Brain Tumours: Research and Treatment

John McDonnell Excerpts

Thursday 8th May 2025 Commons Chamber

[John McDonnell (Hayes and Harlington) (Ind)]

I pay tribute to my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for the way she has pursued this issue seriously and with such emotion. I knew her sister Margaret. She was a Labour party organiser and I knew her for 45 years. She terrified me, to be honest, over the years, but I always admired her commitment to the Labour party and the wider community. I think Margaret would be proud of her sister for the speech she made today and the work that she has done.

I congratulate the Milan group, a women’s group in my constituency—they call themselves a ladies group. It is a group of Asian ladies who came together when one lost their daughter to a brain tumour. They come together every year, including last weekend, when they raised £2,500 for the Brain Tumour Charity. Each year, they get me to do something. This year, I sang in Punjabi, and they had to lock the doors. The previous year, I danced to bhangra music—I tried to purchase the video off them because it was going viral at one point. That raised a large amount of money and shows the commitment in the wider community, as people become more aware of the situation and of the impact of brain tumours, particularly among children. People realise that something must be done.

I want to make a particular point to reinforce what my hon. Friend the Member for Mitcham and Morden has said. There is a desperate need to look at the mechanisms by which new drugs are brought forward and trialled and people can access those trials. I am a member of the all-party parliamentary group on brain tumours, and we met one family who were desperate to get on to a trial of a particular drug, but the drug was being delayed through the mechanisms we have at the moment. I completely understand the processes we have to go through to ensure that a drug is safe and does not cause harm, but there is frustration at how long that takes and the fact that some people who have no other option are not being allowed to access those trials quickly or effectively enough. On that one occasion, we met the drug company, and as an all-party group, I think we did have a beneficial effect in bringing forward the trials and enabling some of the sufferers to access those trials, which we hope will be successful.

One of the most important points my hon. Friend made is that the system just is not working at the moment. It is producing an element of frustration and a lack of confidence in the NHS, which is disappointing. That is because the treatments are not being brought forward quickly enough, the access to the trials is tortuous to say the least, and there does not seem to be any mechanism by which we are co-ordinating better with the pharmaceutical industry and trying to set priorities for it. My hon. Friend mentioned why the industry concentrates on other cancers—because that is where the big profits are—but there has to be some way in which we can incentivise these companies to focus on this range of conditions.

The problem is that there are so many types of brain tumour, and it is difficult to see a company investing a large amount of money when there might be only a limited impact on a small group of patients. However, that is where Government come in. The resourcing of the experimentation, research and trials is so important, and that falls to the state. My hon. Friend has made the point in previous debates and in meetings of our all-party group that, even where the money is there to enable that to happen, it is not getting out there. We have gone through the different organisational structures to investigate what the issue is. I think it is a lack of leadership, and that needs to come from Government.

One of the suggestions I put to the Minister is that there needs to be a conference—it might be a one-off—where we bring everybody together again. The Government have put forward their proposals in the cancer strategy, and they have looked at the pathways, but a new element of zest is needed. We need to bring the pharmaceutical companies in and have an honest discussion about whether the existing structures are working well enough and whether there needs to be some rationalisation, to ensure that we are more effective and speedy in our actions and to investigate what the pharmaceutical companies need in order for research to be undertaken speedily, more effectively and with greater patient access.

As the hon. Member for Edinburgh West (Christine Jardine) said, there is an issue with the funding of individual drugs. If there is to be a rationing process, it is better to be open and transparent about how rational the implementation is across England, Scotland and Wales. At the moment, there seems to be a bit of a postcode lottery in people’s ability to access these individual drugs, in particular when they are being developed for trial.

We need a fresh initiative. I am sure the Government will commit to doing all they can in the coming period, and I hope that more resources will be applied, but unless we get the structures right, the application of those resources will be as frustrating as it is at the moment. As I think the Minister can understand, there has been an expression of frustration at each of our all-party group’s meetings, because the structures are not implementing what the Government themselves want: the wise investment of resources and a more effective link-up with private sector pharmaceutical companies. We need some form of breakthrough event to enable us to move forward more effectively and more rapidly.

Finally, I pay tribute to the various charities, including the Brain Tumour Charity, that are doing such hard work to raise funds and to give hope and comfort to people as their families go through this appalling experience. I thank them for all the support they have given us in the all-party group.

--- Later in debate ---

[John McDonnell]

I pay tribute to Mr and Mrs Atwal in my constituency, who lost their daughter and have been doing fundraising. One of the most effective things they have been doing is ensuring that at local community events there is a stall that provides information about how to access a diagnosis. That has proved to be incredibly effective, as a range of other professionals have picked up on the information. I pay tribute to Mr and Mrs Atwal for their creativity.

