The next item is item 8. 

The debate on petition P-06-1294, 'Don't leave metastatic breast cancer patients in Wales behind'. I'm aware that the petitioner is in the Senedd; I'd like to welcome her, and she will be listening carefully to the debate. 

I call on the Chair of the committee to move the motion, Jack Sargeant. 

Motion NDM8103 Jack Sargeant

To propose that the Senedd:

Notes the petition P-06-1294, 'Don't leave metastatic breast cancer patients in Wales behind', which received 14,106 signatures.

Motion moved.

Diolch yn fawr, Deputy Presiding Officer. 

On behalf of the Petitions Committee, thank you for the opportunity to bring this important debate forward on the petition, 

P-06-1294, 'Don't leave metastatic breast cancer patients in Wales behind’ which received 14,106 signatures. 

Deputy Presiding Officer, Members will be aware that it was Secondary Breast Cancer Awareness Day last Thursday. The day highlights that the way we diagnose, the way we treat, the way we support and the way we care for secondary breast cancer has been too slow for too long. I believe this debate today can make an important contribution to highlighting some of the challenges we face here in Wales. According to an evaluation of support and care for patients diagnosed with metastatic breast cancer in 2019, there are 2,786 new breast cancers diagnosed each year, with 612 related deaths in Wales each year—612, Deputy Presiding Officer. Figures from Public Health England are stating that breast cancer is now the leading cause of death for women between 35 and 64 in the UK. This petition calls for change. The petition reads as follows:

'People living with metastatic breast cancer (MBC) in Wales are being badly let down by the system. Currently, Wales has just one dedicated secondary breast cancer clinical nurse specialist (CNS), a situation that leaves potentially hundreds of people without adequate support. We need to know how many people are living with MBC to improve services. And we want improve quality of life outcomes by raising awareness of MBC red flag symptoms.'

Deputy Presiding Officer, this petition was submitted by Tassia Haines, who is one of a number of patients, campaigners and supporters here this afternoon, watching in the public gallery, and I would like to extend my welcome to this Senedd Chamber. I had the privilege of meeting Tassia on Monday, and I want to pay tribute to the dedication and bravery that she has shown in raising awareness of this devastating condition, and to devoting so much of her time to campaign for improvements that will only benefit others.

Now, I know that the Deputy Presiding Officer, Dai Rees, shares my comments about Tassia, as he has worked closely with her in his own role as Member of the Senedd for Aberavon. As Tassia says, in her open letter to the Minister for Health and Social Services, and I quote, Deputy Presiding Officer:

'Unfortunately, I have been living with metastatic breast cancer (MBC) for over two years even though I am just thirty years old. I am receiving treatment from two health boards and have met people undergoing treatment from all over Wales, and regretfully I must inform you, Wales is failing when it comes to meeting the needs of MBC patients, according to us - The people dying

from the disease and the close people supporting those with MBC.'

Tassia’s petition, and the wider campaign, calls for three things. First, better data collection of people living in Wales with incurable secondary breast cancer. Currently, the Cancer Network Information System Cymru does not report the number of patients diagnosed with the metastatic disease. This campaign is asking for a central Welsh system that will collect the details of all secondary breast cancer patients in the country. Secondly, better awareness of the red flag symptoms of metastatic breast cancer. There is a lack of understanding in primary breast cancer patients in how to tell that a cancer has spread beyond the breast, and this campaign wants primary patients and GPs to be given more details on how to spot these red flag symptoms to improve earlier diagnosis. And thirdly and importantly, Deputy Presiding Officer, better patient care. The campaign wants all Welsh patients to have access to a specially trained metastatic breast cancer nurse, whose workload is focused only on MBC patients, which campaigners feel can be cost effective for the NHS by preventing hospital admissions, for example.

On Monday, I didn't just meet Tassia, I had the privilege of meeting other patients and nurses, who emphasised that we must understand, Members—we must understand that primary and secondary breast cancer are different, and therefore, they require different healthcare provision. They emphasised that individuals need support at the most difficult time of their lives when diagnosed with a terminal illness, and they require individually tailored support throughout ongoing treatment through to palliative care.

Now, I know that the Minister is committed to driving improvements in cancer care in Wales. The Welsh Government’s new quality standard, published in May this year, sets out what good care will look like in the future. Later this year, we expect to see the publication of an NHS-led cancer action plan, giving further detail to that vision of patient-led care for cancer sufferers. But with all that in mind, Deputy Presiding Officer, I do look forward to hearing from fellow colleagues of the Petitions Committee, fellow Members, and, of course, from the health Minister, to hear the latest developments in cancer care, particularly responding to the three main calls of the petition, and how we can help the people who need that support most. Diolch yn fawr.

