Infants, Parents and Carers Bill

Helen Hayes Excerpts

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.

NHS

Helen Hayes Excerpts

Thursday 23rd May 2024 Commons Chamber

[Victoria Atkins]

I very much share my hon. Friend’s concerns. I will take away what he has said, but I want to look into this issue, because I understand the points that he and our right hon. and learned Friend the Member for Kenilworth and Southam (Sir Jeremy Wright) have made.

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

The Secretary of State comes to the House, at the end of a Parliament, to paint her Government’s record on the NHS in the most positive light possible. I have to say to her that the picture she paints will not be recognised by staff working in the NHS or patients anywhere in my constituency. I will give her an example: it is impossible for my constituents to get an appointment at some GP practices in a timely manner. At the same time, our local hospital, which is under severe financial pressure, is reporting a record number of patients attending its urgent care centre because they cannot get an appointment in primary care. Will the Secretary of State acknowledge her Government’s failure to tackle primary care, which is placing unbearable pressure on doctors working in our hospitals to do the best for their patients?

[Victoria Atkins]

Again, I pay tribute to our general practitioners and all the staff who work with them in practices, because we know that they have delivered some 60 million more appointments than in 2019. That was an election promise made and kept. On the hon. Lady’s wider question about primary care, that is precisely why we have rolled out Pharmacy First to free up GP appointments. It is precisely why we have a focus on prevention, because we know that if we can help people through the NHS app, it will take the burden off GPs. It is also why we are looking at fit notes in an imaginative and thoughtful way, because I have listened to GPs, who say that if we can reduce these sorts of responsibilities on GPs, it will leave them with more time for patients.

Oral Answers to Questions

Helen Hayes Excerpts

Tuesday 23rd April 2024 Commons Chamber

[The Minister for Health and Secondary Care (Andrew Stephenson)]

That is an important point. We know how vital it is to support everyone who is working so hard in our NHS to support patients. NHS England is reviewing mental health services for all staff who need them, to ensure that they can access the support they need. It is working collaboratively with regions and integrated care systems to agree the best approach to doing that.

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

T4. There is an increasing incidence of bowel cancer among younger patients, such as my constituent Emily, who received a late diagnosis after many months of attending her GP with iron deficiency anaemia. Younger patients often report that bowel cancer was dismissed as a possibility by their GP because of their age, and that symptoms such as iron deficiency anaemia are not taken seriously enough and are not included currently on the list of commons symptoms on the NHS website. What is the Secretary of State doing to ensure that NHS guidelines and practice are fit for purpose for younger patients, who far too often receive a late diagnosis of bowel cancer?

[Andrew Stephenson]

The hon. Lady makes an important point. As part of the NHS long-term plan, we have an ambition to diagnose 75% of all stageable cancers at stage 1 or 2 by 2028. That means that we need to make significant improvements on the harder-to-detect cancers such as bowel cancer. We are working across systems to deliver those improvements, not only with better screening programmes, but by improving patient pathways. However, I am more than happy to meet her if she wants to have a further conversation specifically about bowel cancer.

Tobacco and Vapes Bill

Helen Hayes Excerpts

2nd reading
Tuesday 16th April 2024 Commons Chamber

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

I rise to speak in support of this important Bill. Smoking is entirely harmful and there are no benefits. Cancer Research UK is clear that tobacco remains the single biggest cause of cancer in the UK, causing an estimated 125,000 deaths per year—one person every five minutes. On average, smokers lose 10 years of their life expectancy and face lifelong health complications.

Despite the protestations of tobacco companies, smoking also has a detrimental effect on our economy. Action on Smoking and Health estimates that the overall cost of productivity losses and health and care needs caused by smoking costs the UK a staggering £17.3 billion every year.

We have come a long way in recent decades in reducing smoking rates. The last Labour Government led the way on smoking harms, raising the legal smoking age to 18, banning cigarette advertising in shops and introducing the transformative ban on smoking in enclosed public spaces and workplaces. It is now hard to recall just how society ever thought that smoke-filled restaurants, pubs and tube carriages were remotely acceptable.

[Brendan Clarke-Smith (Bassetlaw) (Con)]

Will the hon. Lady give way?

[Helen Hayes]

I will not give way at this stage, I am afraid.

