6. Debate on the Health and Social Care Committee Report, 'Unheard: Women's journey through gynaecological cancer'

– in the Senedd at 4:12 pm on 15 May 2024.

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Photo of David Rees David Rees Labour 4:12, 15 May 2024

(Translated)

Item 6 today is the debate on the Health and Social Care Committee Report, 'Unheard: Women's journey through gynaecological cancer'. I call on the Chair of the committee, Russell George, to move the motion. 

(Translated)

Motion NDM8581 Russell George

To propose that the Senedd:

Notes the Health and Social Care Committee report ‘Unheard: Women’s journey through gynaecological cancer’ that was laid on 6 December 2023.

(Translated)

Motion moved.

Photo of Russell George Russell George Conservative 4:13, 15 May 2024

Diolch, Deputy Presiding Officer. I move the motion tabled in my name. Each year, around 1,200 people are diagnosed with a gynaecological cancer in Wales. The incidence rate for gynaecological cancer in Wales is higher than the UK average and so is the mortality rate. Sadly, around 470 people die from a gynaecological cancer in Wales each year. As a Health and Social Care Committee, we agreed that women's health should be one of our priorities, and this is why we decided to carry out an inquiry into gynaecological cancers and the experiences of women with symptoms of gynae cancers. 

The committee was fortunate to be assisted in its work by some incredibly brave women, some I know are in the gallery today, who wanted to share their stories and be heard. And you can see some of their evidence in videos in the supporting documents attached to today's agenda. I would urge Members who have not seen those videos to make time to watch them, but I would warn you they are certainly difficult viewing. I really want to take the opportunity, though, to pay tribute to their honesty, their bravery and their determination to see changes made to the way that women's health is treated. 

Speaking personally, I've been a Member for 13 years and sat on several different committees and been involved in dozens of inquiries, but I would say that the evidence that I heard through the brave women who spoke to us was the most powerful and emotional evidence that I have come across in my 13 years as being a Member here.

Photo of Russell George Russell George Conservative 4:15, 15 May 2024

Now, the evidence we heard during the course of this inquiry was pretty shocking. The women who shared their stories with us told us how they felt that their health concerns were not being taken seriously by health professionals and how they dealt with them. The women knew that something was wrong with their bodies, but they struggled to get any health professionals to listen to them. Their symptoms were often dismissed or downplayed and they were made to feel, sometimes, that they were being a nuisance, and this was described to us most memorably as medical gaslighting.

Now, our report made 26 recommendations to the Cabinet Secretary. In addition to this, the committee took the opportunity to share the Cabinet Secretary's response to our committee's report with our stakeholders, and I'd like to share some of their feedback with you.

The Cabinet Secretary said that she is ambitious for change on women's and girls' health. However, her response to our report, I would suggest, is light on detail in prioritising the distinct needs of women. She outlines actions to support improvements in cancer care in general, including initiatives like rapid diagnostic centres and waiting-time recovery programmes, but there is an absence of targeted actions addressing the specific challenges faced by women with gynaecological cancers. And Claire O'Shea, a cancer patient who has experienced gynaecological cancer services in Wales, who some of us met just before this debate today, once again—she documented her experiences on video and she told us this: she told us that she had been deeply disappointed by the tone and lack of concrete commitments by any transformative change that can meet the challenges and needs of women in Wales now and in the future. And significantly, although the Cabinet Secretary accepted 24 of our recommendations, either in full or in part, her response does not commit to any additional funding for implementing the committee's recommendations, or to reprioritise existing funding for this purpose. Indeed, the recommendations she has accepted will be implemented within existing resources. Now, Tenovus Cancer Care told us that this sends a regrettable signal to women affected by gynaecological cancers, that investment in resolving the issues uncovered by the inquiry is not forthcoming, despite that it is a priority for Welsh Government and the NHS. Similarly, Claire O'Shea said that the rhetoric that women's health in Wales is a priority doesn't appear to be met with the ambition and resources that it demands.

Now, I'd like to draw your attention to the opening comments of the Cabinet Secretary's response to our committee's report, which stated:

'the vast majority of those receiving cancer care for gynaecological cancer consistently report high levels of patient satisfaction with NHS services.'

This particular statement was met with real surprise and disappointment by a number of our stakeholders who felt this did not represent their or their families' experiences. Claire O'Shea told us this: 'As a patient, at no point have I been asked about my satisfaction levels with the services I have received'. And Sioned Cash, whose mother Judith Rowlands passed away shortly after her video evidence was shown in committee, said that making this claim at the start of her response sets the tone for the rest of the report to be one that is quite dismissive of there being any issues. So, I hope, Cabinet Secretary, you will reflect on these comments and offer some reassurance to the women who shared their experiences with us, that the much-needed changes recommended in our report will become a reality.

I'll now talk to some of the points and recommendations in our report. In 2019 the Royal College of Obstetricians and Gynaecologists recommended that the four UK nations published a women's health plan to address areas of unmet need for women's health. The Scottish Government published its plan in August 2021, the UK Government published its women's health strategy for England in August 2022. Wales still does not have a women's health plan, and in the Cabinet Secretary's response, she says that this plan will be published by the end of the calendar year, but that's still some seven months away, so I'd ask the Cabinet Secretary, perhaps, in her remarks today, to set out why—why is it that we are so behind the curve in Wales?

In our report we recommended that the women's health plan includes a specific focus on gynaecological cancers, and the aim of this was to help improve women's health inequalities by raising awareness around the issues, improving access to healthcare and improving cancer outcomes for women diagnosed with a gynaecological cancer. So, it is disappointing that the Minister has chosen not to fully commit to including a specific focus on gynaecological cancers within the plan. I hope the Minister might be able to explain the rationale behind her decision in that regard.

