Cancer Care

Jim Shannon Excerpts

Tuesday 14th March 2023 Westminster Hall

[Nicola Richards]

I totally agree. Any statistics and data that we can gather will help us to improve services and understand the landscape when it comes to who is affected and when cancer can recur, and it is important that we take all that into account. It is important to have a long-term plan for making our cancer services fit for what is to come. They need to cope with the increased demand, and deliver the world-leading outcomes that patients deserve.

Last year, the Government declared war on cancer. They announced a 10-year plan to ramp up our cancer services and make them the world leader that they ought to be. However, we now know that our plans for cancer care will become part of the five-year major conditions strategy. Although it is clearly important to take a holistic approach to caring for people with life-threatening diseases, there is no killer like cancer. We must ensure that our strategy addresses the key elements of what would be a world-leading cancer care system: research, prevention, diagnosis, treatment and care. I will first discuss one of the most important elements that we need addressed in the strategy: diagnosis.

Finding cancer early and commencing treatment is key to survival rates. For instance, 90% of people diagnosed at the earliest stage of bowel cancer will survive for five years or more, compared with just 10% of those diagnosed at the latest stage. Furthermore, almost everyone diagnosed with breast cancer at the earliest stage can receive treatment and live for five years or more, whereas only three in 10 women diagnosed at the latest stage survive for more than five years. The picture also varies by region. Unfortunately, if someone lives in the west midlands, they are statistically less likely to survive for five years or more after being diagnosed with lung cancer than those across England on average, and all combined mortality rates are significantly higher than average, too. Those stark figures hammer home the need to make sure that we detect cancer and commence treatment at the earliest opportunity.

I welcome the commitment from the Secretary of State for Health and Social Care that the strategy will shift our model towards the early detection and treatment of diseases. I also welcome the ambitious target set to diagnose 75% of cancers early by 2028. I look forward to reviewing how the strategy will address the need for greater capacity in the breast screening programme, ensure that all women at elevated risk of breast cancer are included in the national breast screening programme, and raise the proportion of all cancers that are diagnosed early; at present, just under 60% are.

Of course, it is not enough to detect cancer in its earliest stage. We also have to make sure that people receive treatment promptly, especially after urgent referrals. Much work still needs to be done in that area. Only 54.5% of people starting their treatment after an urgent referral do so within the 62-day target, and around 2,100 people have waited more than 104 days to begin their treatment. In my constituency of West Bromwich East and the wider Sandwell area, there is a mixed picture when it comes to meeting those important targets. It is welcome that our local health service met the two-week target for referring urgent suspected cancer cases to a specialist. However, like much of the rest of the country, other targets, including the 62-day standard, were not met. When I compare those statistics with the survival rates that I mentioned, it is obvious that we have to do more to ensure that people start treatment as early as possible. A critical element of that is ensuring that cancer services are sufficiently well staffed.

It would be remiss of me not to honour the people who work day in, day out, providing care for cancer patients across the country. We have all relied on them to care for us and our loved ones, in sometimes the most desperate circumstances, and to provide comfort for us in our time of need. I put on the record my thanks to the Mary Stevens Hospice in the constituency of my hon. Friend the Member for Stourbridge (Suzanne Webb); it looked after my mum in her last days, and held a last-minute wedding blessing for me and my now husband at my mum’s request.

We need to address the shortfalls in the workforce that are affecting our success in improving cancer outcomes. We have a shortfall of both clinical oncologists and radiologists, who are vital to the effort to diagnose and treat cancer patients in the earliest stages. It is so important to tackle the workforce issues with long-term plans to recruit and train the staff we need to tackle cancer properly. I welcome the Government’s NHS long-term workforce plan, which commits to addressing those and many other issues across the NHS workforce. I ask the Government to ensure that the necessary funding is provided to meet those commitments.

On the major conditions strategy, I hope that the Government will take into account the wealth of views expressed by Cancer Research UK and other key organisations in the cancer community in last year’s call for evidence, and ensure that the strategy lays the groundwork for a longer-term strategy on cancer that also tackles inequalities.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for securing this debate. Four in 10 cancers across the UK are preventable. We all know that. Action to prevent cancers will save lives. Northern Ireland—this is not the responsibility of the Minister, by the way—has no smoke-free target. We need a strategy to stop people smoking, to encourage young people not to start smoking, and to fund research and support programmes. Does the hon. Lady agree that we must have a UK-wide smoke-free target? Despite health being a devolved issue, we have to be on the same page to create a national target to prevent some of the deadliest cancers that so many people suffer from and lose their lives to. She is very much committed to that, as am I.

[Nicola Richards]

I completely agree. It is important that we do wider work around prevention, so that when someone who has a history of cancer in their family presents themselves to the NHS, they are taken seriously and their health is evaluated at the earliest stage. That could save the NHS a lot of money and the individual and their family a lot of pain and suffering.

In my constituency of West Bromwich East and the wider Sandwell area, we have worse health outcomes than other areas of the country, as I mentioned. Combined mortality rates for all cancers are higher in the west midlands than the English average. That situation must improve. We have a fantastic opportunity to level up healthcare in our area through the new Midland Metropolitan University Hospital, which will open to my constituents in West Bromwich in the coming year. It is one of a number of new hospitals that this Government are delivering to help level up healthcare. It is vital that we properly equip new and existing hospitals, so that we can tackle waiting times and improve outcomes for patients.

One of the more high-tech solutions, of which we need to see more, is radiotherapy. I recently attended an event in Parliament hosted by Radiotherapy UK and learned more about this form of treatment, which is known to be extremely cost-effective and less invasive. It costs around £3,000 to £7,000 to cure a cancer patient using radiotherapy. West Bromwich Albion legend, Bryan Robson, also attended the event in support of radiotherapy, and I had the opportunity to have a brief chat with him to discuss how the treatment saved his life. During the event, I signed the declaration asking for more action to tackle waiting times and in support of radiotherapy.