[Shockat Adam]

This is about awareness campaigns. People should be aware that 39%—I think—of children unfortunately diagnosed with a brain tumour experience some kind of sight loss or vision changes, and one in three people diagnosed report a problem with their vision that converts into a brain tumour. An eye test cannot detect all brain tumours, but it is a really valuable tool.

Over 112,000 people have signed a petition demanding that brain tumour research is no longer left behind. These are not just signatures; as we have heard from today’s powerful testimonies, they are families, and they are stories of lives cut short and missed chances. We cannot allow that to continue any longer.

Eating Disorder Awareness

John McDonnell Excerpts

Tuesday 1st April 2025 Westminster Hall

[John McDonnell (Hayes and Harlington) (Ind)]

I do not know how to follow that speech. I just want to thank the hon. Member for Camborne and Redruth (Perran Moon). I can understand how tough it was. I also put on record that we all agree that the hon. Member for Bath (Wera Hobhouse) is a star, who has been working on this throughout, and so are Hope Virgo and Dr Agnes Ayton and all the others behind the scenes.

Just to give some hope to hon. Members, we now have a Minister in place with a record of understanding these issues, and with some of the sharpest elbows in Government to get the resources, so I am confident that there will be a move forward. He is aware of the strategy. It is straightforward. There must be input into training not only for health workers, but for teaching staff and education psychologists. We had school nurses come forward with a package that was incredibly effective in raising awareness on the issues, including online safety.

We need community level support services, specialist units and family support. One of the issues raised in the briefings we have circulated from the all-party parliamentary group is the lack of family support. As has been exemplified, when a family member becomes a sufferer of these conditions, the family feel completely isolated and lack support in some of the most challenging situations any family can face. During the discussions around this strategy, there is a need to go into the detail of family support, including the professional advice and community support they can access, to ensure that they do not become isolated.

There is also the issue of financial support. I ask the Minister to look at the consultation on disability benefits and support for people with long-term sickness conditions that is taking place now. Again, it is important that we do everything we possibly can to ensure that sufferers do not lose their benefits as a result of this review. The Government are undertaking consultations, but not on the criteria for the personal independence payment, the points-awarded system. I would be grateful if the Minister could look at that and liaise with Ministers in the Department for Work and Pensions, so that sufferers do not lose the benefits support that they have. Also, some families who are receiving carer’s allowance as a result of the award of PIP to an eating disorder sufferer may be at risk of losing that benefit, but they should not be. We are not even sure what the numbers are, so we would all be extremely grateful to the Minister if he could pay attention to that issue.

Finally, the principle of the all-party group’s work has been to seek a process in Government for co-production of the strategy, in a timetabled way and with funding allocated over the life of this Government. That way, by the time we get to the next election, we can be confident that the strategy has been implemented based on the expertise of those who really know what needs to be done—the sufferers themselves and the families who support them. That process of co-production is as important even as the scale of funding that we need to achieve. Otherwise we will be wasting resources, rather than investing them effectively on the basis of what will work.

--- Later in debate ---

[Stephen Kinnock]

National funding has increased over the years, as the hon. Lady will know. The question is whether that funding channels through to ICBs. The Government’s view is that ICBs are best placed to make decisions as close as possible to the communities that they serve and to target and, if necessary, reallocate funding accordingly. As a Government, we are constantly trying to get the balance right between setting frameworks and targets and ensuring that those are being met, while also ensuring that ICBs are not being micromanaged from the centre. We do not think it is right that people sitting in Whitehall or Westminster micromanage what is going on at a local level. We are absolutely clear that every ICB must meet its targets, while also being clear that it is up to the ICB to take decisions as close as possible to the communities that they serve.

Sadly, we have seen the prevalence of eating disorders in children and young people sharply increase since 2017. In 2023, NHS England published follow-up results to its survey on the mental health of children and young people. The report found that the prevalence of eating disorders in 17 to 19-year-olds rose from 0.8% in 2017 to 12.5% in 2023. Unfortunately, we are also seeing the prevalence of eating disorders rising among adults. The 2019 health survey for England showed that 16% of adults over 16 screened positive for a possible eating disorder. The figures do not mean that the individual had a confirmed eating disorder, but they present a worrying situation that we must address by continuing to promote both awareness and early intervention.

The surge in demand has inevitably made meeting our waiting time targets more challenging. However, our services and clinicians, backed by new funding, are supporting more people than ever before. These services are changing and saving lives. As hon. Members will know, we have kept in place the access and waiting time standard for children and young people who are referred with eating disorder issues. This sets a 95% target for children with urgent cases to begin treatment within one week, and for children with routine cases to start treatment within four weeks.

