A rheumatology patient who was so ill after being wrongly prescribed powerful drugs that she drafted her will while in A&E has told of her devastation that group compensation payout plans have been dropped.
The woman – who did not want to be named – discovered that she was one of hundreds of Islanders to have been misdiagnosed by the rheumatology department following an external review last year.
She told the JEP that the unnecessary immuno-suppressing treatment she received destroyed her health, forced her to give up work, and left her so financially ruined that she had to sell her family home.
The patient has come forward to tell her story after a law firm representing around 200 of the nearly 500 affected patients have said many of those impacted are still to hear from Health and Care Jersey.
Sharing her very personal story under the guarantee of anonymity, the woman said: “I lost my hair. I had mouth ulcers. I was so sick.
“I was so ill that I actually wrote my will in the A&E department because I didn’t think I would ever come out.
“I felt so bad. I think the trauma of these things has been completely overlooked.”
She shared her harrowing experience just days after the government confirmed it was scrapping a proposed group compensation scheme for affected patients – despite a review by the Royal College of Physicians revealing that hundreds of Islanders had been misdiagnosed or given drugs they didn’t need.
The external reviewers described Jersey’s standard of rheumatology care as “well below what the review team would consider acceptable” for a contemporary service.
The woman explained that she was incorrectly diagnosed with rheumatoid arthritis, when in fact she had osteoarthritis.
Although both are forms of arthritis, they differ significantly in cause, progression, and treatment.
Crucially, rheumatoid arthritis is often treated with powerful immune-suppressing drugs that carry serious risks – including infections, liver or kidney damage, and blood disorders – but offer no benefit to patients with osteoarthritis, which is not an autoimmune condition.
The patient explained that her misdiagnosis meant that her osteoarthritis was “completely ignored for eight years”.
“Had I been treated for the correct thing in the beginning, I wouldn’t have it to the extent I do now,” she said.
She described how the consequences of that error impacted nearly every part of her life — from her mobility to her financial security.
“Being incorrectly diagnosed meant that I had to give up my full time job, which in turn, meant we had to sell our house because we couldn’t afford the mortgage on one salary,” she explained.
Last year, the Health Department stated it was “developing an approach to legal matters” and hoped to make settlement offers by the end of 2024 — either individually or through a general compensation scheme.
However, it was confirmed this week that plans for a group compensation scheme for rheumatology patients have been scrapped.
The woman said: “I can’t believe the government had let us down again.
“I’m still trying to find the words to express how upsetting that is to people that have gone through a trauma.”
She said the decision had reopened emotional wounds and left patients feeling abandoned.
“We had in the back of our minds that, after they’d admitted liability, we’d be compensated and then we can move on,” she said.
“But this almost feels like we’re going back to reliving all the awful things of when it first happened.”
The government has advised affected patients to seek independent legal advice if they wish to pursue claims — but the woman told the JEP that is “not an option” for her due to financial constraints.
“What are people like me supposed to do?” she asked.
“You can only pursue a claim through the Royal Court if you’re wealthy.
“I don’t have the money to take out a private claim against the Health Department that could cost hundreds-of-thousands of pounds.
“Is it just tough luck?”
She added: “Half of the people affected [by the rheumatology scandal] are, sadly, no longer with us, and the other half of the people can’t afford to do anything.”
While she acknowledged that compensation would not undo the harm caused, she said it could have had a real and practical impact on her daily life.
“Yes, it’s only money – but it’s money that would help,” she said.
“With compensation, I could have a stair lift, I could afford a wheelchair.
“I could have got various things that I need, but now it looks like that’s not available to us.”