The major conditions strategy is an opportunity to refocus on this type of treatment and to ensure that it receives the necessary investment, so that many more people around the country have the option of radiotherapy to treat their cancer. Although having world-leading facilities is vital, they must be backed up with the world-leading strategy we need, and staffed with the people who provide the excellent levels of care that we know our workforce can provide when they are given the right tools. I therefore welcome the Government’s plans to ensure that we tackle the health inequalities between our regions, and I look forward to hearing more about what that means for cancer patients across the country.

I welcome the positive steps that we have already taken to improve cancer care in this country. Evidence suggests that countries with the best cancer outcomes are those that adopt long-term cancer-specific strategies. I therefore hope that the major conditions strategy will commit to improving outcomes for cancer patients and their families, as well as paving the way for a long-term strategy on cancer care that will make our services the best in the world.

Patients with Rare Diseases

Jim Shannon Excerpts

Thursday 9th March 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered the matter of patients with rare diseases.

I thank Members for attending this afternoon. The 3 o’clock debate is often referred to as the graveyard shift, simply because there is no pressure on us in the main Chamber, so most Members have probably decided to make their way home. However, I am very pleased that some Members have made it their business to stay, so I thank them for that.

I am pleased to see the Minister in her place—she knows that I am fond of her. She always responds to my questions, as she did on Tuesday during Health questions. I am pleased as well to see the shadow Minister, the hon. Member for Enfield North (Feryal Clark). She is looking bright and breezy, given her condition. She does not have long to go now, but I am pleased to see her and we think of her often.

I have always been interested in rare diseases. In the Northern Ireland Assembly, I was a member of the Northern Ireland rare disease partnership. We have Patrick Toland from Northern Ireland in the Public Gallery today. I am pleased to see him and other members of rare disease groups. I will refer to them during my speech.

This subject first came to my attention through a constituent who told me that she had a rare disease. That is how I learnt about its prevalence and the numbers of people with rare diseases. I am the Democratic Unionist party’s health spokesperson, so I am pleased to be in a position to raise the issue of rare diseases in the best place—right here in Westminster Hall with a member of the Government, the Minister. Other representatives are here to do the same thing.

I have been contacted by many people who have asked me to highlight their cause. I will attempt to highlight as many as I can while still doing them justice. Rare diseases might simply be numbers for many of us, but for the families and the individuals, they are everything in life. We will remember that when we mention the figures. As some might be aware, 3.5 million people in the UK will be affected by a rare disease at some point in their lives, and 95% of rare diseases currently lack an approved treatment. However, there is hope on the horizon for the patients living with these devastating diseases—we will hear examples from other Members as well—with an increasing number of gene therapies.

I am pleased to see in the Chamber the chair of the all-party group on rare, genetic and undiagnosed conditions, the hon. Member for Blaydon (Liz Twist). She has much knowledge and brings a depth of detail and evidence to this debate. I congratulate her on the work that she does in the APPG, and I look forward to her contribution.

When it comes to gene therapies and advanced therapy medicinal products, many of which target rare diseases, there is the potential for those therapies to become a reality. Ultimately, we are always seeking that reality. The 62 ATMPs that are expected to be launched in the UK between 2023 and 2027 give us hope and some confidence that therapies and medications will be available for those with rare diseases. There is a need to act now to prepare the UK access and reimbursement landscape and to ensure that the system is ready to capitalise on the opportunities presented by the therapies. We look to the Minister—no pressure—to understand our preparedness and tell us what steps will be taken to prepare the NHS for the changes on the horizon.

I know that the Minister is responsible for England and that health issues are devolved to Scotland, Wales and Northern Ireland. However, I will ask towards the end, when we summarise our thoughts, that the Minister and the devolved Administrations work together. That is really important, because we can benefit from one another’s knowledge of the strategies here and the strategies in the regional Administrations.

The Neurological Alliance, which is a network of 80 organisations that work together to improve neuro services and transform the quality of life for people with neurological conditions, reports that one in six people in the United Kingdom of Great Britain and Northern Ireland live with a neurological condition. One of those is a rare neurological condition—an acquired nerve condition—called Miller Fisher syndrome. I ask about that because it has been brought to my attention by some of my constituents back home. Miller Fisher syndrome, or MFS, is a rare acquired nerve disease, first recognised by James Collier in 1932 as a clinical triad of ataxia, areflexia and—I will get tied up in these words—ophthalmoplegia. It was described in 1956 by Charles Miller Fisher as a possible variant of Guillain-Barré syndrome. I suspect that we may know that from the past.

MFS is rare, so like many rare diseases, it is often difficult to diagnose. It affects one to two people per 1 million each year. In MFS, the immune system attacks the nerves, which causes the demyelination of the nerve fibres in the brain and spinal cord. Most patients with MFS have a unique antibody that characterises the disorder. Patients suffer weakness of the eye muscles, blurred vision, impaired limb co-ordination, unsteadiness of gait and a loss of tendon reflexes. Other symptoms may include facial paralysis, difficulty swallowing, limb weakness and respiratory failure. With Miller Fisher syndrome, a lot of complex issues hit the body all at once.

MFS is a rare condition for doctors to encounter, so the presenting symptoms can initially lead to a list of different possible diagnoses. It is not possible for every doctor who is confronted with those symptoms to know exactly what the condition is. I will give another example shortly that shows that it sometimes takes days before those with the knowledge of rare diseases can diagnose which one it is. The presenting symptoms of ataxia and ophthalmoplegia can be confusing for the consultant and can suggest signs of motor neurone disease or, sometimes, multiple sclerosis. I have had many friends over the years who have had MS, and I had a very good friend who, unfortunately, died of motor neurone disease. I know some of the actions and symptoms that come from that.

