The  report to the COVID Inquiry has now been completed. It has been sent to the COVID Inquiry team and you can access the report here. Below you have a summary of some of the key points and links to the conversations that PVM had with people, to give you a preview of what the report includes. 

Links to extracts from 6 of the 22 participants

Keymn explains why having an understanding of the value of lived and living experience is training that healthcare professionals must have.

Miro explains why society has to re-think and understand disability differently.

Amanda tells us why COVID information was not fully accessible for Deaf people and what could have been done differently. 

Andy explains to Isaac the reasons for involving people with lived and living experiences.

Hameed discusses both the positive and negative aspects of the pandemic.

Baroness Brinton talks about health and social care problems that were highlighted during the pandemic.

Links to full conversations with all participants

The PVM process starts with individuals narrating their experiences, facts and feelings. We did this by talking to 22 people as part of the joint work with DRUK, so that the lived experiences of Deaf and Disabled people could be input to the COVID Inquiry.

There was one point in the process, where the information given by individuals seemed overwhelming. This was partly because everything felt important and relevant, but also because the task of determining key themes seemed a difficult or limiting process.  For example, when it felt as though every point people made was important, it then seemed like we might be trivialising the topic if we tried to distil it to a few main aspects.

However, the PVM process means that meaning emerges, although this doesn’t happen by magic.  We listen and highlight what we think is important. We might colour code, group together or count how often topics are talked about. We also consider how frequently a contributor might return to talk about a lived experience, as an indication of how strongly they feel about the issue.

For the COVID Inquiry work, we began with some open questions to allow people to give their lived and living experiences in a broad way and in their own words. As the work progressed, and by the time we had recorded 10 narratives, we were able to include some more focussed questions, e.g. Other people have said _____, did you find this was the same for you or what was your experience of this? There was definitely the need to balance the open questions against more focussed ones, because we did not want to lead the participants down a specific route, but we were aware that being able to give the COVID Inquiry team specific details would be important.

In the report we’ve included direct quotations from many of the people who shared their lived experiences. Where necessary, we’ve also offered explanations, based on the conversations and online sense making workshops we held. This is because we wanted to clarify for the Inquiry why particular aspects were different or difficult for Deaf and Disabled people. The key points from the report are:

·  There was confusing and frightening information from national government and local authorities to Deaf and Disabled people.

·  COVID both highlighted and exacerbated existing systemic problems and Inequalities (including racism, ageism and ableism) within statutory services

·  Even though there is legislation, little understanding exists about Deaf and Disabled people’s needs.The report is comprehensive and has had an emotional impact on some readers. We hope it will give people’s voices meaning so that the COVID Inquiry can make recommendations that will support Deaf and Disabled people, together with their carers. As Keymn Whervin stated in the foreword to the report: “The Inquiry must ensure that people affected by COVID have their voices heard, particularly in respect of how we co-produce health and social care”.

Isaac Samuels

As, we have previously shared with you, Disability Rights UK (DRUK) & People’s Voice Media have been working in partnership to record people’s lived experience narratives and insights about the COVID-19 pandemic and lockdowns. We are now ready to share the results of this work with you.

The Stories

During the project, we had the privilege to hear from people about their first-hand experiences of the pandemic. Many of these stories are difficult to hear but it is important that we listen and learn from them. We’ve create a playlist of key extracts from the some of the stories shared, that includes:

• Keymn explaining why having an understanding of the value of lived and living experience is training that healthcare professionals must have.
• Miro exploring why society has to re-think and understand disability differently.
• Amanda telling us why COVID information was not fully accessible for Deaf people and what could have been done differently.
• Andy explaining to Isaac the reasons for involving people with lived and living experiences.
• Hameed discussing both the positive and negative aspects of the pandemic.
• Baroness Brinton talking about health and social care problems that were highlighted during the pandemic.

You can listen to this playlist here.

And to listen to all of the experiences gathered relating to the pandemic, head to this page on the Community Reporter website: https://communityreporter.net/covid-conversations

The PVM process starts with individuals narrating their experiences, facts and feelings. We did this by talking to 22 people as part of the joint work with DRUK, so that the lived experiences of Deaf and Disabled people could be input to the COVID Inquiry.

