Shielded voices: hearing from those most in need

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‘I am one of those shielding. I feel alone and invisible.’

Person in their fifties, living with two autoimmune diseases

At the beginning of the acute phase of the Covid-19 crisis, we could reason that it might have been necessary and understandable to make big decisions about health and care (and much else) quickly without much input from patients or users. However, as we move tentatively out of the acute phase, with health and care services working through how they deliver much needed support, the need to ensure we are hearing from people and communities using services, particularly those living with ill health or disabilities, becomes ever more pressing.

Too often efforts to understand what goes on for people and to respond to their needs and aspirations can feel like a nice to have rather than a key part of how to deliver health and care services effectively. It is tempting for services to extend this view into crisis periods by saying ‘We don’t have time to do it’, but now, more than ever, health and care services need to base their decisions on the reality people experience. Experiences from the Grenfell community show the unintended consequences of not listening to or working with affected communities. Not listening means decisions are made that, while well intended, do not consider people’s circumstances, their environment and what would work best for them and, therefore, services fail to meet people’s needs.

'I understand that the government is going for a blunt, "one-size-fits-all" message but that risks leaving people like me exposed. We are all in this together. And that includes me. I am being careful, but I will not just stay indoors for three months or more as the government seems to think I should. I want fresh air and sunshine too.'

Martin, living with 12 long-term conditions

Covid-19 is affecting some communities disproportionately, including those from black, Asian and minority ethnic groups, so who we hear from matters. A one-size-fits-all approach to interventions will not work and risks exacerbating already stark inequalities. For example, testing the contact-tracing app only on the Isle of Wight will provide helpful learning, but won’t provide understanding of how it may or may not work in different areas of England, with communities that have very different challenges.

Understanding how to approach the next phase of the epidemic – the chronic phase – is best done at a local level by people who understand and are connected to the communities they serve and are well placed to act on what they learn from those communities. It requires a way of working similar to the citizen-led approaches already in place in areas like in Wigan and Morecambe Bay that put communities at the heart of their work. It recognises that for health and care to make a difference to people’s lives, the system first needs to understand those lives and the challenges that people face. Harm can happen when decisions are made without this understanding. Given the terrible inequalities that are already surfacing, the need for this granular and people-led approach is both urgent and important.

'Any exit plan must do more than add a footnote that those shielding will just have to stay indoors for the foreseeable future. We need reassurance as to what that means for our jobs, our incomes, for our role in society.'

Sharon, living with CF

Currently there are 2.2 million people being shielded but that should not mean that their or their carers’ voices cannot be heard. This is an opportunity to think about new ways of hearing from those in receipt of care at this time. There are clearly some methodological challenges, face to face work is clearly difficult to do, but different approaches can be combined. For example, National Voices is collating and analysing experiences from anyone with an ongoing health or care need on their new platform, Our Covid Voices. Local Healthwatches are sounding out people about their experiences of care. Local voluntary services and charities are working with many of these people, what are they hearing? Could some of the NHS volunteers be trained to collect insight and experience from ‘vulnerable’ people? To act as peer researchers who can collect and tell these stories?

This work is not a nice to have – we, as a society, will not find a way through this next phase without exacerbating inequalities if there is not a recognition from those in power that we need to hear from people about their experiences and that means all groups in society not just the ones that already have a voice. You cannot see the whole world from the vantage point of power. To understand this and more importantly act on it takes humility and the recognition from leaders they do not have all the answers.

’Some people say that we are used to a life of isolation. That chronic illness has prepared us to handle this situation. We have learnt to manage dwindling finances and seek support. We are resilient and resourceful – but that doesn't mean that I am mentally prepared for months of shielding.’

A children’s diabetes nurse, living with Behcet’s

 

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