One of my members of staff developed MFS in 2015. She reported the experience of the early onset of MFS as a gradual loss of control of the arms and legs in the days before, severe back pain, and a loss of feeling in the fingers and toes. She recalls, just before the onset of the condition, staggering into accident and emergency at the Ulster Hospital in Dundonald, which is our main hospital, looking like someone who was highly intoxicated —it looked like that, but it was not true. She was unable to walk in a straight line, and she struggled to remain upright. Just hours later, she was unable to walk or stand, and total paralysis set in over her whole body in a matter of hours. Obviously, that was incredibly worrying—not knowing what is wrong, but knowing that she could not blink. That gives hon. Members an idea of the complications.

It took several days for a diagnosis to come through, after discussions between the consultant specialist and researchers at Queen’s University Belfast, which does exceptional work in diagnosing and trying to find cures for rare diseases. My staff member recalls how, in the early days leading up to her diagnosis, there were discussions about MS or motor neurone disease, because doctors thought that her symptoms indicated that that was what was wrong. That was very frightening for her. Obviously, to think that she had either of those would be frightening enough, but when doctors looked, they realised that it was neither of them. Anyone would be desperate to know what on earth is happening to their body, and why they are unable to control any of their actions.

The good news is that the condition is rarely fatal—one of the few benefits. However, the most serious aspect is that patients can develop respiratory failure, and may require intubation in the intensive care unit. Awareness of rare conditions such as Miller Fisher syndrome needs increased focus, because it has a relatively sudden onset. It can happen very quickly, usually after pneumonia or a respiratory illness, which can trigger some of the problems. The patient does not know what is happening to them, other than that their body is suddenly grinding to a halt. They cannot walk, feel their hands or feet, swallow or see properly. It is as if their whole body is just shutting down; it is incredibly worrying.

Awareness and information is vital so that consultants may diagnose the condition faster and treatment can be administered. The advantage with MFS is that, once identified, it can be treated very effectively with immunoglobulin transfusions leading to a full recovery. A demyelinating condition such as Miller Fisher syndrome strikes without warning and is very frightening to experience; sufferers do not know what is happening, and they worry about what the future has in store for them.

It is vital that the Neurological Alliance Of Scotland, the Wales Neurological Alliance, and the Northern Ireland Neurological Charities Alliance are adequately resourced to collect the evidence and conduct the research needed to create real change throughout this United Kingdom of Great Britain and Northern Ireland. That way, there will be the support for the one in six people who experience rare neurological conditions such as Miller Fisher syndrome.

My question to the Minister is one that I often ask, but it is very important to do so. When it comes to research, what money are the Government setting aside for it? We are greatly encouraged by the money that is spent on research, but we want to see more—not for the sake of spending money but to find cures for diseases. When we look at the universities across the United Kingdom of Great Britain and Northern Ireland, Queen’s University in Belfast is one of the leading examples when it comes to trying to find cures for diseases. I know that is also replicated in Scotland, Wales and across the whole of England.

Another rare disease that I would like to raise awareness of is pemphigus. There are two major forms of pemphigus, and they are categorised based on the layer of skin where the blisters form and where the blisters are found on the body. The type of antibody that attacks the skin cells also helps to define the type of pemphigus. Pemphigus foliaceus is less common and only affects the skin. The blisters form in upper layers of the epidermis and may be itchy or painful. With pemphigus vulgaris, which is the most common type in the UK, blisters form in the mouth and other mucus surfaces, such as the nose and elsewhere, as well as on the skin. They develop within a deep layer of the epidermis and are often very painful.

Pemphigus vulgaris is by far the most common variant of pemphigus and even this type is rare, but it leaves lasting effects. We are discussing rare diseases that inhibit the ability to have a normal life—we are here to talk for those people. Cases of PV in the UK have been noted to be rising, and it is estimated to be found in 0.68 per 100,000 in the population. It is a rare disease that is unfortunately becoming a regular occurrence. The incidence of this strain is higher in women and in older age groups. Again, those are a category of people who need help now.

There was a time when PV was almost impossible to treat. Deaths were recorded as recently as 30 years ago, with a rate of 79% of sufferers dying within a year of diagnosis. That was before the advent of corticosteroids, which now effectively treat PV and bring it under control. There is an ethnic group aspect to the prevalence of PV; although it is seen in all races, it is noted to be found more frequently in Asian populations and in Ashkenazi Jews. PV may occur at any age, but is mostly seen in women between the ages of 30 and 70, and in adolescence girls are more often affected than boys. Again, we have moved forward and research has delivered. We should welcome the fact that a medication has been found that means that people do not die from it.

Pemphigus, like Miller Fisher syndrome, is associated with other autoimmune diseases and has been reported to have an association with myasthenia gravis. Normally, the immune system protects the body from infection and disease. At present, researchers do not know what causes the immune system to turn on the body’s own proteins. There is something wrong; we need to find out what it is. Evidence suggests that genetic and environmental factors may be involved. An environmental factor may trigger pemphigus in people who are at risk because of their genetic background. That is why it occurs more in those of an Asian background. In rare cases, pemphigus may be caused by a tumour or by certain medications that harm the body internally.

No one knows what causes pemphigus, but it is known that, like many other related diseases, there is a genetic fault at the start and a trigger, such as stress, another illness or a drug used to treat another condition, causes it to erupt. I use that word on purpose, because erupt is what it does—it comes on almost like a volcano and changes the person’s whole life. It is possible also these diseases tend to appear in later years because the immune system weakens with age.

A cure for these diseases is unavailable today, but they can be treated successfully. Remission can be achieved from pemphigus with either no ongoing treatment or a very small maintenance dose of the drug that manages it. Those are some of the steps forward. It is not cured, but the person can learn to live with it.

