Ashley Dalton
MP for West Lancashire · Labour · United Kingdom
“My right hon. Friend is being very generous; I thank him for giving way. It was my sombre privilege to work with him on this matter when I was a Minister in the Department of Health.”
“I recently visited the Liberty Centre in my constituency, a fantastic charitable organisation that supports individuals and families who have been affected by domestic abuse and violence. It told me that it could fill its refuge places three times over, but it does not have the resources.”
“It can be diagnosed after a primary diagnosis—primary breast cancer is potentially curable—or the first time that a person is diagnosed with breast cancer. That is called a de novo diagnosis. That is what secondary breast cancer is and, as we have heard, I have it, along with many, many other people.”
“There is also a myth that the treatment for your primary cancer was somehow wrong or had failed if you get metastatic breast cancer. Again, that is absolute nonsense. Breast cancer can still spread, even after successful treatment for a primary cancer, and even with the best treatments in the world.”
“As ever, it is an honour to serve under your chairmanship, Mr Betts. I first acknowledge the campaigners from Make 2nds Count, METUP UK and Breast Cancer Now and the fellow MBC patients who are joining us in the Public Gallery.”
“I do not say that to terrify people, but to say that it is absolutely imperative that they are aware of the signs and symptoms of secondary breast cancer in case they ever have them, no matter how long it has been since their primary diagnosis—or indeed, if they have ever had one.”
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“As the Secretary of State has made clear since we came into power, one of the three big shifts that we want to see in the NHS is a shift from treatment to prevention. The complex challenge of cancer prevention will not be solved by a single solution.”
“The incidence of liver cancer has increased by 50% over the past decade and is expected to rise further. A large percentage of liver cancer is caused by alcohol-related liver disease, which in its early stages has no outward symptoms. If we can find liver disease by screening at-risk populations, there is an opportunity to halt its progress and monitor for the development of cancer. To identify people at high risk of liver cancer due to liver cirrhosis or advanced fibrosis, the NHS in England has been piloting community liver health checks in 20 areas, and liver primary care case-finding pilots across 12 primary care networks. Those pilot sites have screened nearly 125,000 people, and over 9,000 of them have been enrolled in liver cancer surveillance.”
“While those services are primarily focused on supporting people to become free from alcohol dependence, they are also an important setting for providing health information for people with alcohol dependence, identifying alcohol-related health conditions and ensuring that people can access specialist assessment and care. In the 12 months to February 2025, nearly 140,000 people were treated for their alcohol needs—9,000 more than in the previous year. In the coming months, the Department of Health and Social Care will publish the first ever UK guidelines on alcohol treatment. The guidelines will include recommendations on healthcare assessments for alcohol-related conditions and will strengthen pathways between specialist alcohol and drug treatment services and the wider healthcare system.”
“In terms of cancer risk, drinking a bottle of wine is the equivalent of smoking five cigarettes for a man, and 10 cigarettes for a woman. We also cannot overlook the impact that being exposed to multiple risk factors has in increasing the risk of developing certain conditions. For instance, the risk of developing head and neck cancer is 3.8 times higher among those who drink and smoke than those who partake in only one of those behaviours. That is why a holistic approach is needed to our health, with people supported to address all risk factors for poor health together. We are continuing to invest in local alcohol treatment services to make sure that people have access to the treatment they need.”
“The estimated annual cost of alcohol-related harms in England is £27 billion, driven by the impact of alcohol-related illnesses and injuries on NHS services and alcohol’s high contribution to levels of economic inactivity, crime and disorder. Each year, £13 billion is raised in tax revenue from alcohol. The guideline on alcohol consumption produced by the four nations’ chief medical officers advises that drinking any level of alcohol increases the risk of a range of cancers, including mouth, bowel, stomach, liver and breast cancers, and that the risk of harm increases with the frequency and quantity of alcohol consumed. In 2020, alcohol was estimated to have caused about 17,000 new cases of cancer in the UK. One study estimated that between 2015 and 2035 there would be 135,000 cancer deaths due to alcohol in England.”
