Mumsnet's response to the NICE draft guidance “Menopause: Diagnosis and Management.”
Read our response to the NICE draft guidance on “Menopause: Diagnosis and Management.”
By Mumsnet HQ | Last updated Dec 11, 2023
Mumsnet is the UK’s largest community of parents, with around 8m monthly users clocking up around 100m page views. The overwhelming majority of our users are women, and they come to Mumsnet to seek support and advice on every aspect of life. We have a dedicated Menopause forum, as well as forums for Women’s Health and General Health.
Gransnet is a community of over-50s (again, predominantly female) with half a million users. We have a dedicated Menopause forum as well as a Health forum.
Users come to Mumsnet and Gransnet to seek advice and support, and to share their own experiences of perimenopause and menopause. Our response to this guidance is based on what our users have said onsite and through a number of different surveys.
Priorities
We believe that the priorities suggested in this guidance will be detrimental to the health of women, and that the medical advice fails to give doctors (and women) clear information on the safest forms of Hormone Replacement Therapy. The first line of advice 1.2.3. (page 7) prioritises “non-hormonal” treatment, and appears to put that and Cognitive Behavioural Therapy on a par with HRT as a possible treatment.
In the section “How the recommendations might affect practice”, it says that the increased use of CBT: “would benefit the NHS because people may not need other treatments which would require regular reviews and ongoing prescriptions, such as hormone replacement therapy (HRT).” (p49, line 11)
We have heard from thousands of Mumsnet and Gransnet users over the years who already struggle to access HRT, despite experiencing menopause and perimenopause symptoms which have a significant effect on their everyday life. In a 2021 survey, nearly four in ten women seeking treatment for perimenopause symptoms say their GP told them they’d just have to learn to live with it, while 26% of those who sought help for menopause symptoms say they visited their GP three times or more before being prescribed appropriate medication.
We know that many of our users already have to fight to get access to the HRT they are entitled to, and we think this guidance will make it even harder for women to access it. We worry that women will be turned away from HRT as a first-line treatment for menopause symptoms, when it also lowers risk of many long-term conditions like osteoporosis. We also know from our users that the NHS waiting lists for CBT are up to a year in some areas, and that a few sessions of CBT would be much more expensive than the £120 a year cost to the NHS of the safest HRT (micronized progesterone and transdermal oestrogen).
Language
The language used in the guidance is patronising. The use of the term “troublesome symptoms” fails to reflect the life-changing difficulties experienced by women who have left jobs, unable to cope, or suffered severe physical and mental health problems until they were offered HRT. In a survey in 2022, 28% of those women who told us they were considering leaving work said they were enjoying work less because of the menopause, and 11% of those who had left said it was because of the menopause. Describing the symptoms that prompt these life changes as ‘troublesome’ is deeply offensive and suggests a failure to grasp the scale of the effect they can have on women
GSM advice
We note there is a useful section (p15) on the Genitourinary Symptoms of Menopause, which many Mumsnet users tell us they experience, and it recommends vaginal oestrogen as a first-line treatment. Why, then, at the start of the guidance (1.2.3. page 7), is the very first suggestion for everyone: “non-hormonal, for example, non-hormonal vaginal lubricants and moisturisers”? This is extremely confusing for women and medical professionals. We have also seen the latest good news on the safe use of vaginal oestrogen in breast cancer patients, which is not mentioned in the guidance. (https://jamanetwork.com/journals/jamaoncology/article-abstract/2811413)
Black cohosh?
While we very much support lifestyle changes and access to additional therapies for women, we were puzzled that diet and regular exercise were not top line recommendations. Instead, there is this (p14 1.4.18): “Explain to people with menopause symptoms that there is some evidence that isoflavones or black cohosh may relieve vasomotor symptoms associated with the menopause.” Black cohosh has a known potential risk of liver damage – and women would have to pay for it privately. This is from a Gov.UK report: “Worldwide, the liver reactions reported vary from abnormal liver-function tests and jaundice to liver failure. Just over half of the reactions reported resulted in admission to hospital. The limited evidence available suggests that the reactions occurred within three months of starting black cohosh.”