It is still the case that more than one in 10 adults—around 6.4 million people—are smokers. I wish to pay tribute to my constituent, Gower Tan. Gower began to smoke at the age of 13. His father was also a lifelong smoker and died early at the age of just 66 from lung cancer. This was devastating for Gower and his family and led him to give up smoking at the age of 40. Gower has since become a tireless campaigner for Cancer Research UK—first as an ambassador and more recently as part of the staff team. Gower and his family know as well as anyone the pain and heartache that smoking can cause and the deep sorrow that comes from knowing that the death of a loved one was preventable.

Like my hon. Friend, the shadow Secretary of State, I fully support the Bill’s measures to ban smoking for anyone born after 2009, freeing future generations from the health impacts of tobacco. I also welcome the Bill’s urgently needed measures to regulate advertising and restrict the availability of vapes to children and teenagers. We on the Labour Benches have been calling for action on this for a long time. Last year, I introduced a ten-minute rule Bill on the advertising of vapes to children. One in five 11 to 15-year-olds in England used vapes in 2021, and under-age vaping has dramatically increased by 50% in the past three years. Five years ago, vaping was not a significant concern, but now it is raised with me in every school that I visit. Teachers are routinely having to manage the disruption in the classroom that addiction causes.

Vaping has a really important role in smoking cessation and that role should not be undermined by this legislation, but although vaping is far less harmful than smoking, it is not a harmless activity. Last year, 40 children were admitted to hospital with vaping-related issues. There is evidence of respiratory harm and impacts on mental health and concentration levels.

We can see the strategy of the vaping companies. They are seeking to secure future demand for their products by getting children addicted today. It is frankly absurd for e-cigarette manufacturers to claim that they are not targeting children. In displays across the country, brightly coloured advertising for vapes mimic popular brands and characters. Flavours such as gummy bears, skittles, tutti-frutti and cherry cola are clearly designed to appeal to children and vapes are being openly promoted to children on social media.

Although I support the Bill today, it would be remiss of me not to ask what has taken the Government so long. They have had repeated opportunities to introduce new regulations on the marketing of vapes. My hon. Friend the Member for City of Durham (Mary Kelly Foy) put forward an amendment in November 2021 to the Health and Care Bill to ban the branding of vapes that appeal to children, while the Electronic Cigarettes (Branding, Promotion and Advertising) Bill introduced last year would have banned e-cigarettes and vaping products from being advertised to appeal directly to children. These delays will have led to more children experimenting with e-cigarettes and becoming addicted to recreational vaping.

Today, we have a genuine opportunity to stops the harm of nicotine addiction and free future generations from the health impacts of smoking. We on the Labour Benches are clear that we will put the health of children and young people first. A Government who cannot command the support of their own MPs for a flagship piece of legislation should surely step aside, call a general election and allow someone else to do the job.

Young Adults with Spinal Injuries

Helen Hayes Excerpts

Thursday 29th February 2024 Commons Chamber

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

I am grateful for the opportunity to open this debate, which I sought on behalf of my late constituent Tom Lazarides and his family, some of whom are present in the Public Gallery. Tom was a 20-year-old student at Durham University when, on 13 June 2020, he dived into a swimming pool and suffered a catastrophic spinal cord injury that left him paralysed.

In preparation for the debate, I reread an interview that Tom’s mother Bridget gave to a newspaper in October 2020. In that interview, Bridget spoke about her talented, sporty son, about how loved he was by all who knew him, and about the overwhelming outpouring of support for him from across the country. Bridget’s interview was also full of determination—Tom’s determination and hers—and hope that, despite the devastating nature of his injuries and the many challenges that he faced, with the love and support of his family and friends and good treatment and care, somehow Tom would be okay. I am sorry to report to the House that Tom Lazarides sadly passed away in November 2023.

Tom and his family were devastated by his injury. Instead of helping them to come to terms with what had happened, and enabling Tom to live as well as possible with his injury, the systems that should have been there to support him failed utterly to deliver the care that he needed. Tom’s spinal cord was permanently injured in two places. He was tetraplegic as a consequence, and had many health complications. He had a potentially fatal condition called autonomic dysreflexia, which causes unpredictable and dangerously high spikes in blood pressure. His skin was very fragile, leading to grade 4 bedsores. He had a tracheostomy, leading to communication difficulties. He was unable to cough, leading to repeated inhalation of food particles, which caused pneumonia and pulmonary oedema, and he suffered from muscular complications.