The committee's report discusses the importance of funding for gynaecological cancer research, and during our inquiry we heard that research in this area has not been adequately prioritised under the current arrangements, and that the specific needs of women are being overlooked in favour of funding research into other types of cancer. So, it's hard to see from the Cabinet Secretary's response just how gynae cancer research will be prioritised in the future, especially when the Cabinet Secretary says that no specific funding will be made available in this area. Needless to say, this response, of course, was met with disappointment and concern by our stakeholders, who felt that this was a missed opportunity.

Now, we understand there will always be a certain number of cancer cases that are diagnosed through emergency admissions. However, in Wales this figure is unacceptably high, and during our inquiry we heard that receiving a cancer diagnosis in an emergency setting can be overwhelming for patients and their families, with accident and emergency departments not equipped to support patients to cope with the diagnosis. The number of women being diagnosed with a gynae cancer following an A&E admission suggests that something is wrong in primary care, and it really is crucial, I think, for health bodies to priortise efforts to understand and address the factors contributing to emergency presentations with a gynae cancer. This is why the committee recommended that the Welsh Government should commission an urgent review of these presentations. But, Cabinet Secretary, you did reject also this recommendation, saying that there is insufficient resource to undertake a formal review. Now, as you say in your response, emergency presentations of cancers can often lead to an inferior outcome for patients, so with this in mind, I hope you can commit to exploring other options for conducting such a review within the resources that are available.

Finally, I want to talk about the lasting impact of the pandemic and the need for those gynaecological cancer-related services that were lost during that time to be reinstated. Cabinet Secretary, you rejected our recommendation in this area also. From the evidence we heard, it is clear that there were long-standing issues in gynaecological cancer services that predated COVID-19. Waiting times for treatment are long, and compliance with single cancer pathway targets is one of the lowest for all reported cancers. We also heard of significant capacity issues, including a lack of resource, facilities and workforce, so surely, therefore, returning services to the pre-COVID level is a bare minimum we should be looking to achieve.

Cabinet Secretary, your response outlines a policy intention to transform how patient pathways and clinics are arranged and delivered to meet cancer waiting time targets. You say that the pre-pandemic clinical service model may not be suitable, given the increasing complexity of service delivery and limited capacity. So, can you then provide us with more detail of what this transformation will look like and how it will help improve gynaecological cancer waiting times and how will this transformation address the points made by the British Gynaecological Cancer Society about the need for services to be uniformly accessible and delivered across Wales?

I'm going to leave my comments there, and I'll make some other comments in the time I've got left for closing remarks, but I do look forward to Members' contributions in this debate this afternoon.

Photo of Mabon ap Gwynfor Mabon ap Gwynfor Plaid Cymru 4:24, 15 May 2024

(Translated)

Well, I want to begin my contribution to this debate by echoing what the Chair, Russell George, said, saying that this inquiry is amongst the most heart-rending and powerful and emotional inquires that I have been part of during my three years at the Senedd. For me and everyone that was part of the inquiry, and hopefully to everyone present today, it's clear that we are letting the women of Wales down. From the awareness, diagnosis, treatment and every step along the journey, we're letting far too many of our sisters down and we have to change the situation. I want to echo what Russell has said and express my sincere thanks to everyone who took part in the inquiry, and extend my sincerest condolences and thanks to the family of Judith Rowlands, who passed away after giving her evidence.

The evidence was heartbreaking—from the constant battle that women had to go through to be heard, being ignored, and being made to feel that they were hypochondriacs or neurotic, even though they lived knowing there was a problem, the way they were disregarded and were having to receive a diagnosis far too late, and how their lives, as a result, have been cut short, and families losing their anchors. As Tenovus told the committee, these are structural problems, and we need structural solutions to them.

Photo of Mabon ap Gwynfor Mabon ap Gwynfor Plaid Cymru 4:26, 15 May 2024

I welcome that the Welsh Government has accepted many of the committee's recommendations, but might I suggest that it is a little short of scandalous that the recommendations of this report, which, as I have suggested, are underpinned by the real, lived experience of women who have been failed by our health system, have not been accepted in full? These are the minimum required to affect the kind of structural change we need to see.

As is so often the case, it seems to me that there is a failure here on the part of the Welsh Government to acknowledge the scale of the problem—the necessary first step on any journey to resolving it. The fact that the instinctive response of the Government is to claim that the majority of people are happy with the service means that these women are being gaslit twice. Not only are they being told that they don't understand what's wrong with them by the health specialists, but to compound things, they're now being told the same thing by this Government. It's an insult in the extreme, and the Government should be ashamed of itself for issuing such a response.

It bears repeating that compliance with a single cancer pathway target is the lowest for gynaecological cancers; the facts speak for themselves. I'd like, for instance, a clearer justification as to why the Welsh Government is not prepared to work with the health boards to ensure that services lost during the COVID pandemic are reinstated as a matter of urgency. In her evidence to the inquiry, Dr Louise Hanna of the Wales Cancer Network’s gynaecological cancer site group was perfectly clear on the need to survey within Wales what services where lost due to COVID, and that the reinstatement of those services would be an absolute minimum requirement.

More specifically, I am frankly little short of appalled by the Welsh Government's continued foot dragging on the women’s health plan. The need for such a plan was flagged by the Royal College of Obstetricians and Gynaecologists in 2019. Scotland’s was published in August 2021, and the UK Government published its women’s health strategy for England in August 2022. Despite persistent promises from the Cabinet Secretary for health, in Wales we are still waiting for a women's health plan. Latterly, the Cabinet Secretary has also tried to absolve the Government of responsibility for delivering the plan by insisting that this sits with the NHS, and I quote:

'I can't determine what they're going to do, because it's their plan—it's the NHS plan. I do the quality statement, they do the delivery.'