Support groups such as PEM Friends offer information and advice to people living with pemphigus. I ask the Minister to engage with PEM Friends, clinicians and researchers to gauge what steps can be taken to ensure proper funding is in place to address what can be a disfiguring disease and to work to find an effective cure. That is my second ask.

Rare diseases action plans have been published in Scotland, Wales and Northern Ireland. There is a framework in place, and I believe we can work better together on these matters. I said that at the beginning, and I still believe that. We can learn from each other, share what we have learned and all help each other across this great United Kingdom of Great Britain and Northern Ireland.

One in 17 people across the UK will be affected by a rare disease at some point in their lives, including approximately 110,000 people in Northern Ireland alone—wow, that is some figure! There is a large community that often feels lost, lonely, and isolated because of the rarity of their condition, which even their health professionals often have not heard of before. It is the nature of things that GPs do not know every rare disease.

The Northern Ireland Rare Diseases Partnership is a key stakeholder in the Northern Ireland rare diseases action plan. It highlighted its input into that important document, which could lead to great improvements for the Northern Ireland rare disease community. It stated that progress and work at speed are greatly hindered by the fact that that important action plan is unfunded. I ask the Minister: can discussions take place? Can we work together, fund the research together, and co-operate so that we all benefit from the research and the rare diseases action plans?

Let me leave Members with some statistics. Thirty per cent. of children diagnosed with a rare disease will not see their fifth birthday—just let that sink in. Rare diseases take an average of five years to diagnose, and only 5% of the 8,000 rare diseases have treatments.

Time is beating me. I have not raised the need for funding for Duchenne disease, including for research into the SMART suit. People will ask, “What’s a SMART suit?” Before I left my hotel, there was a mother on television telling her story. She is from London, I understand. Her son sang and played the guitar, but as he got older he unfortunately lost power in his arms. That lady was able to find someone to fund a solution: she got, I think, £1.25 million of lottery funding. The greatest wish of that wee boy of 14 was to play the guitar and sing at Woodstock. When someone loses upper body strength and function, they lose the ability to do the little things that are really the big things, like putting their hand up in class, feeding themselves and hugging their mum. However, a wearable device that will help to restore arm function—the SMART suit—is currently being developed, after being perfected by that lady for her son, with help from lottery funding and in conjunction with the University of Liverpool.

I have not been able to go into the plight of those with muscular dystrophy or even touch on Huntington’s disease. I will be in touch with the Minister separately to take those issues forward.

There is a common theme across a number of organisations that needs to be highlighted, as summarised by one of the bodies I have been in touch with, Takeda. Individuals and researchers from Takeda are in the Public Gallery today. First, there must be an improvement in the quality of care for people living with hereditary angioedema in order to bring UK standards in line with international best practice. A postcode lottery is sadly a reality for many, and I was pleased to hear thoughts on this at a meeting yesterday. With the quality of care determined by where a patient lives, variation continues across the HAE patient pathway.

Secondly, there must be an improvement in the time to diagnosis. The path to an accurate diagnosis can be a long and convoluted journey, which not only is an unpleasant and anxiety-inducing experience for a patient living with a rare disease or condition, but can delay access to the appropriate disease management, unnecessarily worsening the disease state. Unfortunately, it takes an average of 6.2 years to diagnose.

Thirdly, there must be an improvement in healthcare professional awareness. Rare diseases may present with multiple symptoms and healthcare professionals may not be familiar with a rare disease, which can lead to a lack of referral to the appropriate specialist. There is room for improvement for clinical professional awareness of HAE in all healthcare settings, particularly in A&E—just one example of where that extra focus is needed—so that patients presenting with acute and potentially life-threatening attacks can receive the most appropriate care when they need it most. If the Minister needs any more information, I am sure the organisation that is present would be more than happy to press for improvements through the Minister to make life better.

We also need an improvement in access to specialist care. Living with a rare disease often involves receiving complex care from multiple specialities. However, people living with HAE do not always have the access to specialists they need. I think we should make a plea for them. Some of them are here in the Public Gallery today, so it might be helpful to make a comment along those lines. That is particularly the case for access to psychologists, so that patients can manage the mental health impact of living with their condition. Very often, when it comes to physical problems, mental problems are not far behind. The pressure of life, deteriorating health and family, work and financial pressures all make a difference.

In addition, we need an improvement in access to treatment. Of the orphan medicines licensed in Europe between 2017 and 2020, only 71% are fully reimbursed through the NHS in England, and only 64% in Scotland. There are licensed treatment options aimed at minimising the number and the severity of HAE attacks, which can significantly improve quality of life and control of disease.

Looking at what can be done to help people with rare diseases is what today’s debate is about. We very much look forward to the response from the two shadows, the hon. Members for Enfield North and for Edinburgh North and Leith (Deidre Brock), and particularly from the Minister.

I understand that we cannot fund everything as we would like—if only we could—but there is more we can do. I urge us in this place, and the Minister, to do just that. We can make GPs more aware and ensure that there is training to recognise and cross-discipline information available to help to find that diagnosis. There are families who can be helped by knowing they are not alone; there are others going through the same thing, looking to connect. We can look at funding and deals with pharmaceutical companies; there are many out there who wish to help, and seek just that wee bit of encouragement and partnership with Government to take that forward. We must be determined to advance in any way we can. That is my desire, and I believe it is the desire of us all, including the Minister. We look to her, and to the Government, to lead the way on making progress with rare diseases.

I will conclude by saying that I believe we have something special here that we need to take forward. With that in mind, I hope that we can have good contributions from the shadow Ministers and my friend, the hon. Member for Blaydon, who chairs the APPG on rare, genetic and undiagnosed diseases. We look forward to the Minister’s response, because it will give encouragement to those who are here today.

