Disabled people’s organisations have published an open letter calling for the Personal Independence Payment review to be independent and led by disabled people; not chaired by the Minister. Coordinated by DPAC Cymru, the letter raises clear concerns about the lack of inclusion and transparency so far.
It sets out what genuine coproduction should look like: clear and public terms of reference; open invitations to Disabled People’s Organisations; accessible ways to participate; and full publication of evidence and minutes so everyone can see how decisions are being made.
This matters in context. Disabled people have been repeatedly sidelined in policymaking that affects their lives; the UN disability rights framework requires governments to closely consult and actively involve Disabled People’s Organisations; the UK has been criticised for falling short, including in scrutiny of the former National Disability Strategy and in monitoring reports to the UN. An independent, transparent process is not a nice to have; it is how we avoid repeating that history.
A reminder of the politics: in the Commons, the Minister said he would follow a clear checklist for a co-produced review; he welcomed a list of requirements raised in debate and committed to work with Disabled People’s Organisations on scope and oversight. MPs including Rachael Maskell pressed for dignity, fairness, and genuine co-production as the baseline for a meaningful review; these points must now be honoured in full.
The ME Association has assisted with drafting this letter and has signed the call for a truly independent review. We support the core ask: this review must be disabled led; independent from government direction; and accountable to Parliament. These principles matter for people with ME/CFS or Long Covid; our community has told us repeatedly that assessment processes can be exhausting and harmful; any review has to be built around fluctuating symptoms, cognitive difficulties, and the reality of post exertional malaise.
If you share these concerns, you can add your name. The letter is open for individual signatures.
Ella Smith
Welfare Rights Consultant,
The ME Association