This is, unfortunately, part of a repeating pattern, whereby Welsh health Ministers have consistently sought to avoid taking responsibility for problems that fall precisely under their brief. And we also have been told that if and when it does finally emerge, the women’s health plan for Wales will not include a specific focus on gynaecological cancers. None of this is good enough.

Photo of Mabon ap Gwynfor Mabon ap Gwynfor Plaid Cymru 4:29, 15 May 2024

(Translated)

I want to conclude by asking the Cabinet Secretary to look again at the recommendations that have been made and that she has rejected, and to reconsider this decision, and I ask the Cabinet Secretary when the women's health plan for Wales will be published, and to ensure that gynaecological cancers receive the attention that they deserve in that plan. Thank you.

Photo of Sarah Murphy Sarah Murphy Labour 4:30, 15 May 2024

I'd like to thank the Chair, fellow committee members and clerks for undertaking this inquiry. I am proud of the thorough and vital report that we have produced. I also want to pay tribute to Judith Rowlands, who is no longer with us. Judith's testimony of her lived experience was heartbreaking and powerful and was key to us producing our report. I pay condolences to her daughter, Sioned Cash, as well as Judith's family and friends, and thank you, Sioned, for responding to the Welsh Government response on your mother's behalf.

Claire O'Shea is here in the gallery today with us, Dirprwy Lywydd. Claire is my friend, known to many of us in the Chamber, and is now undergoing life-extending chemotherapy treatment, despite doing everything right, as they say—'everything right'—including looking after her health, presenting early with symptoms, pursuing appointments when she was dismissed and obtaining her own medical records to review the standards of care. Along with Tenovus Cancer Care, she has launched Claire's Campaign to amplify the voices of women who have felt ignored by healthcare professionals, leading to misdiagnosis, inadequate care and tragic outcomes. That is why we called the report, 'Unheard: Women's journey through gynaecological cancer', because, as Claire has summarised, women with cancer are often dismissed, downplayed, unheard and misdiagnosed by GPs.

Gender bias has seen many women's concerns attributed to emotional or psychological issues, because, crucially, the suspected cancer pathway target that the Welsh Government points to, to ensure the majority of their patients receive cancer diagnostic tests in a timely manner and start their treatment within 62 days from the very first point where cancer might be suspected, is not being met. Only 34 per cent of gynaecological cancers meet the suspected cancer pathway target, and I know for a fact that it is not being met for women in Bridgend, for example, because they are currently being sent to Swansea Bay health board, and I have had assurances that they will be brought over to Cwm Taf Morgannwg as soon as possible, but this is taking time that many of them won't have. I urge the Cabinet Secretary to work with my health board and others to prioritise this. I understand that this may be due to workforce, recruitment, resources, but that is why there is merit to the stakeholders asking for a comprehensive review of the gynacological cancer workforce in Wales, as set out in recommendation 19. Please can the Cabinet Secretary explain why this wasn't accepted?

I know that our Cabinet Secretary is committed to improving women's health. Only last month, a new clinical lead to help drive improvements in women's health was appointed, with Welsh Government allocating £750,000 to commission research focused entirely on women's health. But why won't the Welsh Government commit then to that going towards gynaecological cancer research specifically? Why wasn't that recommendation accepted? And also, it just doesn't make sense to many of us, as well as stakeholders, not to commit to including gynaecological cancer in the women's health plan that is due at the end of the year. I know that health boards are developing the plan, and also that there is a need not to duplicate work, so can't the suspected cancer pathway target just be incorporated—not duplicated but part of the women's health plan, so that it is part of that shared goal to address late diagnosis across women's health, and also really change that narrative that gynaeocological cancer needs to be siloed and is seen as too difficult or too rare to diagnose? Because, on the contrary, every year there are nearly 1,000 cases of gynaecological cancers in Wales, and these cancers are the fourth most common cause of cancer death amongst women here in Wales. But many are being diagnosed when they reach the emergency department, as Russell George mentioned, often after months—even years—of trying to get a GP to refer them for tests.

So, recommendation 15 was really crucial to call for Welsh Government to work with the Wales Cancer Network to commission an urgent review of the incidence, trends and high-risk populations in relation to emergency presentations with gynaecological cancer. The Welsh Government has said there are insufficient resources available to undertake a formal review within the requested time frame. If the issue was the requested time frame, then I take it back. We put six months on there because we wanted to make it clear that it was really urgent. If that's what the barrier is, then we take it back, because the British Gynaecological Cancer Society, Sioned Cash and Tenovus have said it just needs to be done—set a different time frame, but please do it.

And then, Dirprwy Lywydd, I want to end by quoting Claire O'Shea about the use of the term 'vague symptoms', because I don't think that anyone can say it better:

'I have an additional plea to stop using the term ‘vague symptoms’—we must move away from this language.... The use of ‘vague’ is loaded with connotations and it breeds doubt. It is clear that often, the symptoms grouped together as ‘vague’ are simply symptoms of Gynaecological or other cancers. If we were to use language that reflected that, the symptoms might be treated with seriousness and urgency.'

Claire, from me, I am so sorry that you and many women have been let down, and I urge all of us, and Welsh Government, to ensure that your Claire's Campaign will be a lasting legacy and change the outcomes for future generations of women. Diolch.

Photo of Sam Rowlands Sam Rowlands Conservative 4:35, 15 May 2024

I'm certainly grateful to colleagues for contributions in this important debate so far. Thank you to the committee, including the clerks and the Chairman, Russell George, for the hard work that's gone into the report, but I certainly want to join colleagues in thanking the women who contributed with their own experiences for this report as well. I'm very conscious that I've only joined the health committee in the last two or three weeks, but I just wanted to contribute today and recognise what an important report this is. I'm hopeful that the report and its contents will have a positive impact on the way in which gynaecological cancer is addressed in Wales.

