Proposed PIP Reforms: What You Need to Know

By The Primary Health Awareness Trust

As many of our members and supporters are aware, new proposals are being discussed that could significantly change the way Personal Independence Payment (PIP) is awarded and managed across the UK.

These proposed reforms include:

• Changes to eligibility criteria for new and existing claims
• The potential replacement of cash payments with vouchers or direct service access
• A focus on “visible disabilities” rather than hidden or fluctuating conditions like epilepsy, mental health, or neurodivergence

“As someone who has lived with epilepsy, hidden disability, and the daily risks that come with it — this is more than just policy. It’s personal. It’s about survival.”

How This May Affect You

Even if you currently have a long-term PIP award — including those awarded until 2030 or beyond — there is a possibility that reviews or legislative changes could affect your status.

For individuals with hidden or fluctuating conditions, it is crucial to:

• Keep a personal log of symptoms, triggers, and impact
• Document missed appointments or delayed care due to systemic issues
• Maintain digital or paper evidence of your ongoing need for support
• Let someone know — publicly, if you feel safe — what you’re experiencing

What You Can Do Now

The Primary Health Awareness Trust will continue to monitor and support the community during this period. In the meantime, we encourage you to:

• Join our mailing list for updates
• Attend one of our upcoming Zoom support sessions
• Write to your MP or local representative if you’re concerned
• Ask your GP to document how your condition affects you

Above all — don’t let fear silence you. Your experience matters. Your story matters. We will always advocate for people whose disabilities are misunderstood or ignored.

“I’ve spent over a year without neurologist appointments because of NHS staffing issues. That gap alone could be used to deny me help. But that doesn’t mean my condition disappeared.”