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6. Debate on the Petitions Committee Report on a Petition on Ovarian Cancer

March 29, 2017

14 speeches by…

  • Ann Jones
  • Mike Hedges
  • Angela Burns
  • Rhun ap Iowerth
  • Hannah Blythyn
  • Caroline Jones
  • Julie Morgan
  • Rebecca Evans

Ann Jones

We now move on to item 6 on our agenda, which is a debate on the Petitions Committee’s report on a petition on ovarian cancer. I call on the Chair of the Petitions Committee, Mike Hedges, to move the motion.

Mike Hedges

Thank you, Deputy Presiding Officer. I’m very pleased to open this debate on the Petitions Committee report on a petition received calling for a national screening programme for ovarian cancer. This petition was organised by Margaret Hutcheson, and was supported by 104 people. Ms Hutcheson, a retired palliative care nurse, was inspired to start the petition after several of her friends had been diagnosed with ovarian cancer. Her primary concern was to improve timely diagnosis and treatment of this terrible disease. Her main ambitions for the petition were for a national screening programme for ovarian cancer, and increased awareness of ovarian cancer and its symptoms amongst health professionals and the general public. As a committee, we held oral evidence sessions with the petitioner, the Minister for Social Services and Public Health, and we also wrote to cancer charities to seek their views. We as a committee are grateful to the Welsh Government, Cancer Research UK, Ovarian Cancer Action, and Target Ovarian Cancer, who all provided their views on the subject of the petition. Ovarian cancer is responsible for around 240 deaths each year in Wales—or, in terms we understand, six per constituency—and is one of the major causes of mortality in women in the UK. One in 50 women will have ovarian cancer at some point in their lives and, tragically, less than half of women diagnosed with ovarian cancer are alive five years after diagnosis. Evidence we received also indicated that survival rates in the UK are lower than the European average. Margaret Hutcheson, the petitioner, was accompanied by her friend Jenny Chapman to answer the committee’s questions, and I would like to place on record the committee’s sincere thanks to both of them for coming along and giving us their views. All the views we heard support the importance of early identification of the symptoms of ovarian cancer. Doesn’t that sound common for all cancers? Early diagnosis improves the chances of successfully defeating the disease, and I think that that is something that we perhaps need to say more and more often. We heard that there’s a close correlation between early diagnosis and the outlook for women receiving that diagnosis. Whilst this is not unique to ovarian cancer, the committee did hear that ovarian cancer can be particularly difficult to diagnose. This is because the common symptoms are easily mistaken for either other conditions, or there are no symptoms at all. For these reasons, by the time most women with ovarian cancer develop symptoms and their cancer is detected, it has spread outside the ovaries and is far more difficult to treat successfully. Figures we received from Cancer Research UK showed that the five-year ovarian cancer survival rate in England and Wales is 46 per cent, or, put the other way, 54 per cent die within five years. However, amongst women diagnosed at the earliest stage, this increases to 90 per cent. So, over a third more women who are diagnosed at the early stage survive than would if they waited until the later stage. We believe this represents a convincing case for taking further action to increase the number of women with ovarian cancer receiving an early diagnosis. This petition primarily called for the introduction of a screening programme to detect early-stage ovarian cancer. The petitioner argued strongly this could help save the lives of women who develop cancer. The petitioner made the case that this should involve women receiving an annual blood test aimed at detecting early-stage ovarian cancer. In her evidence to committee, Margaret Hutcheson suggested the programme should specifically target all women aged over 50. Ovarian cancer screening is not currently available on the NHS in Wales, nor in any other part of the UK. The committee heard that studies to find a general population screening test for ovarian cancer are currently ongoing. The largest of these is the UK collaborative trial of ovarian cancer screening, which has been running since 2001. Findings were published in December 2015. They indicated there could be benefits from conducting screening using blood tests, but these were inconclusive overall. As a result, the study has been extended for another three years. In her evidence, the Minister for Social Services and Public Health outlined the process through which Welsh Government takes its advice from a UK national screening committee, which advises all UK Governments. We learned that the screening committee ‘has recently reviewed its recommendation about ovarian cancer screening and their existing recommendation remains for no population screening at this stage.’ We also heard concerns about the accuracy of the most common blood test for ovarian cancer, the CA125 test. Women with ovarian cancer tend to have high levels of the CA125 protein in their blood—more than women who do not have ovarian cancer. But CA125 can also be raised for a number of non-cancerous reasons. This means there is a significant risk of false positives. We heard it is possible that only 1 per cent of women referred to secondary care following a CA125 blood test would actually have ovarian cancer, and I think that one of the things we did feel was that we don’t want people to be frightened of something when the chances of them having it are that low. Therefore, the research currently indicates that the test is not currently accurate enough to be used as part of a screening programme. Having given careful consideration to the range of evidence the committee received, on balance, we accept that the current evidence does not support the introduction of a population screening programme. However, given the study is still under way and will report further findings in the coming years, we recommend that Welsh Government should keep the situation under close review and give detailed consideration to any evidence in relation to a new national screening programme. Given that early diagnosis is so important in cases of ovarian cancer, an effective screening programme could play a vital role in improving survival rates, and I am pleased that the Minister accepted this recommendation. As stated earlier, though we are not able to support a national screening programme, we felt as a committee that other measures taken to improve early identification of ovarian cancer—. I will now turn to those. The need to increase public awareness of ovarian cancer was the central theme of the evidence we received. The petitioner expressed concern that public awareness of the condition is extremely low and described ovarian cancer as a ‘silent killer’. We heard that a leaflet on ovarian cancer, including common symptoms of the disease, is available through GP surgeries, and the Velindre NHS Trust ran a month-long awareness campaign in March 2016. As part of this, information packs for GPs were produced by the charity Target Ovarian Cancer. We welcome these actions and the efforts taken to increase public awareness of ovarian cancer and the common symptoms. Nevertheless, we feel that more could and should be done to ensure greater numbers of women are aware of the disease. Building awareness is the key, because, once they become aware of it and become aware of the symptoms, then there’s a greater chance of them going to see their GP and getting a referral. We have recommended the Welsh Government should do more to improve public awareness of ovarian cancer, including the common symptoms and when people should seek medical advice. We would like to see this build upon previous work and run over a prolonged period. I recognise there is merit in raising the public profile of a large number of conditions and diseases. However, the evidence we received convinced us there should be a focus on ovarian cancer specifically because of the vital importance of detecting the disease at the earliest possible stage. This was strongly supported by the petitioner and by the charities we contacted. For example, Ovarian Cancer Action told us that: ‘Funding would be better spent at this time on a national symptoms public awareness campaign.’ I must say I am very disappointed the Minister has declined this recommendation. I hope that in the ministerial reply she will be able to explain how a commitment to raising awareness of the symptoms of cancer generally within the cancer delivery plan will have the desired effect of raising awareness of ovarian cancer. Our final recommendation concerns professional awareness of ovarian cancer. It is imperative that all women can receive timely tests and diagnosis when ovarian cancer is a possibility. Women who present with ovarian cancer symptoms must be able to access the appropriate diagnostic tests quickly so that optimal treatment is available to them. The evidence received was clear about the importance of awareness of ovarian cancer amongst health professionals. In particular, it is crucial that GPs—who, for most people, is the first person they see when they have symptoms that make them unwell—are consistently able to recognise the symptoms of ovarian cancer and appropriately refer people for diagnostic tests. What we don’t want is GPs not knowing about it, sending them back and telling them to come back in three months’ time if they haven’t got any better, because that will mean the time they have to wait to be dealt with will increase and their chances of survival will decrease. We were pleased to hear that recent work has been carried out in relation to GP awareness in Wales, and the Minister spoke of her intention to continue to improve the understanding of symptoms and early diagnosis of ovarian cancer by clinicians. The committee noted that this is already a priority area in GP contracts and that GPs were required to review every case of ovarian cancer detected in 2015 in order to help learn lessons in relation to diagnosis and referral. We recommended that the Government continues this work and supports primary care cancer leads to use the learning from this review to inform plans in each health board aimed at improving early diagnosis. I’m very glad that the Deputy Minister accepted that recommendation. In conclusion, Llywydd, I’d like to reiterate that the committee fully supports the motivation behind the petition. Whilst the evidence does not currently support the call for national screening of all women, we believe there’s strong evidence of the importance of seeking to develop greater awareness of ovarian cancer amongst the public and health professionals. I hope our report and the debate this afternoon will help contribute in some small way towards this. Finally, I would like to place on record the committee’s thanks to Margaret Hutcheson for using the petitions process to bring this matter to the Assembly’s attention, and for her hard work and enthusiasm throughout the process. I would also like to thank the members of the committee and the staff who helped in our consideration of the petition and the production of our report. If only one woman gets diagnosed early enough to save her life, it will be worth while.