And perhaps, before I go on to the substantive points that I want to raise, I just want to acknowledge what colleagues have mentioned in terms of the title of this report. It struck me when I read this that the first word in that title is the word 'unheard'. And I think that's the basis of much of what we're talking about here today, that people need to be listened to, that, when people present with symptoms—not vague symptoms, but clear symptoms, symptoms that need to be spoken of properly—people are listened to. And we've heard already colleagues mention the word 'gaslighting', of people being told to doubt what it is that they're feeling. That needs to be removed completely from people's experience when they visit their GPs or other health professionals.

And the other side of listening, of course, is the listening from Welsh Government, which colleagues have also raised here today. We're sick and tired of a tone-deaf response, quite frankly, what we're seeing here today. And I really hope that the Cabinet Secretary, in being here today, is hearing, and not just hearing but listening, to the words that are being said, and I look forward to the response, on the back of these contributions, from the Cabinet Secretary here today. But I would just like to focus on a couple of the recommendations that struck me when I read the report, and the recommendations that either haven't been agreed at all by the Welsh Government or not agreed in full. I'll also address why I think they should be accepted, and, for me, they're recommendations that struck me as fairly basic, fairly simple recommendations for a Government to accept.

The first one that struck me was recommendation 4, which was outright rejected, and this was mentioned by Russell George as well in his contribution. This asked Welsh Government to work with health boards to ensure that an assessment is made of gynaecological cancer related services lost during the pandemic and ensure that those services are reinstated quickly. It strikes me that that's not the toughest recommendation for a Government to accept. We know that the pandemic had a brutal effect on health provision in Wales and beyond. There's no denying that at all. That's not the issue that we're talking about. The context around the clinical services model has changed, but the need for reinstating that clinical capacity is still there. We heard from Russell George earlier on the number of people who are diagnosed with gynaecological cancers, and, sadly, around 470 of those are dying in Wales each year. I'll quote Dr Louise Hanna of the Wales Cancer Network, who called for immediate action on this survey to know what services were lost due to COVID and to reinstate those immediately. And Dr Hanna also made the point that, in actuality, we need to go above and beyond that, but at least a starting point is to do that analysis to understand what has been lost and what needs to be reinstated.

The second recommendation that struck me, Deputy Presiding Officer, was one that wants Welsh Government to work with different groups, including Public Health Wales, on a series of campaigns to raise awareness about the symptoms of gynaecological cancer, and that's recommendation 12. Now, this was accepted in part, to be fair, but there are concerns that previous campaigns haven't been as effective as they should have been, and, to quote Tenovus Cancer Care, they say that there is little or no consistency and co-ordination on these campaigns, and they've also said that for

'relatively small amounts of funding, Welsh Government, through the Wales Cancer Network, Public Health Wales and others could develop a range of campaigns, online and offline, targeted at at-risk audiences.'

So, again, there is a fairly straightforward recommendation there that would make a huge difference to the lives of women up and down Wales, and I'm baffled as to why Welsh Government didn't feel that they could accept that recommendation as well, because we know that raising awareness is half the battle for illnesses like this, and effective campaigns mean that more people are aware of potential symptoms and can, crucially, get checked out before the cancer becomes too pervasive, and this is a relatively straightforward way to help save lives, and a relatively low-cost way of helping to save those lives as well.

So, Cabinet Secretary, I would urge you to revisit the partial rejection of recommendation 12 that I mentioned there and the recommendation 4 rejection. Again, I just want to thank the committee for its work and I’m grateful to be able to join the committee at this stage and hope the Cabinet Secretary will think on these recommendations as I’ve outlined here today. Diolch yn fawr iawn.

Photo of Jane Dodds Jane Dodds Liberal Democrat 4:40, 15 May 2024

Thank you to the committee; thank you to all of those who brought your experiences so bravely. It’s a sad place when, in Wales, we are seeing women being pushed back again, being told to get back, get in their box, don’t moan, don’t complain, because putting it and leaving it in the dark means that it just gets worse and worse. This report has shone a light on a much-concerning area, and I do thank the committee, but most of all I do thank those brave experiences brought to the committee by the women who gave evidence.

The situation is that it’s so challenging that too many women endure gynaecological cancer. From the casual dismissal of their symptoms to the unacceptable delays in receiving treatment, this report exposes the systemic failings that no longer can be ignored. It is, though, so disheartening that the Welsh Government’s response seems to be half-hearted. By accepting the majority of recommendations only when they are cost neutral, we seem to be turning a blind eye to the urgent need for robust investment and research, support services and comprehensive reforms. Above all, we must reiterate the paramount importance of completing and publishing the long-overdue women’s health plan for Wales. Two years ago, the Cabinet Secretary herself acknowledged the pressing need for such a plan. Yet, since then, women’s distinct healthcare needs have languished in limbo, with Wales falling far behind Scotland and England, who have both released their plans. How can we actually hope to tackle the entrenched inequalities that plague women and their health if we can’t co-ordinate our efforts? I do urge the Cabinet Secretary to not only commit to publishing the plan at the earliest possibility, but to listening to the voices of the women it aims to serve and to include a clear, comprehensive focus on the threat of gynaecological cancers.

Beyond this, I just wish to highlight three areas. Firstly, the report highlights the alarming lack of awareness surrounding the symptoms of gynaecological cancer. With early diagnosis, as we all know, being crucial to saving lives, I have to concur with Public Health Wales that multiple ongoing recurrent campaigns are absolutely essential. We have to work with community organisations, ensuring that that information is available to all our communities in whatever language and ensuring that it reaches those women that are hard to reach at times. Occasional social media posts on Government accounts aren’t going to cut it. The Welsh Government’s response to recommendation 12 implies that existing efforts are sufficient. However, there is a lack of consistent, co-ordinated and well-funded national campaigns to raise awareness, so I would urge the Cabinet Secretary to take that away.

