Infants, Parents and Carers Bill

Helen Hayes Excerpts

2nd reading
Friday 4th September 2026 Commons Chamber

[Helen Hayes (Dulwich and West Norwood) (Lab)]

I congratulate the right hon. Member for New Forest West (Sir Desmond Swayne) on coming top in the private Members’ Bill ballot and on his choice of Bill. I also pay tribute to my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson) for her work to champion the needs of very young children and their families over many, many years. I thank the 1001 Critical Days Foundation for its work on the Bill. Its research so clearly demonstrates how critical the first 1,001 days—the stage from conception to the age of two—are for child development and the unique opportunity they offer to set every baby on a solid foundation for the rest of their life.

There is a sign outside the wonderful Sheringham nursery and children’s centre in east London that captures the importance of the first 1,001 days perfectly: it reads “Building brains here.” During the first 1,001 days, babies’ brains develop at the most astonishing rate, forming over 1 million neural connections every minute and reaching 80% of their adult size by the age of two. The right support during this vital phase of development can bear fruit for a lifetime in terms of good emotional regulation, learning capacity, language and communication skills, and physical health. Conversely, without the right inputs in early childhood, the impacts of disadvantage can become embedded for a lifetime.

Good support in the first 1,001 days involves a wide range of people. It means family, of course, but also midwives, health visitors, GPs, parenting support, breastfeeding and weaning support, and perinatal mental health care. It can also involve special educational needs and disabilities specialists, and, sadly, sometimes those in safeguarding and social services. This network of people involved in providing support for babies, parents and carers during the first two years gives meaning to the phrase “It takes a village to raise a child.”

[Dr Peter Prinsley (Bury St Edmunds and Stowmarket) (Lab)]

The Kingdon review of paediatric audiology services demonstrated terrible shortcomings in that service throughout the country. Poor hearing leads to poor language development and poor brain development and is a catastrophic start to a child’s life. Does my hon. Friend agree with me that we must do all that we can to support audiology services? She mentioned a long list of health professionals; I would like to give a shout-out to audiologists.

[Helen Hayes]

My hon. Friend is right. I mentioned the need for early access to SEND support, and I would include audiology in that category. Those services are vital, as are speech and language services, which we know are all too often not available at the earliest possible opportunity. In a moment, I will speak about the importance of that very early intervention. That network is the village, and the village should be available in every community for every family, right across the country, every single week of the year.

One of the proudest achievements of the Labour Governments of 1997 to 2010 was the creation of Sure Start—a children’s centre in every community, bringing together a range of universal services for pregnant women, new parents and carers, and children under a single roof in local neighbourhoods. I once again pay tribute to my predecessor, Dame Tessa Jowell, for her pioneering work to establish Sure Start right across the country. The results of Sure Start were transformative, with long-term evaluations showing that integrated early childhood interventions significantly improved long-term health, especially for disadvantaged children; reduced hospital admissions; and improved GCSE results. The analysis also showed that investment in those services represented exceptional value for money and a positive financial return, with every pound spent on Sure Start delivering more than twice as much back in societal benefits.

My own daughters were born in 2005 and 2008, and we experienced at first hand the benefits of that investment in the form of antenatal and early childhood support. It provided a gold standard in community midwifery services, excellent health visitors, good breastfeeding support, a drop-in speech and language therapy clinic when one of my daughters needed that, and a wealth of other services. All of this was delivered a very short distance from home in our local community, so we also got to meet other parents and babies at the same stage and to build relationships with them.

[Dame Meg Hillier]

My hon. Friend and I have had similar experiences of the system. For me, one of the important things was that it did not stigmatise going to seek advice, whether it be about child psychology or speech and language. Does my hon. Friend agree that when Ministers start working on how to flesh out this Bill and put it into practice, it is really key that it must be universal?

[Helen Hayes]

Later in my speech, I will make exactly that point about the importance of these services being available on a universal basis, for the reasons my hon. Friend alludes to.