Angela Burns

I’m delighted to speak in this debate. I wasn’t a member of the committee at the time, but I have read the report and the Government response, and I have spoken to a number of organisations who’ve brought forward concerns on this matter. I’d like to thank everyone who contributed to this report. I’d like to thank the Chair and his clerking team, and I’d particularly like to thank the petitioner, Margaret Hutcheson, because she used her democratic right to bring before us all a very important matter—very important because the horrifying statistic is that a woman dies every two hours from ovarian cancer in the UK. As Margaret herself said, two of her close friends—both chemotherapy nurses—did not spot the signs of ovarian cancer. So, it just goes to show that it is a very difficult cancer to spot. Many people do describe it as a silent killer, but it does have some very clear symptoms: persistent bloating, persistent stomach pain, difficulty eating, feeling full more quickly, and needing to wee more frequently. So, rather than think of ovarian cancer as a silent killer, I would suggest that it’s a mistress of disguise. Forty-one per cent of women had to visit their GP more than three times before being referred for diagnostic tests, because the symptoms are very hard to identify. They can be very similar to irritable bowel syndrome, or seen as a consequence of menopause. Herein lies one of the sad consequences: if ovarian cancer is caught at stage 1, survival rates are in the order of 90 per cent. I know that the Chair’s made this point, but I do think that’s a really important point to re-emphasise—90 per cent if caught in stage 1. But, by the time a woman reaches stage 3, her survival rate plummets to only 19 per cent. In other words, 81 per cent of all women at stage 3 will die. And that’s one hell of a death sentence. This is more than a sobering statistic, but it’s a world of sorrow for those individuals and for their families, and I think it is very important that we take a look at this. So, my challenge to the Welsh Government—and to you, Minister—is this: in rejecting recommendation 3, how confident are you that the symptoms of ovarian cancer, this mistress of disguise, will become more well-known by both women and the medical community, particularly GPs, because they are our front line? What exactly, may I ask, does your response mean when you say—I’m just going to read from your response, Minister—about the cancer delivery plan: ‘It includes a commitment to raise awareness of the symptoms of cancer. The cancer implementation group will determine the content of this activity based on tumour prevalence and outcomes’? Now, I read that as ‘tumour prevalence’ meaning how many people might have it. Well, I guess not huge numbers, but enough for a woman to die every two hours. But what is very clear about ovarian cancer is once you’ve got it, unless it’s caught quickly, you’re not in for a good ride. So, we know that prevalence. We also know that Wales has the worst survival rate in all of the home nations. The five-year survival rate, Minister, for ovarian cancer in Wales is only 38 per cent. So, as the Chair said, 62 per cent of all women in Wales with ovarian cancer will die within five years. So, I believe it’s imperative that you ensure that the symptoms of ovarian cancer are made very well known to women and the medical community. Minister, would you agree with me that a commitment by you and the Welsh Government to follow the NICE guidelines and ensure that anyone with a 10 per cent risk of carrying on of the BRCA genes is tested? Would that not be a good place to start? Whilst I do understand the pressures on finances, and how very difficult it is for us to make all cancers known to all people, the problem with this particular one is that your chances, once it goes beyond a certain stage, become very slim indeed. There is just a 10 per cent survival rate after five years if you’ve got to stage 3. So, it would be of great importance if you could look at ensuring that ovarian cancer is taken very seriously in terms of its messaging to people. Very simple, women and GPs: there are four or five very strong key symptoms, and if a woman keeps presenting, more than once or twice with that, you must get them tested, and you must enable them to be moved forward, up through the diagnostic path. But you need to tell women that it’s not just having heartburn or having a funny tummy and not feeling well, and you need to make sure that GPs really understand what those symptoms of ovarian cancer are. The way to do that is through public health messaging. Thank you.

