Wentworth, who describes himself as “queer and disabled”, has recently had a series of urological problems. He says doctors often attribute his symptoms to his cerebral palsy first, rather than attempting to properly diagnose issues.
“The thing is, disabled people know their bodies incredibly well,” he says.
“So we should, I firmly believe, be trusted more than some other people, because we’ve been living in these bodies and we’ve been hyper-aware of them for so long. And the lack of trust is quite palpable.”
Wentworth says he has complained to his local Patient Advice and Liaison Service (PALS) on several occasions. It aims to resolve difficulties or frustrations patients might face, but he says he has had mixed results.
With his new version of The Secret Garden, Wentworth is trying to inform young people about recognising when they might be being gaslit and how to advocate for themselves.
Healthwatch England describes itself as “your health and social care champion”, and works with the NHS to improve upon bad patient experiences.
William Pett, its interim director of policy, says what Etchells and Wentworth experienced can “unfortunately” happen all too often and it’s “common for conditions such as ADHD and endometriosis”.
Pett says the organisation hears most often from young people, women and those identifying as LGBTQ, who report being “less likely to feel listened to by healthcare professionals than others”.
Healthwatch England has called for reforms to the NHS complaints system so that patients can get quicker, more satisfactory responses with any concerns they raise, while the NHS has recently rolled out Martha’s Law, which allows patients and their families or carers to request a rapid review if their condition is deteriorating.
A Department of Health and Social Care spokesperson said: “Our renewed Women’s Health Strategy recognises medical gaslighting as a real barrier, particularly for those living with conditions like endometriosis, and our recently published Quality Strategy sets clear standards to ensure everyone – including disabled people – 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 patient voice at the heart of our NHS reforms.”
While Etchells wishes she was listened to on that first GP visit aged 13, she now feels “lucky” to be under a dedicated endometriosis team who do listen.
When it comes to the neuropathic pain in her legs, a result of the ligament damage, she says that on days where she can’t take strong pain medication due to work commitments, she has learned to pretend the pain is not there.
Ironically, she says: “I medically gaslight myself to get through the day.”