It was a tragedy that Sure Start centres were one of the earliest and most extensive casualties of the austerity of the Conservative and Liberal Democrat coalition Government of 2010. The funding was not ringfenced; in many cases, the services were not statutory; and the integrated service design model was not mandated. In many ways, the strongest argument for the Bill we are debating today is the experience of just how easy it was for Sure Start to be dismantled, ultimately resulting in the closure of 1,300 centres and the loss of that precious and vital integrated network of support for babies and their families, which had been delivering so much. Those closures were compounded by the covid-19 pandemic, when access to face-to-face services in early childhood was very limited. We have seen the impact of that, particularly the increase in the number of children with speech, language and communication difficulties coming through the system in recent years.

[Sir John Hayes]

The hon. Lady is making a powerful speech about Sure Start, and in particular about the capacity to deliver what she describes as face-to-face services. It is critical that those services are delivered in precisely that way—in person—because of the trust that that creates. As a new parent in 2000, having never had a child before, I remember that my wife and I were dependent on exactly those kinds of very trusting personal relationships. I fear that more and more of those kinds of services are being delivered now online, and people are being driven online to attain them. We must reverse that trend; it was exaggerated, of course, during covid, but it has never really recovered since.

[Helen Hayes]

I agree with the right hon. Member about the importance of face-to-face services. I mentioned the excellent community midwifery services that I was able to benefit from as a new mother. We have got ourselves into a terrible state with maternity care right across the country, with tragedies and a real challenge in turning those services around. One of the things I found so important and appreciated so much about that community midwifery service was that during the course of my pregnancies, I got to know the team of five midwives who worked in that service. One of those midwives took me through labour and the antenatal period. That was so important for building the trust that, in midwifery and maternity services in particular, has been badly damaged by service failures in lots of areas of the country.

My second daughter has two middle names, one of which is Agnes. Agnes is the midwife who delivered both my babies through that excellent community midwifery service, about which I cannot speak highly enough. Those services have now largely gone; midwifery services are not delivered in that way anymore.

On the delivery of online services, parents and carers—all of us—look for advice online all the time, so it is important that there are accredited, reliable, trustworthy sources of good information online. I do not dismiss the role of online services, but they cannot ever be a substitute for the delivery of in-person services.

As our Labour Government seek to restore some of the provision that was lost as Sure Start was dismantled, and to respond to the challenges that families face by expanding Best Start family hubs, there are some vital considerations. The first, which my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier) alluded to, is the principle of universality. None of us comes to parenthood for the first time knowing everything about what is best for our baby. For many new parents, irrespective of material resources, the experience is overwhelming. It is an incredibly vulnerable time of life: 10% to 15% of new mothers experience post-partum depression. We should therefore ensure that all new parents can access support and advice in the earliest years, and that it is easily accessible for everyone in their local communities. If support was delivered in that way, there would be no stigma associated with accessing it, and there would be the added benefit of helping to build community cohesion by giving parents from different backgrounds living in the same area an opportunity to connect with each other.

[Amanda Martin (Portsmouth North) (Lab)]

My hon. Friend is making some valid points about Sure Start, which I was able to use for two of my children; the service had disappeared by the time I had my third child. When we talk about involving all parents, does she agree that we need to make sure that fathers are involved? In the parental leave work that is going on, we have to ensure that self-employed fathers are not left out due to a lack of access to paternity leave. That would make it really difficult for them to attend these places that we are introducing and would cause stigma.

--- Later in debate ---

[Helen Hayes]

I agree with everything that my hon. Friend says. The role of fathers is so important, and they must have the opportunity to connect with each other and share their experiences. I will later talk about some powerful work on reading that involves fathers. Parenting support should be presented as something that absolutely everybody needs, not as something that people need only if they have a problem, because that is where the stigma creeps in. As well as making these services as normal as possible, we need to make them as accessible as possible. My hon. Friend also makes some important points about paternity leave.

[Natasha Irons]

My own experiences as a new parent were as my hon. Friend described: it was this terrifying thing, “How do I keep this bundle of lovely joy alive and get some sleep at the same time?”

Universality is so important but, as these services have lost funding, they have become more and more targeted. One of the good things about a universal service is meeting other parents from different backgrounds and children growing up in a community rather than in silos. Does my hon. Friend agree that any way forward has to be a one-stop shop model—a drop-in service, like a stay and play, not something highly targeted and specialised? It should be the sort of thing where parents can drop in, get some support, and meet other parents who are going through the same thing.

