Devolved Nations Parliamentary Questions

Written Question
Asked by: Andrew RT Davies

When will the all-Wales medical genomics service be able to sequence glioblastoma brain tumours, so that patients do not have to go via Genomics England?

Answered on: 21 November 2024
Answered by: Answered by Cabinet Secretary for Health and Social Care

The All Wales Medical Genomics Service is validating a somatic whole genome sequencing service for glioblastoma brain tumours, with a view to be in readiness to provide the service in Wales by the end of 2025-26.

Welsh Parliament - Debates

Y Dirprwy Lywydd / The Deputy Presiding Officer

Plaid Cymru spokesperson, Mabon ap Gwynfor.

Mabon ap Gwynfor

Diolch yn fawr iawn, Dirprwy Lywydd. This month is Brain Tumour Awareness Month. I'd like to pay tribute to Brain Tumour Research for their sterling work in this area and for their highly informative stall in Y Farchnad yesterday. They rightly highlighted that brain tumours are the biggest cancer killer of children and adults under the age of 40 and that research into these conditions is underfunded and suffers from a lack of policy prioritisation more generally.

This is especially apparent when it comes to accessing clinical trials in Wales, which can provide a vital source of hope for patients. Part of the problem simply relates to the acute paucity of trials based here in Wales, resulting in those who have the means travelling, often long distances, to participate in trials. This is compounded by low public awareness of the few trials that are held here, despite a strong appetite amongst patients to participate.

Could you explain, Cabinet Secretary, whether the Welsh Government has a strategy to boost clinical trials held in Wales? What are you doing in terms of outreach work to enhance awareness in the meantime? Would establishing a one-stop digital portal where patients can access the availability of such trials and register their interest in good time be an option worth exploring?

Jeremy Miles

The Member asks an important question. On a recent visit that I was able to make with Julie Morgan to the Velindre Cancer Centre, I was able to discuss with them the work that they do in relation to trials in Wales, but also participating and leading on trials that have an impact across the UK and indeed globally. It is important that we’re able to make sure that we bring all our resources as a health service in Wales to bear to support trials and to lead those trials whenever we possibly can do that.

The Welsh Government, via Health and Care ResearchWales, does already facilitate research trial options for individuals in Wales in a range of areas. There is, in fact, a Health and Care ResearchWales delivery hub that provides national-level support so that we can set up effectively studies so they provide opportunities for patients to take part and to do that as quickly as possible. The hub also provides a horizon-scanning function for all studies that are open across the UK, because where there are conditions that may not be particularly common, those trials may be in other parts of the UK.

I think that joined-up approach is really important, making sure that Wales is playing its part in making sure trials are provided and led from Wales, whenever we can do that, whenever we’ve got the expertise and skill set to do that, but also making sure that UK-wide set of trials is accessible is obviously important.

Y Llywydd / The Llywydd

Which allows us to move on to the short debate under item 10. Before I call on Peter Fox, I will ask Members to leave the Chamber quietly.
If Members who are leaving can do so quickly and quietly, that would be appreciated, and I'll call Peter Fox to introduce his short debate.

Peter Fox MS

Diolch, Llywydd. I'm pleased to allow Mark Isherwood, Mike Hedges, Jack Sargeant and Peredur Owen Griffiths to have a minute of my time. The theme of this debate is why Wales needs a strategic plan to prioritise brain tumour research.

Brain tumours are indiscriminate and can strike any one at any age. It's shocking that this disease kills more children and adults under the age of 40 than any other cancer. That's an absolutely shocking statistic. The indiscriminate nature of brain tumours leaves a devastating impact, not just for the sufferer, but also for their loved ones, and I know from personal experience, as others will here, my dear mother was diagnosed with a glioblastoma tumour that grew inside her brain and its tentacles devastated and destroyed that brain with great speed. She was given three to six months and sadly passed away at the age of 81 in 2019. Some may think that that's a good age, but we know that the tumour robbed her of at least 10 or more years; her family lived way into their nineties, almost to 100.

It's a devastating illness that takes few prisoners. It's so hard when somebody you love and care for deeply gets taken before their time, and with little notice. And for all those, like my mum, who have died of brain cancer, we have no choice but to accept that they have passed away. But, I believe it's now incumbent on each and every one of us in this Chamber today to do all we can to highlight this truly dreadful disease with an ultimate aim to prevent or at least reduce the number of people being affected by it. I was shocked to learn that, historically, just 1 per cent of the national spend on cancer research has been allocated to this devastating disease. Let that sink in for a moment: just 1 per cent of funding allocated, despite 16,000 people across the UK of all ages being struck down by this brain cancer every single year. I learnt this shocking fact following a recent meeting here in the Senedd with the Brain Tumour Research charity, and I would like to commend that charity for the sterling work that it does, day in, day out, in raising vital awareness surrounding brain cancer. Charity officials told me that we must, and I quote,
'Recognise a uniquely complex disease with a unique response'.

For those suffering from a brain tumour, time is of the essence. And Minister, that is why I decided to bring forward this short debate. There is so much we can do collaboratively to help halt this growing indiscriminate disease.