“Friend the Member for Blackpool North and Fleetwood (Lorraine Beavers) raised the links to poverty and under-investment. As for the impacts, alcohol kills. Last year, in England, more than 22,600 deaths were alcohol related, with more than 8,000 entirely due to alcohol—an all-time high, with rates still increasing by 4% each year. The rate of alcohol-related deaths is 1.7 times higher in the most deprived local authorities, meaning that alcohol is a major contributor to the levels of health inequality in this country. Alcohol also kills young—in 2015, in England, an estimated 167,000 years of working life were lost due to alcohol-related deaths. That amounts to about 16% of all working years lost. The hon. Member for East Londonderry asked about the cost to Government and society. Alcohol harms us massively.”
“That places an incredible and preventable pressure on our NHS: in England alone, of more than 1 million hospital admissions last year, 103,000 were due to alcohol-related cancers. Today, we have heard from many colleagues about the variety of issues that alcohol can cause. The hon. Member for East Londonderry (Mr Campbell) talked about the cost to Government and to society, which I will address later; the hon. Member for Strangford (Jim Shannon) discussed information and the importance of education; my hon. Friend the Member for Easington (Grahame Morris) mentioned the real impacts on communities and families in the north-east; my hon. Friend the Member for Coatbridge and Bellshill (Frank McNally) talked about how important early intervention is; and my hon.”
“It is an honour to serve under your chairship, Mr Stuart, as ever. I thank my hon. Friend the Member for Lancaster and Wyre (Cat Smith) for securing this important debate during Alcohol Awareness Week. The Government recognise that for too long there has been an unwillingness to lead on issues such as alcohol harm. It is unacceptable that alcohol-specific deaths are at the highest rates on record, having increased dramatically during the pandemic. As my hon. Friend stated, alcohol is a type 1 carcinogen, meaning there is strong evidence that drinking alcohol can cause several types of cancer, as well as contributing to more than 200 other health conditions, including liver disease, high blood pressure, stroke and heart disease.”
“Member for Winchester (Dr Chambers), we totally agree on the importance of mental health support. The Government are committed to recruiting 8,500 new mental health workers, and have already recruited 6,700. The shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), cheerily reminded us that all activities are risky. She talked of improving the understanding of alcohol dependency. She focused broadly on alcohol use, but did not necessarily mention cancer. To avoid digressing from the debate, I commit to writing to her further on the areas she raised more generally on alcohol policy. I thank everyone for their contributions to this important debate. We will continue to work across Government to reduce the negative impact that excessive alcohol consumption has on health—including cancer—crime and the economy.”
“Friend the Member for Kingston upon Hull North and Cottingham (Dame Diana Johnson), who leads on alcohol and drugs policy across Government. I will soon meet Lord Timpson to discuss those areas and their impact on prisons. We are working across Government. I would be happy to meet the APPG, as I have previously agreed. Diary pressures are very high at the moment, but I am confident that we will soon find time to do that. We have also talked about preventing under-age drinking, which was raised by my hon. Friend the Member for Coatbridge and Bellshill. There is a commitment in the 10-year plan to make the sale of alcohol-free drinks also illegal to under-18s, ensuring that no-alcohol and low-alcohol products do not become a gateway to standard-strength alcoholic drinks. On alcohol misuse and mental health support, raised by the hon.”
“It is the beginning, not the end. We will continue to work across Government to consider what other measures might be needed to reduce the negative impact of excessive alcohol consumption. My hon. Friend the Member for Lancaster and Wyre also talked about public health as a licensing objective. Evidence to support its impact is, at the moment, somewhat limited, but we continue to work with the Home Office to consider how best to use licensing powers to support local leaders to address alcohol-related harms. I thank my hon. Friend the Member for Easington for his leadership on this important issue. Officials are considering that report from the APPG on drugs, alcohol and justice. I recently met the Minister for Policing and Crime Prevention, my right hon.”