Figures released last month show that although the number of referrals and demand for services has begun to stabilise during the past year, the number of children entering treatment reached a record high of 2,954 last quarter. This shows that the extra funding is enabling services to begin to meet the extra pressures caused by the pandemic. Similarly, the number of children entering treatment within the target time has reached a record high. Of the 2,954 children entering treatment last quarter, 2,414 were able to access that treatment within the one-week urgent target or the four-week routine target—a rate 81.7%. That is the highest figure recorded since NHS England began collecting that data in 2021.

However, we recognise that there is still far more to be done to ensure that patients with eating disorders can access treatment at the right time. The hon. Member for Bath rightly focused the debate on the importance of awareness. Raising awareness of eating disorders is the first step towards early intervention to prevent the devastating impacts that eating disorders can have on people’s lives. To support this, NHS England is currently refreshing guidance on children and young people’s eating disorders.

The refreshed guidance will highlight the importance of awareness and early recognition of eating disorders in schools, colleges, primary care and broader children and young people’s mental health services. A number of colleagues asked when that guidance will be published; my officials are working hard with specialists on that, and it will be published later this year.

The existing mental health support teams, supplemented by the specialist mental health professionals that we will be providing access to in every school in England, will support school staff to raise awareness and identify children and young people showing potential early signs of an eating disorder. Through these interventions, children and young people can be given early support and help to address problems before they escalate.

Community-based early support hubs for children and young people aged 11 to 25 also play a key role in providing early support for young people’s mental health and wellbeing. Early support hubs provide open-access drop-in mental health services that assist children and young people with a range of issues, such as eating disorders, at an early stage without the need for a referral or doctor’s appointment.

I am pleased to say that this year, thousands more young people will receive support with their mental health, thanks to £7 million of new funding for 24 existing community-based early support hubs to expand their current offer. That funding will deliver 10,000 more interventions such as group sessions, counselling therapies and specialist support over the next 12 months. Looking forward, we are also committed to rolling out open-access young futures hubs in communities. This national network is expected to bring local services together and deliver support for young people facing mental health challenges, including support for those with eating disorders.

We should also be concerned about the widespread availability of harmful online material that promotes eating disorders, suicide and self-harm, which can easily be accessed by people who may be vulnerable. We have been clear that the Government’s priority is the effective implementation of the Online Safety Act, so that those who use social media, especially children, can benefit from its wide-reaching protections as soon as possible. Our focus is on keeping young people safe while they benefit from the latest technology. By the summer, robust new protections for children will be enforced through the Act to protect them from harmful content and ensure that they have an age-appropriate experience online.

It is right to focus on awareness and early intervention, but we know that some people simply need access to high-quality treatment in order to get better. A key priority of this Government is therefore to expand community-based services to treat eating disorders, so that people can be treated earlier and closer to home. NHS England is working to increase the capacity of community-based eating disorder services. By improving care in the community, the NHS can improve outcomes and recovery, reduce rates of relapse, prevent children’s eating disorders continuing into adulthood and, if admission is required as a last resort, reduce the length of time that people have to stay in hospital.

I am pleased to say that funding for children and young people’s eating disorder services has increased, rising from £46.7 million in 2017-18 to a planned £101 million in 2024-25. With this extra funding, we can focus on enhancing the capacity of community eating disorder teams across the country. We are also committed to providing an extra 8,500 new mental health workers across child and adult mental health services to cut waiting times and ensure that people can access treatment and support earlier. Through the 10-year health plan, this Government will overhaul the NHS and ensure that those with mental health needs, including those living with eating disorders, are given the support that they need.

I share the concern of the hon. Member for Bath about accurate recording of deaths to understand the extent to which eating disorders and other factors have caused or contributed to deaths. This matter is being explored with the national medical examiner for England and Wales, the Office for National Statistics and the Coroners’ Society of England and Wales.

Hon. Members also raised concerns about BMI. It is not right that any individual is being refused treatment based on their weight or BMI alone. National guidance from the National Institute for Health and Care Excellence is clear that single measures such as BMI or duration of illness should not be used to determine whether to offer treatment for an eating disorder. I am ready to receive any representations from colleagues who have evidence that that is happening, and I would be happy to raise that with the appropriate channels.

[John McDonnell]

I raised with the Minister the reform of disability benefits, which will have implications for sufferers and their carers. My understanding is that the universal credit health element is to be denied to those under the age of 22. In addition, it will be halved and then frozen, and the PIP criteria are changing. As I said, I simply want the Minister to check with his colleagues in the Department for Work and Pensions what the implications are for sufferers of these conditions and their carers. We need specific action to protect them in the consultation; otherwise, people who are already suffering financially as a result of such conditions—particularly when the whole family supports the sufferer—will be further harmed.