[Helen Hayes]

I agree with everything that my hon. Friend says. It is important that Best Start family hubs are, like Sure Start centres, anchor institutions—anchor places in local communities—as well as places where individual services are delivered; then the whole will be more than the sum of its parts.

The second principle I want to mention is the importance of the availability of SEND expertise in early years settings. The earlier that a special educational need or disability is identified, the sooner that appropriate support can be put in place. Early identification also enables parents and carers to understand their child’s needs and provide the support they need as they grow. Early intervention is not only the best for the child and the family, but much more cost-effective for the public purse. I therefore strongly welcome the Government’s commitment to put SEND specialists in every Best Start family hub.

The third principle is the opportunity to participate in a range of activities together. My Committee recently published a report on reading for pleasure, which delivers such significant benefits for children’s development, educational attainment, empathy and mental health and wellbeing. Reading for pleasure should start as early as possible in a child’s life, with parents and carers reading to their babies.

My Committee recommended a national reading guarantee that will embed opportunities to read for pleasure throughout every child’s life, from birth to the age of 18. This should start in Best Start family hubs. I pay tribute to the brilliant work of BookTrust and former Waterstones children’s laureate Frank Cottrell-Boyce in this area. They have modelled inclusive approaches to early years reading that engage and build the confidence of parents and carers, who themselves had negative experiences of reading at school and lack the confidence to read with their own children, by making reading together a fun and joyous experience for everyone. We heard some wonderful testimony about groups who do this work with fathers, grandparents, parents and carers, building the confidence back to do something that delivers such benefits both for children and for parents.

[Chris Kane]

I commend my hon. Friend and her Committee for the excellent “Reading for Pleasure” report. There is an irony that I am recommending the report—it is 130 pages—to everyone that I can. It said that reading for pleasure can include all sorts of things, such as manga books—my son likes those—and comic books. Reading for pleasure does not have to mean a novel, as we might think. Simply exposing children to the concept of reading and the choice to read is important. I certainly picked that up in the report, and it resonated with me. If Members have not read it, I commend it to them as very much worth reading.

[Helen Hayes]

My hon. Friend is absolutely right. We take a broad definition of reading in the report, including audiobooks, because this is about the stories and the connection. Any way that gets children and young people engaged in that is important. Frank Cottrell-Boyce makes the point so well that reading with babies often means books that do not have any words in them at all—it is about the pictures, the story and the engagement.

[Dr Kieran Mullan (Bexhill and Battle) (Con)]

This might be an opportune moment for the House to pay tribute to Dolly Parton, who did an enormous amount of work across the world to encourage children of all ages to read.

[Helen Hayes]

I was coming to that exact point. We must pay tribute to the legend that is the late Dolly Parton. We mourn her passing. Her extraordinary commitment through her Imagination Library means that children in my constituency, many other parts of the country and across the world can receive a book a month free of charge. We owe her a huge debt of gratitude for her generosity and leadership in this area.

My Committee is undertaking an inquiry on the early years and will report shortly. I look forward to setting out our recommendations for the ways in which support in the first 1,001 days can be further strengthened to give every child the best possible start in life. In addition, we are working with the Work and Pensions Committee on a joint inquiry to scrutinise the Government’s child poverty strategy, because unless we tackle the scourge of child poverty, children will continue to experience the blight of disadvantage, which prevents them from fulfilling their potential.

I welcome the Bill and I am pleased that the Government are supporting it. Placing early childhood services on a statutory footing will provide a better basis to ensure that these vital services are delivered consistently in every community across the country, making it much harder for a future Government to dismantle them, as previous Governments have been able to do. I welcome the requirement for an annual report to Parliament as the accountability mechanism for the new statutory duties.

My Committee would welcome the opportunity to play our part in scrutinising the Government’s progress in this area. There is no more important task than giving every child the best possible start in life. It is important because every child is precious and deserving of love and security. It is important because the benefits to our society and our economy are huge. The Bill will play an important role in ensuring that we deliver for every single child, and I am proud to support it.