Having liaised in depth with the Brain Tumour Research charity, today, I'm calling for support to help achieve seven bold points. No. 1, the Welsh Government should recognise brain tumour research as a critical priority, developing a strategic plan for adequately resourcing and funding discovery, translational and clinical research; No. 2, the Welsh Government must ensure that a robust tissue collection and storage infrastructure is in place across the country; No.3, more action is needed to build research capacity, encouraging and retaining talent through fellowships and research initiatives; No. 4, we must ensure equity of access to clinical trials, and that the clinical trial database is robust and up to date, this will undoubtedly improve clinical trials; No. 5, with some pharmaceutical companies choosing not to pursue the development of brain cancer drugs in the UK, the Welsh Government needs to simplify the regulatory process to encourage investment for the longer time periods necessary to develop and deliver new brain tumour drugs; No. 6, funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours have remained unchanged for decades, leading to frustrated families obviously seeking costly and unproven, often, treatment abroad; and No. 7, a ministerial meeting is vitally needed between Welsh Government Ministers, the Brain Tumour Research charity, Welsh brain tumour campaigners, and brain tumour researchers based in Wales, to discuss how to improve outcomes for present and future brain tumour patients and their families.

The mission of these seven points is to raise awareness and increase funding for vital research. With brain tumours killing more women under 35 than breast cancer, and killing more men under 70 than prostate cancer, the time for inaction is over. Our next actions could make a huge difference to those diagnosed and their families. Thank you.

Mark Isherwood MS

When I attended the Brain Tumour Research awareness event on 25 April, I heard that brain tumours kill more children and adults under the age of 40 than any other cancer, yet historically, just 1 per cent of the national spend on cancer research has been allocated to this devastating disease, and that more must be done by the Welsh Government to build research capacity, encouraging and retaining talent.

Brain cancer is the second leading cause of cancerdeath in the under-40s, second only to leukaemia, with 10.3 per cent of male cancer deaths and 6.7 per cent of female cancer deaths under 40 years of age due to brain and central nervous system tumours. Welsh Government should therefore recognise brain tumour research as a critical priority and agree to a ministerial meeting with Brain Tumour Research, Welsh brain tumour campaigners and brain tumour researchers based in Wales to discuss how best to take forward a pathway to improve options and outcomes for present and future brain tumour patients and their families. Diolch.

Mike Hedgens MS

Can I first of all thank Peter Fox not only for a minute in this debate but for bringing this short debate today? I was very pleased to sponsor an event on 25 April in the Senedd relating to brain tumours. My mother died of a brain tumour, which went undetected until it reached stage 4. She was being treated for a thyroid problem. The symptoms develop, as Peter said, gradually over several months, but only 40 per cent of people diagnosed with malignant brain tumours live for more than a year, and less than 20 per cent for more than five years. Several factors contribute to the high mortality rates of brain cancer, including the aggressive nature of the disease and impediments to treatment, so catching tumours early allows for more treatment options. What we need is more research into brain tumours, how we can stop them developing, and we need GPs to be better trained in identifying the existence of brain tumours and arranging for earlier tests.

Jack Sargeant MS

I'm grateful, Presiding Officer, to follow my colleague Mike Hedges in thanking Peter Fox, not only for a minute of his time, but bringing forward this extremely important debate today.

Llywydd, I'd like to use my time today to talk about Aaron Wharton and his parents, Nicola and Lee Wharton. Tragically, Aaron died of a rare brain tumour in April of this year. During his illness, both Aaron and his parents were, quite simply, incredibly brave, and to quote his parents from our local paper, The Leader:

'We kept life as conventional as possible for Aaron, encouraging him to live the life a "normal" little boy should. I think it was this attitude which saw him not only survive, but thrive.'

Presiding Officer, that takes amazing strength, and we should recognise that. Aaron's parents want to do all they can to raise awareness of brain tumours and to support the research Peter Fox has talked about this evening into treatments. This is an endeavour I fully support and I hope that, in Aaron's memory, the Welsh Government can support too.

Peredur Owen Griffiths MS

Thank you very much, Peter, for giving me the opportunity to contribute to this debate.

Thank you very much for bringing this debate. And I echo a lot of what has been said already.

When I read the topic of this debate last week, it triggered a painful memory. I was transported to a phone call that I had with my brother in December 2014. He'd just come out of a meeting with doctors and my parents to discuss why my mam wasn't well. She had not been right for about 12 months, but had deteriorated, and she was suffering from stroke-like symptoms. During that emotional phone call, he told me she had multiple brain tumours. Over the next six weeks, she deteriorated and passed away peacefully at the end of January, having received excellent palliative care at St David's Hospice in Llandudno. And my thanks will always go out to hospices across Wales for the service and the care they give to patients and families.

By telling this story, I just wanted to highlight three things. We need better early testing, because the prognosis is much better if brain tumours are caught early. We need research specifically for brain tumours, to develop treatments to save lives. And if things don't go well, we need to continue to fund our hospices across Wales, especially children's hospices, to ensure that end-of-life care is the best it can be. Diolch yn fawr.

Y Dirprwy Lywydd / The Deputy Presiding Officer

I call on the Minister for Health and Social Services to reply to the debate. Eluned Morgan.

