When Prajakta Jyoti was 16, she began getting severe abdominal pains which progressively got worse and culminated in her mother spending thousands of pounds abroad to get a diagnosis.
“I had bad periods, but at first I wasn’t too concerned,” said Prajakta, now 20, who lives in Milton Keynes. “But then in the middle of my GCSE year, I had this really horrible pain which wouldn’t leave and kept getting worse.
“We went to A&E a few times and eventually, they thought it was my appendix so did an appendectomy to take it out. But it turned out to be a cyst which had burst.”
From that point, Prajakta’s pain worsened and she had an MRI scan which she said indicated endometriosis, a condition where tissue similar to the lining of the womb grows outside the uterus, causing pelvic pain.
“Eventually, I went to India to get a diagnosis because it was taking far too long in the UK and I was in so much pain. Within 12 hours of being in India, they diagnosed me with endometriosis, so it was a very different experience.
“When we came back to the UK, we gave the NHS the evidence and they did another MRI scan and said ‘yes, there’s endometriosis everywhere.’ But to have surgery to remove it meant a wait of two years.”
Prajakta’s mum used her savings to pay for her daughter to have the surgery privately in Oxford. Prajakta is now managing several chronic conditions, including endometriosis, adenomyosis, where the inner lining of the uterus grows into its outer muscular wall and Crohn’s disease, a long-term condition which causes swelling, irritation and deep sores in the digestive system.
“The Crohn’s was only diagnosed by fluke when they were looking into why I had the pain. I have mild Crohn’s as it was found early and I had steroids and immunosuppressants for that, and luckily, it doesn’t affect me too much. It is the endometriosis which is more concerning and affects me badly.”
Prajakta’s pain escalated during her GCSE year and she was unable to return to school after her surgery, but she managed to study at home and do her GCSEs. She then tried to do her A-Levels from home, but was on strong painkillers so struggled to concentrate.
For the last four years, Prajakta has been at home and told The i Paper she has been virtually housebound. She applied for personal independence payment (PIP) – a benefit for those who have extra daily living or mobility needs – twice, but despite outlining her struggles and how she is affected, she has been rejected twice.
“Applying for PIP is such a draining process and I have been rejected twice and really don’t want to go through it again,” she said.
Prajakta’s mum paid to go to India for a diagnosis for her daughter, as well as surgery privately in the UK“I explained everything in detail, told them I was basically bedbound and gave a folder of medical evidence.
“They listened to everything I said and the assessors talked to me for two to three hours. But then I’d get the letter back saying you don’t get any points and are rejected for PIP.
“It just feels like they are saying I was faking it and making me out to be a liar. At that point, I was pretty much bedridden with my condition, so it didn’t make any sense.”
Prajakta says financially, it is a struggle for her and PIP would make a big difference to her life and in managing her pain. “My mum is a single parent and I am completely dependent on her,” she explained.
“I am in pain 24/7 and am on painkillers. I had to have more surgery two years ago where they removed and excised as much endometriosis as they could find. But within three months, the pain just came back.
“Over the last four years, my mum has had to work around me and take me to constant hospital appointments. She is a financial consultant and has her own company so has been able to do that, but it has affected her income and her ability to work as much as she could.
“My mum used around £6,000 of her savings to take me to India twice for diagnosis, tests and treatment and then around £12,000 to £14,000 to pay for my endometriosis surgery privately in the UK and now her savings have gone.”
Prajakta began using art related to chronic illness as an outlet for her pain to distract herself and was able to do this from her bed while on painkillers. She posted her work on Instagram and used her portfolio to apply for university and has got a place at Kingston University to study fine art from September.
“I am really hoping I will be able to manage at university with painkillers. Having PIP would help me with managing the pain and travel and certain medications and treatments.
“But it feels like because some days, I am able to dress myself and I can stand for five minutes in the shower, I am rejected for PIP. This is despite the fact that some days, I am in so much pain, I literally cannot get out of bed.”
Georgina Colman, disability expert and founder of Purpl, a money-saving platform for those living with disability or long-term health conditions, said: “It is encouraging to hear recognition from the Government that the current PIP system isn’t functioning as it should.
“But this is something disabled people have been saying for years. Too many people still go through assessments that are exhausting, dehumanising and something they dread having to go through, particularly when they have lifelong conditions that aren’t going to improve.
Prajakta is going to university in September to study fine art“PIP isn’t about giving people an advantage; it’s about helping to cover the additional costs that come with living with a disability. Those costs are already significant, with disabled households facing an average of over £13,000 a year in extra expenses, from higher energy bills and specialist equipment to accessible transport and everyday essentials.
When the system makes it harder to access that support, it has a real impact on people’s independence, financial security and quality of life.
“Reforming PIP is incredibly important so long as it remains that disabled people continue to face significantly higher living costs than non-disabled households. Any future reforms must ensure people can access the support they need to live independently and participate fully in society.”
A Department for Work and Pensions spokesperson said: “We’re sorry to hear about Prajakta’s situation. PIP is awarded based on how a condition impacts a person’s day-to-day needs, as opposed to the condition itself. “
“Customers who disagree with a decision can request a Mandatory Reconsideration or an appeal.”
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