(1 day, 22 hours ago)
Lords Chamber
Baroness Paul of Shepherd’s Bush
To ask His Majesty’s Government what progress they have made towards appointing a national lead for brain cancer, and what measures are in place to ensure that the role supports improvements in research funding, clinical care, treatment pathways and patient outcomes across the United Kingdom.
My Lords, last month the Government confirmed plans to recruit a national brain tumour lead, with details to follow. As announced by the Prime Minister, the national lead will co-ordinate action and drive forward work to improve outcomes for brain tumour patients, supported by our rare cancer clinical and research leads and working with the National Cancer Board.
Baroness Paul of Shepherd’s Bush (Lab)
My Lords, I congratulate 25 year-old Archie Goodburn, the Commonwealth medallist living with a currently incurable brain tumour, on securing this commitment from the Prime Minister for a clinical lead on this devastating disease. Brain tumours are the biggest cancer killer of children and young people under 40, but despite this, there has been no change or progress in treatment in over 40 years. Does the Minister agree with me that the only way to change outcomes is to accelerate at pace the number and range of clinical trials taking place so that there is a chance of a cure for Archie and other patients?
I know how much the Prime Minister appreciated his meeting with Archie. Indeed, the Prime Minister has acknowledged that enough progress has not been made in this area and committed, as my noble friend said, to a number of actions. I certainly would agree with my noble friend’s view on the importance of clinical trials. I can say to my noble friend that, as we set out in the national cancer plan, we are committed to ensuring that the UK supports new clinical trials for brain cancer and boosting participation in research. Both of these really need to be pushed forward, and we are fast-tracking clinical trial set-up times to 150 days to ensure that more patients can access innovative treatments in our country.
Baroness Pidgeon (LD)
My Lords, I pay tribute to the swimmer, Archie Goodburn, for his courage in campaigning for people affected by brain cancer. I welcome the Government’s commitment to commission an expert review. Will they ensure that it will set out clear, time-bound recommendations, with named bodies responsible for delivery in this area, and that progress against them is published?
We are keen to be open about this. The immediate expert review, which will take just three months, will be led by Professor Anthony Chalmers. It will examine progress since the 2018 brain tumour research report. I look forward to that review being published within three months. A national action plan, which I am sure will refer to the points that the noble Baroness made, will then help us to move discoveries from the laboratory into treatments and clinical care much more quickly. That is where we need to be.
My Lords, what powers will the appointment have, given that 74% of patients are diagnosed in A&E because of delays in diagnosis in primary care? This results in 45% of patients being told in A&E that they have a brain tumour. Even when they have a biopsy, there are inadequate freezing facilities for biopsies to be taken and kept so that personalised medicine can be developed and entered into studies.
On the point about brain tissue freezing, NHS England has, as the noble Baroness may be aware, just completed a freezer capacity gap analysis and is in the process of working with sites to ensure additional capacity. I share her view that identification in an emergency setting is not the best place, although that will sometimes be the case. All this movement is to reduce that incidence.
Baroness Mattinson (Lab)
My Lords, I want to pick up two aspects of this very welcome new appointment. The first is the degree to which the patient’s voice—so often overlooked in this area—will be heard, and that listening to it will be part of the remit. The second is about timing. Can the Minister reassure us on the speediness of the appointment, given that most brain cancer patients have 12 to 18 months to live after diagnosis? They do not have the luxury of time on their side.
I think that has been acknowledged by the Prime Minister in this review being so rapid—delivered within three months—and in the fact that he is taking personal oversight of this work. Again, that is to be welcomed. On the patient’s voice, one of the outcomes from discussions is that the Secretary of State will be convening researchers, clinicians and charities to identify practical ways to increase participation in brain cancer trials. Certainly, the Prime Minister has asked patients, families and charities to work with us to help raise awareness and support participation in clinical trials. For me, the patient’s voice is absolutely critical and I know that it will be at the heart of this.
My Lords, we recognise that outcomes for people with brain tumours and cancers, particularly children, is a survival time of no more than 13 months to five years. Although it is important to do clinical trials using drugs, the problem we have is the blood-brain barrier, which protects the brain from being affected by these drugs. We need to find novel ways of treatment. Some are being researched; for instance, focused ultrasound, micro-RNA treatments and personalised vaccines developed for particular patients for each of their tumours. We need to support these novel ways of finding treatments for brain tumours that do not apply to other diseases.
The noble Lord is right. That is why we have to work so much more quickly to move discoveries from research into treatments and clinical care. That has been sadly lacking, which is why the points that the Prime Minister announced include an accelerated review by the MHRA of the regulatory arrangements for rare disease medicines, known as orphan drugs—I mention that just as one example—that would see that work completed in two years rather than three. We understand the need for speed and acknowledge that we are in a position, sadly, where not enough progress has been made in this area.
My Lords, I too welcome the Government’s commitment to establishing a dedicated national brain cancer lead. My question is about accountability, going back to the question from the noble Baroness, Lady Pidgeon. Will the Government publish a set of measurable objectives for the national lead, particularly for access to treatment and patient outcomes, so that this House and others can assess whether the role is achieving the real progress that patients and families want to see?
I mentioned a national action plan that will be informed by the three-month review, and I confirm that the Government will publish that national action plan. I would expect to see the markers that the noble Baroness and the noble Lord have called for within that.
Baroness Linforth (Lab)
My Lords, I am very pleased that my noble friend Lady Paul asked this Question today as our great friend Baroness McDonagh died of a glioblastoma in 2023. I understand that the NHS is currently running 35 clinical trials related to brain cancer, of which nine are related to glioblastoma, the most aggressive form of brain tumour. Will the Minister either tell the House today or write to me setting out how many patients have been recruited to each of those trials?
I am grateful to my noble friend for honouring the memory of Baroness McDonagh, as other noble Lords have done, and Baroness Jowell. I know that many noble Lords are affected directly or indirectly by this and will be feeling the weight of that as we discuss this matter. To answer my noble friend’s question, the number of glioblastoma patients who have been recruited into specific trials is not centrally held. There is a reason for that. It is because many studies enrol patients who have more than one type of brain cancer, and the data is managed by study teams and sponsors. I also note that some data for commercial trials is considered commercially sensitive. Each trial will have its own inclusion and exclusion criteria that are set out by the study team. Having said that, if there are particular things with which I can assist my noble friend, of course I will be pleased to do so.