3). This group provided information and advice on the issues most important to those who would be
most affected by a bad winter. The two co-Chairs of this group sat on the Academy’s Expert Advisory Group tofeed patient and carer perspectives into their discussions.
3
https://richmondgroupofcharities.org.uk/sites/default/files/multimorbidity_-_understanding_the_challenge.pdf
4
Ipsos MORI COVID-19 winter preparedness workshops www.acmedsci.ac.uk/coronavirus-winter-challengespublic-dialogue
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Academy of Medical Sciences2

to involve people in determining which health services are needed most, and how theyshould be delivered. Where such involvement did not exist before the pandemic, it mustbe put in place now. Building back better doesn’t just apply to our economy or ourenvironment. It has to apply to our care. Disparities between people and places haveto be addressed. 6,7,8,9,10,11“The pandemic has not landed evenly across the population: it has taken a greater toll on olderpeople, on men, on poorer communities, and on black and minority ethnic groups.”5

We can find the best way forward together
Involving people in service design must not be a continuing casualty of COVID-19. If thepeople’s stake in the redesign of services to cope with the challenges of winter continues
to be ignored, poorer physical and mental health and a greater strain on the NHS will be
the result.
“the only way to get quality, meaningful healthcare is to involve the disenfranchised patients.
Theirs is the biggest need.”Carol Liddle

Facing the challenges of winter, we must have the option to make shared decisions about
what matters to us, and what will enable us to cope with the challenges ahead. Designing
options to access the support we want will empower us to manage our own health,working towards the life we choose for ourselves, not the treatment outcomes clinicians
think we need. The only way that can happen is if we are involved in deciding which
services are offered and how.12 Working with clinicians, we can find the best way forward– together.
“When decisions are made without the people affected – they are usually the wrong decisions.”
Mandy Rudczenko

Of course, our lives and our care are also shaped by guidance our Government produces,
and we need a greater role in this as well. The evolving guidance from Government has
become much more complex as lockdown starts to be lifted. While the risk of contracting
the virus may be lower, the consequences of doing so remain unchanged for us. Those
consequences vary widely, even among people who are classified as extremely clinicallyvulnerable. For those of us who received them, the shielding letters were complicated,long and difficult to understand. We understand that involving people in developing
guidance can seem difficult. Living with guidance developed without us is much more so.
“Decisions must reflect realities. The only way to achieve this is through true collaboration.”

https://www.kingsfund.org.uk/publications/letter-to-health-and-social-care-select-committee-covid-19
https://www.kingsfund.org.uk/publications/what-are-health-inequalities
7
https://www.health.org.uk/topics/inequalities
8
https://www.gov.uk/government/publications/health-inequalities-place-based-approaches-to-reduceinequalities
9
https://www.gov.uk/government/publications/covid-19-review-of-disparities-in-risks-and-outcomes
10
https://www.gov.uk/government/publications/covid-19-understanding-the-impact-on-bame-communities
11
https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-020-01640-8#Abs1
12
https://www.kingsfund.org.uk/publications/delivering-better-services-people-long-term-conditions
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3
Carol Liddle

There is now a window of opportunity in which Government, the NHS and social careproviders can work with the people they support to design a set of services, guidelines
and communications that will work for the whole person – not individual conditions – andwill give people options.

Involve us now
We support National Voices’ five principles13 for the next phase of the COVID-19
response. However, we recognise that coproduction processes 14,15,16,17 will be difficult toundertake remotely. Healthcare organisations must do everything they can to use
involvement processes which embody the values15 of coproduction.
“You can’t have equality without power being shared. We are a long way from that.”
Lynn Laidlaw

Any involvement and shared decision-making process has to be real, not a tokenistic
effort. From experience, we feel this will not happen without Government leading by
example and compelling health and other local bodies to share decision making. There is
one test we would apply to any involvement process. If the decisions are not made by all
the groups involved, at the same time, in the same virtual or real room, it is not real
involvement. Nothing about us should be decided without us.
“Don't assume you know what I need unless you ask me”Kimberlee Cole

We make one simple, heartfelt request. Involve us now in preparing for the challenges
this winter will present - or create a burden of health problems which may last fordecades. The members of this reference group, and we are sure, many like us, standready to assist.
“Government must listen to the voices of communities now, especially vulnerable people, and workwith us to tackle the prospect of a challenging winter.”Sudhir Shah

https://www.nationalvoices.org.uk/sites/default/files/public/publications/5_principles_statement_250620.pdf
https://www.scie.org.uk/publications/guides/guide51/
15
http://coalitionforcollaborativecare.org.uk/features/a-co-production-model-five-values-and-seven-steps-tomake-this-happen-in-reality/16
https://www.kingsfund.org.uk/publications/patients-partners
17https://journalofethics.ama-assn.org/article/using-principles-co-production-improve-patient-care-andenhance-value/2017-11
13
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