Lobular Breast Cancer: Moon Shot Project

Debate between John Milne and Wera Hobhouse

Thursday 9th July 2026 Westminster Hall

[Wera Hobhouse (in the Chair)]

We have quite a lot of members of the public in the Gallery; it is lovely to have you. You have been through the experiences and are affected by the topic of the debate. However, as is convention, I encourage Members to speak into the Chamber and through me as Chair and not turn round to the Gallery. That is not to be impolite; it is a convention of this Chamber, so please understand that.

[John Milne (Horsham) (LD)]

I beg to move,

That this House has considered Government support for the Lobular Moon Shot Project.

It is a pleasure to serve under your chairship, Mrs Hobhouse. MPs from across the House are here today to mark the anniversary of the death of my constituent Dr Susan Michaelis, founder of the Lobular Moon Shot Project. I thank the Backbench Business Committee for finding time at very short notice in the parliamentary schedule for this debate. Unfortunately, that short notice has prevented many MPs who would have liked to have spoken today from joining us. Unfortunately, that was a necessity.

Today is a sad moment because Susan is no longer with us, but it is also a time to celebrate what she has achieved. Susan was a remarkable woman. She was warm but incredibly stoic. At no time was that clearer than on her last trip to Parliament in the summer of last year, oxygen tank in tow. Determined but evidently suffering, Susan stood for 22 minutes in a silent vigil outside No. 10 Downing Street with fellow campaigners and lobular ladies around her. We all understood that Susan was in her last days or weeks, so to watch her husband, campaigners and fellow lobular ladies rallying around her, literally supporting her, was a sight to behold.

In her haste to deliver her petition to No. 10 that day, Susan had forgotten her ID. She was distraught. All that effort would be wasted, as the rules were clear: no ID, no entry. But that, of course, was not Susan’s way. Susan, with our support, blagged her way past security. Susan was never one to take no for an answer. Not long after, Susan died—just days after her meeting with the then Health Secretary.

It might seem odd to say, given that I met Susan when she was already very ill with the lobular cancer that she was campaigning to prevent, but I feel that I met her in her prime. It was immediately clear to me that this was a person with an unparalleled commitment to her cause. Despite her illness, Susan never looked for the sympathy vote. She was always calm and matter of fact. She led by example. It is a reminder that her cause, while not yet complete, is a worthy one, and with a champion to match.

Susan’s first campaign was in fact not lobular breast cancer; it was aviation safety. She flew commercial aircraft in the Australian outback, one of the few female pilots to take up this challenge, and piloted the first all-female crewed Qantas flight. This was before contaminated cabin air ended her flying career in 1997. She spent the following decades building the evidence base on aircraft cabin air contamination, with a PhD, an MSc, peer-reviewed research and a leading role in her home country’s Senate inquiry into cabin air quality. Her focus in her final years was on lobular breast cancer, and it is on this endeavour that I was pleased to support her as her local MP.

Susan was diagnosed with invasive lobular breast cancer in 2013. It was a one millimetre mark—no lump, no pain. Two mammograms and two ultrasounds told her that there was nothing to worry about. An MRI scan found 2.5 cm and surgery then confirmed 7 cm. That gap between what standard imaging can see and what is actually there is the heart of why lobular breast cancer needs its own research programme. It behaves differently. It is missed because it is different and it is currently treated exactly the same as the most common form of the disease, because the underlying biology has never been properly funded.

In May 2023, with her husband Tristan, Susan launched the Lobular Moon Shot Project in Horsham. She built it from nothing into a campaign that has cross-party support in this House, a partnership with the Manchester Breast Centre and a research plan costing £20 million over five years.

In June 2025, Susan travelled to Manchester to help launch the scientific programme that she had spent years fighting for. It was a programme that, of course, she knew she would never benefit from herself. Nine days later, Susan died. She never received a reply from No. 10 and never got a chance to make her case to the then Health Secretary. So today, I will again make the case to the Government on behalf of Susan, the 22 patients a day who are diagnosed with lobular breast cancer, and the 463 MPs who have publicly supported her campaign so far, which I believe is the highest number of MPs to publicly support any individual campaign.