Tom had spent 18 months in hospital, including a year of rehabilitation at Stoke Mandeville. His injuries were permanent and unequivocal. They were well understood by his doctors, and were fully and properly documented. The injuries gave rise to a need for ongoing clinical care from qualified nurses, which could not possibly have been delivered by local authority social care. Tom was discharged from Stoke Mandeville in the autumn of 2021. Under the policy of discharge to assess, he was referred for consideration for NHS Continuing Healthcare funding.

According to the NHS, eligibility for Continuing Healthcare funding is determined on the basis of a person’s needs, rather than a particular diagnosis. There should be no limits on the setting where it can be provided or the type of support, and it is determined according to an assessment by the local NHS integrated care board. The assessment comprises two parts: the NHS continuing care checklist, which can be completed by a nurse, doctor, other healthcare professional or social worker, followed by a full assessment undertaken by a multidisciplinary team.

Tom’s assessment was completed in January 2022. His family raised concerns with me that the assessment process appeared to start with a blank sheet of paper and did not take into account anything that was already known about Tom’s injuries and their impact on his health. For example, he was asked by an assessor whether he got around the house on a Zimmer frame, and to show that he could not use his hands when he was clearly tetraplegic. His family were left with the constant impression that no one involved in the assessment, or in reviewing the decision later in the process, had ever properly read Tom’s medical records.

In May 2022, a decision was reached that Tom was not eligible for Continuing Healthcare funding. For Tom and everyone who knew him, the decision was as astonishing as it was devastating. Tom’s level of clinical need was crystal clear. As Tom’s mother has said to me on a number of occasions, all that needed to happen was for Tom’s very clear medical notes to be read. Tom’s family appealed the decision. The process was beset by difficulties, including changes of personnel at the case manager level, records being lost and constant delays. Tom found the visits to his home intrusive, and they had a detrimental impact on his already fragile mental health.

There was no prescribed timescale for the assessments and appeals, and no clear point of contact for Tom and his family to liaise with during the process. Tom and his family felt that there was constant pressure for him to move to a care home, despite the study published by Professor Brett Smith 12 years ago, which documented the very poor outcomes for young adults with spinal cord injuries who live in care homes, arising from their lack of agency in the decision to move to the care home, the shortage of properly skilled and qualified staff who can meet the needs of residents with spinal cord injuries, the lack of independence, and isolation. Tom was a bright young person with so much to contribute. What he wanted and needed was care and support at home, so that he could live well with the consequences of his spinal cord injury. In the last few months of his life, Tom repeatedly expressed a wish to end it. He simply could not see a positive future, when the struggle to access the care and support he needed was so difficult.

Tom Lazarides’ family have asked me to raise a number of issues that arise from his experience, which indicate the ways in which the healthcare system is simply not working for young adults with spinal cord injuries. The first is the discharge to assess policy. Discharge to assess is not designed for people with a catastrophic injury. What may be appropriate for a frail, elderly person who has had an emergency hospital admission, giving rise to concerns about their care needs at home, or for someone with a progressive condition that may be reaching the point at which more care is needed, is simply not appropriate for someone with a catastrophic permanent injury. It gives rise to a lack of continuity from hospital to home, and requires the person to be assessed by people who do not have the same detailed or specialist knowledge of their needs as the hospital clinicians who have been caring for them as an in-patient.

The second concern is that the patient has no involvement in decisions about their care. Tom was clear and consistent that he did not want to live in a care home. He was a bright and articulate young man whose paralysis should not have resulted in the removal of all agency in his own life, yet the completed decision support tool, the first stage in the assessment process, was submitted without being checked by Tom or his family. Panel meetings took place in a context of secrecy—about their membership, the dates and times of meetings, and the content of discussions. A system is not delivering patient-centred care when the patient is completely shut out of the decision- making process.

The third concern is the lack of any certainty or transparency about the timelines for decision making. The processes relating to Tom’s care took years, and the lack of continuing healthcare support had a profound impact on his day-to-day life during that time. Tom and his family simply had no idea when they would have any news about the next steps.

Everyone, the Lazarides family included, is acutely aware of the pressures on our health and social care system and the need to ensure value for money for the public purse, as well as ensuring safe, appropriate and high-quality care for individuals who need it. Tom’s case, however, was not a matter of resources. In the end, following the appeal, the ICB decided that he was eligible for continuing healthcare funding. The tragedy is that his family were only informed of this after he had died.

