Somerset residents living with multiple sclerosis have joined a national campaign to reform the benefits people with their condition receive.

Multiple sclerosis (MS) is a condition which affects the brain and spinal cord, whose main symptoms include fatigue, difficulty walking or balancing, blurred vision, numbness and muscle stiffness.

The MS Society, which represents people with the condition, has called on the Department for Work and Pensions (DWP) to reform the personal independence payment (PIP), which was created in 2013.

The society claims the benefit has having a "detrimental impact" on the overhaul health of MS patients, including the eligibility criteria they must meet to receive it.

The MS Society surveyed more than 3,500 people living with MS across the UK for its new report, PIP and MS: a Decade of Failure, which was recently published.

The report found that:

• Almost two-thirds (65 per cent) said going through the assessment process had a negative or very negative impact on their physical and mental health
• More than six in ten (61 per cent) said their assessment report did not give an accurate reflection of their MS – with almost half (45 per cent) stating they felt that they did not receive the correct award
• Nearly three quarters (72 per cent) said the assessment made them feel anxious, while over two-thirds (69 per cent) said it made them feel stressed. More than a third (37 per cent) said that it made them feel embarrassed
• Almost two-thirds (62 per cent) didn't feel the assessor considered their invisible symptoms such as pain, fatigue or cognitive difficulties

PIP replaced the disability living allowance (DLA) in 2013, and is the main disability benefit people living with MS claim in the UK.

It is intended to enable people to live independently and support them with the extra costs of their condition – such as mobility aids and adapted vehicles.

In practice, however, the MS Society claims the PIP process is no fit for purpose, leading to financial costs and high stress for those being assessed.

Bethen Thorpe, 47, lives in Wells and was diagnosed with relapsing MS in 2014.

Her main symptoms include numbness, exhaustion, blurred vision and burning sensations – meaning she struggles with household tasks, is rarely able to leave her home, and needs extra help to pay for travel.

Ms Thorpe has been through three PIP assessments since she was diagnosed – and has had to appeal all three outcomes.

She said: "My first assessment was when I lived in London, and I had to travel 40 miles to Chelmsford for the meeting. The report stated I could 'carry a handbag' so I wasn't awarded anything.

"At my second assessment, my dad was supporting me but the report stated there was nothing wrong with me – so we had to appeal and go to tribunal again.

"Earlier this year, I was told I'd have another assessment out of the blue. I felt awful in the build-up; I was so stressed that I couldn't get out of bed.

"On the day, I had all the paperwork and the legal files open in front of me so I could answer questions. But in doing so the assessor said I had 'no problems with interpreting signs' – but I can barely see – everything is blurred!

"I could tell I was being judged because I speak articulately. For example, they marked me down because I was able to name the medication I'm on.

"I was awarded the standard amount where I was on the enhanced level before – around £100 a month difference. This additional money allows me to pay for escalating transport costs, including taxis to appointments and the cost of railcards.

"I appealed and thankfully the decision has been changed to the higher award for both elements of PIP – which covers daily living and mobility costs.

"I've had quite severe depression and my symptoms have worsened with the stress of PIP. I've been upset about it, as you shouldn't have to go to court two times.

"I try to be pragmatic and sensible, but the fact you have to keep being questioned isn't fair.

I'm getting older – my MS is progressing, and I I don't know whether I can keep fighting it. But further down the line, are they going to take even more away?"

The MS Society has called for the DWP to review and overhaul the PIP assessment process, including:

• Scrapping the '20-metre rule' for assessing mobility (under which people who can "reliably" walk one step over 20 metres – the length of two double decker buses) won't receive the higher rate of support)
• Removing all 'informal observations' for people living with fluctuating conditions like MS – including how they behave during the assessment – rather than relying solely on medical evidence
• Changing the '50 per cent rule' for assessing fluctuating conditions – under which a condition can be ignored if it does not affect an MS patient 50 per cent or more of the time

Julia Sealey, 54, from Taunton, was diagnosed with relapsing MS in 2020, after losing her ability to speak.

She had experienced other symptoms for many years before diagnosis, including being unable to walk for a period of time – and in 2022, she found out her condition had moved onto secondary progressive MS.

With this form of MS, symptoms do not relapse or ease and Julia's condition will only get worse.

There are currently very few treatments for progressive forms of MS and none that are suitable for Ms Sealey – meaning she now lives with difficulty walking, along with the loss of use of her left hand, fatigue and pins and needles.

She applied for PIP during the coronavirus pandemic and was assessed over the phone.

She said: "The assessment was awful. It was lockdown at this point, so I was assessed over the phone. The process was diabolical, I found it very stressful.

"At the time, my speech was badly affected by my MS which made it even harder. They asked me a lot of questions about household chores and my ability to perform everyday tasks, but they didn't take into account my fatigue or any of my invisible symptoms.

"There's no understanding of MS or what you're going through on a daily basis. Because MS has so many different symptoms, the people assessing you have to have more than just a basic understanding.

"You're made to feel like a fraud, a liar, like there's nothing wrong with you. It's belittling. I'm a strong person, but that made me feel stressed, upset and anxious.

"You're already feeling those things living with a lifelong condition – you have enough to deal with. But the PIP assessment just makes you feel even worse, it's so wrong."

MS Society policy manager Anastasia Berry said; "Living with MS can be exhausting, painful and debilitating – yet on top of managing gruelling symptoms, too many people with MS like Bethen and Julia are forced to fight for the basic support they're entitled to.

"MS is a progressive, incurable condition, which will usually worsen over time -yet people with MS are regularly reassessed and made to prove their condition hasn't improved.

"Ten years of a broken PIP system has meant a decade of stress, indignity and humiliation for people with MS. Our latest report reveals the devastating impact it can have on both physical and mental health.

"Politicians across parliament don't have a plan to make PIP right, but we can't allow this to continue. The government must fix PIP now and stop failing people with MS."

Somerset Council was approached by the Local Democracy Reporting Service but said it was unable to comment since it does not directly deal with the PIP process or the distribution of DWP funding.

To sign the MS Society's petition calling for a review of PIP, visit  www.mssociety.org.uk/fix-pip.