Rhun ap Iowerth

Could I thank Margaret Hutcheson for submitting this very important petition? I read the report with great interest and some shock as well, because the petition itself noted the astonishing effect that ovarian cancer has had. We’ve heard some of the figures already: in 2014, 365 women diagnosed and 238 women died of this disease. The percentage of those who failed to survive is incredibly high as well, so I think that we all agree that we need to tackle this situation, change the situation and more people need to be able to survive this very cruel disease. We have lower survival rates than other places, which shows that we should be learning from others as well. The petition does call for a national screening programme to be introduced, and the committee’s report does note that this may not be the most effective way of improving diagnosis and finding it early at present. So, until we have a more accurate test, I do think that we should focus on other ways of having an early diagnosis, while at the same time look proactively for the latest evidence on the effectiveness of screening. The first critical thing to do is to increase awareness of symptoms, and increase awareness of symptoms among women themselves, but also among GPs. The rates of general awareness are still very low, and that’s what recommendation 3 by the committee was. Strangely, it was refused by the Government; I don’t really understand the reasons why, if the Government is intending to do this anyway as part of their cancer plan, then why reject this recommendation? I think there is an interesting point to be made here about the conflict between, on the one hand, the messages that we are giving here about ensuring that people do go to their GPs early enough when the symptoms emerge, so that serious illnesses are captured early and that treatments can be effective, and then, on the other hand, the messages that you should only go to the GP if things are serious, and that you should instead perhaps be looking to using a pharmacy or practice nurse, or rather see how things go. And it is a balance between GPs having to deal with those who are okay but who are concerned, while making sure that those who are not healthy but who are not concerned are encouraged to try and go and see a GP at an earlier stage, and have a better opportunity to survive. The second thing that we should do is bring waiting times for diagnostic tests down when someone is brave enough to go to their GP. Once again, the model that we see in Denmark of diagnostic centres or multidisciplinary centres is worth looking at as something that could contribute to increasing capacity in order to allow this to happen. So, just to close, I’ll repeat the approval of Plaid Cymru of the messages in the report. It is a shame that not all of us in the Chamber can agree with the three recommendations, but as I said at the outset, I’m pleased that this has been submitted by Margaret Hutcheson as an issue for the Petitions Committee to discuss.

Hannah Blythyn

It’s timely that we’re having this debate today, as Ovarian Cancer Awareness Month for this year draws to a close. Indeed, as others have said, raising awareness is absolutely key when it comes to tackling the UK’s deadliest gynaecological cancer. I want to also thank the petitioner, Margaret Hutcheson. Whilst the recommendations might not fully fulfil what she was asking for initially, I think the fact that her action has got it on the agenda of the Assembly today cannot be underestimated. What a significant step forward that is in raising awareness and enabling us to step up and talk about the symptoms of ovarian cancer. In my 90-second debate on this issue, just a couple of weeks ago, I touched on how most of us here will know somebody who’s had this cancer, or have a friend or family member, and that is the case for me. So, tackling ovarian cancer, to me, is not just a priority for me as a politician but it’s a priority driven by personal experience. The best way today that we can work together to beat ovarian cancer is to be aware of the facts, to be aware of the symptoms and to be aware of your own family history. In fact, one in four women believe that having a smear test means that they’re covered for all gynaecological cancers. Whilst we know smear tests are important and they shouldn’t be feared and they definitely shouldn’t be forfeited, it’s important to recognise that they do not detect ovarian cancer. Currently, it remains that the best way to detect ovarian cancer is for women and health practitioners alike, as others have said, to know and to act upon the main symptoms of this cancer. On the latter, it’s crucial for GPs and other healthcare professionals to have an enhanced understanding of the symptoms of ovarian cancer in order to increase the chances of early detection. As my colleague Angela Burns said, the symptoms are often misdiagnosed at the first point of contact as things like IBS or things associated with the menopause. In my mum’s case, it was initially thought that she had gallstones. Some of the symptoms that previously presented themselves literally became chronic virtually overnight. It presented in March and, whilst it wasn’t an easy diagnosis, she did have surgery in June. The key to that is awareness of symptoms and for women going to the doctor to be able to articulate, ‘Actually, I’m concerned it could be this’, and to be able to feel confident to get the doctor to make that assessment to get that early diagnosis. It would be remiss of me not to say today that I’m forever eternally grateful, and my family is, to the wonderful NHS and the amazing team of specialists in north Wales, including the oncologist who said to my mum, ‘Although the cancer is aggressive, we’re just going to get on with this’. This was in 2009 and, prior to that, she had breast cancer in 2005. I should probably point out at this point that my mum is part of that, shall we say, select group of avid viewers of Senedd.tv—hopefully she’s watching today. But, she probably won’t be commenting on the content of my contribution, she’ll probably be telling her iPad that I’m talking too quickly or watching to see if I’ve pinched one of her items of jewellery again.