Diolch to the Business Committee for the urgency, enabling this debate to take place following last week's Petitions Committee meeting. I know that Tassia is here today, and I'd like to thank her and congratulate her on her efforts to raise awareness of metastatic breast cancer.

Tassia, I can't begin to imagine how difficult this campaign has been for you. You're an inspiration to us all, and your voice will speak for the 35,000 people living with metastatic breast cancer across the UK. End-of-life cancer care cannot be based on assumptions. People in Wales are dying now. It isn't possible to plan care or create pathways without solid, reliable data. If we are to support people living in Wales with metastatic breast cancer, we need to know exactly how many people are being treated. Many of us have stood in this Chamber on more than one occasion calling to combat the inequalities that exist within women's health. It's a fact that the leading cause of death in women aged between 35 and 64 in the UK is metastatic breast cancer. Access to a clinical nurse specialist is the main point of consistent contact between different health professionals. For people suffering with metastatic breast cancer, this must be seriously considered.

Tassia has shared an open letter, which has been supported by 277 metastatic breast cancer patients, stating that the care needed isn't received. An extract from the letter reads:

'Can you comprehend what it is like to navigate your final months/years between disability, pain and death? And in my case be too sick to pursue a career and have a family, but is not sick enough to die, just yet?'

The truth is, unless we find ourselves in that position, we cannot begin to comprehend what it is like, but what we can do is help raise awareness. Last week, I attended the funeral of a dear friend, Marion Abbott, who sadly passed with metastatic breast cancer. Today and tomorrow, the team at Canolfan Pentre are holding a 'wear it pink' cake sale to raise money and awareness of metastatic breast cancer in the memory of Marion, and to support those who are campaigning, like Tassia. We owe it to them to continue raising awareness, to urgently work towards better data collection, and to seriously consider increasing the number of secondary breast cancer clinical care specialists, who prove invaluable to improve the care and quality of life of people with metastatic breast cancer in Wales. Diolch.

I want to start by saying that the Welsh Conservative group and myself heartily agree with the calls found within this petition, and the fact that so many signatures have been received highlights the strength of feeling there is within Wales of the need to do much more to help those living with metastatic breast cancer. I want to thank Tassia and all those who have signed this petition.

As we've already heard, MBC is the leading cause of death in women aged 35 to 64 in the UK, and much more needs to be done to prevent the postcode lottery in accessing appropriate care. The fact that Wales has just one dedicated secondary breast cancer clinical nurse specialist is contrary to the National Institute for Health and Care Excellence guidelines on key workers for metastatic breast cancer. It's an appalling situation that leaves potentially hundreds of people without adequate support. Moreover, I also think it has a knock-on effect of creating the impression that those in power in Wales do not care for those living with MBC, which I'm sure the Minister will agree is certainly not the case.

From speaking with the petitioners, what struck me the most was that many of them felt that they had had to fight for their diagnosis, and they were continually being fobbed off in the build-up to that diagnosis, and that basic support and information was lacking after it. 

We have discussed the lack of and inconsistent distribution of nurses in the Welsh NHS departments and across health boards many times in this Chamber, and I'm fearful that this petition will fall on deaf ears and will be seen simply as another complaint to add to the list. But, I would urge the Minister to recognise that providing these specialist nurses should be more than just a tick-box exercise. Many people living with MBC are genuinely fearful for their lives every day, and having the correct support can drastically improve outcomes of living with MBC.

This petition is also asking for a national register of those living with MBC, because at present, there's an insufficient understanding of the national picture, which would allow for a more joined-up approach to providing care, and a better measure of the impact of interventions, and I cannot see how, with all the technological tools we have at our disposal, this hasn't already been done. I don't think even cost is an issue—I think it is more about the limitations of our health boards to find the necessary time and expertise to come together and design and implement models of data collection that will be able to provide suitable evidence to inform long-term diagnosis and treatment plans.

Minister, this is where you are asked to intervene. The community of those living with MBC needs your support. They need you to provide impetus to ensure that health boards are not missing easy opportunities to diagnose MBC and allowing those who are suffering to be left behind. Minister, if a national database was created, it would help improve the understanding of MBC amongst the population, and this certainly would help provide better treatment plans, help control and delay certain variants of the disease and relive symptoms, allowing people to live well for as long as possible. I urge everyone here to support the petition, and I urge the Government to implement its recommendations. Thank you.