Every day, 22 women in this country are told that they have lobular breast cancer—that is over 8,000 a year. This is not a rare disease; in fact, it is the sixth most prevalent cancer in women.

Local Housing Need Assessment Reform

Debate between John Milne and Wera Hobhouse

Tuesday 13th May 2025 Westminster Hall

[John Milne]

Yes, it makes strategic planning very difficult. Provision of infrastructure, particularly in rural areas, is a major problem and not sufficiently built into the planning system to compensate for it. It is easier in urban centres where the infrastructure is already in place.

This is the reason we have contrived to have perhaps as many as 1.5 million unbuilt permissions nationally, at the same time as a national housing shortage. That is because too many of them are permissions for unaffordable and, therefore, unbuildable homes. There is a degree of land banking but, for the most part, developers build as fast as they can sell. If they are serving only the top end of the market, that will be slowly. As Oliver Letwin described in his excellent 2018 report, sadly unacted on by the Government of the day, we need far greater variety in housing type.

As much as 80% of housebuilding is aimed at the top 20% of the market. The fastest way to fix that is to build a guaranteed quota of social housing. My party is asking for 150,000 a year. I guarantee they would be snapped up like hot cakes, as fast as they could be built. There is a fundamental difference between permissions and actual, physical houses. If all we ever think about is permissions and alleged impediments to permissions, we will never get to grips with the problem. Wrong permissions do not increase supply, they suppress it. Wrong permissions bake high land prices into the system. Handing out more permissions like confetti simply chokes the system with unbuildable sites that will hang over the market for a generation. There are lots of ways the standard method could be reinvented, but any future form must empower local authorities to deliver social housing in significant numbers from day one. How we do that is up for grabs, but somehow it must be done.

[Wera Hobhouse (in the Chair)]

I intend to give the lead Member two minutes at the end of the debate at 3.58 pm. I will call the spokesperson for the Liberal Democrats at 3.28 pm. I will not impose a formal speech limit for the time being. I hope there is time for everybody to come in.

Eating Disorder Awareness

Debate between John Milne and Wera Hobhouse

Tuesday 1st April 2025 Westminster Hall

[Wera Hobhouse (Bath) (LD)]

I beg to move,

That this House has considered eating disorder awareness.

It is a pleasure to serve with you in the Chair, Mr Stuart.

Eating disorders are among the most serious and life-threatening of all mental illnesses, but they have been overlooked and underfunded for too long. Because of this, they have one of the largest treatment gaps in modern healthcare, and we must ask why that is. In the face of overwhelming need, why are we still ignoring this crisis, especially as it is a documented fact that recovering from an eating disorder is possible, no matter how long and complex the illness has been?

In the past decade, we have seen an alarming rise in eating disorders—a trend that only worsened during the pandemic. What was already a struggling support system for those affected by eating disorders has collapsed under pressure. Too many people are waiting, too many people are failed and too many people are feeling neglected by the system. The eating disorders all-party parliamentary group, which I chair, recently published its report, “The right to health: People with eating disorders are being failed”, which highlights the increasing neglect we are seeing across eating disorder services—but that is by no means to say that those who are working in eating disorder services are not working their socks off. People with eating disorders are being told that they are not thin enough, that they are too complex, and in some situations are being moved on to palliative care and identified as treatment-resistant. That is why we are pushing for a complete reformation of eating disorder treatment alongside the development of a stand-alone eating disorder strategy.

