As part of our ongoing work to highlight the risks posed by proposed cuts to Personal Independence Payment (PIP) in the Government’s Green Paper, we are inviting people living with M.E. – or their carers – to share their experiences with us. These submissions will help us create ‘pen portraits’ to illustrate how individuals will be affected by the planned reforms.
A pen portrait is a short narrative that, for this particular topic, highlights an individual’s unique circumstances, including their condition, daily support needs, and the practical impact of current or proposed policy changes—such as the Government’s Green Paper proposals for Personal Independence Payment (PIP). These portraits help to humanise policy debates and make visible the costs of proposed cuts or rule changes.
This is part of our collaborative work with the Disability Benefits Consortium. The DBC plans to create a brochure of pen portraits representing many different disabilities to hand to MPs at a welfare reform parliamentary event to inform them before participating in any welfare-reform related debates or voting sessions.
If you’d like to contribute, please don’t worry about writing a full case study, we can do that for you. Instead, we simply ask you to share details about your (or your loved one’s) support needs and experiences. We will keep your information safe and confidential, using only your first name in any published materials.
Example Pen Portrait Information
Pen Portrait: Sophie
Sophie is a 29-year-old woman living with M.E. She lives alone but relies on daily support from her mother, who visits twice a day. Sophie qualifies for PIP under the current points system, scoring 10 points across several activities but not more than 4 in any one area.
She needs help preparing and cooking meals safely (2 points), as standing for long periods worsens her fatigue and causes dizziness. She often forgets to take medication without prompts (2 points) and needs support planning journeys due to cognitive overload and sensory sensitivity (2 points). Sophie also struggles to manage complex budgeting and requires help to understand correspondence about her bills and healthcare (2 points). Though she can engage socially, she often needs encouragement and sometimes requires support to express herself clearly in conversation (2 points).
Impact of the Green Paper Changes
Under current rules, Sophie qualifies for PIP, which helps her cover essential extra costs of living with M.E. If the Green Paper changes go ahead, she would lose eligibility for PIP because her points are spread across categories rather than concentrated in one (no more than 4 points per activity). She would lose around £331 per month—money she uses for prepared food, help with housework, and private physio sessions.
This change would also mean she loses her entitlement to the Universal Credit health element by 2028, resulting in a total annual loss of over £8,600. Sophie does not qualify for council-funded social care, so PIP is currently her only support for managing independence at home. Without it, she risks isolation, declining health, and unmanageable financial strain.
Would you like help turning your experience into a pen portrait like Sophie’s?
Take action now – Share your story and help expose the real impact these proposed PIP changes will have on our community.
Deadline for submissions 11th May 2025.
Email [email protected]
Thank you.