--- Later in debate ---

[Deidre Brock (Edinburgh North and Leith) (SNP)]

It is a pleasure to serve under your chairship, Mr Sharma. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. I was certainly not familiar with some of the details that we have heard today. I look forward to the Minister’s response.

A rare disease is defined as a condition that affects fewer than 1 in 2,000 people, but that statistic in isolation is misleading. It is estimated that over 412,000 people in Scotland have a rare disease—more than one in 10. Rare diseases might be individually rare, but collectively they are not uncommon. The hon. Member for Strangford reminded us that we must not look at the statistics simply as a series of numbers, because those numbers represent people and the family members around them—a very important point. He shared details of conditions that he is familiar with, and some that he is personally acquainted with through colleagues.

The hon. Member also spoke of the importance of the four nations working together. He will be pleased to hear that the Scottish Government worked closely with the other devolved bodies and the UK Government to produce the new UK rare diseases framework, which builds on the 2013 UK strategy for rare diseases. He is always an optimist, and he reminded us that there is hope, given the work being done on these issues. He brought our attention to the smart suit, which I had not been aware of. That sounds like a really positive development, so I look forward to hearing more about that and the differences it can make to the people who will be able to make use of it.

The hon. Member for Blaydon (Liz Twist), chair of the APPG on rare, genetic and undiagnosed conditions, spoke of the challenges for those with rare conditions, and described how they wait for years for a correct diagnosis. She spoke about the lack of recognition and diagnosis, which leads to further difficulties accessing vital support for housing and benefits—a really important point.

[Jim Shannon]

I thank the hon. Lady for making that point. I mentioned that it takes, on average, almost five years for a diagnosis. I am sure she will ask the Minister to get the diagnosis timescale reduced to a manageable period, because it is unacceptable to have to wait five years.

[Deidre Brock]

It is indeed unacceptable. I am sure the Minister will address that point. I thank the hon. Member for that intervention.

The hon. Member for Blaydon mentioned the emotional strain experienced by those with rare conditions and their families. Again, that was an important point. She also highlighted the need for longer-term funding for research and development. I hope the Minister will be able to give us good news on that front, because that is a crucial issue. Short-term funding dries up and leaves researchers high and dry when they could be progressing a method of addressing the conditions that people suffer from, which is what we would all like.

Rare Disease Day, marked on the last day of February each year, brings the rare disease community together to advocate with one voice, and to raise awareness of the impact of these often overlooked or unknown conditions, most of which do not have large advocacy groups or funding grants. Today marks an important opportunity to draw attention to them in Parliament, so I again congratulate the hon. Member for Strangford on securing the debate.

The long-term goal of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care, and social opportunity for people affected by a rare disease. As hon. Members have highlighted, rare diseases are often life-threatening or chronically debilitating, and can have a wide-ranging effect on a person’s life, impacting education, financial stability, mobility and mental health. As the hon. Member for Strangford said, 75% of rare diseases affect children, and more than 30% of children with a rare disease die before their fifth birthday—a tragic statistic that must strengthen our resolve to improve our knowledge, understanding and treatment of rare diseases.

As has been pointed out, for those living with a rare disease, a diagnosis is crucial to understanding how they can move forward with their life, treatment and prognosis. However, sadly it takes on average almost five years to receive an accurate diagnosis of a rare disease. It is therefore vital that all those living with a rare disease get the right diagnosis faster, and can access co-ordinated care and specialist treatment. That is a core objective in the Scottish Government’s rare disease action plan, published in December. It sets out how the Scottish Government will implement the priorities of the UK rare diseases framework. It was developed in close collaboration with the rare disease community to ensure that their needs are appropriately reflected across wider policy on, for example, mental health and social care.

The plan includes a number of objectives on ensuring that patients receive a faster diagnosis, including through genomic testing, which the Scottish Government are supporting through the implementation of the Genome UK strategy. The Scottish Strategic Network for Genomic Medicine was recently established to advise and make recommendations on genetic testing availability. It will also support the planning for future capacity in areas such as whole genome sequencing and expanding our whole exome sequencing services. Later this year, Scotland’s first ever genomics strategy will be published and backed by significant investment, with £5 million committed for 2022-23 alone.

As the hon. Member for Blaydon mentioned, newborn screening has a vital role in early diagnosis of some rare diseases and the initiation of early treatment to reduce complications. The Scottish Government are represented on the UK National Screening Committee, which makes its recommendations to all four health Departments across the UK. Through Scotland’s rare disease implementation group, those living with a rare disease will be involved in any future screening considerations, and given information so that they understand how screening impacts them and their families.

Another important commitment is the planned expansion of the Congenital Conditions and Rare Diseases Registration and Information Service for Scotland. That includes a national register that collects and holds information about babies in Scotland with a major structural or chromosomal condition or recognised syndrome. The register will be extended to collect and hold information on other rare diseases. Access to better data on rare diseases and making use of digital tools can help clinicians to make better informed decisions on care, prevent disease and allow better access to research and clinical trials. As has been mentioned, there are over 7,000 different rare diseases, so it is not possible for healthcare professionals to receive comprehensive training on every condition. It is therefore important that they are aware of rare diseases more broadly, and are more alert to considering them.

The Scottish Government are working with NHS Education for Scotland to embed more formal education about rare diseases in the training for healthcare professionals. In addition, information on rare diseases on NHS digital platforms will be improved, both for those diagnosed with a rare disease and for healthcare professionals.

Finally, the action plan sets out steps to improve the co-ordination of care, so that people living with rare diseases will have fewer wasted appointments, will benefit from the expertise that is available through multidisciplinary care, and will get care that is better tailored to their needs. That includes improving access to treatment and drugs, building on the ultra-orphan medicines pathway, which is improving access to medicines for rare and end-of-life conditions.