Mental Health Bill [Lords]

Helen Hayes Excerpts

2nd reading
Monday 19th May 2025 Commons Chamber

[The Minister for Care (Stephen Kinnock)]

It was truly a privilege to be in the Chamber this evening to hear so many moving, powerful and thoughtful contributions. It really was Parliament at its best, and it is an honour for me to close the debate.

The Bill has been a long time coming. Patients, practitioners, campaigners and charities have all long awaited the introduction of this legislation and have played a hugely important role in getting the Bill to this point. I would like to put on record my thanks on behalf of the Government and pay testament to their commitment to change. I thank Members in both this House and the other place, including our brilliant and esteemed colleague Baroness Merron, for all their work.

As the Bill started in the other place, it has already been through extensive detailed scrutiny under the eyes of peers, many of whom were there when the Act was last revisited in 2007—I am sure they will enjoy me reminding them of that. It is testament to the cross-party consensus that has so far underpinned the Bill that the debates were constructive and largely led to the betterment of the Bill. I trust that this collegiate spirit will now continue in this House, and I thank the Opposition and the Liberal Democrats for the constructive spirit in their approach to this debate.

Every speech we heard sought to improve processes and outcomes for patients and their loved ones, and there is broad cross-party support for the overall ambitions of the Bill. However, some specific issues and queries were raised in the course of the debate that need addressing. Many hon. Members asked about our implementation plans, rightly stating that legislation is only as good as its application. Indeed, we know that community service provision is very far from where it needs to be—an issue that we intend to address alongside the implementation of the Bill.

Our first priority after Royal Assent will therefore be to draft and consult on the code of practice. It is essential that we listen both to practitioners and to those with experience of the Act when we draw up the statutory guidance.

[Helen Hayes (Dulwich and West Norwood) (Lab)]

The review of the Mental Health Act 1983 is very welcome. It started its life close to my constituency with the work of Professor Sir Simon Wessely, who drew on the experience of many residents in south-east London, particularly with regard to his work on racial inequalities. As the Minister is talking about the implementation of the Bill, I wonder whether he can reassure my constituents, who want to know that this Bill will do the job of eliminating racial inequality from mental health services, by committing to putting the patient and carer race equality framework on the face of the Bill.

Speech and Language Therapy

Helen Hayes Excerpts

Monday 27th January 2025 Westminster Hall

[Helen Hayes (Dulwich and West Norwood) (Lab)]

It is a pleasure to see you in the Chair, Mr Vickers. I thank the Petitions Committee for securing this important debate and my hon. Friend the Member for Lichfield (Dave Robertson) for introducing it; I associate myself with his words on Holocaust Memorial Day. I also congratulate Mikey on starting the petition and on his impactful campaign.

Speech and language therapy is a vital service that supports children and adults with the development of speech and assists those who have difficulties in eating, drinking or swallowing. As Chair of the Education Committee, I will focus my remarks on access to speech and language therapy for children and young people.

Speech and language are vital building blocks of communication. Children who face barriers to developing speech and language early in life, for a wide range of reasons, can face significant difficulties. Poor communication skills reduce participation in education and can lead to frustration and challenging behaviour or withdrawal and school avoidance. For children whose needs relate to a difficulty in eating, drinking or swallowing, good and timely speech and language therapy can make the difference between being able to attend school or nursery safely or not.

I know the difference that speech and language therapy makes in my own family. When my oldest daughter started to learn to speak, it became apparent that she was really struggling to say particular sounds and that her inability to differentiate between sounds, because of her difficulty in pronouncing some of them, was having a consequential impact on her ability to read. We were able to seek advice from an open access speech and language therapy clinic at our local health centre, which provided a wealth of advice and some helpful exercises that we could support our daughter to do at home. The clinic was available to us whenever we needed it, and my daughter was able very quickly to overcome the challenges that she faced. I am pleased to report that she is now a 19-year-old who is nothing but forthright in her ability to communicate with everybody.

Open-access services such as the clinic that we were able to access are now extremely hard to find. There is a shortage of speech and language therapists. Children who need speech and language support face long waiting lists in many parts of the country. That is a huge problem, because accessing timely support has a significant bearing on the impact that a speech and language difficulty can have in the long term. Issues that can be quickly addressed in very young children, for example, can become much more challenging to overcome with the passage of time. Early intervention saves money and delivers better educational outcomes.

