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Home / AHSN Network / COVID-19: Learning from those with lived experience
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3 July 2020

COVID-19: Learning from those with lived experience

Nicole McGlennon, Managing Director of East Midlands AHSN

The AHSN Network Supporting the Health and Care Reset logo

As we head towards the 72nd birthday of the NHS on Sunday, I’ve been reflecting on the fact that this is such an extraordinarily poignant time to be celebrating our incredible health service and to express our heartfelt thanks to all those who have played a part in our national response to the COVID-19 pandemic.

And as we begin the task of not only restoring but also ‘resetting’ our health and care services by learning practical lessons from this collective response, we must make sure that everyone who has a stake in the NHS has the opportunity to have their say on how we might do things in the future.

In early May I was invited to attend a meeting with our East Midlands AHSN Patient and Public Involvement (PPI) Senate. Our Senate is an independent body working to spread best practice public involvement through its members’ networks – extending its reach throughout the East Midlands health and care community. The Senate membership comprises patients and carers with strategic experience in patient involvement and the co-production of health and care services.

I was invited to attend so I could hear first-hand their views and experiences, and experiences of their networks, during COVID-19. I felt extremely moved by the stories the Senate members shared. For example, one member living with a long term condition had only left her flat once in the first six weeks of lockdown. She commented on the effects of this on her mental health, as someone living with a long term condition she usually has a lot of contact with the health and care system and her community. Another member talked about shielding with her son who has cystic fibrosis and has struggled with lockdown. She talked about other families living with cystic fibrosis and worries about instructions not to resuscitate due to COVID-19 and the distress this was causing.

Using lived experience in addressing inequalities 

These were just two examples, but there were so many stories and perspectives. Hearing from the Senate was important as it gave me an opportunity to connect with people and representatives of groups most effected by COVID-19. It is now evident that groups and communities such as Black, Asian and Minority Ethnic, older people, people living in care homes, people with disabilities, long term conditions and carers are affected disproportionately and more severely. It is important that we listen and understand these perspectives, so that we can learn and address inequality when we see it.

Agencies like ours have the ability to engage and involve the public, and undertake processes such as equality analysis to assess and better understand if any potential innovations could exclude certain groups or make accessing services or information harder. We have also committed to a number of key diversity pledges to ensure our work, including the innovations and innovators we support, embed equality, diversity and inclusion.

Informing the reset, recovery and restoration of services

The AHSN Network, the NHS Confederation and the Health Foundation are collaborating to support the national ‘Reset’ campaign. This aims to stimulate national discussions and seek feedback from across the system, focusing on the role of innovation in the COVID-19 response and the critical role it will play in re-shaping services. We are also supporting the Midlands NHS region with their work around the response and plans for the reset, recovery and restoration of services – which I know is a priority for all AHSNs in their region. A critical part of this work is to look at the effects of COVID-19 on people and communities.

There have been some really impressive achievements in terms of the rapid uptake of new digital innovations in health and care. But as well as learning from the improvements, we also want to understand the challenges and what could have been done differently to reduce inequalities in terms of health outcomes.

We will listen and learn from lived experiences of patients and citizens and this will be central to ours and our partner’s approaches to reset, recovery and restoration of health and care services. Let’s all work together to ensure the 72nd year of the NHS is a milestone for accelerated positive change and we embed learnings that ensure future generations have a NHS which they, and we, are proud of.

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Nicole McGlennon
Managing Director of East Midlands AHSN
AHSN Network Blog COVID-19 East Midlands AHSN


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  • Health and care reset
    • Health and care reset
    • Coronavirus (COVID-19)
  • Our work
    • National programmes
      • Eating disorders
      • ADHD diagnosis
      • Cardiovascular disease
      • Wound care
      • Insights prioritisation programme
    • Patient safety
    • Legacy programmes
    • New treatments and diagnostics (AAC)
    • Supporting innovators
    • Underpinning themes
      • Diversity in health innovation
      • Patient and public involvement
      • Sustainability and the environment
  • Latest
    • News
    • Blogs
    • Events
    • Newsletters
    • Podcasts
  • Resources
  • Atlas
  • About us
    • About us
    • Our people
    • Careers
  • Contact us
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