The Scottish Government are establishing a national care service to ensure that Scotland’s social care system consistently delivers high-quality services to benefit many people living with rare conditions. That is made possible by record funding of more than £19 billion for health and social care in the recent Scottish Budget, which represents more than £1 billion of new investment. I agree with the hon. Member for Strangford that it is imperative that we all continue to work across devolved and reserved areas to generate change for those living with rare diseases, their families and their carers. No one should be made to feel helpless or invisible because they have a rare disease.

--- Later in debate ---

[The Minister for Social Care (Helen Whately)]

I thank the hon. Member for Strangford (Jim Shannon) for securing today’s important debate on rare diseases; it is always a great pleasure to debate these issues with him. He is so good at raising health issues that otherwise might not be talked about in this place. As he often does, he covered a huge range of things in his speech and very effectively brought the situation to life with personal stories of people he knows and patients. When he says to me that there is no pressure, I am not sure that he entirely means what he says, but he does it in an extremely friendly way.

As the Minister with oversight of rare diseases, among other things, in the Department for Health and Social Care, I welcome the pressure and the interest that the hon. Gentleman and other Members of Parliament have shown in this issue. He made the point, as did others, that rare diseases are rare but collectively common, especially among children, which, very sadly, leads to short lives for some. During the course of my speech I will mention many of the things that he raised this afternoon.

It was good to hear too from the hon. Member for Blaydon (Liz Twist), who is very effective in her role as chair of the APPG on rare, genetic and undiagnosed conditions. She spoke about some of the problems for people with rare diseases, including potentially waiting a long time for a diagnosis, the difficulty in accessing treatments, mental health challenges, and difficulties with co-ordination of care. She also mentioned the importance of the screening of research, and she spoke about access to the innovative medicines fund. Again, I shall pick up on several of those points this afternoon.

Just last week, on 28 February, we marked Rare Disease Day. On that day, we heard first-hand stories of the huge impact of rare diseases on people’s lives, and many of those stories have been echoed today. Some of the challenges facing people with rare diseases are unique and personal, but many others are shared by the 3.5 million people across the UK who make up this diverse and resilient community. The Government are committed to overcoming the challenges in order to secure a better future for all of those living with rare diseases.

The 2021 UK rare diseases framework embodies our commitment to this issue. The framework sets out our vision of how to improve the lives of people with rare diseases through four vital priorities: helping patients get a final diagnosis more quickly, increasing awareness among healthcare professionals, better co-ordination of care, and improving access to specialist care, treatments and drugs—many of the things that have been mentioned during the course of the debate.

The framework was established thanks to the National Conversation on Rare Diseases survey, which received thousands of responses from the rare diseases community about the issues that matter most—the same issues that we have heard about today. These continue to drive forward our focus on UK-wide improvements, putting patients’ voices at the heart of decision making and the policy development underpinning all our work.

To deliver on our ambition, all four nations have now published rare diseases action plans, which set out how they will deliver the aims of the framework in ways that work for the specific populations and healthcare systems of each nation. I was pleased to be able to publish England’s second rare diseases action plan last week, on Rare Disease Day. This publication allowed us to reflect on some of the progress made during the last year.

The hon. Member for Strangford raised the case of his colleague who developed Miller Fisher syndrome and the experience she faced in receiving a diagnosis. It sounded unbelievably frightening for her—going into hospital with those symptoms and the several days she spent waiting for a diagnosis, hearing people around her talking about all the possible things she might have. I was very glad that she was diagnosed, and I hope she has made a good recovery. That case demonstrates the known problem that rare diseases can be hard to diagnose.

In our latest action plan, we report on some of the progress made on diagnosing rare diseases. Genomics England has developed a clinical research interface, which has helped identify over 1,000 new complex diagnoses for people with rare diseases. One illustration of the real-world impact of those developments is the 19 new diagnoses of Rett syndrome in 2022. Rett syndrome is a debilitating rare condition found in children that can be complex to diagnose. Those new diagnoses have helped to explain symptoms and enabled children and their families to access care.

The hon. Member for Strangford also highlighted the need for awareness of rare diseases among healthcare professionals to avoid delayed diagnosis and treatment. Over the last year, we have also made progress in increasing awareness of rare diseases. For example, Health Education England has developed GeNotes, a set of innovative educational resources on genomics and rare diseases, which will help put information at the fingertips of healthcare professionals. We continue to take steps towards improving co-ordination of care—addressing the point that the hon. Member for Blaydon made—through the roll-out of a toolkit for virtual healthcare consultations. This helps people with complex, multi-system rare diseases access multiple specialists on one call without needing to travel.

On treatment, significant progress has been made in improving access to specialist care, treatment and drugs. The hon. Member for Strangford rightly highlighted the emerging potential of cell and gene therapies for treating some rare diseases. The innovative medicines fund was launched by NHS England and NICE, to fast-track the most promising, cutting-edge medicines to NHS patients. Together with the early access to medicines scheme and the innovative licensing and access pathway, this will support early access to novel treatments. I assure the hon. Member for Enfield North (Feryal Clark), who asked about it, that the innovative medicine fund is open for applications for treatments for rare diseases. We also continue to monitor access to high-cost treatments for rare diseases across England, taking steps to ensure equal access to treatment across the country.

As the many stories shared today have highlighted, there is still much more to do. That is why England's second action plan sets out 13 new commitments to ensure everyone living with a rare disease gets the treatment, care and support they need. That includes a greater emphasis on co-ordinated access to specialist health and social care, including mental health and special educational support. Again, that addresses some of the points made by the hon. Member for Blaydon.