During Prime Minister’s questions on 19 March, the Prime Minister emphasised the NHS’s goal of bringing eating disorder care closer to home. This is an important goal, but it requires equitable access to intensive community and day treatment, as highlighted in Beat’s report, “There’s no place like home”. Such services can reduce the need for costly hospital admissions and shorten stays for those who need in-patient care. However, Beat’s report shows that only one in six NHS integrated care systems in England currently offer enough intensive community and day patient treatments for both children and adults. Alongside this, it is crucial that we do not focus on only one end of the spectrum. Day services cannot always meet the needs of those with extreme malnutrition, and in-patient care is critical for many people who need high levels of physical, behavioural and psychological support.

The strain on family carers, who often lack medical expertise, must be considered too. In-patient and day patient care must be part of a well-integrated, stepped care system. If those services are not co-ordinated nationally, gaps will form in the care pathway and patients may fall through the cracks. I agree with the Government that if people are treated in a timely manner in the community, there will be less need for costly in-patient care, but before we make any changes, we must ensure that all levels of care are adequately funded and can work in tandem to provide the best possible support.

I recently had the privilege of hearing Nicky Smith share the story of her courageous daughter, who has been in in-patient services for over a decade. Unfortunately, during her long stays, she has not always received the treatment she needs. Her current stay is now in its 21st month. For the last eight months, her team has been trying to find an alternative placement for her complex needs. Sadly, she has been rejected by every service she has applied to and now faces discharge. Nicky and her daughter acknowledge that although some in-patient units are better resourced than others, being in in-patient care has saved Nicky’s daughter’s life and continues to do so. Over the last 12 years, the community eating disorder teams provided limited, inconsistent support. That caused rapid relapse, sometimes in just a few weeks, leading to low body mass index and frequent readmissions, often to inappropriate units such as general hospitals or acute mental health wards. Ultimately, she was readmitted each time to a specialist eating disorder unit, under section 3 of the Mental Health Act 1983. That is the only way she can complete meals without the need for nasogastric feeding.

In addition to being deeply moving, this story drives home the importance of well-resourced specialist eating disorder units. We cannot cut back on those essential services and force those who are unsuited for discharge into community care. Specialist units are essential for keeping people alive, safe and supported, as they work towards recovery and reintegration into everyday life. That must continue, alongside investment in community and day-treatment programmes.

To tackle eating disorders and develop effective treatments we need to understand them fully. Worryingly, the International Alliance of Mental Health Research Funders found that eating disorders accounted for just 1% of the UK’s already severely limited mental health research funding between 2015 and 2019. That is despite people with eating disorders accounting for around 9% of the total number of people with a mental health condition.

Recent funding announcements are even more cause for concern. The Royal College of Psychiatrists found that 24 of the 42 integrated care boards planned real-terms spending cuts to children’s eating disorder services in the current financial year. That would result in real-terms cuts of well over £800,000. Those planned spending cuts come against a background of severely stretched children’s and young people’s eating disorder services: a 13% increase in referrals in the past 12 months; high thresholds to access services, resulting in more young people being in crisis; almost 800 urgent referrals still waiting for treatment at the end of December 2024; and a 30% true vacancy rate for all eating disorder consultant psychiatrist positions across England, as of March 2023. Following those troubling findings, will the Minister assure all of us here and across the country that all ICBs will invest sufficiently in those vital services in 2025-26 and beyond?

As well as providing an increase in funding, we must take a close look at measures to protect children from harmful online eating disorder content. There is growing evidence that social media is linked to an increase in eating disorders among young people. Algorithms are showing harmful content to vulnerable people. Those include posts promoting fasting non-stop for days on end as a healthy lifestyle. There is an online trend of “thinspiration” posts, which glorify unhealthy weight loss. There have also been cases where, even after users have blocked certain accounts, they still see content that promotes eating disorders.

In research conducted by the Center for Countering Digital Hate, a fictional UK-based 13-year-old user watched a video about eating disorders for the first time. Following the video, one in four suggested videos were for harmful eating disorder content. More than half were for content relating to eating disorders or weight loss. Under the Online Safety Act 2023, YouTube will have a responsibility to protect children from primary priority content such as eating disorders. Yet, YouTube still does not appear to be taking that seriously. In fact, algorithms are pushing the content in order to increase engagement.

