Living with a chronic, disabling neurological condition such as multiple sclerosis is not just hard - it's expensive.
We know that many people with MS rely on support from disability benefits to live full and independent lives. This can mean a Motability car, help paying for essentials and for some it can mean food in the cupboard.
Having a disability also means there are hidden extras to pay for, such as accessible transport costs, cleaning, gardening, DIY and maintenance. The Extra Costs Commission has estimated that a neurological condition, such as MS, can cost on average an additional £200 a week.
Unfortunately the system put in place to provide this vital support is just not making sense for people with MS. Too regularly I hear from people who are struggling as a result; stories of the stress of having to 'prove' their disability to a stranger who does not understand the hidden impact of MS, or missing out on vital benefits due to inappropriate criteria.
Fluctuating and hidden symptoms
To launch our new campaign MS: Enough, we've made a film that shows how the benefits assessment system too often fails to capture the reality of MS, especially its fluctuating and hidden symptoms. Inaccurate, inappropriate assessments can have a devastating impact on someone with the condition if it means they are not able to access the support they need.
Not getting the right financial assistance can mean cutting down on food, heating and socialising. It can mean not being able to pick your children up from school or even cutting back on hospital trips.
Harming people's health
In a new MS Society survey of people with MS who access benefits, we found that one in 10 (9%) of nearly 1,800 respondents say they have reduced spending on attending hospital appointments. And one in ten (9%) cut down on medical treatment or prescriptions, as a result of benefit changes.
Perhaps even more worryingly, we found that the assessment system is causing stress and uncertainty that may be harming people's health. This is, of course, counterintuitive to a system designed to support those with disabilities.
Nearly half (48%) of those who had an assessment for Employment and Support Allowance (ESA) feel the process caused their condition to deteriorate or relapse. And 36% who had a face-to-face assessment for Personal Independence Payment (PIP) feel the same.
These are people like Jackie, who relapsed so severely after having her assessment that she couldn't walk, her fatigue was overwhelming and she lost part of her vision. Jackie can only put this down to the stress of the uncomfortable and physically demanding test.
Common sense changes
This issue is particularly pertinent as the Welfare Reform and Work Bill (which includes plans to reduce the support for people in the Work Related Activity Group for ESA) goes through the House of Commons.
The Government needs to make basic, common sense changes to urgently improve how the system works. We want disability benefits assessments to take into account the fluctuating and hidden symptoms of MS, and evidence provided by experienced professionals who understand the condition.
We want to see assessment criteria which do not reflect the impact MS can have on someone's life to be changed.
MS is enough
We know that this is an issue that impacts on many people with MS and their families and friends. People affected by MS can support the campaign by signing our petition to the Government calling for change.
Having MS is enough. People with the condition should be able to rely on support when they need it without the constant fear of having it taken away.
The MS Society wants to see common sense steps taken to make sure the disability benefits system is working for those who rely on it or people will continue to struggle.