The hon. Member for Strangford raised the impressive research that has led to the development of the smart suit, helping young people with Duchenne muscular dystrophy maintain the use of their arms. It is truly an exciting and wonderful thing to talk about. The 2023 action plan also emphasises the importance of research to translate scientific breakthroughs into cutting-edge diagnostics and treatments. In August, we announced £12 million of funding to support the UK rare disease research platform, which will accelerate the understanding, diagnosis and treatment of rare diseases. A £790 million investment from the National Institute for Health and Care Research in biomedical research centres will also support rare disease research.

[Jim Shannon]

I am very conscious, Minister, that my knowledge of that smart suit simply comes from watching BBC 1 before I left the hotel one morning. It was a mum who, on behalf of her 13 or 14-year-old son, managed to get lottery funding of £1.25 million. She was the lady who developed the smart suit; she is not just a mum, but obviously much more, as she was able to do that. The Minister may not know, but could she come back to us on whether, now that it has been developed and the plans for the smart suit are there, it is possible that other people with Duchenne muscular dystrophy could also take advantage of it?

[Helen Whately]

As the hon. Member described, it is fantastic that a mum who saw the problem and the opportunity came up with a way of helping. I will have to write to him to answer his question. I assure him, and everyone present, that we will take further steps to make it easier for the rare diseases community to participate in research. That is exactly the point. It is very important that those most affected—the individuals and their families—are involved in research and innovations, such as the one the hon. Gentleman described. We will continue to improve the use of securely held national datasets in research.

Our new plan seeks to reduce the health inequalities experienced by people living with rare conditions. The hon. Member for Strangford spoke of pemphigus vulgaris and its greater prevalence among some ethnic groups. That is one aspect of health disparities, but health disparities can be faced by all people living with a rare disease when they seek to access the services they need, and we aim to address that. Through NHS England’s Core20PLUS5 framework, we will help integrated care systems to address the health inequalities faced by people living with rare conditions.

Similar efforts are under way in all four nations of the UK. Although each nation is taking a distinct approach through its action plan to best meet the needs of its healthcare system and population, we continue to work closely across the four nations to ensure that we learn from each other.

I assure the hon. Member for Strangford that I share his views about the importance of co-operation across the UK on rare diseases. The rare diseases advisory group at NHS England has membership from all devolved nations to ensure that it identifies and seizes opportunities for collaboration. Patients can move between parts of the UK to access specialist services.

The hon. Member for Blaydon mentioned the newborn heel prick, or newborn blood spot screening programme, and asked whether we could screen for more conditions, specifically spinal muscular atrophy, or SMA. We test for more than 30 rare conditions during pregnancy and the newborn period, and nine conditions via newborn blood spot screening. There is a good reason why we screen for fewer conditions in the UK than in other countries: it is because we believe that we have a more rigorous approach to evaluating the benefits, and also potential harms, of screening than other countries.

The 2022 rare diseases action plan committed us to establishing a blood spot task group to further develop the evidence base for newborn blood spot screening. The UK National Screening Committee has since established the blood spot task group, which is working to improve the evidence available to the screening committee when considering the screening programmes to be added to the blood spot.

--- Later in debate ---

[Jim Shannon]

May I say a big thank you to everyone for their contributions? I was greatly encouraged by them. The hon. Member for Blaydon (Liz Twist) understand the issues well and has great knowledge of rare diseases, which is why she is the chair of the APPG on rare, genetic and undiagnosed conditions. The heel prick seems a very simple solution, and the Minister said she is prepared to review that. We take encouragement from her response; that is something that could be done easily.

The hon. Lady also referred to care co-ordination for learning and physical disabilities, and she gave the example of her constituent, Blessing. Care is so important because the whole family is part of the package. She referred to R&D—we all did, because we all recognise its importance; so does the Minister, to be fair. The Government have committed £12 million to that, so that is good news.

The hon. Member for Edinburgh North and Leith (Deidre Brock) gave a Scottish perspective. We often hear that, and it is important, because we all see the great benefits of the four regions working together. We all included that in our speeches. She referred to the smart suit—it is incredible what one lady could do. She also referred to the Scottish genomics strategy and the financing for it. That is an example of where Scotland leads the way—other hon. Members will have to forgive me, but it often does. She referred to a national register for data—that is good. She is absolutely right that we need money set aside, an action plan and better co-ordinated care.

I thank the hon. Member for Enfield North (Feryal Clark) very much for her contribution. There is nothing wrong with her memory, by the way. She referred to early diagnosis, and she welcomed the 2023 rare disease action plan. Sometimes, if we cannot find a cure, we can at least make the person’s quality of life better. We sometimes have to settle for less to get more, and in that one sentence the hon. Lady summed up what we are all about. It would be great to have the cure every time; that is not possible, but it is possible to make lives better. I thank her for that. She also referred to the need to skill up the NHS, and she gave the example of her wee constituent Lily—we heard what happened to her, and we all think of her. The hon. Lady also referred to R&D.

Last but certainly not least, I thank the Minister so much. It is a pleasure to come to debates—I mean this honestly, not in a condescending way—when the Minister understands the issues really well and responds to the questions we ask. She said she will look at the heel prick blood test to ensure we can solve the problem. She came up with ideas about new diagnosis, new treatment, specialist care, gene therapy, the £12 million of extra money set aside for research, and mental health and education support. Those are the things that we all asked for, and they were all in the Minister’s speech.

I am a great believer in the Union. I say that honestly; I am not trying to be political. It is clear to me that the four regions could come together as one and do it in a way that we all benefit from. Every one of our constituents, in Scotland, Wales, England and Northern Ireland, can benefit from what is being done in other places. It is really good to have that on the record.

I thank the Minister, hon. Members and the audience in the Public Gallery. I also thank you, Mr Sharma, for the way you chair our meetings, and the Hansard staff, who are very sympathetic and patient with my language.