Fearmongering and lack of clarity about the different forms of HRT
We are worried that this guidance emphasises risk (239 mentions) over benefits (39 mentions) and may do women a disservice by fear mongering. It mentions breast cancer 150 times, and osteoporosis - which HRT can help prevent - only five times.
On page 23 it says: “Combined HRT increases the risk of breast cancer compared with not taking HRT”. For women reading the document, it is not clear what this means. Does combined mean the old oral HRT with synthetic progestins and equine oestrogens (derived from pregnant horses’ urine) which caused all the headlines of increased breast cancer risk over 20 years ago, or could combined mean the combination of progesterone and estradiol in Bijuve, or a transdermal patch or gel plus Utrogestan progesterone, which have never been shown to have an increased risk of breast cancer? We know that the flawed study in 2002 is still having an impact on women. In a 2019 survey 40% of Mumsnet users told us that press stories about HRT risks make them anxious and less likely to consider taking HRT. We are astonished that the guidance is not updated with the latest knowledge, and doesn’t clearly direct women to the safest forms of HRT. This is a missed opportunity for clarity that may limit the choices of thousands of women.
Later, the NICE document does say (p62): “All types of progestogen were associated with an increased risk of breast cancer, although there was limited evidence assessing the risk of breast cancer with micronised progesterone. Overall, there was insufficient evidence to say whether one type (for example micronised progesterone) may be safer than others and therefore the committee made a research recommendation to address this.”
We were puzzled by this statement, since it conflicts with best practice at major NHS and private menopause clinics which recommend transdermal oestrogen and micronised progesterone first line, as does the British Menopause Society, quoted here: “Evidence from large observational studies and case-controlled studies suggests that micronised progesterone and dydrogesterone are unlikely to increase the risk of venous thrombosis and are associated with a lower risk of breast cancer compared to that noted with oral progestogens[progestins].”
Perimenopause definition
On p8 1.3.1. perimenopause is defined as “if they have new onset vasomotor symptoms and any changes in their menstrual cycle”. We are very aware from Mumsnet users that this is not everyone’s experience of perimenopause, and indeed mood swings, heart palpitations and even vaginal dryness are extremely common symptoms – even in women who do not yet have hot flushes. This definition seems unnecessarily narrow, and may result in women in need of medical help being turned away.
Effects of HRT on health outcomes
We were worried by the tone and choice of negative evidence around HRT lowering risk of cardiovascular disease, Type 2 diabetes, colon cancer etc. We would urge NICE to take a look at this document from The Menopause Charity’s clinical advisory panel, “Transforming Women’s Long-term Health” which is extensively footnoted.
https://www.themenopausecharity.org/2023/10/18/transforming-womens-long-term-health/
Conclusion
There is a large body of evidence that a toxic combination of entrenched misogyny, misinformation and lack of knowledge already makes it difficult for women in perimenopause and menopause to access the HRT medication that they are entitled to. We believe that these draft guidelines will exacerbate this problem. The guidelines emphasise the negative over the positive effects. They will make doctors even more reluctant to prescribe HRT, and they will make women more fearful of asking for and/or accepting it. We are also deeply worried by the suggestion of offering (largely unavailable) CBT and unproven alternative therapies to women who are suffering with the debilitating effects of low hormones.
Lack of research and information around health issues that specifically affect women is an important factor in the often poor treatment that they experience. We think it's imperative that women are properly informed of their treatment options for symptoms of perimenopause and menopause, and this should include explicit information about the safest forms of HRT - something this document does not do. Our medical advisors believe that only limited evidence has been taken into account on this and the long-term health benefits of the safer forms of HRT. We urge NICE to reconsider its recommendations, and take time to bring more menopause experts, endocrinologists and neuroscientists on board to give women the up-to-date and comprehensive advice and information that they deserve.