The NHS must move quickly to update information for patients after the renaming of polycystic ovary syndrome (PCOS) as polyendocrine metabolic syndrome (PMOS), a grassroots charity has said.

Last week, the condition – which is thought to affect about one in eight women – was given a new name after a 14-year effort that brought together medical experts, charities and women with lived experience of the disorder.

However, the NHS website contains no mention of the new name or any change to the information provided about the condition.

Neelam Heera-Shergill, CEO and founder of the charity Cysters, urged action.

“As an organisation rooted in reproductive and health justice, we welcome conversations around language that better reflect the realities and experiences of those living with PMOS/PCOS. But any name change must go beyond symbolism,” she said.

“Communities deserve clear, accessible and timely information so people are not left confused, excluded or struggling to access support and diagnosis. We hope to see the NHS move quickly to update information and public-facing resources in a way that is inclusive, culturally competent and centred on the needs of the communities most impacted.

“For many people, especially those from marginalised backgrounds who already face barriers within healthcare, clarity and visibility can make a real difference in accessing the rightful care and support they need.”

However, as Caroline Andrews, a trustee of the charity Verity, noted, the announcement of the new name was accompanied by a plan for a three-year transition period.

Andrews added the NHS is going through many changes, with a new health secretary recently announced after the resignation of Wes Streeting. In addition, 2026 has seen the launch of the renewed Women’s Health Strategy for England, while the UK National Institute for Health and Care Excellence (Nice) is expected to publish the first-ever standalone guidelines for PMOS/PCOS later this year.

“We fully appreciate that they [the NHS] need transition time just like we do, just like many other organisations do,” said Andrews. “And we’d much rather the NHS do this carefully and thoughtfully, considering this in placement with all the lines of care, such as the fact the Nice guidelines are coming through, and how this is fitting with the delivery of care.”

Prof Channa Jayasena, an expert in reproductive endocrinology at Imperial College London, welcomed the name change.

“I think it’s a tremendous initiative, and I think it’s a great step forward in trying to help women and clinicians understand the full breadth of the seriousness [of the] condition,” he said.

But he added the shift has only just occurred, with professional societies all over the world meeting to inform their members about the change.

“There’s a long history of many conditions sometimes still being called outdated things by clinicians because it takes a while for the workforce to be updated and upskilled. And I can guarantee you, not all doctors know about this at the moment, and therefore not all patients will,” he said.

“So I think it’s a great move in the right direction, which shows where we should be going. But professional societies which have webpages, obviously patient support groups, and the NHS will, I fully expect, over the next year or two, be updating all their websites.”

However, Dr Sophie Williams of the University of Derby and an expert on PCOS/PMOS and mental health said the three-year transition for the name change could cause confusion.

“When you go on the NHS website and it’s still [saying] polycystic ovaries, PCOS… as a member of the public, that might make you question the legitimacy of the information you’re getting,” she said.

“[The NHS website] is one of the first places any person might think to go to for health care advice that is rigorous, that is reliable. So from my perspective, I do think that the sooner the better,” she added.

Williams said one option would be to run two shadow webpages that link together, one for PCOS and one for PMOS, or to include text on the current page referring to the name change and noting that information is being reviewed.

“The sooner all of those reliable sources of information can align, the clearer the messaging will be for somebody in the public who might not know where to go to get correct information,” she said.

An NHS spokesperson said: “We routinely review and update content on the NHS website to ensure it reflects the latest clinical advice and will carefully consider these recommendations.

“The NHS will also continue our work to improve women’s healthcare, including for this important group, which involves giving women more choice over their care, bringing down waiting times, and delivering more care in communities.”