Campaign Update #21: Taking the PIP
Most of our readers will already be well aware of the ongoing outrage around the government’s recent plans for disability benefits reform. Today we’re updating you on a new briefing, which we published yesterday together with partners, focusing on how the proposed reforms PIP are likely to impact people with ME and Long Covid. Long story short: it’s not good news.
Read on to find out more and, crucially, how you can get involved.
Why we’re concerned about reform to disability benefits
Personal Independence Payment (PIP) is a government disability benefit designed to help cover the extra costs of living with a long-term illness - things like care, transport, and specialist equipment.
But for people with ME and Long Covid, PIP already fails too many. Countless people who desperately need this support face repeated refusals and assessments that don't reflect the reality of how their condition impacts their daily life.
Instead of fixing this broken system, the government is now proposing to make it even harder to get PIP. The Pathways to Work Green Paper sets out major changes to the disability benefits system - changes that risk making an already inaccessible benefit even less available to those who need it most.
New data from people with ME and Long Covid
Together with Long Covid Support, Action for ME, and ME Local Network, we have produced a new briefing based on evidence from over 1,200 people living with ME and Long Covid. Thank you very much to everyone who answered the survey. Your 1,200+ responses make this so much more powerful.
The government claims these reforms will help more disabled people into work and grow the economy. But our briefing illustrates the opposite: if these cuts go ahead, even more people will lose vital financial support, with devastating consequences for their health, independence, and prospects of returning to work. The cuts risk driving more people into poverty and deepening health inequalities. In short, the proposed cuts will achieve the exact opposite of what the government intends.
What the survey shows:
Cutting PIP will push people with ME and Long Covid further from the labour market.
The proposed PIP reforms would remove a vital source of support for people with ME and Long Covid.
The current PIP assessment process already systematically underestimates the disabling impact of ME and Long Covid.
You can read the full briefing here.
From evidence to action
Our briefing outlines a series of recommendations. We’re calling on the government to do the following:
Withdraw the proposed PIP reforms, which are based on flawed assumptions and will cause avoidable harm while failing to achieve their stated aims.
Develop a new Disability Strategy co-produced with disabled people.
Fix the systemic flaws in how PIP applications are assessed, ensuring they reflect fluctuating and energy-limiting conditions accurately.
Invest in biomedical research and accessible healthcare for ME and Long Covid, recognising that the biggest barrier to people returning to work is the lack of effective medical treatment.
Embed these actions in the forthcoming ME/CFS Delivery Plan, including targeted research investment and improved training and guidance for DWP staff.
We presented the report to Stephen Timms, Minister for Social Security and Disability, at the joint APPG meeting in May, and we want to get this evidence in front of as many MPs as possible. If you are able, please consider writing to your MP. We have a guide available here.
A word for carers
Last week was Carers Week, and we want to say this clearly: we see you.
Working with people like Karen and Emma, I (Oonagh) see firsthand how carers of people with ME and Long Covid shoulder an enormous, exhausting responsibility - usually hidden behind closed doors. Many carers juggle paid jobs, family life, and round-the-clock care. Too many have been forced to give up work entirely.
Cuts to PIP would make this responsibility even heavier and harder to manage by significantly increasing the financial insecurity of carers as well as claimants.
To every carer reading this: we know how hard you work and how little recognition you often receive. We're fighting alongside you for proper support, fair funding, and an NHS that is truly there for people with ME and Long Covid and the loved ones who care for them every day. For now, hang in there.
We’ll see you next week.
Thank you for all your hard work 🙏💙🫂