Verity - PMOS UK
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Yesterday Verity joined the APPG on PMOS (PCOS) for its latest roundtable, focused on one thing: implementation of the name.
Because changing the name was never the end point, it is the unlock for what comes next — better data and coding to drive research, fairer access to treatment funding and care pathways, more research and updated curriculums so the next generation of clinicians understands this condition properly.
We heard updates from the Department of Health and Social Care, NHS England, NICE, the General Medical Council and the Royal College of Nursing on what each is doing on PMOS. And Verity was there to do what we do — bring the lived experience into the room. Our message was simple: do more, do it faster. We have decades of ground to make up.
We also reminded the room of the inequalities in care people with PMOS face, and of the Women’s Health Strategy’s commitment to preventative care — a commitment that is still falling far short for PMOS.
It was a genuinely productive discussion, and we stand ready to work with each of these agencies, one by one and together, to make real inroads in PMOS care in the UK.
Our thanks to Michelle Welsh MP and the whole APPG team for creating the space for these necessary — and long overdue — conversations.
01/07/2026
📣 Another landmark moment for the PMOS community — and one we've spent over a decade fighting for!
The draft NICE guideline for PMOS (polyendocrine metabolic ovarian syndrome, previously PCOS) is now open for consultation. NICE — the National Institute for Health and Care Excellence, the body that sets clinical standards for the NHS — has set out how PMOS should be diagnosed and managed in the UK — for a condition that affects around 1 in 8 women and girls (that's over 3.1 million!) and has been under-diagnosed and inconsistently managed for far too long.
Swipe through to read some of the highlights.
One really important thing to remember: this is a DRAFT. Nothing is set in stone. The recommendations can still change in response to the feedback NICE receives during this consultation — which is exactly why your voice matters right now. It's open until 11 August, with the final guideline due December 2026.
Whilst the Guideline is for the UK, it will be for each devolved nation and its individual health boards to adopt in practice. So even once it's published, we'll keep pushing for its implementation — consistently, right across the UK.
Verity has campaigned for a NICE guideline for over 15 years. As a registered stakeholder, we made sure the patient voice was heard when the Guideline's scope was set; one of our Trustees sits on the Guideline Committee; and during this consultation, we'll be collating your feedback to put directly to NICE.
It's part of the bigger change we've been driving together:
- From shaping the national research agenda with the James Lind Alliance
- To influencing policy in Parliament through the APPG
- To helping bring about the renaming of the condition itself
We'll be sharing how you can add your voice to our response very soon. In the meantime, head to the link below to have a read through.
https://www.nice.org.uk/guidance/indevelopment/gid-ng10436/consultation/html-content-9
The Verity team 💜
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