A new inquiry into the UK social security system launches today but it is not the failings of, say, disability benefit fit-for-work tests, or universal credit that will be its main focus. “What we don’t want to do is take evidence on what the problems are because we’ve been talking about those for many years now; they are well-evidenced,” says disability activist and commission co-chair Ellen Clifford. “This is about what something better would look like,”

What’s distinctive about the inquiry, says Clifford, is that it puts centre stage the knowhow of people who understand what it is like to be on benefits, hence the inquiry’s full title, the commission on social security led by experts by experience. Over the next few months it will take evidence from benefit claimants on how they think the system can be improved. A consultative green paper will be drawn up, then a white paper with policy recommendations, followed by a campaign based on the changes they would like to see implemented. Respondents will be asked eight questions, ranging from how to make universal credit better, to the ideal level of benefit payment, to what best to do about benefit sanctions. If they think that universal credit cannot be improved and should be scrapped, they must say what would replace it.

“There’s such a huge feeling among claimants that universal credit is so fundamentally flawed that we think it is a serious argument that it needs to be got rid of, but we obviously need to think about what comes instead,” says Clifford.

The commission also wants views on five core principles on which it proposes a social security system should be based, including ensuring claimants have enough money to live on, treating claimants with dignity, respect and trust, and treating welfare as a public service with rights and entitlements. At the centre of the initiative, which is funded by the Trust For London, is a determination to rethink the current system in a way that avoids what Clifford sees as a major shortcoming of mainstream policy-making. Too often the people who design it, in thinktanks and Whitehall, are ignorant of the lives of those their policy is supposed to serve, she says. She points to recent government proposals to address disabled claimants’ frustration with having to undergo repeated benefit eligibility assessments by suggesting the separate tests for employment and support allowance and personal independence payments are merged. Sensible in theory, maybe; possibly catastrophic in practice, not least because it has the potential to leave people overnight without financial support. “If you are too removed from the people it affects you can come up with solutions that can often be more dangerous,” she says.

Recent social security policy is riddled with visions that are elegant in the eye of the benefits provider but which are revealed to be brutally unfriendly to the claimant on contact with real life. Some of the flaws in universal credit – the obsession with a rigid system of monthly payments paid in arrears for example – were “genuinely not thought about”, reckons Clifford; similarly the system’s failure to acknowledge some claimants’ lack of internet access or digital skills, the requirements of people with mental illness or learning disability, has led to well-documented cases of injustice and destitution.

The government could be more open to user experience, but the climate of official hostility to claimants – she cites reports of police passing on details of wheelchair-user anti-fracking protesters to the Department for Work and Pensions – creates distrust, she says. The names of the commissioners – all service users – are not published, precisely because they fear their involvement will be used to “prove” they are fit for work.

“It is difficult at the moment because people don’t want to speak directly to [the Department for Work and Pensions] because they are frightened. Any kind of evidence of activity gets used against you for your benefits to be taken away.”

Clifford, 41, is a mental health service user and disability activist of 20 years standing who was politicised by her experience of seeing “the way people can be treated of lesser human value just because they have got impairments”. In the New Labour years she recalls much naive optimism as activists stopped protesting and talked to government about achieving full equality of disability by 2025. “We got used to sitting round the table. People literally forgot how to chain wheelchairs together over those years,” Clifford recalls. It was a shock, she says, to realise that these same Labour ministers were developing ideas – such as the work capability assessment – that would underpin the post-2010 welfare reforms that have made life so much harder for people with a disability.

“I never imagined that we would see things go backwards so quickly, so drastically,” she says of the past nine years of austerity that have disproportionately affected disabled people by cutting benefits. Working with deaf and disability charities in London and as a member of the pressure group Disabled People Against Cuts, meant she saw the malign effects on claimants – the anxiety, poverty and unhappiness – close-up. She’s not confident the bigger picture will improve any time soon. But she is optimistic about the commission: “I’m not entirely sure what’s going to come out of the other end but I know there is value in the process.”

Curriculum vitae

Age: 41.

Lives: Lewisham, south London.

Family: Partner and cat.

Education: Old Palace School, Croydon; St Hilda’s College, University of Oxford (MA Oxon history); King’s College London (MA ancient history).

Career: 2019 to present: disability consultant and writer; 2012-19: head of campaigns and policy, Inclusion London; 2011-18: co-ordinator, Bromley Experts by Experience; 2007-11: management committee supporter and coalition consultant, Newham People First; 2008-10: service user involvement manager, Equinox Care; 2002-07: supporter to the director and national manager, People First (self advocacy); 2000-02: service user involvement development manager, Wandsworth Care Alliance; 1999-2000: assistant programme manager, National Autistic Society; 1998-99: volunteer personal assistant, Coventry University.

Public life: chair, The Commission on Social Security (Welfare Benefits) led by experts by experience; member, Mayor of London’s Equality, Diversity and Inclusion Advisory Board; member, national steering group, Disabled People Against Cuts.

Interests: Sunderland AFC, milkshakes.