“The Advertising Standards Authority is responsible for regulating advertising through codes set by the Committee of Advertising Practice and the Broadcast Committee of Advertising Practice. Those codes are enforced by the ASA, include specific rules about how alcohol can be advertised, and recognise the social imperative of ensuring that alcohol advertising is responsible. We will continue to work across Government to consider what other measures might be needed to reduce the negative impact that excessive alcohol consumption has on health, crime and the economy. The Government are committed to shortening the amount of time spent in ill health, and to preventing premature deaths. The commitment to labelling in the 10-year plan is a crucial first step to support people to make healthier choices about alcohol.”
“Friends the Members for Paisley and Renfrewshire North (Alison Taylor), for Easington and for Lancaster and Wyre talked about minimum unit pricing. The Government are acutely aware of the cost of living pressures being felt by families and individuals, and the difficult economic conditions facing the country. Although interventions that affect the price of alcohol have been shown to be effective at directly reducing alcohol harms, the Government have chosen not to pursue policies that could exacerbate economic issues at this time, although we will continue to keep those options under consideration. The Department for Culture, Media and Sport is the branch of Government responsible for advertising and marketing.”
“In a 2016 study of 2,100 adults, only 13% named cancer as a health risk from hazardous drinking. Another recent international study found that only 15% were aware that alcohol can cause breast cancer. We will soon share details of our consultation to determine the best ways to get the necessary information to consumers. We welcome the support and input of parliamentarians in taking that important piece of work forward, but let me be absolutely clear: we will consult on how we will implement mandatory labelling, not whether we will do so. This Government are determined to introduce mandatory labelling for alcohol. We have also discussed various other options available for controlling alcohol consumption. My hon.”
“We know that voluntary regulation does not lead to consistently good practice in alcohol labelling, so we need to ensure that there is a legal requirement to display certain information on alcohol products. We also know that consumers want more information on alcohol labels: a 2021 survey showed that 75% wanted unit information, 61% wanted calorie information, and 53% wanted sugar content to be displayed. Those results are supported by those of the 2023 alcohol toolkit study, which found that public support for health warning labels was 61.5%, and that 78% supported nutritional information labelling. There is widespread awareness among people in the UK that smoking causes cancer. That information is important to supporting behavioural change. But public awareness that alcohol is carcinogenic is far too low.”
“We are taking steps now. The 10-year health plan for England includes an important commitment to ensure that health warnings and nutritional information are legally required on alcohol labels. That is a crucial step in supporting people to make healthier choices when it comes to alcohol. There is international support for that approach. The World Health Organisation’s “Global alcohol action plan 2022-2030” recommends that countries should implement labelling requirements to display relevant information to support health protection. Despite the fact that alcohol is a group 1 carcinogen, alcohol labels are currently required to display far less information than those for food, soft drinks, alcohol-free products or tobacco.”
“A number of hon. Members have asked about a national alcohol strategy. We are continuing to work across Government to understand what other measures might be needed to reduce the negative impact of excessive alcohol consumption. I meet regularly with Ministers from across Government to discuss how we take that forward. The drug and alcohol area of work is led by the Home Office. There are no plans to introduce such a strategy at this stage, but I expect further information on how we will deal with alcohol prevention and cancer in the national cancer plan, which, as I was just about to state, the Government will publish later this year. This plan will build on the progress of the 10-year health plan, which was published last week, and will continue the work to shift from treatment to prevention, including for alcohol-related cancer risks.”
“He will therefore be pleased to know that the Government have today published their response to the Health and Social Care Committee report “Adult Social Care Reform: the cost of inaction”. I am sorry to hear that Hillingdon council has decided to close the Rural Activities Garden Centre, but as Members know, decisions on local services are for councils to make since they are best placed to understand and meet the needs of their local populations.”