[Stephen Kinnock]

I will follow up on those points and write to the right hon. Gentleman. As he knows, the Green Paper is out for consultation. Although the Government have made decisions about some measures, we are consulting and engaging on a number of others. It is very important that we see all the issues that he raises in the round, and I will follow them up with colleagues, particularly in the DWP, and write to him.

I again thank the hon. Member for Bath for raising this important issue and for her tireless efforts in this House to raise awareness of eating disorders. I thank all hon. Members for their thoughtful and moving contributions on behalf of their constituents and, in some cases, their loved ones. One person afflicted by an eating disorder is one too many, so the Government will strain every sinew to combat this profoundly debilitating condition.

Infected Blood Inquiry

John McDonnell Excerpts

Tuesday 19th November 2024 Commons Chamber

[John McDonnell (Hayes and Harlington) (Ind)]

On a point of order, Madam Deputy Speaker. I apologise for raising a point of order out of sequence, and I will explain why I am doing so. It relates to the case of Mr Alaa Abd el-Fattah and a point of order that I raised over a week ago. Some Members may recall that he is a British citizen who was imprisoned for his human rights campaigning in Egypt. He has served his sentence of five years and should have been released in September, but was not. His mother, a well-known academic at Cairo University, has been on hunger strike for 50 days. Anyone who has had any experience of hunger strikes knows that this is a critical period.

A number of us wrote to the Foreign Secretary over 10 days ago about this case, urging him to make further representations to the Egyptian Administration to secure Mr el-Fattah’s release. As of close of play today, we have not received a response. Through you, Madam Deputy Speaker, could I urge the Foreign Secretary to respond and, more importantly, take action? I am now fearful for the life of Laila, Mr el-Fattah’s mother, because as I said, the hunger strike has entered its 50th day.

[Madam Deputy Speaker (Judith Cummins)]

The very serious matter raised by the right hon. Member is not one for the Chair, but he has placed his concerns on the record in the hearing of the Foreign Office.

Children’s Hospices: Funding

John McDonnell Excerpts

Wednesday 30th October 2024 Westminster Hall

[John McDonnell (Hayes and Harlington) (Ind)]

I congratulate my hon. Friend the Member for Liverpool West Derby (Ian Byrne) not just on securing the debate, but on his work over the past couple of months or so on raising the funds for Zoe’s Place. He rounded up every Scouser he knew, including those of us who live in exile, and asked them to contribute in some way.

My contribution, to which my hon. Friend made reference, was to do a rendition of “You’ll Never Walk Alone” on the trombone—[Interruption.] “Oh dear”, I agree, but let us be charitable about this. The video was used to say, “If you don’t pay the money, we will keep on playing it.” My brother Brian, an ardent Liverpool supporter, contacted me to ask, “Why were you playing ‘Three Blind Mice’?” This man, my hon. Friend, has nearly raised the money, but I want the message to get out there: we are not yet over the line, and we need it for such a valuable resource.

I also congratulate my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for her work in the all-party group for children who need palliative care. She and Lord Balfe met the Minister, and I believe it was a helpful ministerial meeting. I reiterate the requests that she made of the Minister: the idea of at least extending the £25 million is key, and ensuring that it is ringfenced. It is not that we do not trust the ICBs—eventually they will get into action and will be geared up—but if the money goes directly to them, this will be compete against their other priorities and it is difficult to see how it could be maintained and secure for the future.

Another petition has been raised as well, by Corin Dalby, who wrote to me, calling for £100 million of the money that is raised in fines by the Financial Conduct Authority to be transferred to hospice funding. I think that is worth looking at to fill a short-term gap in the coming period, but the long-term issue is exactly as my hon. Friend the Member for Mitcham and Morden said: we need a comprehensive plan. We accept that that could be a 10-year plan, but people want security over time. I want to see that money integrated into Government funding. Of course, charities raise funds, but additional funds—overall, I think it has to be core funding.

I want to make one final point. I chair a group of unpaid carers, and have done so for the past two years. For someone who is an unpaid carer in this country at the moment, whether they are looking after someone who is sick or a child with a terminal diagnosis, they have almost certainly been thrust to the edge of poverty, because the carer’s allowance is so little. That causes untold worry and stress for those parents, which is unnecessary.

We will see what happens in the Budget today, but I put in a plea and hope that the Government will address the carer’s allowance. It needs a dramatic uplift, which would help to alleviate some of the stress and pressures placed on parents looking after children with a terminal diagnosis.