‘I have endometriosis – getting PIP benefits is nearly impossible’

A single mother with endometriosis has said getting personal independence payments (PIP) is “near-on impossible” as the condition can be misunderstood by GPs and benefits assessors.

Amy Hughes, 27, from Petworth, West Sussex, said she has been denied PIP despite receiving her endometriosis diagnosis in February last year.

It comes as Rishi Sunak announced a consultation on the PIP system which could see some disabled people having their benefits reduced or removed altogether if it is judged they do not face higher costs as a result of their condition.

The pledge came as part of a package of reforms to make Britain’s benefits system “sustainable and fit for the future” after a major increase in the number of people signed off work, often on the grounds of poor mental health.

“It’s scary because it’s hard enough as it is for people to get PIP,” Ms Hughes told i. “Especially for people with disabilities that aren’t well-known. It’s going to make it near-on impossible for people like me to get it.”

She said she is on the “highest priority” NHS waiting list for surgery since her diagnosis of “stage 4 deep invasive endometriosis”, leaving her in “severe pain”.

But after waiting 13 years for the diagnosis, she was told she could not access PIP and her case is under appeal and is awaiting tribunal.

Ms Hughes’ benefits assessor marked her zero in every category, despite interviewing her about how the debilitating condition affects her life and reviewing her hospital notes, she told i.

“He said over the phone that I did not sound to be in pain or discomfort,” she added.

Ms Hughes’ case is under appeal after she was marked zero for every category (Photo: Amy Hughes)

This includes categories like moving around, managing toilet needs, washing and bathing, preparing food and dressing and undressing.

“Those are all things I struggle with,” she told i. The endometrial growth is on her bowels and it leaves her with painful stomach upsets and “off-the-scale cramps”, leaving her unable to work while also caring for her six-year-old son.

“At any time I could be in the bathroom for an hour at a time and it is constant throughout the day,” she said.

She continued: “Every day I have pain. It goes down my legs, it’s in my back, it’s in my stomach. It’s not just pain, it’s the exhaustion as well. No amount of sleep helps the exhaustion.”

Endometriosis occurs when tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes, according to the NHS. Symptoms include pelvic pain which usually worsens during your period, pain during or after sex, and difficulty getting pregnant.

It affects 10 per cent of women from puberty to menopause, but some patients experience pain more severely and frequently than others.

Ms Hughes cannot work due to the pain so she receives welfare support from universal credit and limited capability for work and work-related activities.

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However, she still only has £150 left at the end of every month after bills to pay for food, clothes and other items for her son.

“The prices of everything have gone up and it doesn’t work,” she said. “PIP would make a huge difference because, on universal credit, it’s still a struggle to get by financially. PIP would just take some of the money worries away.”

Ms Hughes is not alone. Emma Cox, CEO of Endometriosis UK, said there is still a “widespread lack of understanding of the varied and sometimes debilitating impacts” of the condition.

“All too often, we hear stories of GPs, employers, benefits assessors and others simply not believing, or not taking seriously, the symptoms experienced by those with endometriosis,” she told i.

She called on any benefits reform to recognise the impact of long-term, cyclical and intermittent conditions like endometriosis and take them seriously, rather than “being dismissed because their disease isn’t understood, or they didn’t appear unwell at the moment of being assessed”.

The Department for Work and Pensions said Ms Hughes’ case is “currently under appeal”.

A spokesperson said: “We are modernising our disability benefit system to overhaul the ‘one-size-fits-all’ approach and better target it towards those who need it most.

“This will enhance support for people with health conditions and disabilities while ensuring the system is fair to the taxpayer.”