CAPE is the Consortium Against Pain Inequalities, and they are working with People’s Voice Media on an important new project. 

The CAPE team is investigating whether exposure to adverse childhood experiences contributes to higher levels of chronic pain in the most deprived communities and the consequences of this. The interaction between the CAPE project, People’s Voice Media and the Community Reporter network will explore how lived experience stories can be used with the research.

As someone living with chronic long term pain (CLTP), I’ve found it hard to get the right holistic support and understanding for many years, so it’s wonderful to be part of this initiative. Through people’s stories about living with CLTP, we hope to help the wider health, social care, housing and Department of Work and Pensions systems that come into contact with people like me. It’s vital that these agencies understand what it’s like to live with CLTP, and what impact this has on our lives. Additionally, the dialogues and recommendations will cover what needs to change and what such changes will do for people like us.

Combining the CAPE project and our work here at People’s Voice Media is central to what I believe in. By retaining and highlighting the personal aspects of real people’s experiences, we can start to change society so that it is truly inclusive and inequalities are eradicated.

So far, we’ve had two Community Reporting workshops and we’ve collected 4  stories from Advisory Members connected with the CAPE project, plus one other person living with CTLP. We have a sense-making workshop scheduled for 6th December, when we’ll have a deeper look at what people have said, and what we can do to recommend changes that will enable people to live good lives. Here is a small selection of what people have been sharing so far:

“People need to be more tolerant. They also need to realise we are not the minority. There’s tons of us, people just don’t talk about it. ….. We judge people and how able they are through their health. And it’s apparently a badge of honour. If you’re healthy….. We need to educate on invisible conditions, but also on all the conditions that people face. And people need to be educated rather than say this is going to be something that’s going to cost me in the workplace to deal with. We need to realise how much we should value and incorporate people in the workplace that have challenges.”

“There’s a lot of fear for not being believed.”

“It’s not necessarily that the pain is for the same diagnosis, but there’s a lot of similarities and a lot of frustrations people are living with.”

“I wish that health professionals and allied health professionals would actually just listen and think. Does this person need some other kind of support as well? And treat you as a whole person.” 

People’s Voice Media will be working closely with the CAPE team to explore what the next steps need to be, and an update on the project will be shared with you all in the new year. 

Isaac Samuels, Community Reporting Lead

You can find out more about the CAPE project and other similar research projects here: https://www.ukri.org/news/new-data-hub-and-research-into-chronic-pain/ 

Disability Rights UK (DRUK) & People’s Voice Media are working in partnership to record people’s lived experience narratives and insights about the COVID-19 pandemic and lockdowns.

As a Disabled person, and someone who lived through COVID-19 and who is living with long COVID, this partnership is so important. It is not only about ensuring the lived experiences of people like me are at the heart of the inquiry, but it’s about the inquiry hearing the truth from so many like me. Our remit was to capture the lived experiences of 12 Deaf and Disabled people, but we’ve already gone beyond that. We also have more people to share their stories and are looking for others, to ensure that we represent the variety of disability experiences across the UK.

Much like the lockdowns, hearing Disabled people’s lived experiences has been a mixture of emotions. Sometimes heartbreaking, often leading to gritted teeth and clenched fists with thoughts like

“How could this have happened? Why was common sense not used?”

Occasionally we’ve heard snippets of hope about kindness, communities and creativity. Sadly, many interviewees have not been surprised by what they and their loved ones experienced. Experiences such as the deaths of Disabled people in and outside of care homes, lack of access to food shopping and personal protective equipment (PPE) for Disabled people who were isolating and/or requiring personal care did not happen by accident. They were the result of policies and choices that have a discriminatory view of Disabled people. Examples of such policies and choices include Coronavirus (COVID-19): Guidance for the Care Act easements, issued to local authorities early in the pandemic. Additionally, there was government guidance for people receiving direct payments. 

This project will ensure the Covid Inquiry hears the experiences of Deaf and Disabled people who lived through the pandemic. It’s vital these voices are central to the Inquiry’s exploration of the inequalities and injustices people have faced. To prevent any future situation leading to injustices against Deaf and Disabled people, the COVID Inquiry, and those called before it, will have to face some profoundly uncomfortable facts. For example, how did we reach a situation requiring Disabled people to sign DNRs (Do Not Resuscitate orders) and for this to be considered acceptable? What beliefs and assumptions about the worth of Disabled people guided this way of thinking?