Secondly, the Welsh Government must confront declining cervical cancer screening coverage in Wales. It currently stands at a disheartening 69.5 per cent. This downward trend poses a grave threat to our efforts in early detection and prevention, and we can’t continue to allow it to go unchecked.

Finally, I would like to see priority given to palliative and end-of-life care for women with gynaecological cancers. The stark reality that these patients endure over 13 interactions with unscheduled care in the final year of their life, nearly double the population average, is a sobering testament to the insufficiencies in available community care. I would welcome your clarification, Cabinet Secretary, about what efforts you are taking to close the implementation gap with palliative care and how you intend to fully implement and empower the programme to oversee delivery of that statement.

Ultimately and finally, the Welsh Government must demonstrate the determination to rise to the challenge outlined in this report and strive towards a future where no woman in Wales faces the agonising experience of gynaecological cancer alone, uninformed and unsupported. Diolch yn fawr iawn.

Photo of Delyth Jewell Delyth Jewell Plaid Cymru 4:45, 15 May 2024

I am truly grateful to Russell and his committee for looking at this, and I would pay tribute to all of the women and their families who have given evidence. I also think that it is really powerful that the report is called 'Unheard', because gynaecological cancers steal the lives of too many women, too often, as we've heard already, because their symptoms went unnoticed until it was too late or the women's own concerns were unheeded by doctors. Women don't get listened to when it comes to healthcare, not anywhere near enough, and that has to change.

I'm going to focus my remarks on ovarian cancer, but I know that cancers of the womb, the cervix, the vulva, the vagina have to be talked about too. Part of the issue here is that some of those words are considered a taboo, not quite polite. If even the words for those body parts are thought of as unmentionable, how can we be surprised that some women find it difficult to find those words to talk to their doctor about what's going wrong in those places? But as we've heard as well, many women are shouting about their symptoms, they have found those words, but they're not being heard, they're not being believed.

Only 31 per cent of women in the Aneurin Bevan health board area are diagnosed with ovarian cancer early, that is at stages 1 or 2. Sixty-nine per cent are diagnosed at a late stage, when the disease is far more difficult to treat. More than 300 women across Wales are diagnosed with this type of cancer every year, and roughly half of that number die from ovarian cancer each year. Those figures are stark. I'm quoting from Target Ovarian Cancer, who have provided me with a briefing for this debate.

I agree with what's been said: we have to raise awareness about the symptoms of ovarian cancer alongside all these other cancers. That's patently the case when 27 per cent of women, only 27 per cent, were able to recognise bloating as a symptom of ovarian cancer. Now, I agree with campaigners that if the Welsh Government has to wait for more money to become available to fund a symptom-awareness campaign, women will die. What more can be done to encourage more women to be aware and feel that they can talk about their symptoms? So many women downplay how they're feeling. They tolerate too much pain. They're frightened of going to the doctor. We've got to change that, or, again, more women will die.

There are an awful lot of changes about how we go about cervical screening, particularly, again, around accepting women's pain. I know the committee's report argued for improving the information that's given to women when they have their smear. Again, according to Target Ovarian Cancer, 42 per cent of women in Wales wrongly believe that a smear test can detect ovarian cancer. That confusion could cost lives, and I'm glad that the Government has agreed to amend the information given to patients, because having that information is empowering. If ovarian cancer is diagnosed early at stages 1 or 2, 93 per cent of women survive for five years or more, and that falls to 13 per cent of those diagnosed at stage 4.

Not all GPs realise that symptoms can be detected early with the disease. A quarter of women diagnosed will have visited their GP three times or more before they are referred for tests. Now, this isn't GP bashing, they do a fantastic job, but we need to make sure that they have the support and the training they need to change those statistics. Let's empower GPs more by rolling out education and training on these symptoms. Cabinet Secretary, could we lessen the amount of time that it takes? Why not undertake blood tests and an ultrasound at the same time, because this is an aggressive cancer? Time lags in between those tests can make a devastating difference.

So much of what I've said about ovarian cancer can be said for those other gynaecological cancers, those other cancers of the parts of the body that we don't talk about, the parts of our bodies that we're more likely to ignore pain from, the bits of our bodies it's more awkward to mention. The proverb talks about how, for want of a nail, a shoe was lost. Please let's stop a situation where, for want of words, for want of words that are listened to, the lives of loved ones are lost too.

Photo of Jenny Rathbone Jenny Rathbone Labour 4:50, 15 May 2024

I'm very pleased to be taking part in this debate. My own sister died of ovarian cancer, and this was after three separate primary incidents of breast cancer. Ovarian cancer is much more difficult to diagnose than the single job of self-examination of your breasts. There's plenty of cultural misappropriation of breasts, but discussion of what a healthy vulva or vagina looks like is hidebound by much more embarrassment and ignorance, as Delyth has already referred to. Many people, for example, fail to attend cervical cancer screening appointments for similar reasons, and this is particularly prevalent amongst ethnic minority communities, and these are serious issues that we all need to bear in mind.

The cross-party group on women's health discussed the issue of these five cancers in December 2022. We heard from two very, very powerful witnesses, which provoked a really useful discussion. Firstly, Athena Lamnisos, who is the chief executive of the Eve Appeal, which is focused on prevention, risk prediction and early diagnosis. Across England and Wales, 60 people are diagnosed every day of the year with one of these five gynae cancers and 21 of them will die. So, early diagnosis, we know, increases hugely the chances of survival, which is why the Eve Appeal is campaigning for women to be made more aware of their own risk factors and pay attention to what their bodies are telling them, which is when they're then able to go and confront the clinical issues that many people have already spoken about.