Hannah Blythyn

Thank you. So, early detection of ovarian cancer is lifesaving and knowing the symptoms does make a difference, but this difficulty in diagnosis has left ovarian cancer to be called the silent killer. I think we need to rebuff that, because it isn’t silent—as we’ve said, there are symptoms, and it’s crucial that in this debate we speak up and that going forward we use that as a tool to tackle this cruel cancer. I know that others have said the symptoms, but I am going to relay them, because the more we say it and the more we share it, the more the message gets out there. So, the four main symptoms to watch out for are: persistent stomach pain, persistent bloating, finding it difficult to eat or feeling full quickly and needing to urinate more often. Also—I touched on this at the outset—linked to this raising awareness, it’s important for people to be aware of their own family history. Around 20 per cent of ovarian cancer cases are caused by genetic mutations, including the BRCA gene mutation. If a women is found to carry a faulty BRCA gene, her risk of developing ovarian cancer increases from one in 54 to one in two, and it also increases the risk of developing breast cancer. I know that Ovarian Cancer Action is campaigning for BRCA to be used as a cancer prevention strategy, stating that to be aware of their BRCA status gives people the power to take action to prevent cancer. However, I’m all too aware that taking steps to be tested for BRCA is not a decision that anybody would take lightly, and it’s often one that will be fraught with fear and anxiety about the important, although potentially life changing, decisions that would be made as a consequence of having that test. To me, that links back to the value—the need—of increasing awareness and making people aware that they may have the BRCA gene, but making sure that support is there for people in an accessible and adequate way. There’s clear consensus, to wrap up, from the leading cancer charities, including Ovarian Cancer Action and Cancer Research UK, that the introduction of a national screening programme for ovarian cancer is not recommended, based on the current available evidence. Ninety per cent of women are not aware of these four main symptoms of ovarian cancer, but whilst women diagnosed at stage 1 have a 90 per cent survival rate, awareness is the best ammunition we currently have in early diagnosis and treatment of ovarian cancer. The recommendations of the Petitions Committee, in terms of proposing that the Welsh Government continues to work with GPs and other health professionals to assure appropriate tests and early diagnosis, and, likewise, to do more to improve awareness of ovarian cancer over a prolonged period of time, really are our best line of defence in increasing early detection and diagnosis of ovarian cancer. So, let’s make sure that today’s debate fires the starting gun to do just that.

Caroline Jones

I’d like to thank the Petitions Committee for their report and the work they undertook to consider this petition. Ovarian cancer strikes around 20 women each day in the UK and sadly accounts for around 248 deaths in Wales each year. We all know that in the case of cancer, early diagnosis equates to better chances of survival. If diagnosed in the early stages of ovarian cancer, 90 per cent survive for five years or more. However, if diagnosed in the later stage, only three in 100 survive beyond five years. It is, therefore, imperative that we do all we can to diagnose ovarian cancer sooner. Unfortunately, there is not yet a reliable screening test for ovarian cancer. The UK collaborative trial on ovarian cancer undertook a 14-year study looking at the benefits of the CA125 blood test and ultrasound probes to detect the early signs of ovarian cancer. Unfortunately, the results did not find any conclusive evidence that this type of screening would reduce ovarian cancer deaths. In fact, the trial found that there were a large number of false positives. They found that for every three women who had surgery to check for ovarian cancer based on their blood test, two of them turned out not to have cancer. Scaling that up over the whole population adds up to a lot of unnecessary surgery. This surgery isn’t a trivial procedure—like any surgery it carries significant risks. Around three out of every 100 women who had surgery also had major complications as a result—this included infections or damage to other organs. We therefore need to find a better way of screening—a more reliable method—before we roll out screening to the whole population. The Petitions Committee recommend that the Welsh Government keeps the screening programme for ovarian cancer under review and I wholeheartedly support this recommendation. I am pleased that the Cabinet Secretary has accepted it. I would like us to go further. We should be actively pushing for further research into ways to screen for ovarian cancer. Aside from screening, it is important that all health professionals recognise the early signs and symptoms of ovarian cancer, as this is the key to providing early diagnosis and treatment. Over 40 per cent of women with ovarian cancer have had to visit their GP on numerous occasions to be referred for further tests. I, therefore, welcome the committee’s second recommendation and the Cabinet Secretary’s acceptance of it. However, I was deeply disappointed that the Cabinet Secretary has rejected the committee’s third recommendation, which calls on the Welsh Government to improve public awareness of ovarian cancer. Ovarian cancer is often called the silent killer as only one in four women can name the symptoms, such as persistent bloating, persistent stomach pain, difficulty eating and needing to urinate more frequently. A quarter of women also believe, incorrectly, that a smear test will detect ovarian cancer. If women do not recognise the signs and symptoms of this killer disease, how can they possible hope to seek treatment? I, therefore, ask the Cabinet Secretary to please reconsider. Public awareness of this disease can genuinely save lives, so until we get better screening for ovarian cancer, it is our best hope to save women from dying from this terrible disease. Diolch yn Fawr.

