Doctors didn’t spot my condition for so long I was left permanently disabled
Wentworth, who describes himself as “gay and disabled”, has recently experienced a series of urological problems. He says doctors often attribute his symptoms primarily to cerebral palsy rather than trying to accurately diagnose problems.
“The thing is, disabled people know their bodies incredibly well,” she says.
“So I firmly believe that we should be trusted more than other people, because we’ve been living in these bodies and we’ve been acutely aware of them for so long. And the lack of trust is pretty palpable.”
Wentworth said he had complained to the local Patient Advice and Liaison Service (PALS) several times. It aims to solve any challenges or frustrations patients may face, but he says he’s had mixed results.
With the new version of The Secret Garden, Wentworth tries to inform young people about knowing when they are about to be gaslighted and how to defend themselves.
Healthwatch England describes itself as “your health and social care champion” and works with the NHS to improve poor patient experiences.
William Pett, the company’s interim policy director, says what Etchells and Wentworth experienced “unfortunately” can happen all too often and is “common for conditions such as ADHD and endometriosis.”
The organization hears most from young people, women and those who identify as LGBTQ, Pett said, noting that these people “are less likely than others to feel listened to by healthcare professionals.”
Healthwatch England has called for reform of the NHS complaints system so patients can receive quicker, more satisfactory responses to concerns they raise, while the NHS recently introduced Martha’s Law, which allows patients, their families or carers to request a rapid review if their condition is deteriorating.
A spokesperson for the Department of Health and Social Care said: “Our renewed Women’s Health Strategy recognizes medical gaslighting as a real barrier, especially for those living with conditions such as endometriosis, and our recently published Quality Strategy sets clear standards to ensure everyone, including people with disabilities, receives the high-quality, respectful care they deserve.
“Every patient deserves to be heard, believed and treated with dignity, which is why our 10-year Health Plan sets out how we are putting the patient voice at the heart of our NHS reforms.”
Although Etchells wished she had been listened to at her first GP visit when she was 13, she now feels “lucky” to be under a dedicated endometriosis team who listened to her.
When it comes to neuropathic pain in his legs due to ligament damage, he says he’s learned to pretend the pain doesn’t exist on days when he can’t take strong pain medication because of work.
Ironically, he says: “I medically gaslight myself to get through the day.”