Our second witness was a man called Jim Sweet—an extraordinary man—whose wife, Sian, had died of ovarian cancer, aged 48. She had been advised that the pain in her stomach was irritable bowel syndrome. However, after she was admitted to the accident and emergency gastroenterology ward, she was diagnosed with ovarian cancer and given six weeks to live. Tragically, she died a fortnight after her diagnosis.

Jim is really an exceptional man, because, as a widower, he has dedicated his time to learning everything there is to know, that he can, about ovarian cancer, and he began researching the risk factors. His research found that there are 23 factors that indicate that a woman could go on to develop ovarian cancer, however, there was no research that considered these risk factors holistically and balanced the probability of one or other of them being more important. So, as a mathematician, he developed a formula for the consideration of all these risk factors, and has been working with medical professionals and researchers at Cardiff University to develop an algorithm based on this mathematical algorithm. It's 88 per cent accurate, 81 per cent sensitive and 95 per cent specific and is currently going through the process of clinical evaluation, with the hope that it will help clinicians with diagnostics in the future.

But, given that extraordinary contribution, I have to say that the most powerful thing that Jim Sweet told us was that he, himself, was a survivor of prostate cancer and he reflected on the fact that he'd been given a Rolls-Royce service with a dedicated ward and a clear clinical pathway, and how different it was for his wife.

So, I just want to echo the concerns that other people have said about this medical gaslighting, because I think, given the really challenging financial situation that we have in the health service, we're not about to get new services, but we absolutely can work on the culture of listening to women, of ensuring that women understand their own bodies, but also, when they present and say, 'This is not normal; I know I've got something wrong', that they are listened to and taken seriously, and not simply sent away and told to come back later, or if the problem changes. That is the one thing that we can really do something about now, and that will help women's voices to be heard, and then to get earlier attention for obviously being able to combat this cancer.

Photo of Peter Fox Peter Fox Conservative 4:55, 15 May 2024

Can I start by genuinely thanking the Health and Social Care Committee for undertaking this inquiry and producing this report? Your findings and recommendations, I hope, over time, will save lives. It’s not often that I read a report that brings me to tears, but this one did, and I thank all of those who gave evidence to that committee. It was such an important piece of work.

It was heartbreaking to learn that so many women don’t feel that they are listened to, and sadly, many are losing their lives to cancer as a result. That shouldn’t be happening in this day and age. People know their bodies. They know when things aren’t right and, as such, they should always be listened to and given the time needed by health professionals to identify and treat conditions in a timely manner, because clearly, as we have heard, timing is so crucial with gynaecological cancers.

I want to thank all of the organisations and constituents who have contacted me recently to voice their concerns, including Target Ovarian Cancer and the Women’s Institute. Since being elected, I have met some wonderful people. Jim Sweet, a constituent, is one of those whom I have met many times and heard harrowing stories of suffering and sad loss.

The report says that, too often, women’s concerns are dismissed as a result of preconceptions about their emotions or pain tolerance. Sadly there has been a gross lack of medical research on female subjects, which can lead to misdiagnosis or inadequate care being provided. And yes, while not every woman who visits their GP with symptoms of gynaecological cancer has a bad experience, when things do go wrong, the consequences are dire, as we’ve heard.

As the report highlighted, and Russell shared, about 1,200 women a year are diagnosed with gynaecological cancer in Wales. It’s also sadly a fact that Wales has some of the worst survival rates for ovarian cancer in Wales. We heard from Delyth earlier that 300 women are diagnosed with ovarian cancer each year in Wales and, tragically, up to 150 of those lose their lives.

I applaud charities such as Ovarian Cancer Action, and many others, that are working towards early diagnosis of ovarian cancer, and the crucial work, as we’ve heard, that Jim Sweet is doing along with Cardiff University, which is so important. This is crucial work. Too often, women are suffering with a critical disease, and their loved ones don’t even know it.

Again, this is largely down to the fact that women are diagnosed far too late. So, it follows that early diagnosis is fundamental to improving outcomes. The report recognises that innovation and investment in early diagnosis will be key. I know that there are early diagnostic tools, as we have heard from Jenny, that the likes of Jim Sweet are bringing together, which will be revolutionary in helping to identify those at risk of gynaecological cancers.

We need these innovations to come forward as soon as possible, and I certainly hope that the Government will embrace them and will invest in ways to help those most at risk. As this report says, there will always be a certain number of cancer cases that are diagnosed through emergency admissions. However, this figure is unacceptably high in Wales, and diagnosis through admission to A&E suggests that something is going fundamentally wrong within our primary care.

As with all cancers, early diagnosis is vital for increasing the chance of survival, but sadly only a third of women in Wales are diagnosed at stages 1 or 2. Clearly, we need to ensure that the system is listening to women. We also need to ensure that GPs and healthcare professionals have access to medical education focusing on gynaecological cancers, and they also need support from secondary care to assist them in the assessment and referral of patients with potential gynaecological cancer symptoms.

Gynaecological cancer diagnosis pathways should be prioritised to ensure that more people are able to start treatment as soon as possible. The current situation of only 34 per cent of women getting cancer treatment within that 62-day target is just not acceptable. I listened to Claire O'Shea on the radio coming in this morning. It was very moving, and I wish you well in your campaign as you go forward. The Welsh Government must put more resources into working with universities and undertaking more research into women's health to ensure that our healthcare professionals learn more about these gynaecological cancers and how to diagnose sooner.

I'm glad that the Welsh Government has accepted 18 of the 26 recommendations in this report. However, there is, as we've heard, wider concern that the Welsh Government is clearly in denial about the scale of the problem here. It is only through meaningful change that Wales can become a nation where women have the confidence to speak to their GP with the full knowledge they will be supported and receive the care they deserve. I sincerely hope we will see that change soon. Diolch.