Julie Morgan

I’m not a member of the committee but I’m very pleased to have the opportunity to take part in this debate. I’d like to congratulate the committee on its report, and particularly congratulate Margaret Hutcheson and her friends for highlighting ovarian cancer, and, as Hannah Blythyn said, for managing to get it debated here on the floor of the Chamber. So, I think that’s a great step forward in itself. I’m sure many of you attended the Cancer Patient Voices event earlier this year, back in January. It was the second event of its kind. The first event, the first of its kind in Wales, was organised by Annie Mulholland. Some of you may remember, or may even have known Annie, who was a great campaigner and who appeared frequently in the media and on television drawing attention to issues related to ovarian cancer. She set up the Cancer Patient Voices event to bring together people suffering from all different kinds of cancer. Annie herself was diagnosed with ovarian cancer in 2011 and, sadly, died in May 2016. But I’d like to pay tribute to the attention and the highlighting that she did at that time. I know she was a member of the cancer cross-party group, which I chair, and she had a mission to highlight and bring to everyone’s attention issues related to cancer. I congratulate Margaret Hutcheson on bringing this petition and I acknowledge the very strong voices there are on this issue. Many constituents have come to see me asking for screening, asking for the Welsh Government to bring in screening and, at the Voices event earlier this year, there was a persistent call from women and men for a screening programme. I know that the petitioners will be disappointed by the recommendations, because I know that Margaret Hutcheson, herself a retired palliative care nurse, wants yearly screening for ovarian cancer using the CA125 blood test. But my understanding, and the evidence outlined in the Petitions Committee report, shows the danger of false positive results with this test and concludes that however much we may want it to work, there is no evidence to support the introduction of a population screening programme using the CA125 blood test, or an alternative method, at this moment in time. I think we have to accept this decision, which is based on evidence, and so I think the Petitions Committee are right in their recommendations. But I do think it’s absolutely essential that we keep the possibility of screening under review, because science is changing all the time and there are huge advances all the time. So, let’s keep this under review so that we know that if there ever is the opportunity for tackling this disease, we will be in a position to do it. I agree with Angela Burns and Hannah Blythyn that this should not be called the silent killer, because that implies there is nothing you can do about it. From all the debate that we’ve heard today, there is much that you can do about it. You can recognise the symptoms, GPs can be helped in training with awareness of these issues and the very fact that it has come here today and is being debated, I think, is very, very important. There was an awareness-raising campaign undertaken by Velindre Cancer Centre in early 2016 and I do welcome that. I welcome the fact that they worked together with Target Ovarian Cancer to distribute GP information packs and to try to make GPs more aware of the symptoms and recognise—because, as I think everyone said today, early diagnosis is the absolute key. I do think that we need more of these information campaigns and campaigns also to highlight the symptoms to women themselves, which, again, people here have mentioned today. I don’t think we can be too high profile about this issue. It shouldn’t be a one-off awareness-raising campaign, because we know that early diagnosis can cure. So, I’d like to really conclude by saying well done to all those women who’ve made such efforts to highlight this campaign and thank the Petitions Committee for its response.