Speech and language therapy sits at the junction of several parts of the public sector. Needs are often identified in nurseries or schools; local authorities have a statutory responsibility for special educational needs and disability support; speech and language therapy is an allied health profession commissioned often by the NHS, but sometimes by local authorities and schools directly, and is often based in community settings. This complexity and the lack of a clear single pathway of commissioning services are among the contributory factors to the current shortage and the geographical disparities in the availability of speech and language services.

I welcome the Government’s recognition of the importance of speech and language development in children and the commitment from the Department for Education to roll out the evidence-based NELI—Nuffield Early Language Intervention—programme in reception classes across the country. Expanding the availability of targeted support to help people who have speech and language difficulties to catch up will undoubtedly make a difference, but we know that the earlier a speech and language difficulty is identified, the better, not least because sometimes a speech difficulty is the first indication of wider special educational needs. The earlier a problem is identified, the easier it can be to address it. The Government recognise this, but there is currently no clear plan to expand the availability of speech and language therapy in early years and community settings.

The early years sector is diverse and disparate. There is a need for clarity on expectations, commissioning pathways and professional development to ensure that very young children can access speech and language therapy as soon as a need is identified. The fact that it is not compulsory for children to be in a formal setting until the age of five underlines the importance of community-based support in children’s centres, family hubs and health centres, so that parents and carers can access support readily when they need it.

Adjusting the workforce challenges within speech and language therapy will also require intervention from the Government to make more training places available and to encourage those who have left the profession to return. I hope that the Government will produce a workforce plan for all the professions related to SEND support, so that professional expertise and support will be there for children and families who need it.

More widely, we have a SEND system that is failing children and their families across the country, with far too many children unable to access SEND support in school, waiting far too long for an EHCP and often finding that, when they get an EHCP, it cannot be fully delivered. Since the Minister for Care is responding to this debate today, I take the opportunity to highlight that when I speak with parents, teachers, local authority officers and others who are responsible for delivering SEND support, they very often say that, “within the EHCP, the H is too often absent”. They struggle to get the NHS to the table and there is very weak accountability in the levers that can force it to do so. I ask the Minister to look in detail at the issue, and to work with his colleagues in the Department for Education to ensure better collaboration between Health and Social Care and Education, in the best interests of children with special educational needs and disabilities.

Finally, I take the opportunity to plug the Education Committee’s recently launched inquiry on special educational needs and disabilities. As a Committee, we recognise the vital role of speech and language therapy within the wider network of services that contribute to effective SEND support. Our call for evidence on SEND is open until 6 February. I encourage all right hon. and hon. Members who have an interest in SEND services or challenges within their constituencies to encourage their constituents to submit evidence to our inquiry, including those who have experience of speech and language therapy, so that we can hear the widest possible range of evidence and make recommendations to the Government that can deliver a transformation in SEND services across the country.

Lobular Breast Cancer

Helen Hayes Excerpts

Tuesday 10th December 2024 Westminster Hall

[Helen Hayes (Dulwich and West Norwood) (Lab)]

I beg to move,

That this House has considered the treatment of lobular breast cancer.

It is a pleasure to see you in the Chair, Ms Vaz. I secured this debate in memory of my constituent, who was also my close friend, Heather Cripps. I welcome Heather’s husband David and her sister Jenny to the Public Gallery. I will come to Heather’s story shortly, but I also want to welcome to the Public Gallery my mother-in-law Cressida, who survived lobular breast cancer 22 years ago, as well as several others whose lives have been touched by lobular breast cancer. Many of them have provided me with briefings in preparation for the debate, for which I am grateful.

I met Heather in 2016 when, as someone who had pretty much never run for a bus before, I was roped into a free 5 km parkrun at 9 am on Saturday mornings in Dulwich park. Heather was a serious runner, and running was a huge part of her life. She took pity on me and decided that her inexperienced local MP needed a friend to run with, and she became that friend. We worked out that we lived close to each other, and it was not long before I was picking her up to go to the parkrun, and we would run together most weeks.