At the heart of the work is co-production. Once all the interviews have been done, the interviewees will be invited to a sense-making workshop in the New Year, to agree the main points and recommendations together for the COVID Inquiry. This will include positive and negative aspects of people’s experiences.  We have collated a wide range of stories to date and we’re working with DRUK to ensure we can add more stories. Additionally, we are working with DRUK to explore how we share these stories beyond the COVID Inquiry, because it’s vital that people know and remember that at the height of the pandemic and lockdowns, we were not all in it together. There were many inequalities faced by Disabled people.

We would very much like to hear from Blind people and Deaf people about their experiences during the pandemic.  Additionally, having narratives from people in Northern Ireland, Scotland and Wales will enable us to give the COVID Inquiry a UK-wide view. Currently our story sharers include 3 parents who have spoken on behalf of their children who have learning disabilities and who do not communicate verbally. We would also like to include the experiences of people with learning disabilities in their own words. 

The project team has been humbled by what people have shared. These stories are full of trauma, and as a project team we have had to be mindful and work in ways that mean we can support people to share their stories in a trauma-informed way. Undertaking this work, within the team itself, has helped the practice of Community Reporting and made us really think about the care and due regard we need to have in place when capturing stories. We’d like to thank everyone who has contributed so generously to this work and we will share the results with you later in the project.

Isaac Samuels, Community Reporting Lead, People’s Voice Media

In late October, we sent a Debbie and Alice – a youth worker and a young person respectively – from Gorse Hill Studios, Greater Manchester, to Copenhagen, Denmark for a training session hosted by our CONTINUE project partners, Crossing Borders.

The training was for one of the final stages of the CONTINUE project: the Reach Out Campaign. This is designed so that the young people who have co-created the project so far can disseminate their findings and begin to pave the way for the changes the project will be recommending.

The workshops delivered essential training on how to go viral by Alex Sabour, founder and CEO of Gorilla, and how to make short form content by TikTok creator, Tom Hyland. In the next stages, Crossing Borders will be producing guidelines for the Reach Out campaign and Debbie and Alice – along with their counterparts across Europe – will be training their peers and delivering their campaigns… We can’t wait!

Also upcoming in December will be our published policy and practice briefings, co-created by everyone who has participated in CONTINUE – including in our recent pan-European knowledge exchange event. Watch this space.

In the Building Community Connections project, a group of support organisations wanted to develop collaborative and community-led solutions to health inequalities in Calderdale. We worked with different communities to train local people as Community Reporters who were tasked with gathering lived experience stories about health issues, experiences of the pandemic and wellbeing topics from their peer networks.

The learning from these stories has informed the commissioning of local initiatives and interventions. This way of commissioning (in a more co-productive way) was quite new for the area and was an experiment for the partners involved.

We’ve worked with the project and its partners and stakeholders to capture the learning from this process. This short video summarises the key findings from this learning journey and experimental approach to commissioning and addressing health inequalities at a local level. Take a look!

We are thrilled to announce that the findings of the ‘What is the value of co-production?’ project are now live.

You can:

• Watch a video summary of the findings from our Community Reporting (7 mins)
• Read the overview report (10 pages, 15 mins)
• Read the full report (80 pages, a couple of hours but so worth it!)
• Watch the YouTube playlist of fantastic extracts from all of the storytellers

None of these amazing resources would have been possible without all of the people who shared their stories with us. We are so grateful for their time and the insights that have shaped this important bit of research.

And there’s more…

There were also some other strands to this research that you might be interested in. All the details are on this webpage: What is the value of co-production?

This includes:

• An overview video of whole project
• Interactive summary PDF of whole project
  • A screen reader friendly version – as a Word document and as a PDF document.
  • An audio version – as a MP4 file
  • Versions of the Interactive summary in Braille, EPUB, MOBI – via a Google Drive folder
• As well as the Community Reporting findings, this also includes the results of the Gobby survey, a rapid critical review and learning from pilot projects.

We hope that this resources and research findings are useful to you – and please do share widely.

And look out for more coming soon – there will be the launch of a resource library for co-production and much more besides! Watch this space!