From the outset, like my fellow colleagues of the Petitions Committee, I wanted to say that Tassia should be proud of her work and proud of her petition. In this job, and in life, to be honest, the people who inspire the most are those we take their experiences of adversity and use them to influence good. Champions are rarely without their own scars. They are the strongest of us and the best of us, and I think if anyone has followed Tassia over the past week or so in the news, or has had the pleasure of meeting her, I don't think her strength could be disputed by anyone. Even today, she's been in the Senedd meeting Members, campaigning right up until this debate.

Tassia herself is living with metastatic breast cancer, and her experiences living with it have driven her to campaign for clear, evidence-based interventions to improve the lives of people living with MBC. People living with MBC in Wales are being badly let down by the system. I have to say it is shocking that we still don't have an accurate, up-to-date figure of how many people are currently living with secondary breast cancer in the UK. The reality is: when you don't know who is alive and for how long, then how do you accurately identify trends? How do you ensure that plans are not based on assumptions? Getting the accurate data is crucial.

There's a very clear frustration amongst those with MBC that they are being told the pathways exist and that care is up to scratch. There seems to be a disconnect between what the Government thinks and what happens on the ground. That has been the driving force of this petition—for the 14,000 people who signed it, for the 277 MBC patients and care givers who signed an open letter highlighting their concerns relating to care, and to the patients who have fed back to Macmillan in surveys.

Currently, Wales has just one dedicated secondary breast cancer clinical nurse specialist. Breast Cancer Now research found that only 68 per cent of respondents in Wales were given the name of a CNS at diagnosis, meaning that thousands do not have access to a CNS and the crucial support they provide. The Welsh Government had previously established a task and finish group to assess the need for secondary breast cancer nurses, but, as yet, no outcomes have been apparent. The Welsh Government need to take urgent action to address the shortfall of CNSs, including providing the investment needed to recruit and train enough CNSs to support people with secondary breast cancer now and in the future. The Welsh Government should also work with health boards to create a full-time secondary breast cancer nurse role in each health board and trust in Wales. Macmillan, I was told today, are funding one of the first in Cwm Taf. Welsh Government needs to follow suit.

The aim of this petition is to improve the quality of life for those who have MBC. Its aims will help repair Wales's failures when it comes to supporting the needs of MBC patients. Buffy quoted Tassia's open letter, and to follow on from that quote from Tassia:

'Now consider the feeling of impending dread as you realise the system you supported your whole life withheld the knowledge from you that could have potentially prevented this from happening and is also making you face your end alone?'

Wales can and should implement these two policies, should implement the aims of this petition, to help improve the quality of life for those living with MBC. This may be Tassia's petition, but she speaks for so many.

When metastatic breast cancer patients tell us they feel let down, we have to recognise that they are being let down, and I want to pay tribute to Tassia and all those who campaign on behalf of patients past and present. But the key thing to remember here is that there will be future patients too, and it's because of them that the campaigners campaign. That is why they petition. That is why they feel let down by the current response of Welsh Government. We know what the asks are, we know the need for those key nurse roles, and we know that Welsh Government has to act now to give future patients the chance for the best treatment possible and the best chance of survival.

I call on the Minister for Health and Social Services, Eluned Morgan.

Diolch yn fawr, Dirprwy Lywydd. Thank you to the Petitions Committee for bringing forward this debate during Breast Cancer Awareness Month. I'd like to welcome the petitioners to the Chamber, Tassia in particular, and others who have campaigned so vigorously on this matter. I'd like to thank the Chair of petitions, Jack Sargeant, and also the chair of the cross-party group on cancer, David Rees, who I know has raised this matter with me on several occasions. And I just want to give notice that I will give some of my speech in Welsh.

This is a really important issue, and I want to reassure all those people in Wales facing a diagnosis of metastatic breast cancer that we most definitely will not leave you behind. Many of those who've already spoken have explained the difficulties people with a diagnosis of metastatic breast cancer will face, so I'm not going to repeat that other than to say that I do understand to a certain extent how difficult a time it is for families in that situation, as my brother's family was one of those affected. I have seen up close the impact it has, not just on the person suffering but also on the wider family.

