I claim PIP for crippling endometriosis. Reforms to the system scare me

A woman who lives in constant pain said she’s scared by plans to reform personal independent payments (PIP) could leave her unable to afford many of the adjustments that help her to work and manage multiple chronic illnesses. The Government is considering making wholesale changes to the in-work benefit after an interim report from the Timms Review found PIP is no longer fit for purpose. Raphaella Stewart, 28, a customer service worker and content creator, has endometriosis , adenomyosis and chronic fatigue syndrome/myalgic encephalomyelitis.

Ms Stewart receives the standard weekly rate of PIP for daily living, £70.70, and mobility, £30.30, which she describes as a “lifeline”. “I am in a constant state of pain and fatigue, which at a baseline is very hard to live with but on worse days it’s debilitating,” she told The i Paper . “It allows me to afford some adjustments to make my life more manageable, for example transport to appointments, delivery of groceries, medications and supplements to help manage my condition,” she said.

Endometriosis is a condition where cells similar to those in the lining of the womb grow in other parts of the body and can cause severe pain and heavy periods; adenomyosis is when the lining of the womb grows in the muscle in the wall of the womb, causing similar symptoms. Like many disabled people, Ms Stewart is concerned about Government plans to drastically reduce the number of people receiving the disability benefit. “It scares me.

PIP is a lifeline for so many people , including myself. Without it, I wouldn’t be able to afford a lot of things that help me manage living with multiple chronic illnesses. Having disabilities is expensive, and PIP is supposed to help ease the burden of that cost, though not entirely,” she said. Earlier this month, a report by the Resolution Foundation concluded that around one in six working-age people receiving disability benefit do not face extra costs due to their conditions .

The think-tank estimated £4.4bn could be saved if payments were stopped or lowered depending on the level of limitations reported by those who said they faced no extra costs. Learning disability charity Mencap said the Resolution Foundation’s findings were “inconsistent with our own research and understanding around the importance of PIP and what people with a learning disability and their families spend it on”. Ms Stewart does not believe taking PIP, which is non-means-tested, away from people who currently receive it is going to “solve anything”.

Ms Stewart is also terrified that possible reforms could reduce her PIP She added: “And ‘refining who receives PIP’ usually means shortening the list of who the Government deems sick enough to help, and will allow everyone cut from that list to suffer.” Charities have also issued warnings about the proposed cuts and “degrading” assessments claimants have to undergo. “It’s not an easy application, it’s long and involves sharing private and sometimes embarrassing symptoms with a stranger just to be told you don’t qualify,” Ms Stewart said.

“I wasn’t awarded PIP the first time I applied, and I found the process so draining physically and mentally, it took me another year to apply again.” Ms Stewart tries to reduce her spending by using platforms such as Purpl, which offers discounts to disabled people. But believes the Government should be doing more to help. “I don’t believe that anyone who receives PIP shouldn’t get it, as I said before, so many people who really do need it do not receive it,” she said.

“I don’t believe this is due to others being awarded it; I believe it’s due to a lack of funds being assigned to disabled people.” Spending on PIP stood at £16.3bn in 2019-20, when adjusted for inflation to today’s prices, and had increased to £27.3bn by 2024-25, Department for Work and Pensions (DWP) figures published in September show. The amount the Government spends on PIP is currently forecast to rise to £41.5bn by 2030-31. A separate report on youth unemployment by Alan Milburn found that the number of young people (16 to 24-year-olds) claiming PIP is expected to quadruple in just over 25 years from 2012 to 2037 and is not specifically tailored to meet their needs.

A spokesperson for the Department for Work and Pensions said it will always ensure there is a safety net for the most vulnerable, and that the Timms Review’s final report will “lay the foundation for sustainable reform”.