Teen housebound by ME fined by school for being ‘truant’ – now benefits assessor says she’s not in enough pain | 26 April 2019

 

i News, Real Life, by Claudia Tanner.

Georgia Whyard claims teachers said she had ‘school phobia’ despite having an official diagnosis of myalgic encephalomyelitis

  • The once A* pupil suffers pain, extreme exhaustion, and migraines
  • Mother says she was branded ‘school phobic’ due to poor attendance
  • Department for Work and Pensions ruled she is not in pain

Georgia Whyard was struck down with ME when she was 12 years old after a viral infection (Photo: Rachel Surita)

Georgia Whyard 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 ME, at just 12 years old.

She became house-bound, crippled by widespread pain and suffering extreme exhaustion, migraines and brain fog.

Yet the teen’s mother, Rachel Surita, says her teachers branded her ‘school phobic’ due to her poor attendance, even sending out a truancy officer to drive her into lessons.

She claims she was repeatedly issued with fines and threats of jail for failing to send Georgia to school.

Now 18, Georgia has been denied disability benefit after the Department for Work and Pensions said it believed she was not in pain.

“Having to battle all the time to be believed takes its toll”

Georgia’s mother Rachel 

Georgia is one of 250,000 Britons suffering with the illness also known as chronic fatigue syndrome (CFS).

For decades, this mysterious condition – for which there has been no definitive cause and no formal diagnosis established not cure – was dismissed as ‘yuppie flu’ and even ‘shirker syndrome’. Now most experts in the medical community agree it is a biological illness.

However, despite these advancements, many patients like Georgia feel they still face a battle not just with the symptoms, but in being believed that their illness is real.

“Having to battle all the time to be believed takes its toll,” said Rachel.

‘School phobia’ claims

Georgia, from Essex, first became ill after suffering a sore throat. It’s suspected ME can be triggered by a viral infection.

“Within days of getting a sore throat she was sleeping 17 hours a day and I knew something just wasn’t right,” said Rachel.

“They [the school] said she had ‘school phobia’ and anxiety and suggested she see a psychologist, despite the official CFS diagnosis”

Rachel Surita

Her GP referred her to a hospital specialist and a few months later Georgia was told she had CFS, most likely as a result of glandular fever.

“The school was sympathetic while she had glandular fever but then they started putting pressure on her to come back to school,” said Rachel.

“They said she had ‘school phobia’ and anxiety and suggested she see a psychologist, despite the official CFS diagnosis. It’s a battle we had for two years and it was very frustrating.”

Georgia said: “My school’s knowledge of ME was very limited and because it is an invisible illness they just didn’t take the time to understand. I wasn’t given any support.”

At 14, Georgia was told she had to leave Gable Hall in Corringham and was sent to a pupil referral unit, local-authority run facilities for students who are excluded or too sick to attend mainstream schools.

She managed to pass four GCSEs and enrolled in USP College in Grays but Rachel says due to her poor attendance her daughter was told she wouldn’t be allowed to continue her media course, dashing her hopes of getting an education.

Scored zero in benefits assessment

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 daughter when she was under 16, then later Georgia was refused Personal Independence Payment (PIP).

Georgia began sleeping for 17 hours a day after getting a sore throat (Photo: Rachel Surita)

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 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.

ME not taken seriously

She also claims Thurrock Council have refused to rehouse the pair from their first floor maisonette.

“Georgia has become more exhausted since we moved here because of the stairs in the flat and outside, and an occupational therapist has written a report to say she is living in unsuitable accommodation.

“But the council say she will get better in time.”

“I don’t think ME is taken seriously at all in the UK, some still believe it doesn’t exist”

Georgia Whyard

George told i she wishes her illness was taken more seriously. “My life with ME isn’t really a life, it’s a never ending battle. I’m always fighting for something, fighting to be heard, fighting for medical input.

“I’m now fighting for benefits, as I’m unable to work. I’m not able to be the person I planned to be and this condition keeps me a prisoner.

“I don’t think ME is taken seriously at all in the UK, some still believe it doesn’t exist.

“I believe once diagnosed, the person should be classed as having a long term disabling condition, which will make it easier to get the help they may need.”

Response by the authorities

The DWP told i that Georgia failed to provide medical evidence of her illness –which she denies – and says an assessor found she didn’t show any signs of being in pain or suffering musculoskeletal restriction.

A spokesperson said: “We’re committed to ensuring that disabled people get the support they’re entitled to.

“Decisions for PIP are made following careful consideration of the evidence provided by the individual and their GP or medical specialist, and anyone who is unhappy with their decision can appeal.”

USP College said it could not comment on individual cases and said “we do take the health, safety and wellbeing of our students seriously”. A spokesperson said it had a policy to place to provide individual special arrangements for students who are physically or mentally unwell.

Gable Hall and Thurrock Council have been approached for comment.

ME ‘not a mental health condition’

Frustration, anxiety, low mood and depression are sometimes experienced by people with ME because of the impact of symptoms on their lives.

A parliamentary debate last year was told how sufferers are more than six times likely to commit suicide.

But as NHS Inform points out: “This does not mean that ME-CFS is a mental health condition.”

Indeed, in 2017 US researchers from discovered molecular changes in the brain of people with CFS. Another study found sufferers showed a higher levels of a protein linked to inflammation in their blood, suggesting the condition is triggered by overactive immune system.

“ME is the most common medical reason for children being off school yet it is massively misunderstood,” said John Siddle, from the ME Association.

“It is an invisible illness. When you see people with ME, they might not always look ill – and yet it can lead to greater functional impairment than multiple sclerosis or cancer.

“There is no known cure and no effective treatment. We desperately need more funding towards research and give people a fighting chance of reclaiming their health.”

For more information on ME, or to support research through donating, visit here.

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