Heather was a dedicated public servant, spending her whole life working in the Home Office. It is a testament to her professionalism that she never spoke with me about the content of her work. What she did speak about as we ran was her family, her husband David and two precious daughters. Heather was an amazing mum. She spent so much of her time thinking about what her girls would enjoy, planning birthday parties and holidays and, earlier this year, plotting a trip to Wales to culminate in the surprise collection of a new puppy.

In 2020, at the height of the covid-19 pandemic, Heather started to get terrible back pain. For several months this was treated as a musculoskeletal issue. She was given pain medication, but it got worse and worse. Eventually, she was diagnosed with stage 4 invasive lobular breast cancer. The back pain was the result of the cancer having spread to her spine. For three years, chemotherapy held the cancer at bay but, when Heather came to Parliament almost exactly a year ago to campaign on lobular breast cancer, she mentioned to me that she once again had back pain, which she thought could be the cancer recurring.

[Jim Shannon (Strangford) (DUP)]

The hon. Lady brings forward a very personal story. In this House, we know that personal stories are always the hardest to tell, but the ones that have more impact. I commend the hon. Lady for what she is doing today. We would all say that, but we mean it.

[Helen Hayes]

I thank the hon. Gentleman—who is my hon. Friend—very much indeed for that intervention.

Heather died in St Christopher’s hospice near her home on 30 August. She was 48 years old. Shortly before she died, Heather’s daughter, who was due to start secondary school in September, visited her mummy in the hospice, so that she could see her in her school uniform. In that unbearable heartbreaking detail is why we must do better on lobular breast cancer: better on awareness of symptoms and better at research into treatments.

The heartbreak of Heather’s story and the impact on her family and friends is sadly replicated for too many women and their loved ones throughout the UK. Lobular breast cancer is the second most common type of breast cancer, accounting for 15% of all breast cancers, and 22 women a day are diagnosed with lobular breast cancer in the UK. It behaves differently from other forms of the disease, mostly strikingly because it does not cause lumps, and it is often completely invisible on a mammogram.

[Melanie Ward (Cowdenbeath and Kirkcaldy) (Lab)]

I thank my hon. Friend for securing this debate on such an important topic, and for so movingly sharing the story of her friend Heather. I want to raise the case of my constituent from Dalgety Bay. Just days before her surgery for lobular breast cancer, a mammogram was still unable to pick it up, exactly as my hon. Friend describes. It could not pick up the existence of her cancer at all. Does my hon. Friend agree that this is a perfect example of why we so badly need more research and better diagnosis and treatment of lobular breast cancer for women across the UK?

[Helen Hayes]

I thank my hon. Friend for bringing the story of her constituent to this debate. This is exactly the reason why we need to find better means of diagnosis and treatment for lobular breast cancer. I will come talk about some of those means shortly.

Currently, there are no treatments specific to lobular breast cancer. This must change. The issues have been well documented by Dr Susan Michaelis, founder of the Lobular Moon Shot Project. Susan was 50 when she noticed a small, pale, 1 mm mark on her left breast in 2012. She had no lump and both a mammogram and an ultrasound were reassuring. Six months later, the small mark had become redder and Susan had a biopsy that confirmed she had invasive lobular breast cancer. Susan’s cancer had spread to her neck, the back of her head, the eye area and her ribs. She is now on her sixth line of treatment.

Dr Michaelis is a qualified air accident investigator. She focuses on how accidents can be prevented by learning from past mistakes, and has used these skills to look at how treatments have failed her. In doing so, she has identified the need for a new approach.

[Helen Grant (Maidstone and Malling) (Con)]

I congratulate the hon. Lady on securing this really important debate. Does she agree that specific forms of cancer like lobular breast cancer require specific funding, research and treatment, and that a one-size-fits-all approach is going to fail millions of women? I declare an interest in asking this question in that last year I was diagnosed with lobular breast cancer. I am cancer-free now, thank God, as a result of the help of the Royal Marsden hospital. Tragically, that is not the case for many, many women in this country.

[Helen Hayes]

I thank the hon. Lady very much for that intervention and for sharing her personal story.

I pay tribute to Dr Michaelis for her research and campaigning on lobular cancer. I hope that all Members have received their Dr Susan Michaelis rose this week, named in her honour, and will plant it as a reminder of the urgency of her work.