It is devastating for any young person to suffer a spinal cord injury that has life-changing consequences but, with the right care and support, it is possible to live a good life with independence and dignity. Depression is not inevitable, but poor mental health is sadly all too common. Tom Lazarides and his family encountered a system that seemed incapable of delivering the safe, appropriate, high-quality care and support that he needed and was entitled to. As a consequence, they spent the two years from Tom’s discharge from Stoke Mandeville Hospital in the autumn of 2021 to his untimely death in the autumn of 2023 constantly fighting a system that ultimately failed them.

What attention is the Minister paying to the experiences of young adults with spinal cord injury and the quality of care that they are able to access? What action is she taking to ensure that the quality and availability of care for young adults with spinal cord injury is consistent across the country? Will she look at the policy of discharge to assess and its appropriateness for patients with a sudden and permanent life-changing injury? Will she look at the assessment process for continuing health- care funding and take steps to ensure that a patient’s existing healthcare records always play an integral part? Finally, will she take steps to ensure that the assessment process for continuing healthcare funding has increased transparency and accountability, and increased certainty on the timescales and decision-making processes?

No one who reads the facts of Tom Lazarides’s injury and subsequent health needs could be in any doubt that he needed long-term nursing care to be safe and to live well with the consequences of his injury, yet the tragedy of his injury was compounded by the failure of our healthcare system to deliver the care that he needed, or indeed to treat him and his family with respect and dignity.

Tom’s family have asked me to raise his case, in order to press for accountability and for improvements for others. I look forward to the Minister’s response.

Oral Answers to Questions

Helen Hayes Excerpts

Tuesday 5th December 2023 Commons Chamber

[Helen Whately]

I am really sorry, but the hon. Member’s memory appears to be very short. I was working in healthcare when there was a Labour Government and I remember very well problems for the NHS during winter. She does not even need to look back into the past; she can look at the Labour-run NHS in Wales, where they are having so much difficulty with A&E performance that they even fudged the figures and hid a whole load of patients so people would not notice what was going on.

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

5. What steps she is taking to help reduce vaping by young people.

[The Parliamentary Under-Secretary of State for Health and Social Care (Dame Andrea Leadsom)]

The hon. Lady raises such an important question on a subject that is dear to both our hearts. We all know it is an offence to sell vapes to children under 18, yet one in five children tried a vape in 2023 alone and the number trying vapes has tripled in the last three years. We know the industry is targeting children, quite cynically. That is unacceptable. Our tobacco and vapes Bill will restrict the appeal and availability of vapes to children, and we are consulting on that right now.

[Helen Hayes]

As the Minister rightly said, under-age vaping has increased by 50% in just the past three years. Ministers had the chance to stop this trend two years ago, during the passage of the Health and Care Act 2022, when Labour tabled an amendment to prohibit branding that appeals to children, but Ministers would not support it and Conservative Members voted it down. Does the Minister regret the fact that the Government did not act sooner? When will the planned new legislation be brought to the House? The consultation is welcome, but there is consensus on the issue and action is urgently needed.

[Dame Andrea Leadsom]

The hon. Lady knows full well that making decisions that change legislation requires consultation. That is both the convention and the requirement. The Government have brought forward the consultation as soon as possible. It will close tomorrow and we will introduce legislation as soon as possible in the new year. I think the hon. Lady will find that that legislation really will tackle the problem of the cynical targeting of children.

LGBT+ People and Spouses: Social Care

Helen Hayes Excerpts

Tuesday 12th September 2023 Westminster Hall

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

I beg to move,

That this House has considered the treatment of LGBT+ people and their spouses in social care settings.

It is a pleasure to serve under your chairmanship, Sir Robert. I sought this debate because of the horrific experience of my constituent Ted Brown and his late partner, Noel Glynn. Ted is present in the Public Gallery this afternoon. Ted and Noel were together for almost 50 years. They met at the first Gay Pride event in 1972, which Ted helped to organise. They were civil partners; they were devoted to each other. Sadly, Noel developed dementia in older age and, in 2018, he was placed in Albany Lodge care home in Croydon after Lambeth Council was unable to find a place in a care home any closer to Ted in Brixton.