Photo of Joyce Watson Joyce Watson Labour 5:01, 15 May 2024

I could spend my time asking to be listened to; I could spend the whole five minutes saying, 'Listen to me, listen to me, listen to me.' And that would somehow reflect what these women have done, asked and spent their time with the health professionals doing. But that would do an injustice, because there are other things that have to happen. They have been ignored, they have been brushed aside, and they were ridiculed—we've seen that—and that evidence is there in the video. It's an important and it's a moving report, but it underscores the urgency of addressing disparities in access to care, enhancing support services and promoting awareness and education across Wales.

I want to pay tribute to the honesty and the bravery of the women who gave evidence. Their stories are poignant and they're telling. Judith was repeatedly told that her severe pain couldn't be caused by the return of her endometrial cancer. By the time she finally had a scan, the cancer had returned but was uncurable. Claire's rare and aggressive cancer was diagnosed two years after she first raised the symptoms with her GP. It took a Turkish masseur to spot what her GP had misdiagnosed as IBS. Linda told of how her ovarian cancer was also misdiagnosed as IBS and urinary tract infections. Unfortunately, it happens too often, and we've heard many stories here today.

It's called the silent killer, and it is a silent killer, because by the time the symptoms are diagnosed, it is very often too late, which brings me back to where I started: you have to listen to women. We can all play our part by being aware ourselves of the potential symptoms, by not ignoring those symptoms, but also by doing all the tests that are available to us. But unless GPs or health professionals are aware of those symptoms, and have the willingness to listen to women when they do present with those symptoms, nothing's going to change.

I'm pleased that the Welsh Government has largely accepted the recommendations of the report, but gynaecological cancer should be, in my opinion, in the women's health plan. I will pay recognition here to the Cabinet Secretary for health, because she has taken seriously the issue of women's health. She is driving forward a women's health plan. That is the first of its kind in all of the time and the numerous Ministers for health that preceded her. So, I will thank her for that.

The report must lead to people like Judith, Claire and Linda being listened to and taken seriously, because we all know the subsequent outcomes if people aren't listened to. This will require cultural change within the health service and within society at large. Since the beginning of time, women have been called 'hysterical' and 'emotional'. Those are words that were used to some of these women when they were describing their own symptoms. It’s very easy to attribute those words to women rather than look and listen.

We must have targeted change. It is needed urgently, and part of that has been mentioned already. We need research. We do need a return to service levels pre pandemic, but we’ll accept that maybe some of those pathways are different, and I think that is fair. But we owe it to the women who stood before us, to the women who stood before us and are no longer here, and to their families, and also to help the professionals to help those women as well.

Photo of David Rees David Rees Labour 5:05, 15 May 2024

(Translated)

I call the Cabinet Secretary for Health and Social Care, Eluned Morgan.

Photo of Baroness Mair Eluned Morgan Baroness Mair Eluned Morgan Labour

Diolch, Dirprwy Lywydd. I'd like to thank all Members of the Senedd Health and Social Care Committee for their work on this important report about gynaecological cancer, and all the Members who've contributed to the debate today. But most of all I'd like to thank all the women who gave evidence to the committee's inquiry. Thank you for coming forward and for sharing your personal experiences. I know it had a profound effect on members of the committee, as the Chair set out.

I want to start by apologising to you on behalf of the NHS for where we got your care wrong and where we let you down. In no way am I dismissive of the conclusions of the report. I hope you’ve noted that we’ve accepted almost all of the recommendations, and I absolutely accept the scale of the challenge ahead of us. We all want and expect the NHS to provide the highest possible standards of care and to treat people with the dignity and respect that they deserve. Unfortunately, there are occasions where this doesn’t happen, and the NHS doesn’t always get it right. Despite people’s hard work and dedication, sometimes things go wrong. When things do go wrong, I expect the NHS to be open and honest about what happened, to put things right, and, most importantly, to learn from its mistakes. That’s why we introduced a duty of candour, so we and the NHS can do exactly that.

Healthcare and health services for women are not the same as men’s. All women should feel confident that their specific health needs will be met and their concerns will be taken seriously. This is something I was able to discuss in terms of training with representatives from the GMC this morning. That’s why we introduced the quality statement for women’s and girls’ health in 2022, and that’s why the NHS is developing a women’s health plan. It must be owned by the NHS so they have this sense of ownership, so that they have this need to deliver it, and I am pleased that we have got a very good woman to lead that clinical approach that we’re looking for.

This will be ready at the end of this calendar year, and within this, I shall ask them to be particularly careful with the use of language that I know offends some women, like the reference to vague symptoms. Also, we need to make sure that staff are trained to speak in accessible language that helps people to understand what clinicians are saying. I know lots of women don’t feel listened to, and we’ve heard this once again in the report that was published earlier this week in England on birth trauma.

I want to turn now to the issues highlighted by this inquiry and the committee’s recommendations. As I set out in my evidence to the committee and in my subsequent response to the committee’s report, improving cancer care has been and continues to be one of my priorities for the NHS in Wales. It is why I was pleased to accept the vast majority of the committee’s recommendations. We’re working hard to improve cancer waiting times and ensure people get faster access to diagnosis and treatment. We know that where we’re at at the moment is not good enough.

In March this year, more than 14,000 people were given the good news that they didn’t have cancer. I’m absolutely clear that health boards still have a lot more work to do to improve their performance against the 62-day cancer target, and this is particularly true when it comes to gynaecological cancer. It’s not an excuse, but it’s a fact that we are facing, year on year, increases in demand for cancer investigation and treatment that we can't meet in the way that services were delivered in the past. To give you a sense of the scale of the increase in demand, it's worth noting that there's been a 34 per cent increase in the number of women referred for suspected gynaecological cancers between 2019 and 2023.