There are so many other stories. Katie Swinburne was 47 when she was diagnosed with invasive lobular cancer in her left breast, leading to a double mastectomy, radiotherapy and 10 years of targeted chemotherapy. She writes:

“It is very hard to accept that none of my treatment is specific to lobular breast cancer and no one can tell me if it is working or has been effective…I find myself living in fear of recurrence. I deserved to have an early diagnosis. I did not get this. I deserve a specific treatment; I do not have this. I have three young children; they deserve to have a mum. I deserve effective follow up; I do not get this. I need you to change this for me, my husband, my family, all the women with a lobular diagnosis and all the women who will be diagnosed in the future.”

Emma Hunwick writes:

“I was a happy, healthy and relatively fit 49-year-old professional woman when I noticed a tiny pull in my right nipple. No lump, no other obvious external changes. An annual medical and referral just 12 days later resulted in a clear mammogram and a clear second 3D mammogram. An ultrasound then reported an area of 2 cm of concern. I rapidly went from ‘caught early’ to borderline stage 2 breast cancer. After my mastectomy I was informed that I was in fact stage 3c invasive lobular breast cancer…I am now at high risk with predicted survival outcomes at 10 and 15 years of approximately 45% and 30% respectively...I need to know that the vital scientific research into lobular breast cancer is being done now. Not next year or in 10 years but starting now, so that I might survive longer and continue to work with less worry about whether the standard monitoring tests that missed my first cancer, will miss a recurrence.”

Kirstin Spencer’s story is also typical. Diagnosed in 2018, she and had a double mastectomy, but was warned that, especially in the first two years afterwards, the disease could recur in areas such as the scar tissue, chest wall and surrounding skin. She was told that vigilance and well-managed medical follow-up were everything. Within a year of her diagnosis, she developed red-flag symptoms that were repeatedly dismissed by her breast specialist. She was refused follow-up treatment and sent for psychological counselling. By the time that a new GP listened to her concerns, substantial recurrence was confirmed, with extensive metastatic disease.

My mother-in-law Cressida’s story is very different from Heather’s, and we are all so grateful to the doctors who treated her and for the subsequent 22 years of health that she has had and continues to enjoy. Cressida did not have any grandchildren when she was diagnosed, but a prompt diagnosis meant that she has been able to be closely involved in the lives of eight subsequent grandchildren, as a much-loved granny. But Cressida’s outcome was about luck rather than design, so much so that it was only very recently, when reviewing her medical notes, that she found out that the type of cancer she had was lobular.

Breast cancer survival rates are directly impacted by the stage of diagnosis. Late diagnosis, which is all too common for lobular breast cancer, leads to far worse outcomes. To improve this situation, we need much better awareness of the full range of breast cancer symptoms, including the very small skin changes that are typical of lobular cancer. Not all cancers cause lumps. A clear mammogram does not provide absolute reassurance, because lobular cancer typically does not show on a mammogram. We need lobular-specific research and treatments.

Staff at Manchester Breast Centre have stated that they are able to do the research to understand the complete pathology of lobular breast cancer—research that has never been done—to pave the way for bespoke treatments to be developed. This will take five years and cost £20 million—moonshot funding that will be recouped many times over in the tax revenue paid by women like Heather, who would be able to continue working, and in the NHS costs that will be saved.

Hundreds of MPs in the last Parliament and this one have listened to the stories of constituents affected by lobular breast cancer and pledged their support for the Lobular Moon Shot Project. Lobular cancer is the sixth most common cancer in women. It is more common than ovarian, brain, central nervous system, non-Hodgkin lymphoma, pancreatic and kidney cancers. I know that the Minister cares deeply about women’s health equality and I put it to her that lobular cancer is a women’s health equality issue.

[Mary Kelly Foy (City of Durham) (Lab)]

I thank my hon. Friend for raising this very important issue. I was diagnosed with, treated for and cured of breast cancer this year, in a very timely way. I was very grateful to be told that it was one of the best cancers to have, because there is so much research into it and treatment for it. It is unimaginable that someone could be treated for a different type of breast cancer for which the research and treatment are not available. I am sure my hon. Friend will agree that this situation needs to be addressed immediately, because we cannot have these inequalities. Lobular cancer should be on a par with other breast cancers in terms of treatment.