The storytelling process

Isaac – the person who led this work, describes how in one part of the process, the information given by individuals seemed overwhelming and it was difficult to decide what are the key points we should communicate to the inquiry. This was because everything felt important and relevant and because the task of determining key themes seemed a limiting process.  It felt as though every point people made was important and felt like we might be trivialising the topic if we tried to distil it to a few simple ‘key points’ or ‘recommendations’.

However, the Community Reporting curation process (part of which was done with the storytellers themselves) means that meaning emerges from the stories and we are able to work with the detail and the nuance of people’s individual experiences. This doesn’t happen by magic. We listen and highlight what we think is important. We might colour code, group ideas together or count how often topics are talked about. We also consider how frequently a contributor might return to talk about a lived experience, as an indication of how strongly they feel about the issue. This is a multifaceted approached that allows us to work with both the individual stories (and highlight individual people’s voices) but also stories as a set of data.

For the COVID Inquiry work, we used dialogue interview and open questions to allow people to give their lived and living experiences using in their own words. As the work progressed, and by the time we had recorded 10 narratives, we started to ask people’s perspectives on topics that emerged in the other stories. There was definitely the need to balance the open questions against more focussed ones, because we did not want to lead the participants down a specific route, but we were aware that being able to give the COVID Inquiry team specific details would be important.

The findings

In the report we’ve included direct quotations from many of the people who shared their lived experiences. Where necessary, we’ve also offered explanations, based on the conversations and online sense making workshops we held. This is because we wanted to be clear about why particular aspects were different or difficult for Deaf and Disabled people. The key points from the report are:

• There was confusing and frightening information from national government and local authorities to Deaf and Disabled people.
• COVID both highlighted and exacerbated existing systemic problems and Inequalities (including racism, ageism and ableism) within statutory services
• Even though there is legislation, little understanding exists about Deaf and Disabled people’s needs.

The report is comprehensive and has had an emotional impact on some readers. We hope it will give people’s voices meaning so that the COVID Inquiry can make recommendations that will support Deaf and Disabled people, together with their carers. As Keymn Whervin stated in the foreword to the report: “The Inquiry must ensure that people affected by COVID have their voices heard, particularly in respect of how we co-produce health and social care”.

Democracy across Europe has experienced immense challenge, change and uncertainty in recent years (Canal 2014; European Commission & Merkel; 2019) – from the rise of populism to decreasing levels of public trust in governance institutions and processes, to the war in Ukraine. Set against the backdrop of these issues, EUARENAS has been investigating how cities and urban spaces can strengthen legitimacy, identification and engagement within the democratic public sphere. Foresight is one of the research strands present in EUARENAS. This report and visualisation are the final outputs from this foresight work and synthesises the varied research activities’ core findings.

From the work, an understanding of the current state of play of local democracy has been used to create (largely preferred) future visions for local democracies in Europe. Some common elements of these future visions are:

• Sustainable, long-term thinking
• Valuing difference and diversity
• Embracing the natural environment
• Being pro-actively inclusive and dismantling oppressive structures
• Rehumanising our cities – value-based working that centralises humanity, empathy, trust and transparency

The report proposes the following recommendations for Cities wanting to strive towards more equitable local democracies:

1. Address structural barriers to participation
2. Build relationships of trust
3. Invest in formal and civic education
4. Make decisions for the long-term

A more equitable, inclusive local democracy landscape is not too far in the distance for us to conceive it being possible. In fact, the future is now – the seeds to create it are already being planted, they just need nurturing by:

• Scaling and mainstreaming existing pilot or niche practices that are working locally – whether that beparticipatory budgeting, citizen assemblies or other smaller-scale projects – so that these become thenew ‘status quo’
• Adopting test and learn approaches to promote experimentation and on-going learning – this will enableongoing innovation and be responsive to society’s needs
• Finding ways to celebrate and connect-up the small changes that are taking place – this will help people see that progress is being made, even when it feels like things are changing too slow

To download the full report, click here.

We’ve also worked with Artist Lizzy Doe to create a visualisation of the EUARENAS City of the Future. Click here for the web version. Click here for the print-ready version. Click here for the audio description.

As part of National Co-Production Week in England, we teamed-up once again with Curators of Change, Ideas Alliance, Camerados and many more fabulous organisations, groups and people to deliver the second Not Another Co-Production Project’s Learning Festival in Birmingham.