Ann Jones

Thank you very much. I now call on the Minister for Social Services and Public Health, Rebecca Evans.

Rebecca Evans

Thank you. I’d like to begin by joining the other speakers in thanking the petitioners who raised this important issue, and also put on record my thanks to the Petitions Committee for its thoughtful consideration of the matter and its report and recommendations, and also all the speakers in the debate for their thoughtful and powerful contributions. Ovarian cancer can affect women at any age but it’s more common amongst women who’ve been through the menopause and, as we’ve heard in the debate, the symptoms of ovarian cancer can be similar to those of other conditions and therefore it can be difficult to diagnose. This is an important issue for women in Wales and I hope the committee’s consideration of this issue and our debate today will help raise the profile of ovarian cancer. Population screening is the process of identifying healthy people who may be at an increased risk of a disease or condition, or identifying the presence of an as-yet-undiagnosed disease or condition in a person. We then can respond through the provision of information, further tests or treatment. Screening, therefore, has the potential to identify conditions at an early and more easily treatable stage. Screening can save lives, improve your quality of life and reduce the need for costly interventions and treatments at a more advanced stage. However, it’s important to understand what screening can and cannot do. Screening can save lives by identifying risks early, but it can also cause harm by identifying some factors that will never develop into a serious condition. Screening also doesn’t guarantee protection. Some people may receive a low-risk result from screening but this may not prevent them from developing the condition at a later date. Population screening should only be offered where there is robust, high-quality evidence that it will do more good than harm and be cost-effective within the overall NHS budget. Where such evidence exists, the Welsh Government invests in screening programmes. I’d like to reassure you that all of our population-based, pre-symptomatic screening programmes, which range from antenatal screening of pregnant women to screening older men for aneurisms, are developed and delivered using the best available evidence and are subject to regular review. The UK National Screening Committee provide independent, expert advice on population-based screening to all UK Ministers. The committee brings academic rigour and authority to what is an extremely complex area and is a world leader in its field. The screening programmes in the UK are amongst the most respected in the world. The UK National Screening Committee has recently considered the evidence from a large UK trial into ovarian cancer screening. The evidence to date is not conclusive and the expert committee has not currently recommended screening for ovarian cancer. The UK collaborative trial of ovarian cancer screening and leading cancer charities agree that the evidence does not yet show screening can reduce deaths from ovarian cancer. As we’ve heard during the debate, the study did find that, for every ovarian cancer detected by screening, a number of women had unnecessary surgery, and around 3 per cent of women who had unnecessary surgery had a major complication. These and other harms, such as raised anxiety levels, will need to be carefully considered should further evidence support screening. The UK collaborative trial of ovarian cancer screening is ongoing and I understand that further evidence will be available in 2019. The UK National Screening Committee will review its recommendation when this evidence becomes available. The Welsh Government will keep the potential for a national population screening programme for ovarian cancer under review and we continue to be advised by the UK expert advisory committee on this matter. We recognise that we need to do more to identify cancers sooner. Our NHS must respond appropriately to women presenting with symptoms that require investigation. The NHS in Wales is implementing the new National Institute for Health and Care Excellence suspected cancer referral guidelines, which have lowered the threshold of suspicion and are specifically aimed at encouraging more referrals. Our current GP contract requires that each surgery reviews cases of ovarian cancer to identify opportunities to improve the care given to women. And there is now a GP lead in every health board to help primary care better identify, refer and support people affected by cancer. We’ll continue to work with the NHS across Wales to improve the early detection of ovarian cancer and improve swift access to the latest evidence-based treatment. It’s important that people are able to recognise symptoms and feel confident in contacting their GP. This is not just a challenge for ovarian cancer, but for a number of cancers with non-specific symptoms. An awareness campaign for ovarian cancer has recently been undertaken. The campaign was launched in March 2016 and included the distribution of leaflets and posters to all GP surgeries in Wales. This activity, together with the valued work of cancer charities and campaigners, has helped raise awareness of ovarian cancer across Wales. Our cancer delivery plan, which was launched in November 2016, includes a commitment to raise awareness of the symptoms of cancer. It is imperative that we’re informed by the experts as to which cancers to target and how. Quite simply, as a layperson, I don’t want to pre-empt that, and that is the reasoning behind our approach to recommendation 3. The cancer implementation group will lead on the development of future awareness-raising activity. They will consider site-specific awareness campaigns, but will also be considering the benefits of a more generic awareness-raising campaign. Proposals for a rolling awareness campaign through to 2020 are due later this year. I’d like to close by thanking the Petitions Committee for bringing this debate to the floor of the Senedd today and I’m sure the committee’s scrutiny of this issue and this debate will help further raise awareness of ovarian cancer across Wales. Diolch yn fawr.

