What you told NICE about the draft PMOS guideline

Our community's response to the NICE consultation
When NICE published its draft guideline for polyendocrine metabolic ovarian syndrome (PMOS), formerly polycystic ovary syndrome (PCOS), we did not write a response from the boardroom. We asked you to read the draft and tell us what to say.
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315 of you did. Thank you!  Some wrote a sentence. Some wrote several hundred words about things they had never told anyone. All of it was read, the data was analysed and Verity submitted fourteen points of feedback to NICE on 11 August 2026 built on that evidence.  Your evidence.

This page summarises what you told us. The full report is available to download opposite.

​The headline finding
You were not dismissive of the guideline. 78% said it improves on the care you receive now. But you were clear-eyed about it, and the same pattern came back again and again: this is the right direction, and nothing in it reaches us unless somebody funds it, resources it and holds someone accountable for delivering it.

Nowhere was that clearer than on the new annual review. 97% called it a major step forward. 94% doubted it would actually happen.

​That gap between approval and expectation is the central finding of the survey, and the first thing we put to NICE.

​What you told us
In Verity's 2026 NICE consultation survey of 315 people with PMOS in the UK:

On skin and hair
97% said excess hair, hair loss and acne caused by PMOS are medical symptoms, not cosmetic issues — the highest level of agreement recorded anywhere in the survey. 92% said hair-removal treatment should be funded as a medical treatment. 79% avoid leaving the house without first removing hair or covering up.

On prevention and access
Of 210 respondents who wanted a GLP-1 medicine for their PMOS, 4 obtained one through NHS criteria — around 2%. Of everyone who obtained one, 95% paid for it themselves. 96% said PMOS should itself be a route to preventative treatment, rather than requiring type 2 diabetes or heart disease to develop first.

On cost
65% had paid privately for PMOS care the NHS would not fund, at a median lifetime cost of around £2,000 and up to £40,000. 97% said not funding preventative treatment now will cost the NHS more later.

On joined-up care
Only 12% said their care is coordinated well between the services they need. Two-thirds said the draft gives insufficient attention to mental health.

On being asked
Just 7 of 315 respondents had ever been asked by a clinician whether their cultural, religious or personal beliefs might affect their treatment preferences. 71 had declined hormonal contraception on exactly those grounds.

​On BMI and ethnicity
84% said the BMI cut-off of 40 for ovulation induction remains a barrier. 64% supported adjusting BMI thresholds for different ethnic groups, rising to 29 of the 32 respondents from Black, Asian, mixed and other global-majority backgrounds.

What we asked NICE to do
Our report sets out fourteen changes we would like to see in the Guidelines, which includes:
  • a defined minimum content for the annual review, and the resourcing to deliver it
  • PMOS recognised as a basis for preventative metabolic treatment
  • treatment for excess hair, hair loss and acne recognised as clinical need rather than cosmetic
  • PMOS-specific guidance on acne
  • BMI thresholds reconsidered, including adjustment for ethnicity
  • mental health assessment and support made routine and resourced
  • clinicians prompted to explore beliefs, preferences and alternatives
  • national backing for established off-label treatments such as metformin
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The report also maps our asks against the ten recommendations of the 2025 All-Party Parliamentary Group (APPG) report on PCOS. Eight of them are directly supported by this survey evidence.

​About the survey
The survey ran online during the NICE consultation period and was open to people with PMOS, people who believe they may have it, and their families and carers, resident in the UK and aged 18 or over.

319 people responded. Four answering solely in a professional capacity were excluded, giving a base of 315. Percentages are calculated on those answering each question, and bases are stated in the report wherever they differ.

This is a self-selecting sample drawn from an engaged patient community. It is strong evidence of consensus, salience and lived experience among people sufficiently engaged to appraise a draft clinical guideline. It is not a statistically representative sample of everyone with PMOS, and should not be read as one.
Verity is a registered stakeholder in this NICE guideline, and a Verity trustee sits on the guideline committee. This report draws solely on our community survey and our own consultation response. It does not draw on the committee's proceedings, and nothing in it represents NICE or its committee.

​Thank you
315 people gave us an hour of their lives, on a deadline, in their own time, for a document most people will never read. Some told us things they had never told a doctor. Every number and every quote in Verity's submission to NICE came from them.

​What happens next
​NICE is expected to publish the final guideline in December 2026. When it lands, we will publish a follow-up comparing what our community asked for with what the guideline delivers.

Publication is the starting point, not the finish. What needs to follow is funding, commissioning, training and implementation — and none of that is delivered by the guideline itself.

More about the NICE guideline for PMOS