Eluned Morgan MS
Diolch yn fawr. I want to thank Peter Fox and, actually, many of the Members who clearly have a real personal interest in this particular subject area. And it's been really heartfelt, I think, to hear people's stories, their personal stories, and understandable why they see the need for high-quality cancer research, which is of course vital for patients who are suffering. I think it provides the evidence required to provide the best care, experience and services, and that's why that high-quality cancer research is so vital.

But with so many types of cancer, many of which have very low prevalence rates per country, in order to produce the evidence required to make the necessary improvements in prevention, diagnosis and treatment, we must see cancer research as a global endeavour. With that in mind, it's important that we have a strong cancer research environment in Wales that can contribute to this global endeavour and support the delivery of research within our NHS, across many types of cancer, including brain and central nervous system cancers. And I'd just like to state that we do have to do this in order to make sure we respect the memory of people like Aaron Wharton, who Jack talked about. And it's just heart-wrenching to think about the pain that the parents had to go through in that situation, and heart-wrenching to hear so many of you talk about your mothers and what they've had to suffer.

Over the years, cancer has been the single biggest area of Welsh Government health research investment. Significant Government funding has, for example, built key cancer research infrastructure, such as the Wales Cancer Research Centre and the brain repair and intracranial neurotherapeutics unit. Now, in collaboration, these two groups are currently working to better understand and predict treatment responses in brain tumours, as well as developing novel technology to support Welsh-led first-in-human trials of therapies delivered directly into the brain. Of particular relevance to brain tumour research, Wales also benefits from the world-leading brain imaging centre at Cardiff University, and I was really honoured to go and visit this. Working in collaboration with Velindre, the centre is supporting the development of neuroimaging biomarkers to better understand the response and toxicity of radiotherapy treatment in brain tumours.

We also have significant activity in cancer research in our NHS organisations themselves. Many of you have talked about the need for clinical trials; they are vital in both understanding conditions and offering treatment opportunities to patients. Here in Wales, we have around 10 brain tumour studies open, ranging from trials looking at understanding the causes of brain cancer to trials testing treatments, including radiotherapy and chemotherapy. Ensuring all patients have access to research opportunities is vital. Health and Care Research Wales routinely work closely with clinical teams to offer support to patients who may wish to access trials in specialist centres outside of Wales, so no-one is excluded from opportunities to try new treatments.

Many of you will know that, last year, our research community, in partnership with stakeholders and Health and Care Research Wales, published the first cancer research strategy for Wales. The strategy focuses on six priority research themes where there is recognised Welsh research strength and where Welsh researchers can make the biggest contribution in support of the global research endeavour. And these themes are precision and mechanistic oncology; immuno-oncology; radiotherapy; cancer clinical trials; palliative and supportive oncology; and population and health-based cancer prevention, early diagnosis, primary care and health services research.

Now, this new strategic approach recognises that, as we strive for improvements in prevention, diagnosis and treatment and work hard to address inequality, including gender inequality, we must focus on areas of critical mass and excellence that enable the research we support in Wales to deliver better patient outcomes. As well as Welsh Government funding, via Health and Care Research Wales, for the BRAIN unit and the Welsh Cancer Research Centre, there are other ways in which we're supporting brain cancer research. In partnership with Cancer Research UK, we invest in a UK-wide experimental cancer research centre network, supporting both adult and paediatric Welsh research involvement. And this experimental cancer medicine centre network supports the delivery of early-phase cancer studies between research partners to enable faster and more personalised patient benefit, both for adult and paediatric networks that cover brain cancer trials.

This emphasises the importance of working in partnership, and we must continue with the work of working across national boundaries, universities, health and social care institutions and funders in order to create funding opportunities for Welsh researchers. We must ensure that our researchers are in touch with other quality research groups and increase the opportunities that Welsh patients have to participate in research. Given that we are members of the National Cancer Research Institute, we continue to be committed to looking for opportunities with partners.

Beyond research, our broader approach to improving cancer services and outcomes is set out in the quality statement for cancer, which I published in March 2021. As you know, I put significant focus on improving cancer services and outcomes. One of our six priorities in the NHS planning framework this year is cancer, and we are working closely with NHS services to make improvements. I'm pleased to see that the clinical services for brain cancer in north and south Wales have been given centre of excellence status by the Tessa Jowell Brain Cancer Mission. And this is extremely important, and it shows excellence in the patient treatment and care and research available to the people of Wales.

I'm extremely grateful for the opportunity to discuss this issue with you today to highlight the importance of brain cancer research for us as a Government, and to give you a clear idea of its role in the context of the cancer research strategy and in the broader research environment here in Wales. Thank you.

Y Dirprwy Lywydd / The Deputy Presiding Officer

Thank you, Minister, and all the speakers on this item today.
And on behalf of the cross-party group on cancer, which I chair, thank you, Peter, for bringing this debate forward, because we forget sometimes the different forms of cancer that affect individuals, and this is another one of those forms that sort of gets put by the side as we talk about other things. It's important that we raise the profile of all. Thank you.

That brings us to the end of business for the day.