“I thank my hon. Friend the Member for Uxbridge and South Ruislip (Danny Beales) for securing this debate around services in the community for people with a learning difficulty in Hillingdon, and for championing the rights of people with learning difficulties in his area. I welcome those in the Gallery who are here to demonstrate how important services for people with learning difficulties in Hillingdon are to them. I join my hon. Friend in paying particular tribute to Oliver, Doug, George and Georgia for all their work in this area. I am aware that, as a member of the Health and Social Care Committee, my hon. Friend has a keen interest in health and social care matters.”
“I am delighted that social care will, for some people, be a key part of the neighbourhood health services we discussed, but the adult social care system is in need of wider reform. We have already begun that journey, including legislating for a fair pay agreement and the independent commission into social care. Over time, the neighbourhood health service and the national care service will work hand-in-hand with each other to help people stay well and live independently. To conclude, I note my hon. Friend’s invitation to visit Hillingdon and I will ensure that that invitation is extended to the relevant Minister. I once again thank him for bringing forward this important debate, and every Member who has contributed. I hope that Hillingdon council takes notice of this debate. Question put and agreed to.”
“That is why we have made available over £69 billion for local government this financial year, increasing core spending power by up to 6.8% in cash terms on last year. For Hillingdon, that means a total of £266.3 million in its core spending power for this year, an increase of 6.2% on 2024-25. We strongly encourage councils to apply elements of good market-shaping practice involving providers. My hon. Friend the Member for Uxbridge and South Ruislip talked about how people with learning disabilities should be worked with across the Government, but actually that applies to all Government, because we seek to serve the people and that includes people with learning disabilities. Yesterday, we published our 10-year plan.”
“It is great to be having this discussion today, on the last day of Co-production Week, an important annual awareness campaign to recognise the benefits of working in equal partnership with people using health and social care provision. Local councils should absolutely involve, engage and consult adults with learning difficulties on their care plans, as well as on wider decisions that affect their care and support, and their lives in general. We are committed to encouraging genuine co-production between social care professionals, local authorities, policymakers and, crucially, people who draw on care and support, to design a system that works better for everyone—one that is fair, inclusive and puts people first. The Government recognise that investment in local services in the community is vital.”
“I will ensure that that issue is raised with the relevant Department. I will say a little more about some of the expectations we place on local authorities to shape their care markets to meet the diverse needs of all local people, as required under the Care Act 2014. This Government recognise the vital importance of co-production and working with people who draw on care and support. To ensure local authorities are meeting these duties, the Care Quality Commission are assessing local adult social care services by publishing a full report and overall performance rating for each local authority. Hillingdon has been rated as “Good” in the CQC’s recent assessment, but the report also includes feedback on areas where the CQC concluded that Hillingdon could improve.”
“Clause 3 will introduce an innovative solution to allow rare cancer patients to be contacted as quickly as possible about clinical research. The clause creates a new power to allow patient data to be shared from NHS England information systems.”
“The Government want to give patients greater choice and control over their healthcare, and rare cancer patients should have access to research if they choose. The clause also ensures that the Government will develop a bespoke registry service for rare cancers, to be delivered through the “Be Part of Research” programme—our groundbreaking research registry service provided by the National Institute for Health and Care Research—and that we will appoint a national specialty lead for rare cancers, which we will designate within the NIHR research delivery network, who will have oversight of the overall rare cancer studies portfolio in England. The Government are committed to going further for rare cancer patients, and that means making clinical trials more accessible.”
“We want to go further for patients with rare cancers, and this legislation will act to incentivise recruitment, oversight and accessibility of rare cancer research, so that NHS patients are at the front of the queue for cutting-edge treatments. Clause 1 will ensure our regulatory competitiveness. It places a duty on the Government to publish a review of the legislation around orphan drugs within three years of the Bill becoming an Act. The review will examine our legal framework and compare our approach to that of our international partners. We want the UK to lead the world in this space, as the prime destination for clinical research. Clause 2 will raise the profile of research for rare cancers by placing a new duty on the Secretary of State for Health and Social Care to facilitate and otherwise promote research in this area.”
