Menopause Inclusion Collective – APPG Menopause – Written Evidence
28 August 2021
Written Communication - APPG Menopause - Impact of Menopause
We welcome this opportunity to submit a written communication to the All Party Parliamentary Group
on Menopause (APPG-M), and we thank those involved, in advance, for their time and consideration
in reviewing information contained within our submission.
We understand that material submitted to APPG-M will be considered in the context of “producing a
report setting out policy recommendations” and that “the APPG’s final recommendations for policy
change around Menopause will be presented to the Government”.
The Menopause Inclusion Collective(1) (MIC) brings together advocates, allies, activists, researchers,
and academics. We are a progressive, transparent crucible, and aim to contribute to advancing gender
equality, working through an anti-racist and intersectional feminist lens, offering guidance to people
and organisations wanting to embrace inclusion in menopause to create lasting change.
Our written evidence focuses predominately on 3 area’s identified in the terms of reference, namely:
* Detail on personal experiences of menopause, the impact this may have had on daily activity
and wider family impacts
* Information on current products that are available for women going through menopause
and information on this market
* Any further detail or suggested policy recommendations that the APPG should consider
around menopause.
By the year 2025, it is estimated that one billion of us will be going through the menopause(2). And yet,
until recently, it was a topic hardly ever spoken about publicly. 2021 has indeed seen the pendulum
swing the other way, with a virtually continuous stream of menopause-related content across all types
of media, from peer-reviewed journals, reputable newspapers, TV documentaries, webinars, podcasts,
to glossy magazines. The previous paucity of debate/content may give the impression that people
have, up until very recently, simply not encountered difficulties during the menopausal transition.
However, it is worth remembering that absence of evidence is not evidence of absence. The issues
making the headlines now have, we suggest, largely been hidden in plain sight for generations.
“Menopause is one of the most toxic combinations of taboos that exists, because its sexism and
ageism all rolled into one”(3)
Whilst we knew to expect the vasomotor symptoms invariably inherent to peri/menopause, we were
totally unprepared for the significant negative impact on our emotional and mental wellbeing. It has
been established that the so-called ‘perimenopause years’ can be a particularly vulnerable time of life
for many(4). Anxiety, paranoia, mood swings, heavy and/or erratic periods, migraines, depression,
insomnia, nausea, to name but a few issues, halted us in our tracks and reduced our quality of life
significantly. Furthermore, we believe:
“..these are not insubstantial barriers to growth and development, good health and basic wellness”(5)
Both emotional and physical issues were compounded by familial, work-based and societal
expectations and obligations. Is it any wonder the highest rate of suicides amongst women in England
& Wales falls within the 50-54 age-bracket?(6). Likewise, the high rates of divorce, and/or premature
(and often abrupt) curtailment of employment and flourishing careers(7).
Our specific concerns:
HRT supplies. Despite assurances to the contrary, it continues to be increasingly difficult to
consistently source the same product (for example Estraderm MX and Elleste Solo* patches). We have
already undertaken lengthy (i.e., years) ‘trial and error’ approaches to finding which preparation in
terms of dose and method of delivery works for us. We are exquisitely sensitive to even the slightest
of changes in our hormone levels, and quite understandably, when we find a solution that works, the
preference is to stick with that effective regime. Not being able to reliably source HRT merely adds to
our background levels of anxiety.
We believe testosterone should be widely available through the NHS and prescribed where
appropriate - without the need for a referral to a specialist NHS menopause clinic. Too many of us,
particularly those with an early menopause or premature ovarian insufficiency, end up resorting to
accessing testosterone via a consultation with a practitioner based in the private sector. It’s hard to
imagine that being necessary for medication to manage COPD or diabetes.
Surgical menopause. From our experiences, there is evidence of inadequate provision of support with
regards to the aftercare of those undergoing surgery that will result in immediate menopause. We left
hospital without any follow-up whatsoever, other than instructions to arrange a visit to our GP
surgeries for stitch/clip removal. How is it we can leave hospital, after major surgery, with only 2 pieces
of advice: refrain from sex for 6 weeks, and lift nothing heavier than a kettle of water, for the same
duration?
We also have to ask, why have guidelines in place if they are largely ignored?
“women who are likely to go through menopause because of medial or surgical treatment are given
information about menopause and fertility before they have their treatment”
[Menopause Quality Standard QS143](9)
“I lost 5 years of my life to unnecessarily prolonged and protracted issues primarily as a result of a
failure to provide HRT following a surgical menopause aged 41. I was actively suicidal on many
occasions and walked away from my career of 20 years. I couldn’t have cared less about myself. My
life became about getting through each day so I could just go to sleep. And yes, I frequently hoped I
would not wake up”(8).
For those whose surgery involved the removal of the cervix, a post-operative internal examination to
check the healing and thus integrity of the vaginal cuff at 6 weeks should be considered standard
practice. Equally, a revision of the pre-operative patient information leaflets provided to those
undergoing a bilateral salpingo-oophorectomy, would be greatly welcomed.
v
Diversity & Inclusion. There is a worrying trend, in that the current discourse around menopause is
becoming increasingly polarised. We recognise that BAME people, LGBTQIA+ people, care
experienced, sex-workers, migrants, refugee & asylum seekers, prisoners & ex-offenders, those living
with HIV, the homeless, neurodiverse people, as well as those with other developmental impairments
and learning difficulties, are rarely included in conversations on matters that will, by definition, impact
their lives, directly or indirectly.