[Helen Hayes]

I thank my hon. Friend for that intervention. She makes the point extremely well. How can it be that there are so few targeted programmes to improve the diagnosis and treatment of a cancer that affects 15% of breast cancer patients? How can it be that such poor information is provided to women that does not empower them to seek help when the symptoms of lobular cancer recur? How can it be that women are lured into a false sense of security when they receive a clear mammogram, or are fobbed off when they raise concerns?

We need to do better for women affected by lobular breast cancer, in memory of Heather and many more women like her who will not live to see their children grow up. We need to do better for women like Dr Susan Michaelis, who are living today with their lobular cancer being held just about at bay by generic breast cancer treatments, but who live with the constant anxiety that one day the treatment will stop working. We need to do better for the 22 women today and the 22 women tomorrow—the 22 women every single day—who are diagnosed with lobular cancer.

I have a number of asks to make of the Minister. Will she commit to investigate why there are so few targeted programmes to improve diagnosis, research and treatment of a cancer that affects 15% of breast cancer patients? Will she confirm that lobular cancer will remain a priority in the Government’s women’s health strategy? Will she take steps to address the lack of information given to women about mammograms, so that every woman is reminded to remain vigilant for non-lump changes in their breasts, including very small changes? Will she take steps to improve the education of primary care doctors on the symptoms of lobular breast cancer, so that women are not provided with false reassurance, but promptly referred for diagnostic tests?

For patients treated for ductal breast cancer, the first five years are critical, but for lobular breast cancer the risk will remain for 10 years and sometimes beyond, yet lobular patients are typically released from surveillance care after only five years. Will the Minister take steps to ensure that there is a specific follow-up pathway for lobular breast cancer? Will she support Manchester Breast Centre’s call for Lobular Moon Shot funding—£20 million over five years—to enable the basic pathology of lobular cancer to be fully understood as the foundation for developing bespoke treatments? Will she look at the fairness of the distribution of research funding to ensure that this funding can be identified without further delay?

I know the heartbreak that Heather's death has caused for all who knew and loved her, and most especially for her family. We can act to ensure that, in future, women like Heather who are diagnosed with lobular cancer can live to see their children grow up, and it is imperative that we do so.

--- Later in debate ---

[Helen Hayes]

I thank all hon. Members who have contributed. They have brought their constituents’ stories and their own personal experiences to the debate. We have many issues to work on in this House, but there is a particular responsibility when an issue presents itself in a personal way through a devastating story, whether that is through a constituent, somebody we know or our own personal experience. When we see an opportunity for things to be done, it is imperative for us all to bring that to this place. I am grateful to hon. Members for the spirit in which the debate has been conducted, the high level of consensus and the high level of commitment to see change for patients with lobular cancer.

I am grateful to the Minister for her engagement with the debate. I know she is committed to this area. In closing, I ask that she looks in further detail at two issues. The first is the proportional allocation of the funding available through the NIHR for research into breast cancer. We have heard again and again today that lobular cancer accounts for 15% of all breast cancers, yet currently attracts only a tiny fraction of dedicated research. We know that the improvements we have seen in treatments and outcomes for different types of cancer diagnosis always hinge on the investment put into research to find the cures. There is a disproportionality there that can and must be changed.

The second area I ask the Minister to look at in a little more detail is the advice and guidance given to clinicians in primary care, to make sure that there is a consistent understanding of the symptoms of lobular cancer and its distinctiveness as a disease compared with ductal cancer, and to make sure that every woman presenting to her GP is able to access accurate advice and swift onward referral. It is important across the whole range of women’s health conditions that women are trusted and listened to when they present with symptoms to their GP, and this is an area where I believe primary care can do better, be more consistent and deliver better outcomes as a consequence.

I pay tribute once again to Dr Susan Michaelis and all those who campaign on this issue on the basis of their deeply difficult personal experiences. I give my commitment that for as long as I have a voice in this place, I will continue to work on this issue until we see the changes that are needed.

[Valerie Vaz (in the Chair)]

I thank everyone who took part in and attended this debate.

Question put and agreed to.

Resolved,

That this House has considered the treatment of lobular breast cancer.