Emma Kemsley investigates the disparity of claiming disability benefits for endometriosis.
Endometriosis, a condition where tissue similar to the uterine lining grows outside the uterus, can cause debilitating pain, fatigue, heavy menstrual bleeding and other health problems. As a result, some patients struggle with everyday tasks and rely on Personal Independence Payment (PIP) to manage the impact of their condition for daily living. However, these claims face a concerningly high rejection rate.
Statistics from Benefits and Work show a success rate of only 34.5% for PIP claims related to endometriosis, compared to a national average of 52%. This raises questions about the understanding of endometriosis within the assessment process and the challenges women face in securing the financial support they need.
Chloe, aged 30, was diagnosed with stage 3 endometriosis with involvement of multiple organs. She has undergone two surgeries and struggles with side effects of the disease such as lower back and abdomen pain, pain related to her bladder and bowel and severe fatigue. As a result, she had to quit her “dream career” as a veterinary nurse.
“I had to leave the practical side of my career and took an admin role from home,” she explained. “I was unable to lift or restrain patients and I was very unwell after every shift. I felt like a burden on my colleagues.
“I struggle to stay awake, to socialise and be a normal human being. I often work from bed.
I struggle to drive distances without falling asleep at the wheel and I am always scared that I will have a sudden flare up when out in public.”
Financial troubles PIP was recommended to Chloe by a friend who heard about her money struggles. Chloe said: “I was struggling financially due to having to change my job, reduce my hours and no sick pay from work, cost of medications and supplements.
“I was selling my possessions to help pay my bills and stop me going into debt. Each time I worked more hours, I paid for it by becoming more unwell for the following 24-48 hours. I looked for other ways to try and make money without putting a strain on my body, but they just weren’t there.
“I felt ashamed to apply, I didn’t want to rely on anyone else for financial help and felt guilty, but eventually I hit rock bottom and could see no other option. So, I sucked up my pride and completed my application.”
Despite meeting some of the PIPs criteria, Chloe was rejected, and subsequently, had to move in with her family for additional support and care.
Chloe says the rejection was devastating and that PIP would’ve helped reduce financial strain and allowed access to other medications, supplements and alternative treatments recommended by medical professionals.
“I found the PIP journey quite stressful, and I think I would be reluctant to apply again,” she said.
Despite the rejection Chloe continues to live the best she can: “I push myself to complete daily tasks even when in severe pain or really struggling with symptoms. I don’t want to let this disease beat me. I know if I stop, I won’t be able to keep going.
“There is a lack of education on the severity of this disease, I really hope one day it will change so the next generation of women are more supported.”
The Department for Work and Pensions (DWP) saw an increase of 81% in new PIP claims for people with endometriosis between 2020 and 2023. It states, ‘PIP is awarded based on how conditions affect an individual’s mobility/daily living and the additional costs this incurs.’ Assessors are qualified health professionals and use all the information available to them at the time to make their decisions.
However, a striking concern amongst PIP claims is how similar situations receive different outcomes. Sasha, aged 32, is also diagnosed with stage 3 and experiences similar symptoms to Chloe; lower abdomen pain, painful periods, bloating and fatigue.
She has undergone three surgeries for the condition, which has led to other health problems such as adenomyosis and fibromyalgia. Sasha is currently unemployed due to the impact of endometriosis on her everyday life.
“I struggle due to the constant pain. I don’t know until I wake up if I’ll be able to even bend down to put a load of washing in the machine or not. I can also sometimes to struggle to walk up and down the stairs. I use crutches and I also have a wheelchair specifically measured from the OT for me when I am bad,” she explained.
Sasha was notified about PIP via universal credit support and puts her successful claim down to good timing: “I was informed that endometriosis was now a registered disability and that they were accepting a certain amount of applications for endometriosis. At that point, it had been registered for only a week. So, that’s how I think I got it. But I only received the lower rate for both daily living and mobility.”
At the time of the claim Sasha was employed.
When Sasha was diagnosed with fibromyalgia in 2022, she applied for her PIP to be increased but it was denied. She appealed with the help of Citizens Advice and was awarded full enhanced disability allowance for both mobility and daily living. The claim process took six months.
On being awarded the additional benefits, she said: “I was relieved that I was being understood and helped for my debilitating conditions.
“I go for massages twice a month, which help with most of my symptoms. I can have a mobility car, which helps me to be independent. I was also able to claim for a blue badge for closer parking when shopping. I’ve also been able to get a two-bedroom house through social housing to be able to have overnight care when required.”
For those suffering with endometriosis and needing additional support, Sasha advises to keep medical records and seek the help of Citizens Advice to successfully claim PIP.
Endometriosis affects 1 in 10 women and takes an average of eight years and 10 months to diagnose.
Claire Kelleher, head of support and Information at Endometriosis UK said: “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.
“Whilst we understand that a framework exists to assess all PIP applicants, we are disappointed to learn of the high rate of endometriosis-related PIP applications being rejected. Living with endometriosis and in chronic pain can have a devastating effect on both physical and mental health; impacting people’s careers, finances and much more so having the option to apply and be considered for PIP can be crucial to those with endometriosis.”
In 2023 Endometriosis UK shared information with the DWP to help assessors understand how endometriosis can affect those living with the disease. Meanwhile, NHS endometriosis specialist surgeon, Martin Hirsch says: “From the NHS perspective – our goals are to help address the symptoms people suffer with timely effective interventions. This aims to reduce the requirement for PIP.”
Endometriosis is a debilitating condition that can have a significant impact on people’s lives. A more comprehensive understanding of the condition and its affects, along with a fairer and more supportive assessment process, is essential to ensure women with endometriosis receive the financial support they deserve.
If you’re an endometriosis patient who has been denied PIP, the DWP advises ‘claimants who disagree with their initial decision can request a Mandatory Reconsideration. If a claimant remains dissatisfied following a Mandatory Reconsideration, they can make an appeal to an independent tribunal.’
