Breaking the Silence on Gynaecological Cancers – and Beyond!

FTWW Statement on Senedd Health & Social Care Committee Inquiry into Gynaecological Cancers & Plenary debate (15/05/24)

Breaking the Silence on Gynaecological Cancers – and Beyond!

Having contributed extensively to the recent inquiry into gynaecological cancers undertaken by the Senedd Health & Social Care Committee, FTWW was keen to read the Welsh Government’s response to the Committee’s subsequent report, ‘Unheard: Women’s Journey Through Gynaecological Cancer’.

Whilst the vast majority of its recommendations were accepted by the Cabinet Secretary for Health and Social Care, Eluned Morgan, some were not – and, so, the debate in yesterday’s plenary session in the Senedd was vital to explain those decisions, not least because, as Russell George, Chair of the Committee put it, ‘the evidence was the most powerful and emotional I’ve come across’.

Perhaps most in need of clarification was the Welsh Government’s assertion that, ‘the vast majority of those receiving cancer care for gynaecological cancer consistently report high levels of patient satisfaction with NHS services‘, whilst, in contrast, those providing personal testimony to the inquiry stated that they had never been asked about their satisfaction levels. Indeed, the harrowing evidence shared throughout the course of the inquiry conveyed more than mere dissatisfaction. Really hearing what patients have to say is an essential first step in creating health services that work for patients, so the routine collection, analysis, and learning which derives from PREMs and PROMs (Patient Recorded Experience and Outcome Measures) must be prioritised by the Welsh NHS going forward, something for which FTWW continues to make the case.

We also knew that the Women’s Health Plan for which we – and the Women’s Health Wales Coalition we chair – have been calling since 2021 would be cited as a key driver of improvements to the experiences recounted by those affected by gynaecological cancers, and we were not disappointed. The Plan – not yet published, but with work on it due to start imminently – was mentioned by every Senedd Member participating in the debate. Finally – and not before time – it looks as though women’s health has made it onto the agenda as an issue which transcends party politics, something that touches all citizens in Wales and every single human being the world over.

Whilst the Cabinet Secretary maintains that gynaecological cancers won’t necessarily explicitly feature in the Women’s Health Plan to which she has committed the NHS (this because there is a separate clinical network and improvement plan for cancer), we would argue that there is inevitable cross-over, so the Women’s Health Plan needs to make clear its links to the work underway on cancer, including steps to address workforce and capacity issues within gynaecology settings. Not only this, however – there are aspects unique to female experiences of healthcare which must be acknowledged and challenged head-on if we are to improve the offer to patients, whether they have symptoms of a gynaecological cancer or another health condition.

Perhaps the most significant of these gave rise to the Committee report’s title – ‘Unheard’ – and led to FTWW’s creation over ten years ago: the fact that women almost universally describe their reporting of symptoms as being diminished, dismissed, misattributed to emotional or psychological factors, their voices simply drowned out by the overwhelming noise of societal attitudes built upon millennia of gender prejudice, where women’s ‘wandering wombs’ were inextricably connected to their weak and unreliable minds, a state of being historically termed ‘hysteria’. It’s a concept that continues to cast a long and enduring shadow over our healthcare experiences and it has to be eliminated if we are ever to see things change for the better.

Involving people with lived experience in the design, delivery, and assessment of medical education has to be one of the most effective ways of ensuring that patient voices are taken seriously and properly embedded in the training our healthcare professionals receive and the services they provide – and this is something FTWW will continue to press home. We also need to see menstrual wellbeing education delivered consistently and well in schools, so that periods and associated symptoms stop being either too taboo to mention, or normalised to the extent that girls are made to think they’re making a fuss about nothing, a perception which can blight their educational prospects, careers, lives, and wellbeing far into the future.

Things are gradually moving in the right direction, with Welsh Government-funded research projects like SPPINN (Severe Period Pain Is Not Normal) looking to examine the challenges and gaps in managing this too-often misunderstood and under-estimated issue, and a national clinical network for gynaecology developing pan-Wales pathways for patients in secondary care. However, whilst these things are vital, and we anticipate them featuring in Welsh Government work on period dignity, women’s health policy, and the NHS Women’s Health Plan, loved ones are being lost to gynaecological cancers every day – and, alarmingly, the mortality rate is higher in Wales than anywhere else in the UK.

It doesn’t take a Women’s Health Plan to know that, now, more than ever, things must change. Let’s start by recognising that gynaecological cancers aren’t ‘silent killers’ – women have been asking, begging, shouting to be heard for far too long. Now is the time to start listening.