“It is a pleasure to serve under your chairmanship, Mr Stuart. I congratulate my hon. Friend the Member for Edinburgh South West on his Bill reaching Committee stage. That is a huge achievement for any colleague, but especially for one who has served in this place for almost exactly a year to the day. The Government welcome contributions from Back Benchers, we welcome effective scrutiny from Committees, and we value the vital role that Parliament plays in holding us to account. In April, my right hon. Friend the Prime Minister announced that clinical trials would be fast-tracked to accelerate the development of the medicines and therapies of the future. Through this new drive, patients will have improved access to new treatments and technologies. We see the Bill as contributing to that ambition.”
“I congratulate my hon. Friend on the launch of the trial in her sister’s name. We do want to see more research and trials coming forward, particularly for rare cancers. She will be aware of the consortium that the Department has developed to work directly with the brain tumour community in particular, to improve the quality and number of research trials that come forward for funding.”
“I am delighted that they expressed their support on Second Reading. Clauses 5 and 6 cover the Bill’s commencement and title. The Government are fully committed to supporting the Bill through the next stages so it can become the Rare Cancers Act 2025. The shadow Minister talked about the national cancer plan, which I can confirm is being worked on. We have had over 11,000 representations on that plan, which will be published later this year, following the publication of the national 10-year plan for health tomorrow. The children and young people cancer taskforce was launched earlier this year and continues to meet, and has now ensured that young people and children’s voices are part of the taskforce.”
“For the first time, patients with a rare cancer could be automatically contacted about research opportunities that are relevant to them and offered innovative new treatments, which means rare cancer patients could have access to research at their fingertips. That is the kind of change that the Government support as part of the shift we are making from analogue to digital—one of the three shifts that will be covered in the 10-year plan that will be launched tomorrow, when more details will become clear. Clause 4 covers the Bill’s territorial extent. Due to practical and legal differences between the nations, the devolved Governments did not wish to legislate in their individual countries. Our manifesto promised to reset our relationship with the devolved Governments, and we have developed the Bill with them.”
“I should clarify that there is no regional specificity in the allocation of research funding. We welcome all funding bids for research on cancer and rare cancers from anywhere in the country, and I encourage them to come forward. The new power in clause 3 to allow patient data from NHS England information systems to be shared will allow more patients to be contacted about existing trials. Practically, it will allow us to join up data from the national disease registration service with “Be Part of Research”. As I have said, we are encouraging people to bring forward more research proposals, all of which are considered.”
“I can confirm that the overall objective of the whole cancer plan will be saving lives and reducing the number of lives lost to cancer, including rare cancers. The plan will be published later this year. It is important to note that the Bill is specific to cancer; there will be opportunities to discuss other rare conditions in the future. I thank my hon. Friend the Member for Edinburgh South West for presenting the Bill, and I pay tribute to the charities that are backing him, some of which I had the pleasure to meet recently to discuss further how the Government can better support people with rare cancers. Together, we will improve outcomes for people across our country, and I look forward to working with everybody to get that done.”
“I will not go into detail about what is in it, but—tick, tock—she does not have to wait long as the plan will be launched on Thursday morning. I look forward to working with colleagues across the House and the wider health landscape on how we deliver the plan. In that plan, they will see that children’s early years are crucial to their development, health and life chances. That is why the Government are taking a mission-based approach to raising the healthiest generation of children ever and to ensuring that every child has a healthy, happy start to life.”
“I congratulate the hon. Member on securing the debate. Through her leadership of the all-party parliamentary group for infant feeding, she is working to ensure that families across the country get the right support. I thank all hon. Members who have contributed—my hon. Friends the Members for Ribble Valley (Maya Ellis), for Altrincham and Sale West (Mr Rand), for South Derbyshire (Samantha Niblett) and for Brecon, Radnor and Cwm Tawe (David Chadwick), the hon. Members for Strangford (Jim Shannon) and for Exmouth and Exeter East (David Reed), and yourself, Madam Deputy Speaker. The number of interventions and contributions has shown how important the issue is and how deeply it is felt across the House. The hon. Member for Chichester asked about the 10-year plan.”