I wrote to the Petitions Committee quite recently to explain my commitment to improving cancer services and recovering from the impact of the pandemic. In it, I explained that I expect people presenting to the health service with metastatic breast cancer to be supported not only by a multiprofessional team, but also with specialist nursing input as necessary. I also expect everyone presenting with cancer to receive a holistic needs assessment to ensure they have the support that they need. Although it must be up to health boards to deploy their available workforce in line with professional standards and in a way that's equitable for other types of cancer, I'm pleased to report that the south-west Wales cancer centre has introduced specialist nursing for secondary breast cancer, and the north Wales cancer treatment centre is in the process of doing so. Further discussions are under way between the NHS and the third sector about the possibility of posts in the south-east of Wales.

The Wales Cancer Network has done quite a bit of work with the third sector, breast clinicians and health boards to review secondary breast cancer services and patient experience. It has developed a series of recommendations that are being taken now to the network board in November for consideration.

Specialist clinicians in the Wales Cancer Network have also noted how patients should be treated across Wales in a pathway that's agreed at a national level. Next year, we will introduce a national clinical audit of metastatic breast cancer services in order to help improve the care that people receive.

So, just to be clear, the petition calls for better collection of data on metastatic cancer, and I hope that the petitioners will be pleased to hear that I've approved additional funding to introduce a national clinical audit of metastatic breast cancer in Wales. Providing a better service in terms of planning data is one of the reasons why we're investing £11 million in a new cancer information system for Wales.

We have noted our broader approach in the quality statement for cancer. The statement includes an expectation that the cancer workforce will be planned to meet the anticipated demand, particularly in clinical and medical oncology, specialist cancer nurses, physical medicine, radiographers and therapeutics. We are now working with the health service through the planning and accountability processes in order to ensure that they deliver this. And as we come out of the impacts of the pandemic, we must continue to focus on the recovery of cancer services and to reduce any impact on outcomes. More generally, I want to take this opportunity to encourage people to reduce their risk of breast cancer by doing everything they can, by living a healthy life, and encourage women to take part in breast cancer screening. But when women need support and treatment for breast cancer, my intention is that the health service can provide that. Thank you. 

I call on the Chair of the committee to reply to the debate. 

Diolch, Deputy Presiding Officer, and can I extend my thanks to the Minister for responding, and, of course, to members of my committee, Rhun ap Iorwerth, and to Buffy for her contribution and tribute to her close friend as well—very powerful contributions? I also extend my thanks to the Business Committee for bringing forward this urgent debate and the way that it was scheduled. 

Presiding Officer, it's a usual point for me to try to sum up the comments of Members, but today I feel like I have a more important duty to do. I've always tried to say that the Petitions Committee is the people's committee, and I've promised to try and amplify their voices— 

Will the Member give way?

Yes, of course.

Thank you. Would you agree with me that actually the true heroes in our society don't wear capes, they are people like the petitioner, who put these petitions forward to really raise issues like this on a national stage? And do you agree with me there should be more opportunity for issues like this to be debated in the Senedd so everyone across Wales, like the petitioner, can raise these vitally important points to us as the elected officials here?

Can I thank James Evans for that intervention? I fully agree with James, and the point that I will try to make now is that it's not the likes of us, James, in suits sitting in this Chamber who make real change, it's people like Tassia. Tassia was gracious enough, Minister, to provide me with some thoughts on the letter you mentioned you sent to me on 14 October: with regard to pathways, the Welsh Government do have a series of optimised pathways, but there are concerns that there is no specific pathway for metastatic breast cancer, and we should be looking to address that. In terms of specialised nursing, I think we should be mindful—and I read the words of Tassia here—we should be mindful when stating it is not the Welsh Government's role to specify which conditions should benefit from dedicated specialist nursing support, because this is exactly what we do with other conditions.

Just briefly touching on the audit, I do think it is welcome that the audit has been announced, and the £11 million that you have announced today in the Chamber, but there will be some frustrations I know, from conversations I've had with campaigners, that it has taken perhaps too long.

I know I'm running out of time, so I will end with this, Presiding Officer: 277 metastatic breast cancer patients and care givers in Wales have signed Tassia's open letter, which we've all heard and agrees with the petition. Tassia and the other 14,105 people have signed a petition to do better. In my own words now, Presiding Officer, these statistics should be ringing in all of our ears around the Chamber, and of everyone involved in delivering services, the Minister and the wider Welsh Government and, of course, our health boards, who we all should be holding to account. Diolch yn fawr.

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

Motion agreed in accordance with Standing Order 12.36.