One day, Ted noticed that Noel had suffered bruising and a cigarette burn to the back of his hand, and two whistleblowers at Albany Lodge confirmed that Noel was being subjected to homophobic abuse from some of the staff. The whistleblowers recounted two staff members asking him, “Are you a gay man? Do you like gay men?” before dragging him to his room, where other residents heard a disturbance going on and Noel’s voice. In January 2019, Noel told a social worker, “I don’t like it here—they beat me up”. The social worker recommended moving Noel to another care home, but he remained at Albany Lodge for nine more months. Throughout that time, Ted was paying £1,400 a month to Albany Lodge for Noel’s care. Ted told me that staff at the care home refused to recognise his relationship with Noel, and that he was warned by two other LGBT residents in the home not to tell staff that they were a couple, because, “It won’t be good for either of you”.

Noel was a vulnerable man with dementia. He should have been safe in Albany Lodge. The abuse he suffered was horrific and inexcusable, and it was a clear breach of his human rights. That was recognised in a court judgment against Lambeth Council, which placed Noel in Albany Lodge, that awarded the couple £30,000 in compensation. Sadly, Noel died in 2021 before the compensation was paid.

Ted told me that when Noel was first placed in Albany Lodge, there was a delay in undertaking a necessary medical assessment. He contacted the care home to chase this on Noel’s behalf and received an email notifying him that an assessment would be done that day on his father. He was not invited to attend this appointment, which would usually be supported by a spouse or close family member since the aim of the assessment was to gather information about the person’s health history, including matters such as allergies and eating habits. Noel, by then, had dementia.

Ted went to the home anyway and was initially not allowed into the room with Noel, despite bringing documents demonstrating their civil partnership, his power of attorney for Noel and evidence that they had been partners for 49 years. As Ted waited outside the room, he could hear Noel calling out for him. This utterly distressing situation speaks to a total lack of dignity for LGBT+ couples in the care system that urgently needs to be addressed. Prior to being admitted to Albany Lodge, Noel initially received care at home. Ted believes that Noel was also subjected to homophobic abuse by one of the carers, who he observed treating him roughly. In an indication that these experiences are not at all uncommon, Ted also told me that prior to the carers coming in, he had been warned by a friend to remove all traces of his relationship with Noel as a couple from their home.

In a report titled “Stripped of all Pride”, Compassion in Care documented 486 reports of homophobic abuse in care settings and of LGBT+ staff who were afraid to disclose their sexuality. I strongly encourage the Minister to read the report, if he has not already done so; the testimonies are shocking and devastating. One whistleblower wrote:

“There was one gay resident in the home, staff were so cruel to them, some staff treated this poor man as if he had something catching. I saw one staff member spit on this man whilst telling him to repent as he was a filthy pervert. Another staff member slapped this man around the back of his head, really hard. I reported it, I was horrified. The staff started shouting at me are you a pervert lover? Are you gay? Nothing was done, I went to the authorities and left”.

That is hate crime, happening behind closed doors and being perpetrated against some of the most vulnerable people. There are many similarly shocking testimonies in the Compassion in Care report.

[Tulip Siddiq (Hampstead and Kilburn) (Lab)]

My hon. Friend is giving a powerful and emotional account of her constituents. I welcome Ted to the Chamber; I wish it was under happier circumstances. I want to raise something that happened in my constituency a few years ago. A gay couple were taunted with offensive and degrading questions about their sexuality on a bus in West Hampstead. They were then brutally attacked. It was in the news, so my hon. Friend might have heard about it. This year, Rainbow Europe announced that the UK has fallen to 17th place in terms of safety for LGBTQ people. Nine years ago, it was in first place. Does my hon. Friend agree that crimes that are targeted at someone’s LGBTQ identity should have tougher sentences?

[Helen Hayes]

I thank my hon. Friend for her intervention and for raising that shocking case, which I remember from media reports at the time. We cannot ever take progress on equality for granted, and it is vital that we take seriously that drop in protections for LGBTQ+ people and that the current increase in hate crime is met with the toughest possible sanctions that can be delivered.

Perhaps even more shocking than the testimonies in the Compassion in Care report is the fact that, of the 486 services involved in the testimonies, 481 were still rated as good by the Care Quality Commission. A 2016 CQC-commissioned report found that older people were hiding their sexual orientation and gender identity because of fears of discrimination. The abuse that Noel suffered and the abuse documented by Compassion in Care are utterly abhorrent, and there should be no place for them anywhere, still less in settings that are trusted to look after our most vulnerable loved ones—older people who are physically frail or suffering the disorientation of dementia.