“Although long-term evaluation is needed to understand the full impact of the programme, some promising findings are emerging. For example, ambitious multi-layered integrated infant feeding plans have led to increased breastfeeding rates in Coventry, and local health visitor data shows an increase in breastfeeding at six to eight weeks from 51% to 57% in just 18 months. We are also helping families across the UK to access breastfeeding support 24 hours a day through the National Breastfeeding Helpline.”
“Start for Life services are helping parents to access support where they need it and in a location that suits them, whether that is their home, their family hub, a hospital setting or through the many voluntary sector organisations that have been referred to today. Local authorities are working with partners to embed local infant feeding strategies, joining up services for seamless support and tailoring them to their community, with both universal and targeted support. They are building up the workforce, investing in infant feeding specialists, delivering high-quality training and expanding networks of peer supporters. Funding is also helping to train staff to identify complex needs early such as tongue-tie, and to offer timely support.”
“As families transition from maternity services to the community, it is important that they continue to receive the support they need, and health visitors are key to this. However, we know that health visitor numbers have decreased and there is variation in the level of services across the country, but it remains a universal service, and we are committed to that. In the plan for change, we committed to strengthening health visiting services so that all families can access their support. We are investing in family hubs and the Start for Life programme, with £18.5 million this year to improve infant feeding support across 75 local authorities in England.”
“We have committed to training thousands more midwives to better support women throughout their pregnancy and beyond, and there has been an increase of over 1,300 full-time equivalent midwives in the workforce since April 2024. We will publish a refreshed workforce plan to deliver the transformed health service that we will build over the next decade. To drive forward improvement in maternity and neonatal services, we announced the launch of a national independent investigation into maternity and neonatal care. The investigation will recommend one set of national actions by December. A national maternity and neonatal taskforce, chaired by the Secretary of State, will then bring together independent experts to co-produce a national plan to drive improvement.”
“I recognise the concerns raised through the World Breastfeeding Trends Initiative report on the UK infant feeding policy landscape. Health is devolved, and I would like to commend Northern Ireland for its performance in this area, which was raised by the hon. Member for Strangford. However, we know through the report that England scores poorly, and we want to change that. Families need quality services, trustworthy information, affordable options and systems that support them, not hinder them. Midwives and maternity services play a crucial role through the perinatal period in preparing and supporting families around infant feeding.”
“I agree. The hon. Member will see in the 10-year plan and some of the investments we are making—for instance, to reduce the number of women smoking in pregnancy—that the Government recognise that. We recognise that infant feeding is critical to a baby’s healthy growth and development, and we recognise the significant benefits of breastfeeding for both mothers and babies. We are fully committed to supporting families to breastfeed should they choose to do so. We know that most mothers want to breastfeed, but many stop before they would ideally like to. While it has been positive to see many more mothers continuing to breastfeed in recent years, we know that they can face complex barriers to achieving their infant feeding goals.”
“We are considering them alongside colleagues in the devolved Governments, and aim to have a UK-wide response available as soon as possible. In conclusion, I thank the hon. Member for raising this important matter. The Government are committed to giving children the best start in life, and we do not underestimate the challenge of getting this right for families. We will continue to strengthen key services, build on good practice, and identify where we can have the greatest impact for families. Tomorrow I will meet the all-party group on babies, and I look forward to discussing these issues further with them. Question put and agreed to .”
“However, specific regulations require all infant formula to comply with robust nutritional and compositional standards, so that all infant formula sold on the UK market meets the nutritional needs of babies, regardless of the price or brand. The CMA has made 11 recommendations to the Government, with four aims: to eliminate brand influence in healthcare settings; to provide better information for parents in retail settings; to strengthen labelling and advertising rules; and to ensure effective enforcement of regulations. The Government are supportive of what the CMA is trying to achieve. We want parents to be confident enough to choose lower-priced products, and for manufacturers and retailers to compete more on price. The CMA recommendations are UK wide.”