Harmful content viewed online can push children further into eating disorders that have a drastic effect on their health, wellbeing and life chances. From the evidence I have seen, I am concerned that, even when the provisions of the Online Safety Act 2023 come into force, the actions of those media giants may not change, which truly worries me. Social media is not the cause of eating disorders. Users who post much of this content are unwell and are not doing so maliciously, but social media can lead those who are already suffering further down the path of disordered eating. More needs to be done to hold social media companies accountable to legislation such as the Online Safety Act.

Another issue of grave concern is the need for more accurate recording of eating disorder-related deaths, and a better understanding of the factors contributing to them. As we know, eating disorders are one of the most life-threatening mental illnesses, however, all too often they are not explicitly listed on death certificates, despite being a significant factor in the person’s death. For example, someone suffering from anorexia and severe malnutrition may have their cause of death recorded as organ failure, without any mention of the underlying eating disorder. That is a crucial gap that we must address.

The APPG has heard first hand from people who have experienced the heartbreak of losing a loved one to an eating disorder. One particularly moving example is that of the Laurence Trust, a Northern Irish charity founded by Laurence’s family after his tragic death. Laurence had struggled with bulimia and depression, and eventually suffered a fatal heart attack. His mother Pam shared with the APPG that his death certificate did not list the eating disorder as a contributing factor. Instead, the cause of death was recorded as undetermined. That misclassification not only deprives families of closure, but hinders our understanding of the true scale of eating disorder-related fatalities.

To better prevent such deaths in future, we must ensure that coroners’ reports accurately reflect eating disorders as contributory factors. Only by tackling these deaths can we gain a clearer picture of the impact of eating disorders, and take meaningful steps towards prevention and improved care. Accurate recording will raise awareness and ultimately save lives. It is high time that eating disorders are treated with the seriousness they deserve. We are all well aware of the many different parts of the NHS that require additional funding, but I have simply heard far too many harrowing stories about delays to treatment, inadequate care and premature inpatient discharge. Now is the time for change.

[John Milne (Horsham) (LD)]

In my constituency of Horsham, we had a particularly upsetting case of a constituent whose daughter had significant mental health and behavioural issues that were very difficult to deal with and, as a consequence of those not being dealt with, she also developed an eating disorder. The only place they could send her to that could cope with that combination of factors was in Yorkshire—my constituency is in West Sussex. That was an extraordinary burden on the family. We need provision across the country to deal with the cases that present.

[Wera Hobhouse]

I totally agree. Unfortunately, there is a massive postcode lottery. Services need to improve across the country so that everybody, like my hon. Friend’s constituent, can get the treatment they need as close to home as possible, because carers are so important, and so that families can see their loved ones.

In the last year alone, more than 30,000 acute admissions for eating disorders were recorded—that is a vast number. What was already an overstretched and under-resourced support system for those affected by eating disorders has now become a national emergency. Our APPG report sadly proved these systemic failures are costing lives. It is clear we need an urgent and comprehensive overhaul of eating disorder care and treatment in this country to ensure that we do not lose our important inpatient care, and to massively improve community and day treatments. I add to what my hon. Friend the Member for Horsham (John Milne) said, that if eating disorders, or the underlying mental health disorders, are not prevented or cared for early enough, everything becomes so much worse further down the line.

I repeat that we must address the role social media plays in promoting eating disorders and harmful content, especially to young people. We also cannot even begin to understand the depth of this crisis without accurate data regarding eating disorder-related deaths. I hope the Government have heard what I said today, and will act fast and decisively to ensure that eating disorder sufferers finally receive the treatment and care they all deserve. I have been chair and vice-chair of the APPG on eating disorders for the last six years. That is a long, frustrating time to see get worse something that one wants to get better, so I hope that today may be the start of us turning a corner.