The Department for Work and Pensions is reviewing Personal Independence Payment (PIP) – a benefit that shapes the daily lives of millions of disabled people across the UK. Decisions made in this review will affect how people can pay their bills, access support, move around their communities, and live with dignity. That is why we are bringing people together for a roundtable discussion, and why the voices in the room matter so much. People’s Voice Media’s Head of Partnerships and Practice, Isaac Samuels, tells us why it’s vital that we create this space.

Lived Experience Roundtable on PIP

What is it?

On 5^th May 2026 at 6pm, People’s Voice Media are hosting a 90-minute online roundtable on PIP, as a space for people to share their stories, insights, and reflections. This will help shape a response to the current Personal Independence Payment (PIP) Review led by the Department for Work and Pensions.

This session is part of the wider national Call for Evidence, and it’s really important that the voices of people who live with the realities of PIP are centred, heard, and valued.

About the space

At People’s Voice Media, storytelling is at the heart of how we create change. This space will be grounded in that, offering a supportive environment to share real experiences of PIP, including:

• What’s working and what isn’t
• Experiences of applying, assessments, and decisions
• Where the system feels unfair or inconsistent
• How experiences differ across communities and intersecting identities
• What a more human, fair, and dignified system could look like

Why We’re Holding This Space

Reviews of this scale are too often shaped by data points, policy papers, and assumptions about what disabled people need – rather than real experiences of navigating the system. We wanted to create a space where that balance is corrected. We want people who have actually applied for PIP, been assessed for PIP, appealed decisions, waited anxiously for letters, and built their lives around this support to be able to speak honestly and be heard.

The roundtable is a focused conversation around two simple but powerful questions: What is working well? What is not working so well? From small practical improvements to bigger structural concerns, every contribution helps build a clearer, more truthful picture of how PIP is functioning today.

The insights, stories, and recommendations that come out of the discussion will be carefully captured and turned into a collective lived experience response to the government’s PIP review. We will also share key themes back with participants, partner organisations, and decision-makers who can act on them.

What PIP Enables Me to Do

I want to speak honestly for a moment, because this isn’t just a policy conversation for me – it’s my life. As a disabled person living with mental health conditions, PIP is not a luxury or an extra. It is one of the quiet, essential things that makes a decent life possible. Without it, the gap between simply surviving and actually living becomes very wide.

On a practical level, PIP helps me cover the real costs of being disabled – costs that people outside this experience often don’t see. It helps me pay for taxis on days when public transport is too overwhelming, or when leaving the house at all takes everything I’ve got. It helps me keep my home warm when my body and mind need stability. It helps me buy the food that supports my medication and my energy levels. It helps me pay for the little things – noise-cancelling headphones, a weighted blanket, the right kind of lighting – that make the difference between a manageable day and a day lost to sensory overload or a mental health dip.

But the impact goes far beyond receipts and bills. PIP gives me the breathing room to look after my mental health. It means I can attend my therapy appointments without having to choose between them and my electricity bill. It means I can say no to situations that would push me into crisis, because I am not financially forced to say yes. It means I can rest when I need to rest, instead of pushing my body and mind past the point of collapse and ending up worse off.

PIP also enables me to contribute. That part matters to me. Because I have this support, I can do the work I do: advocacy, storytelling, showing up for my community. I can hold down relationships. I can be a good friend, a present family member, a reliable colleague on the days I’m well. People often frame disability benefits as something that holds people back. For me, the truth is the opposite: PIP is what makes participation possible. It is the scaffolding that lets me show up in the world.

Living with a mental health condition alongside a disability means my needs shift. Some weeks I manage well. Other weeks, everything is harder. PIP gives me the stability to weather those shifts without falling off a cliff. It gives me dignity on my hardest days and independence on my best days. It means I don’t have to justify my existence every time my symptoms flare up.

This is the reality I want the review to understand. PIP isn’t just a payment – it is access. It is safety. It is the difference between being pushed to the edges of society and being able to take my place within it. When PIP works, it works quietly in the background, enabling people like me to build a better life. When it doesn’t, the consequences are serious – not just financially, but physically, emotionally, and psychologically.

That is why my voice, and the voices of others like me, need to be in this review.

Why Lived Experience Voices Are So Important

Lived experience is expertise. No one understands the impact of a policy better than the people who live with its consequences every day. When disabled people are at the centre of conversations about disability benefits, policy becomes sharper, fairer, and more effective. Decisions made without that expertise tend to miss the mark, creating systems that are harder to navigate, more stressful to engage with, and less responsive to real need.

Centering lived experience is also a matter of principle. “Nothing about us without us” should be the minimum standard. If the government is serious about improving PIP, then the people who rely on it must be genuinely heard, not just consulted as an afterthought.

What to Expect

The space will be rooted in lived experience storytelling, and offer different ways to contribute. Your insights will directly inform a collective lived experience response to the review.

Date: Tuesday 5 May

Time: 6:00pm – 7:30pm

Location: Online (joining link will be sent once you confirm your place)

How to join: Please email isaac@peoplesvoicemedia.co.uk with any questions, or to confirm you’d like to attend, and we’ll send over the joining link and any final details.

If you have any access needs or would prefer to contribute in a different way, please just let us know. We’ll make sure the space works for you.

We are grateful to everyone who is showing up to share their story. Your voice will shape what we take to government – and that is exactly how it should be.

We are really proud to announce that our fantastic friend, colleague and leader Isaac Samuels OBE has been nominated for Disability Personality of the Year at the Empowerment Awards. Huge congratulations, Isaac!

The Empowerment Awards are Britain’s most inclusive awards that celebrate changemakers and trailblazers in the disability community. The final ceremony will take place at the Emirates Stadium on 20th March 2026.

Isaac says: “I’m still slightly stunned if I’m honest. It feels like a massive honour and a real moment to pause and reflect on the journey so far.”

“Being shortlisted means a lot because it recognises over 25 years of work alongside disabled people, communities, and partners across health and social care. Together we’ve pushed for co-production, challenged exclusion, supported suicide prevention, and worked to make sure people with lived experience genuinely share power in decisions that shape their lives.”

“Anyone who knows me knows this has never been about titles or awards. It has always been about people, relationships, and creating spaces where everyone feels heard, safe, and able to show up as themselves. Receiving an OBE in 2025 was already beyond anything I imagined, so being a finalist here genuinely knocked me sideways in the best possible way.”

The final stage now comes down to a public vote, so we want to spread the word and make sure Isaac gets recognised for their work.

If you would like to vote for Isaac, simply follow these steps:

• Go to: https://empowermentawards.org/voteforfinalist
• Sign in with your email
• Select ‘Disability Personality of the Year’
• Vote for Isaac Samuels!

Best of luck Isaac in the awards, the whole People’s Voice Media team are rooting for you!

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