“I have spoken a lot about breastfeeding, but we absolutely recognise that when families cannot or choose not to breastfeed, it is vital that they get formula that is safe, nutritionally complete and affordable. Infant formula regulations and Competition and Markets Authority recommendations are important, but we know that many families are struggling to afford infant formula. We welcome the report from the CMA into the UK infant and follow-on formula market. It highlighted some of the issues that the hon. Member raised, in particular by noting that families rely on brand reputation and price as a proxy for quality, often choosing more expensive products.”
“This is very much targeted through the family hub service and support for Start for Life, and through the universal health visiting offer and the National Breastfeeding Helpline we aim to offer all women who are breastfeeding the support that they need to do so. Parental leave has been touched on, and we know that supporting parents goes beyond services. Returning to work can influence how families choose to feed their babies, and in the plan to make work pay we have committed to a review of the parental leave system. As the hon. Member said, that review was launched by the Department for Business and Trade in the Chamber earlier today, and we are delighted to see that come forward.”
“I beg to move, That, for the purposes of any Act resulting from the Rare Cancers Bill, it is expedient to authorise the payment out of money provided by Parliament of: (1) any expenditure incurred under or by virtue of the Act by the Secretary of State, and (2) any increase attributable to the Act in the sums payable under or by virtue of any other Act out of money so provided. I pay tribute to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for bringing forward this important Bill. The Government support it, and are committed to making a real difference for patients with rare cancers.”
“As the hon. Gentleman said, health is devolved. I am happy to write to him with the details of how we expect this private Member’s Bill to be implemented by the devolved Governments. Question put and agreed to.”
“Friend the Member for North Warwickshire and Bedworth (Rachel Taylor), offer to give blood as an alternative to venesection. Turning a life-altering condition into a lifesaving opportunity is to be commended. I take this opportunity to thank each and every patient who is able to do so and has opted for that route. To conclude, I once again thank my hon. Friend the Member for Na h-Eileanan an Iar for bringing forward this important debate and every Member who has contributed. Let this be the beginning of a conversation about how we can best support people with haemochromatosis. The condition affects many in our constituencies, and this has been an important opportunity to highlight how we must support their diagnosis and treatment in the future. Question put and agreed to.”
“Any healthcare professional who suspects their patient may have haemochromatosis can refer their patient for testing via their local NHS clinical genomic service. As we have heard, the main way to treat the condition is venesection, which is a procedure to remove some of an individual’s blood. This may need to happen every week at first, but only two to four times a year once the condition is stable. For those who cannot have blood removed, chelation therapy is an option. This medicine reduces the amount of iron in a patient’s body. I know that the NHS Blood and Transplant service works with many patients who have genetic haemochromatosis. While some genetic haemochromatosis sufferers will not be well enough, many of these individuals are well enough, and like Lorraine, the constituent of my hon.”
“Currently, there is no evidence that a screening programme is the best way of helping people with the condition. However, the UK National Screening Committee keeps its decisions under review. It welcomes any new published peer-reviewed evidence that suggests the case for a new or modified screening programme via its annual call. Any individual or organisation can submit a topic to the UK NSC to consider a new screening programme or modification to an existing programme. Haemochromatosis is one of the most common genetic diseases, and genetic testing is available. For patients in England who show unexplained iron overload suggestive of hereditary haemochromatosis, genetic testing is available at one of the seven genomic laboratories.”
“After consideration, it recommended on balance against a national screening programme at that time. That was because although a faulty hereditary hemochromatosis protein gene—the HFE gene—is known to cause iron to build up, that does not happen to every person with the faulty gene. Screening could therefore result in people being told that they have a condition that would not go on to impact their lives, which may cause undue worry. Screening would identify people who may never experience symptoms. A screening programme would be most relevant for this condition if pre-symptomatic treatment showed significant improvements in an individual’s prognosis. However, there is limited evidence on whether treatment is more effective in individuals without symptoms compared with those who have symptoms.”