With the best will in the world, it is difficult for us to switch on this kind of capacity in such a short space of time. Going to pre-pandemic pathways and systems in the face of that increase is simply setting ourselves up for failure, so getting new pathways in place is the right and proper way to do things. But we have to make changes to meet that increase in the number of referrals, and I will be holding a national summit in July to focus NHS attention on gynaecological services, including cancer. 

Photo of Baroness Mair Eluned Morgan Baroness Mair Eluned Morgan Labour 5:11, 15 May 2024

(Translated)

We cannot return to the services of the past and how things were pre pandemic. I have already announced a national recovery programme worth £2 million through the NHS executive, and this will focus on three kinds of cancer, including gynaecological cancer. The NHS executive has agreed on the steps that they will take in order to tackle cancer, which will change how services are planned and provided to women in possible cases of gynaecological cancers. 

I want to explain why we can't accept a recommendation to review data and activity on gynaecological cancers within six months of the publication of the committee's report. In order to do this, we would need to shift resources away from efforts to improve waiting times and cancer services. The data that we already hold shows what needs to be done. We are taking steps in terms of GP awareness of symptoms and referral practice. Swift diagnosis centres are operational across the country. We have national pathways and smart data equipment that helps us plan improved services, and this includes a new clinical inspection of ovarian cancer. 

We are developing new ways of delivering services and accelerating care pathways. We are looking at improving the rates of those who participate in screening activities in areas and groups of the population that are less likely to take up the screening opportunities. We are investing in new radiotherapy and diagnostic equipment, and the new treatments fund ensures that drugs that have just been approved do start to be used earlier. We will also invest in new research capabilities as part of the women's health plan, and I hope that you will have noted that since I responded to the report I have redirected over £700,000 to women's health research. 

This is a comprehensive package of steps that will help us to improve services. Put simply, at the moment the performance of health boards in this area is not good enough. There's a great deal of work to be done by the NHS executive too in supporting them, and in ensuring that clear care pathways that are set out are followed. I will be more than willing to update you on the progress of this work during the rest of this Senedd term. Thank you to the committee for the report, and a particular thanks to those women who provided evidence. Thank you.    

Photo of David Rees David Rees Labour 5:14, 15 May 2024

(Translated)

I call on Russell George to reply to the debate. 

Photo of Russell George Russell George Conservative

Thank you, Deputy Presiding Officer. I would like to reiterate my thanks particularly to the incredible women who helped us with our work. I'd also like to pay tribute to Judith Rowlands, who sadly passed away on 21 May last year. Judith gave really powerful evidence to our committee through video last year, and I really want to extend the committee's thanks to her husband, Gwilym, and daughter, Sioned, for their continued support for our work. I'd also like to thank the support that we've had from the clerking team and the wider integrated team, and especially the Senedd engagement team as well, who really helped us in our work on this inquiry in encapsulating the evidence from the women who gave us such powerful evidence. 

Just to comment on some of what's been said today, Mabon pointed out the failure of Welsh Government to acknowledge the scale of the problem, and that was really the issue here that was a theme across our report, as Peter Fox also pointed out as well. Tenovus Cancer Care pointed out that the number of women starting their cancer treatment within 62 days—the 62-day target—is at an all-time low, and Sarah Murphy commented on that in her own contribution. And that's why, as a committee, we were baffled by the fact that the Government didn't accept some of the recommendations around reinstating services, following the COVID pandemic, and Sam Rowlands referred to that in his contribution, about the disappointment that our recommendation 4 in that area had not been accepted.

I thank Jane Dodds for her contribution as well. Of course the women's health plan really is well overdue; we really are behind the curve in Wales. We've seen that plan in Scotland, in England, and we haven't yet got that plan in Wales, and that is so disappointing, as Delyth pointed out as well in her contribution. And thank you, Jane Dodds, as well, for pointing out that the cervical cancer screening coverage also needs to be addressed.

Thank you, Delyth, for your contribution as well in pointing out the taboo subject, which is often an issue, which Jenny referred to in her contribution as well. And, Jenny, thank you for talking about your own family experience. But women do know their bodies best. That was a recurring theme that we heard in our evidence session and how health professionals just don't listen, ignoring women knowing and understanding their own bodies, as you pointed out in your contribution. And Jenny and Peter, you also referred as well to Jim Sweet, and I believe Jim is in the gallery today, actually, I've been told, so thank you, Jim, as well, for your work and support in this area.

And Peter, you hope that lives will be saved, but as a result of our report—. Our report is just that, it's a report with recommendations, and we as a committee want to see the Government reflect, perhaps, again on its response. And, of course, Joyce, I agree with your comments in terms of the need for a wider culture change and the inappropriate words that are often attributed to women by some health professionals is also something that needs to be tackled as well.

Minister, I thank you for your response. Your tone, I think, was right, in offering that apology—the NHS not always getting things right. And I understand, Cabinet Secretary, you say that you've responded positively to most of the recommendations in the report, but when we actually look at the response to the recommendations, we felt that you've accepted them, but we felt, as committee members and stakeholders as well, that your response that followed seems to suggest that some of the things that we're suggesting you do, you're already doing, and we don't think that's the case. But, no, we'd welcome further dialogue with you, and I think you've offered that in your closing remarks today as well. I do hope that our report will bring about changes that are so desperately needed to improve the experiences of women in the future. Diolch yn fawr iawn.

Photo of David Rees David Rees Labour 5:18, 15 May 2024

(Translated)

The proposal is to note the committee's report. Does any Member object? No. The motion is therefore agreed in accordance with Standing Order 12.36.

(Translated)

Motion agreed in accordance with Standing Order 12.36.