“Nothing about us, without us”(10)
Trauma-informed healthcare. It is an unfortunate fact that we entered the healthcare system with
significant trauma histories. It was not, and to a lesser extent, still is not unusual for us to be
retraumatised by subsequent medical interventions, be they routine vaginal vault examinations,
gynaecological surgery, or by having our experiences invalidated by medical professionals during
consultations. The term ‘gaslighting’ springs to mind. We’re fully cognisant of the fact that there is no
one golden solution to this issue. It’s complex. However, the application of trauma-informed (TI)
practices can help. Embedding TI architecture within the healthcare system is not overly onerous.
Much can be achieved by ensuring key interventions embrace the 5 key TI tenets of: choice,
collaboration, trust, safety, and empowerment(11-14). Afterall, healthcare should be healing, not
harmful.
Regulation of menopause experts. Whilst we acknowledge lived experience has an important role to
play in informal peer-to-peer support, as well as feeding valuable input into the development of
training programmes, we are concerned at the seemingly exponential increase in what appears to be
broadly best described as “menopause coaches”. We wish to use this call for evidence to express our
concerns over what we perceive as the risks associated with menopause becoming the new ‘cash cow’.
We feel it likely that the most vulnerable in society will be at greatest risk of exploitation by a largely
unregulated sector whose practices are not governed by the Hippocratic Oath (or similar) and/or
where there is a lack of transparency and a potential for a lack of accountability with regard to
accreditation processes and procedures. By way of an analogy, we may know how to drive a car,
but that doesn’t by default make us qualified car mechanics. We suggest a centrally held register of
‘lay experts’, whose expertise has been appropriately assessed and certified. Perhaps membership of
the British Menopause Society(15) should be the new regulatory minimum ‘standard’ for those
engaging in menopause coaching?
To summarise, too many people are failed, and failed repeatedly by the current diagnosis and
management of menopause. And, whilst HRT is not the answer for everyone, nor for every
menopause-related symptom, quite often the simple application of a patch and/or blob of gel can
significantly improve quality of life. The current provision of healthcare with respect to menopause
can surely no longer be considered fit for purpose, if indeed it ever was. That may sound unduly harsh,
but some of us have tried to end our lives as a result of unmanaged / poorly managed menopausal
transitions. Let’s be the last generation to accept that as simply par for the course. One life lost, is one
too many.
Our recommendations are clear, we are calling for a paradigm shift in the way menopause is dealt
with within the healthcare system. Without timely and effective changes being embedded within and
throughout the full medic & nurse training trajectories and subsequent CPD framework, it makes it
exceptionally challenging to ensure such improvements are translated into tangible improvements in
the provision of healthcare, not least in primary care settings, and that such improvements are
maintained. One only has to look at the lack of adherence to the NICE guidelines on menopause to
see previous evidence of the “paper-tiger effect”.
“I cannot honestly think of any other guidelines that are ignored as much as the NICE guidelines on
the diagnosis and management of menopause. This has to change“(9,16)
In summary, we very much welcome this opportunity to submit evidence to the APPG on menopause,
and we look forward to publication of the enquiry report. If we can be of any assistance, or if additional
clarification is required, please do not hesitate to contact us.
Respectfully yours,
Sarah Williams Dr Helen Douglas
Menopause Inclusion Collective – APPG Menopause – Written Evidence
References:
(1)https://www.menopausecollective.org
(2)Hill K. Maturitas. 1996 Mar;23(2): The demography of menopause 113-27. doi: 10.1016/0378-5122(95)00968-x
(3)Maclean, R. 2021 MP for Redditch and Parliamentary Under Secretary of State in the Department for Transport in Moving
On Wellbeing Radio Podcast: S1 Ep4.
(4)Kulkarni J. (2018). Perimenopausal depression - an under-recognised entity. Australian prescriber, 41(6), 183–185.
https://doi.org/10.18773/austprescr.2018.060
(5)Douglas H, 2021 Communiqué MIC to CSW United Nations – State of Women [copy available on request]
(6)https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/suicidesintheunite
dk ingdom/2019registrations
(7)https://gen-m.com/invisibility-report/
(8)Douglas H., 2020 Personal communication
(9)https://www.nice.org.uk/guidance/qs143/chapter/quality-statements
(10)Charlton, J.I., 2000 Nothing about us without us - Disability Oppression and Empowerment. University of California Press.
(11)Trauma Informed Clinical Neuropsychiatry Ardino V., 2014. 11, (1), 45-51 Trauma-informed care: is cultural competence a
viable solution for efficient policy strategies?
(12)Trauma-Informed Project Team. 2013. Trauma-informed practice guide. Vancouver, BC: BC Provincial Mental Health and
Substance Use Planning Council. Available from: http://bccewh.bc.ca/wp-content/uploads/2012/05/2013_TIP-Guide.pdf.
(13)Purkey E., Patel R., and Phillips S.P., 2018. 64, (3), 170-172.Trauma-informed care Better care for everyone.
Canadian Family Physician.
(14)Treisman, K., 2020. Trauma-Inducing and Trauma-Reducing Health and Medical Experiences: drawing on stories from 390
people and some of the values of trauma-informed practice.
http://www.safehandsthinkingminds.co.uk/wpcontent/uploads/2020/12/trauma-inducing-or-trauma-reduci.pdf
(15)https://thebms.org.uk/join-us/benefits-of-membership
(16)Newson L.R., 2017 In GP View [cached www.gpview.co.uk]
*has since been discontinued, with existing supplies expected to run out by October 2021
Conflict of interests:
Sarah Williams is a menopause inclusion strategist, and founder of Equality Counts.
Dr Helen Douglas also writes as Dr Helen Kemp, and published a book on surgical menopause under that name. Dr Douglas
is a Trustee at the charity Menopause Café® and founder of Douglas Consultancy, and the Dignified Menopause global
initiative.