For the current generation of older LGBTQ+ people, such abuse can also be a re-traumatisation. Those aged 75 and older were adults before homosexuality was decriminalised in 1967. They lived through the long years of section 28, have experienced life in a deeply homophobic society, are very likely to have spent a significant period of time concealing their sexuality, and have lived through the trauma of the HIV/AIDS epidemic—suffering the loss of much-loved partners, friends and community members while society stigmatised them. Older people who are LGBTQ+ are also disproportionately likely to have become estranged from family members and may lack people around them to advocate on their behalf in the care system.

I am particularly concerned about the poor response to Noel’s case. Once the horrific abuse he suffered was identified, it should have been the job of the care home, the local authority, the CQC and the Government to ensure that it could never happen again, but the reality was far from that. When Noel’s abuse was reported, staff were suspended, but Ted understands that they were allowed to return to work on a different floor of the same home. Following inspections in 2019 and again this year, the CQC continued to rate Albany Lodge as good. The fact that one local authority placed Noel in a care home in a different local authority has also presented problems in ensuring accountability.

No one should have to fear that they or a loved one will be abused in a place that has a responsibility to care for them. No one should have to fear that their sexuality or gender identity might result in such abuse. In 2016, the CQC recommended that commissioners, providers, and health and care staff should

“consider the needs of LGBT people in planning and delivering end of life care services”,

that health and care staff should

“communicate openly and sensitively about sexual orientation and gender identity as a routine part of their delivering good quality, personalised end of life care”

and that commissioners and providers should

“collect data on sexual orientation and gender identity as part of an equalities approach to monitoring end of life care outcomes.”

The Government also mentioned the need for improved monitoring in their 2018 LGBT action plan, but there is little evidence of progress. There are examples of good practice, both in the delivery of LGBT affirmative retirement housing, such as Tonic Housing in Lambeth, and in the Pride in Care quality standard championed by Care England, but it is unacceptable that monitoring the experiences of LGBT+ residents is not a mainstream part of CQC assessments. Albany Lodge should not have continued to be rated “good” while an LGBT resident was being abused under its roof, and it certainly should not have continued to be rated “good” after that abuse had come to light.

What progress does the Minister believe has been made following the publication of the Government’s LGBT action plan five years ago in 2018? What action is he taking to protect the rights of LGBTQ+ residents in adult social care? Will the Government ensure that gathering the experiences of LGBTQ+ residents and their spouses forms part of the CQC inspection framework for care homes? Will he take steps to ensure that no care home or care agency found to have allowed homophobic, biphobic or transphobic abuse can continue to be rated “good” by the CQC? Will he consider further support to roll out the Pride in Care quality standard to more care homes across the country?

When Ted spoke with me about Noel’s experience, he told me about the guilt he feels about being unable to protect the man he loved from abuse. I am sure all of us can understand that guilt, even though it is entirely misplaced. Ted should have been able to trust Albany Lodge to care for Noel and that trust was fundamentally broken. We cannot undo what happened to Noel, but we can work to ensure that it does not happen to anyone else. I hope that the Minister will set out the meaningful action that he will take to this end.

--- Later in debate ---

[Helen Hayes]

Let me put on record a matter that I should have done at the beginning of my opening speech: I co-chair the all-party parliamentary group on adult social care—apologies for not mentioning that earlier.

I thank my hon. Friend the Member for York Central (Rachael Maskell) for her moving and powerful speech, particularly for the poem with which she finished; sometimes prose is not quite enough to convey the depth of emotion on such issues, but that poem did so very well. I thank my hon. Friend the Member for Denton and Reddish (Andrew Gwynne), who was right to locate this issue within the wider pressures facing social care and to discuss the esteem within which the sector is held. There are many good people working extremely hard every single day to deliver high-quality care, but the pressures of social care, the difficulty local authorities have finding placements and the difficulty of recruitment and retention faced by many organisations certainly do not help with the issues of scrutiny and accountability that we are concerned with today.

Finally, I thank the Minister for the tone of his remarks and his commitment to address the issue. I urge him to look more at an issue that he did not mention in his response: the Pride in Care standard, which shows already what good can look like for LGBTQ+ people in care settings, and can give assurance to relatives looking for care placements for their loved ones that the setting understands and takes seriously the very specific personalisation needed, and the need to ensure absolutely that homophobia, transphobia, discrimination and abuse are eradicated from such settings.

Question put and agreed to.

Resolved,

That this House has considered the treatment of LGBT+ people and their spouses in social care settings.