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Joint Letter to James Wolfe (DWP)

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29 May 2025

Concerns about proposed changes to PIP eligibility

While the majority of people with symptomatic hypermobility live without significant support needs, for those of us with more severe symptoms and/or additional associated conditions, the combined and cumulative effects can be utterly debilitating. For these people, PIP (Personal Independence Payment) is essential, compensating for some of the substantial extra costs of disability, and funding the support needed to participate in everyday activities like work, social engagements, physical activities, and even medical appointments/treatment.


We stand with The Ehlers-Danlos Support UK and The Ehlers-Danlos Society in calling upon the Department for Work and Pensions (DWP) to reconsider the impact of these changes on those with significant systemic impediments, which are not obvious to the casual observer but impact every area of daily life.


Some useful links: 

Campaign for Disability Justice: https://www.campaignfordisabilityjustice.org.uk/ - a coordinated campaign where you can register your concerns about the changes,

Turn2us: www.turn2us.org.uk/- for help and support with PIP/ disability claims.



Attn: Mr. James Wolfe Department of Work and Pensions April 2025 Dear Mr Wolfe, We write collectively on behalf of those living with Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), and associated conditions, to express deep concern over the proposed changes to the Personal Independence Payment (PIP) system in the UK. We understand that the key change is that at least one domain must score a 4 or more for a person to be eligible for PIP. Many of the community we represent record scores of 2 across multiple domains which collectively in an individual represents a significant burden on activities of daily living. Under the new scheme these individuals would not be eligible unless at least one of their concerns scored a 4. How can that be justifed? These changes risk disproportionately disadvantaging our community - individuals already burdened by chronic pain, fatigue, joint instability, and multisystemic complications that are often invisible, poorly understood, and devastatingly life-altering. EDS and HSD are complex and lifelong conditions that frequently go unrecognized, misdiagnosed, or dismissed altogether by healthcare professionals and benefits assessors alike. The impact of this systemic misunderstanding has been significant: delays in diagnosis, lack of access to appropriate care and treatment, and insuficient recognition in disability support frameworks such as PIP. Many with EDS and HSD rely on PIP to meet basic daily living and mobility needs. This support is not a luxury; it is a lifeline that enables independence, dignity, and participation in society. Any move to restrict access, tighten criteria, or overlook fluctuating and invisible disabilities will compound the barriers this community already faces. It will push more people into crisis - physically, emotionally, and financially. We urge policymakers to recognise the unique challenges posed by EDS, HSD, and related conditions. Assessments must be informed, compassionate, and rooted in an understanding of the lived experience of those a effected. Now is the time to amplify their voices—not silence them further through exclusionary reforms. We stand united in calling for a benefits system that upholds equality, justice, and dignity for all disabled people in the UK. Signed: Professor Lara Bloom The Ehlers-Danlos Society Susan Booth The Ehlers-Danlos Support UK Lisa Bone The Hypermobility Syndromes Association (HMSA)
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