The following represents the main press release from the ME Association for Severe ME Day. We will update the blog if and when we hear that news-media outlets have picked it up.
Press Release, John Siddle, PR Manager, ME Association.
PEOPLE suffering from the devastating disease M.E. are failing in their attempts to secure benefits because of ‘humiliating’ DWP assessments, a leading charity today claims.
An estimated 250,000 people in the UK suffer from the incurable condition myalgic encephalomyelitis, with one-in-four left bedbound or housebound.
The neurological condition causes extreme exhaustion, pain, brain fog, and a variety of other symptoms – with the cruel hallmark that they are made worse through exertion.
It means some people with severe M.E. spend their days in darkened rooms, unable even to watch TV or listen to music. Even touch is intolerable, and many are tube-fed.
For Severe ME Awareness Week, charity the ME Association, lays bare the struggle faced by members to obtain the basic Personal Independence Payment, a benefit for people who may need help with daily activities or getting around because of a long-term illness or disability.
The way in which M.E. symptoms fluctuate throughout the day and from day-to-day means that snapshot assessments are often inaccurate.
For example, while a person may be able to walk 20 metres, and prepare a meal, they may not be able to do these tasks in close succession or even on the same day.
Additionally, the hallmark symptom of post-exertional malaise means that the activities at the assessment could trigger a worsening of symptoms that is not seen until days later.
The ME Association is concerned that assessors have little understanding of M.E., and patients are being put through an ordeal of having to justify their genuine illness.
Mum-of-three Lisa Ashmore, 33, from Holsworth, Devon, has severe M.E. and is reliant on full-time care from her husband Steve, 36.
The former horse rider barely has enough strength to hold up a paperback book and has to hide in her room to avoid her condition being worsened by noise from her children.
Yet she has been summoned for a physical assessment to see if she is entitled to retain her employment support allowance benefits.
She said: “I have applied and been denied PIP twice and am preparing myself to apply for a third time.
“Filling out lengthy forms is exhausting, and it is draining to answer such in-depth and specific questions knowing I have no medical evidence to back up the amount of suffering I experience.
“ESA has been slightly easier, as the forms are much shorter and simpler. I was accepted quickly three years ago but have recently been called for a physical assessment.
“I am very worried about it and I'm concerned I will lose my ESA.
“The whole system is impossible for someone with severe M.E. There are far too many hurdles to jump both physically and mentally.
“It feels as though the system is designed to make people fail and deter people from even applying.”
Georgia Whyard, from Thurrock, Essex, was an active child who loved dancing. An incredibly bright pupil, she was being fast-tracked to take 15 GCSEs.
That was until she was struck down with myalgic encephalomyelitis, or M.E., at just 12 years old.
She became house-bound, crippled by widespread pain and suffering extreme exhaustion, migraines and brain fog.
Now 18, Georgia was denied disability benefit after the Department for Work and Pensions said it believed she was not in pain.
Rachel, 49, who is a full-time carer for Georgia, says both of them have struggled to get benefits.
She says she was denied Disability Living Allowance for her daughter when she was under 16, then later Georgia was refused Personal Independence Payment (PIP).
Georgia took her case to tribunal and was awarded PIP, which is a benefit for people who may need help with daily activities or getting around because of a long-term illness or disability.
However, in January she had to undertake a medical assessment and was then told it was being taken off her.
“My daughter’s illness has never got better,” said Rachel. “The doctors just told us to get on with it, Georgia’s had no treatment.
“She can only move from her bed to the sofa downstairs. She often sleeps on the sofa because she hasn’t got the energy to go up the stairs.
“I make her food and also bathe her because she would struggle on her own.
“Yet she was scored zero points for both the daily living component and mobility component.”
Rachel claims Employment and Support Allowance (ESA) and says in the past she has been told by the Department for Work and Pensions (DWP) that she must find work.
Naomi Gilchrist, 26, from Scartho, Lincolnshire, is housebound with M.E. to the extent that, “getting out of bed is a victory – and going from the sofa to the kitchen is like a marathon.”
Before becoming ill, gym-going Naomi was studying a masters in Nursing. Now she says: “I worry people think I’m lazy because I do not work.
“It’s hard to explain severe ME but part of me feels like I have to justify myself to the world.
“I’m not happy to live off benefits. If I could go back to voluntary work I’d do that tomorrow or find a job or go back to uni – but instead my health has robbed me of that.
“Sometimes I feel, especially with severe M.E., we’re ‘out of sight and out of mind’ because we are hidden away from society.
“We are often too unwell to speak up for ourselves because the minimal energy we have just goes on getting through the day.”
Naomi says trying to get support from adult social care simply to get washed and dressed is a “battle”.
“So many times, I and others have tried to get a care package for me and failed.”
She had to wait 10 months when first applying for benefits and was “treated appallingly” by her assessor.
Naomi said, “The benefits process for people with severe M.E. is very difficult in a number of ways – trying to get home assessments, form-filling, thinking and answering questions, lengthy forms and assessments, having to travel and the recovery time.
“And then you add in the lack of awareness around M.E. – obviously they can’t be experts in all conditions, but I’ve often found knowledge and understanding of M.E. a little backwards.”
Nicky Alan, 48, from Paignton, Devon, was diagnosed with severe M.E. following a road accident in 2012.
During the first five years of her illness, she was permanently bedbound. She was handed PIP after a home visit but admitted: “I realise I was very much in the minority.”
“Every friend I have with M.E. has been dragged through tribunals to prove their illness.
“The forms to apply for disability and the benefit system are unfair, unjust and the questioning format in claim applications has no relevance to our unique condition whatsoever.”
The think tank 2020Health revealed in 2017 that 85% of M.E. sufferers in England have experienced loss of employment, creating a £3.3bn cost to the UK economy.
The ME Association has met with Justin Tomlinson MP, Minister of State for Disabled People, Health and Work, as well as DWP civil servants, to express its concerns.
It is hoped further meetings will be arranged with government-contracted assessors Atos, Capita and Maximus.
Dr Charles Shepherd, the ME Association’s medical adviser, said: “People with M.E. face a number of unique barriers to accessing welfare benefits. These benefits can be vital in helping them to meet basic living costs as well as the additional costs of their disability.
“But far too many people with severe M.E. are being wrongly refused DWP benefits that could help to improve their care and mobility – the personal independence payment (PIP) in particular.
“Lack of regular contact with doctors means that they cannot provide medical evidence to support their claim.
“And a lack of medical training on M.E. means that health professionals who carry out these medical assessments for the DWP are often not aware of the severe and persisting level of disability that this illness can cause.
“So many people are only succeeding in obtaining the DWP benefits they should be entitled to after going through a long and stressful appeal process.”
For more information on M.E., or to help fund research efforts, visit meassociation.org.uk
The ME Association greatly appreciates every person with M.E. who comes forward to offer us their stories or to share their experiences. We are always on the look out for more especially from those able to send photos as well.
Talking about Real People with M.E. is arguably one of the best ways we have of raising awareness and it can help to bring us closer together as a community.
If you would like us to consider your story for future press releases, news-media articles, guest blogs on our website, social media posts, or ME Essential magazine; then please contact either: email@example.com or firstname.lastname@example.org
The ME Association
Real People. Real Disease. Real M.E.
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.
ME Association Registered Charity Number 801279