Over the last year, we’ve been working with folk from across the West Midlands, exploring how co-production and lived experience storytelling can be used in their work to create better outcomes for their communities. The Learning Festival is a chance for people involved in the Not Another Co-Production project to showcase some of their work, have conversations about co-production and of course, welcome people from outside of the project into the discussions.

We started the day with a ‘pre-event’ Conversation of Change, hosted with the Equality Trust that looked at the financial pressures and stresses that residents of Birmingham are facing. During the workshop, we heard different residents’ experiences – from the difficulties of accessing benefits and support, to the financial implications of being a single person. We discussed how these experiences related to our own and how we could make Birmingham a more equal city. The work is part of a larger programme of activity that the Equality Trust is leading on, working with Birmingham City Council to help them implement their social and economic duty.

Following, this the festival went into full swing – a community choir provided and upbeat opening to the event. Around the space, various community groups and local authorities had set-up stalls and activities, hosting conversations, creative activities and much more with the festival attendees. Central to the festival, was a pop-up Public Living Room which set an informal vibe to the event, and in which people could chat, connect and share. Food was flowing throughout the day… samosas, spring rolls, soup, pastries and cakes… and the informality was interspersed with scheduled activities such as arts workshops and the return of the ‘Confessions of a co-producer’ talk show in which attendees spontaneously became guests and chatted with the crew about co-pro.

Next year, the project is moving to North East London and we will soon be releasing a call for people to get involved… so until then, a massive thank you to the West Midlands folk for making the festival and the project happen, and cheers to all our attendees who came and contributed on the day. See you all again soon!

The Consortium Against Pain in Equalities (CAPE) from Dundee University and People’s Voice Media have been working with and using Community Reporting to help with research.

CAPE are conducting research into whether there is a link between adverse childhood experiences (ACEs) and high levels of chronic pain in adult life in the most deprived communities and looking at the consequences of this.

The interaction between the CAPE project, People’s Voice Media and the Community Reporter network has demonstrated how lived experience stories can be used as a valuable research tool. To contribute to this research, People’s Voice Media collected stories of people’s experiences of living with pain. At the heart of these stories have been many challenges, but also many opportunities. We’ve now pulled together these narratives and an animator has been commissioned to produce an animation.

The animation will be used in training settings to help practitioners and people supporting people with long term chronic pain to understand the importance of empathy and communication. Understanding individuals’ lived and living experiences of pain can lead to effective change for all. 

In all the collected narratives, being believed and understood were key. Many participants reported that a turning point for them in managing their pain had been when just one person believed them and showed empathy. Sometimes this was from a clinician, but many had found peer support invaluable, to know that they were not alone. Empathy is crucial for people living with pain, and it’s needed within all the interactions people have, from interpersonal relationships to statutory health and social care providers in addition to employers.

Key themes from the lived experience narratives included; work, access to information, advice and guidance and feeling able to do the things that most people take for granted like leisure activities.

These are often difficult because people living with chronic pain might only use their energy for essential tasks, like going to the chemist or doing the household laundry. It might also mean they feel excluded from leisure activities because they can’t do the same or as much as their friends, or perhaps their pain is just not understood by others.

Additional key points are around the prejudice and discrimination experienced by people living with chronic pain. It’s clear from these narratives that chronic pain affects every part of people’s lives, including intimacy and how people view themselves in respect of a relationship. These lived experiences demonstrate the various responses people receive when seeking help and understanding to manage their pain. Many had negative or indifferent responses from others.

Empathy is vital if we want effective and sustainable change in society and the services people access. We need to consider the challenges people face from different perspectives. Then we need to develop more inclusive and equitable solutions, and ultimately, work towards a better world for those living with pain. All this starts by putting ourselves in another person’s shoes and experiencing their emotions and struggles.

The narratives that PVM collects is one way to do this, by listening to individuals’ stories first hand and thinking about what we might do or feel if we were them. Empathising means we can acknowledge their experiences and validate their feelings. It can also mean recognising the barriers that stop people from accessing resources and opportunities.

Through empathy we can start to understand different groups’ lived experiences and develop solutions that are more inclusive and equitable.