Doctors did not know my health for a long time and I was permanently disabled

Wentworth, who describes himself as “queer and disabled,” has recently experienced a series of urinary problems. Doctors often attribute the symptoms to cerebral palsy in the first place rather than trying to properly diagnose the issues.

“The thing is, people with disabilities are incredibly aware of their bodies,” he says.

“So we, I strongly believe, should be trusted more than some people, because we’ve lived in these bodies and we’ve known them for a long time. And the lack of trust is palpable.”

Wentworth said he had complained to the local Patient Advice and Liaison Service (PALS) on several occasions. It aims to address problems or frustrations patients may have, but has had mixed results, he said.

In his new edition of The Secret Garden, Wentworth is trying to let young people know when to burn out and how to advocate for themselves.

Healthwatch England describes itself as “your champion for health and social care”, and works with the NHS to improve poor patient experiences.

William Pett, the policy’s interim director, said what happened to Etchells and Wentworth was “unfortunately” common and “common in conditions like ADHD and endometriosis”.

Pett said the organization often hears from youth, women and LGBTQ people who say they are “less likely to be heard by health care professionals than others.”

Healthwatch England has called for reforms to the NHS complaints system to ensure that patients receive prompt and satisfactory responses to any concerns they raise, and the NHS recently introduced Martha’s Law, which will allow patients and their families or carers to be quickly assessed 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, particularly for those with conditions such as endometriosis, and the recently published Quality Strategy sets out clear standards to ensure that everyone – including disabled people – can access the high-quality, respectful care they deserve.

“Every patient deserves to be heard, trusted and treated with dignity, which is why our 10-year health plan sets out how we will put the patient voice into our NHS reforms.”

While Etchells wished she’d been listened to at her first GP visit aged 13, she now feels “lucky” to be under an endometriosis team that listens.

When it comes to nerve pain in her legs due to tendon damage, she says she has learned to pretend the pain isn’t there on days when she can’t take strong painkillers due to work commitments.

Ironically, she admits, “I would medically gas myself up to get through the day.”