After working with and receiving valuable feedback from the community, Action for ME have submitted a response to the consultation on the Department for Work and Pensions (DWP) Green Paper on disability benefits.
The Charity has heard countless times that the current condition-based assessment for Personal Independence Payments (PIP) fails to account for the fluctuating nature of the disease and that members of the community have felt that the process is stressful and at times, debilitating.
By engaging with this consultation, Action for ME, has ensured the voices of those with ME/CFS are being heard and considered as the reform of disability benefits continues under the new government.
The Green Paper consultation is a critical opportunity to influence future policy and make disability benefits more equitable and accessible for people with ME/CFS. Our response highlighted several key areas where change is needed:
1. Recognition of the need for a functional based assessment: Functional based assessment is in line with the social model of disability and ensures that support is always focused on individual need, creating a person-centred system that recognises the complexity of various conditions and the different ways in which people may experience them.
2. Fair assessment processes: Action for ME frequently hears about “stressful” and “debilitating” assessments which, in some cases, actually worsen someone’s condition because of their traumatic and invasive nature. To be forced to attend PIP assessments in this condition is highly challenging, often unfeasible and may compound symptoms further. Moving to an appropriate system that removes the need for an assessment where there are such severe symptoms and impact is needed.
3. The need for greater support: Moving to a system that removes the need for an assessment where there are such severe symptoms and impact would be accommodating however, this would require the need for a specialist to evidence a person’s condition. Given that specialist ME/CFS services are not commissioned by every Integrated Care Board it is clear that there is a postcode lottery of care and a distinct lack of specialist services across the country. The Charity’s recent FOI confirms the disparate nature of support and the number of people falling through the cracks as a result. Action for ME remain concerned by the potential that some may find it harder to access PIP due to a disconnect between nationally administered social security and locally commissioned health services. This has been reflected in the response.
By engaging with the consultation, Action for ME aim to improve the accessibility of benefits for people living with ME/CFS by pushing for a system where the severity, fluctuating nature and impact of ME/CFS is properly acknowledged.
Most importantly, through this type of engagement, Action for ME can continue to advocate for greater awareness from policymakers about the complexities of ME/CFS, which will ultimately lead to more informed decisions.
Action for ME would like to thank everyone who used up valuable time and energy to contribute to the response. Sharing the real-life experience of the community with policymakers is incredibly valuable in showcasing the effect that decisions have on ordinary people.
Action for ME will monitor the progress of the Green Paper whilst continuing to engage with Ministers and officials in the Department for Work and Pensions as the Charity seeks to advocate for meaningful reform to the benefits and health systems for people with ME/CFS.
