Welfare support is vital for many people with MS. It helps us manage the extra costs of the condition, stay in work for longer and participate fully in society.
Yet our welfare system too often ignores invisible symptoms like pain and fatigue and fails to recognise how MS symptoms fluctuate.
The assessment criteria for PIP fail to capture the true extent of the difficulties people face. And benefits assessors don't always take evidence provided by professionals into account. Too often people with MS are under pressure to repeatedly prove they need support.
Campaign to make welfare make sense
We're calling on the UK Government to make welfare make sense for people with MS. That means:
- changes to assessment criteria, like the 20 metre rule, so they accurately reflect the barriers faced by people with MS
- disability benefits assessments that accurately take into account the fluctuating and hidden symptoms of MS and their impact.
- a disability benefits system that takes adequate account of evidence from experienced professionals who understand each person’s condition.
- people with MS are able to rely on support when they need it, without unnecessary burden, or constant fear of having it taken away.
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September 2015: We launched the campaign with a petition, asking 'Does Emma need benefits?'
November 2015: We met with the then Undersecretary of State for Disabled People, Justin Tomlinson MP, to talk about why MS is enough. We shared your experiences of the benefits system, including concerns about moving from Disability Living Allowance (DLA) to PIP.
March 2016: On 11 March the Government announced changes to PIP assessment scoring that would leave some people with MS £150 worse off each week.
We successfully campaigned with other charities to stop those changes. Our campaigners Jayne, Jackie, John, Rajvir and Shana delivered the MS: Enough petition to the Minister, signed by more than 22,000 of you. Then over one weekend 3,000 of you emailed your MPs, calling for an emergency debate on this issue. And together we secured a full Government u-turn with assurances there were "no further plans" for spending cuts on welfare in the 2016 Parliament.
October 2016: The Government announced that some people with conditions like progressive MS who can't work will no longer face benefit reassessments. New criteria are being developed for Employment Support Allowance (ESA) and some people will have their reassessments stopped. This means they won't be asked again to prove they are too unwell to work.
In November 2016 we focussed on helping people with MS get the support they need to stay in work. More than 90 MPs signed the pledge.
What's the evidence?
We commissioned a new report into PIP in 2018 that shows it's failing people with MS.
We surveyed 1,780 people with MS about the role of disability benefits in lives and their experience of the system.
For more information about our findings and recommendations for the nations: