Why MS: Enough?

Welfare support is vital for many people with MS.

It helps them manage the extra costs of their 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. 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 peopole with MS.

  • Disability benefits assessments must accurately take into account the fluctuating and hidden symptoms of MS and their impact.
  • The disability benefits system must take adequate account of evidence from experienced professionals who understand the person’s condition.
  • Existing criteria which do not reflect the barriers faced by people with MS should be changed.
  • People with MS must be able to rely on support when they need it, without unnecessary burden or constant fear of having it taken away.

Hidden symptoms overlooked

Hidden symptoms of MS such as pain, fatigue and cognitive difficulties are not always recognised in assessment.

42% of people who had a face-to-face assessment for Personal Independence Payment (PIP) disagreed that the assessor considered their hidden symptoms.

50% of people who had a Work Capability Assessment (WCA) for Employment and Support Allowance (ESA) disagreed that hidden symptoms were considered.

Making progress

September 2015: We launched the campaign, 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.

What's the evidence?

We surveyed 1,780 people with MS about the role of disability benefits in lives and their experience of the system.

  • Over half of them (57%) said that benefits assessments do not accurately determine the impact of their MS

  • More than a third said face-to-face assessments had caused their MS to relapse or deteriorate

  • Many people told us they are having to make difficult choices. Choices like whether they can afford to buy basic essentials, attend hospital appointments or spend time with family and friends.

For more information about our findings and recommendations for the nations:

Add your voice

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