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Make benefits make sense: have your say

Speaking out about disability benefits

The UK Government recently consulted on their plans to improve disability benefits, outlined in the Health and Disability Green Paper published in August. We've now responded to the consultation with our campaigns community.

We waited two years for the Health and Disability Green Paper. So we wanted to make the most of this opportunity to make sure the UK Government knows what they need to do to make benefits work for people with MS.

Almost 500 of you took action to tell the Government how to improve disability benefits. We also responded to the consultation directly with experiences from our MS community.

We need an assessment process we can trust

The Green Paper contains a large number of proposals, some of which we think will improve support for people with MS.

However, the Government must urgently reform the assessment criteria and how assessments are carried out. We know personal independence payment (PIP) is failing people with MS.

This includes the unfair 20-metre rule and inaccurate ‘informal observations’ that fail to take into account the fluctuating nature of MS and hidden symptoms.

These are costing people their independence. We need an assessment process we can trust. Decisions need to be backed up by evidence not assumptions, and assessments carried out by people with good knowledge of MS.

Disability benefits must increase

The Green Paper has failed to recognise that many people claiming these benefits are facing financial hardship. And that the only way to truly change this is by increasing the rate of health and disability benefits.

Health and disability benefits aren’t just for people out of work. Employment is impossible for many people living with MS, but they shouldn’t face financial difficulties as a result.

Disabled people who can't work also need independence

The Green Paper talks about disabled people having equal access and being able to participate in society. But this doesn’t just mean work.

Disabled people who cannot work should still be able to live as much of an independent life as someone who can.

Read our full response (PDF 953.62 KB)

Your responses made this possible

Five hundred people affected by MS shared experiences through our online form. And 20 people living with MS attended our focus groups and in-depth interviews. So we were able to give informed answers to the Government’s questions and share quotes from our MS community.

Here's some of the things you told us:

“There were unreasonable expectations that besides looking after my family, and managing my MS, I have the time and capacity to meet their expectations regarding weekly time spent looking for a job.”

“My condition will never improve, PIP should be for life, unless your condition worsens and you think you could get more. The stress of reassessments and being made to feel like a liar is awful.”

“Once you’ve been granted PIP there is no need to check if you’ve made a miraculous recovery.”

“Not all our disabilities are obvious and people cope in different ways. For example: through MS I lost the sight in my left eye, I suffer severe fatigue and frequent bouts of brain fog and falling. To the observer I appear to manage fine - but I don’t, it takes me days to recover from a simple trip out. I know I am not the only one.”

Our consultation response was also informed by existing MS-specific data and our previously published reports. These also include stories from people with MS, as well as intelligence from a small team of health professionals with expertise in MS.

How to get advice on disability benefits 

We've got support and information about claiming disability benefits. You can also get in touch with our MS Benefits Adviser by calling the Helpline on 0808 800 8000 or emailing [email protected]

What next?

It's not over yet. The UK Government is planning to release their final plans for changes to disability benefits next year.
 
So, we need to be ready to respond when they do. Follow us on social media and join our campaigns community for more information on how to stay involved!

Join our campaigns community

Read our full consultation response here (PDF 953.62 KB)

Read the full Health and Disability Green Paper on GOV.UK