Ann Jones

Thank you very much. I call on the Chair of the Petitions Committee, Mike Hedges, to reply to the debate.

Mike Hedges

Thank you, Deputy Presiding Officer. First of all, can I thank all the Members who spoke today? And can I say something I rarely say? I agreed with every word that every one of you said. So, I could sit down now and say, ‘I agree with everything you’ve said’, but I think, perhaps, I’d better say a bit more. Can I also thank the Minister for her reply? Most of all—and I think everybody would agree—I’d like to thank Margaret Hutcheson for getting the petition and bringing this before us. Angela Burns: a woman dies every two hours in the UK. That means two have died since we started this meeting. It’s a difficult cancer to spot, and I loved your description, ‘the mistress of disguise’—I wish I’d thought of it. It can be confused with irritable bowel syndrome or the menopause, and, really, you catch it early and people live; you catch it late and people die. Rhun ap Iorwerth: we need to change the structure and improve survival rates. I think everybody has said that. We want people to be found early and to survive. We need to increase awareness among women and GPs. To paraphrase you, we do have the problem in health all the time of the worried well as opposed to the unworried ill. Hannah Blythyn, can I just thank you for showing the courage and raising a family issue? It must’ve been very difficult, but can I thank you for that, because I think, when people bring personal experiences to these debates, it adds a great deal more than those of us who speak in the third person? Ovarian Cancer Awareness Month—very important. I didn’t know that it is the UK’s most deadly gynaecological cancer. I think it’s something that we do need to get out. We need to raise awareness. People need to know that a smear test does not detect it, and it’s crucial that GPs have an enhanced understanding. Caroline Jones, again, talked about early diagnosis and the problem of false positives from screening—that is one of the reasons why we didn’t support screening. We need a reliable screening method, and the sooner we get that the better. Julie Morgan mentioned Annie Mulholland. Many of us knew her mission to highlight cancer and ovarian cancer. The evidence that the CA125 test does not work, that’s why the committee did not recommend it, but we do need early diagnosis. We need people to go to their GPs, we need the GPs to recognise it, not to say, ‘Well, it’s probably irritable bowel syndrome’, or, ‘It’s your menopause, come back in three months’ time.’ But, a couple of these three months are reducing the chances of survival dramatically. Minister, you’re absolutely right, screening causes harm and worry. If you’re screening people and you get false positives, people worry. I’ve been with a family member who, thankfully, didn’t have anything, to a cancer screening, and I’ll tell you what, I actually could have read the paper upside down and I wouldn’t have noticed I was doing so. It brings a huge amount of worry. That is why the committee did not recommend bringing in screening at this time. It is a silent killer; those were not my words, those were the words of the petitioner, but it is something we desperately need to get out there. Can I just say, I still am, and I’m sure the rest of the committee will be and maybe other Members are, disappointed that the proposal that we try and get it promoted, we try and get greater understanding among GPs and patients of what it is was not accepted by the Minster? So, can I, as a plea, ask the Minister to think again about it? It really is important that we get out there and let people know. As I say, two women will have died this afternoon since we met. There are two families who are now in mourning because of it. The chances are they were caught late. If they had been caught early, those families would now be going through ordinary family life. That’s the bit that hits home for me, I don’t know if it does to others, that we are making a decision. If you catch it early, then people will live, and if you catch it late—. I think it was Angela Burns who said you’ve got a one in 10 chance of dying if it’s caught very early, and a one in 10 chances of surviving if it’s caught very late. That’s the difference. There’s a death sentence if we get it wrong. A plea to the Minister to reconsider, again, getting more information out there and getting more people to realise how important it is that if they’ve got any of these symptoms, to get there and for GPs to treat it seriously. Thank you.

Ann Jones

Thank you very much. The proposal is to note the committee’s report. Does any Member object? No. Therefore the motion is agreed in accordance with Standing Order 12.36.