Question put and agreed to.

Resolved,

That this House has considered patients with rare diseases.

Covid Pandemic: Testing of Care Home Residents

Jim Shannon Excerpts

Wednesday 1st March 2023 Commons Chamber

[Helen Whately]

As the hon. Lady says, care workers were among those on the frontline during the pandemic and they had some incredibly difficult experiences. They took the risk of catching covid and, very sadly, some care workers and NHS workers were among those who lost their lives. Others have long covid. The question of compensation is currently with the Department for Work and Pensions. The Minister for Disabled People, Health and Work, my hon. Friend the Member for Corby (Tom Pursglove), is in his place on the Front Bench: his Department is looking at this and will respond in due course.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for her answers. Everyone’s thoughts and prayers are with those who lost loved ones. The impact of the covid lockdown on mental health was felt most keenly in care homes. To see what the elderly people were put through, and learn that the full protections were not in place and they could not see loved ones at the end of life, is totally unacceptable. What would the Minister offer to those who lost precious hours with those they loved and adored on hearing this tragic news today?

[Helen Whately]

I reiterate to those living in care homes and their loved ones and families that the Government took every step throughout the pandemic to protect those we knew were vulnerable. For instance, we prioritised testing with more than 180 million tests going to care homes during the pandemic, and we prioritised vaccinations. I remember talking to residents in care homes at the time, and vaccination was a huge moment for them because it was the first time they had felt really protected from that cruel virus. I know how hard it was for families that they could not see loved ones in care homes, and that was one reason we put out guidance about visiting, saying that if someone was close to end of life they should be able to receive visitors. I will continue to do my utmost as Minister for Social Care to make sure that we do our very best for those living in care homes.

Health and Wellbeing Services: East of England

Jim Shannon Excerpts

Wednesday 1st March 2023 Westminster Hall

[Priti Patel]

I thank my hon. Friend for making that point. The British Dental Association has been pressing for reform probably for as long as I have been in Parliament, and I am very familiar with its case. My hon. Friend speaks very clearly about access and inflexibility. Importantly, if there is no flexibility in the system, there is no opportunity to provide services to meet local need accessibly and in a way that means people do not think they will be charged or subject to barriers to access.

[Jim Shannon (Strangford) (DUP)]

I commend the right hon. Lady. She was a very effective Home Secretary and it is good to see her just as active on the Back Benches—well done. This subject does not affect me personally, but I want to ask her about a similar issue: face-to-face GP appointments. It is vital for a GP to assess what they see as well as the words they hear. My constituents wish to have face-to-face appointments, but they seem to be restricted. Is the right hon. Lady experiencing the same problems? What would she suggest should be done to solve them?

NHS Workforce Expansion

Jim Shannon Excerpts

Tuesday 28th February 2023 Commons Chamber

[Wes Streeting]

There are a couple of challenges with that approach. First—I want to be clear about this—having international students come to study at UK universities is a wonderful thing. It is wonderful for British students who mix with cohorts drawn from across the world, and it is wonderful because they contribute to the cultural and intellectual life of our universities, and of the towns and cities in which they live while studying here. It is a wonderful thing because they often return to their countries with fond memories of Britain, which is an extension of our soft power and diplomatic influence. Those are all great reasons why we should cherish, embrace and welcome international students, and it is why I hope the Home Secretary does not win the argument inside Government to restrict further access to international students. Finally, I should say that international students also pay an enormous amount to come and study here in the UK, and they subsidise home students.

I want to be clear about how much I welcome international students, but it is an absurdity that people are coming to this country to study in medical schools that have no British students. It is an absurdity, when we have a chronic shortage of doctors, nurses, midwives and allied health professionals, that we see straight-A students from our own country being turned away, while university medical schools are being told they can only recruit international students. That is the depths of stupidity that this Government are plumbing.

[Jim Shannon (Strangford) (DUP)]

I commend the shadow Minister for his thoughts. The poaching of junior doctors by Australia, for example, for better pay and working conditions, as opposed to fractured shift patterns here, is a major issue. It is not just about expanding the workforce, to which he has referred; it is also about having a careful and concerted campaign to retain staff here. Does he agree that has to be part of the thrust of this debate?

[Wes Streeting]

I wholeheartedly agree with the hon. Member. I will talk about this later in my speech, but it is why the Government have to resolve this pay dispute with existing NHS staff. The danger is not that they walk out for another day of strike action, but that they walk out of the NHS altogether for countries that treat them better. What an absurd position to be in. It is also absurd, by the way, that we still have doctors retiring early for no other reason than that the pensions rules create an active financial disincentive to work up to normal retirement age, as many of them would like to do. It is completely absurd.

Government Support for Breastfeeding and the 2023 Lancet Series

Jim Shannon Excerpts

Monday 20th February 2023 Commons Chamber

[Alison Thewliss (Glasgow Central) (SNP)]

I have repeatedly brought matters to this House concerning infant feeding. For an issue that concerns every child ever born, it generally gets remarkably little attention from Governments. Madam Deputy Speaker, I can assure you that breastfeeding is an issue of the utmost importance. According to the World Health Organisation, breastfeeding has the potential to prevent 800,000 child deaths globally each year. As The Lancet paper editorial states:

“Breastfeeding has proven health benefits across high-income and low-income settings alike: it reduces childhood infectious diseases, mortality, and malnutrition, and the risk of later obesity; mothers who breastfeed have decreased risk of breast and ovarian cancers, type 2 diabetes, and cardiovascular disease.”

Yet despite those clear health benefits, around the world and here in the UK, we see a growth and embedding of commercial milk formula in our culture.

I stress that this is not a criticism of individual parents, or a value judgment. This is not about formula versus breastfeeding; it is a structural issue, relating to recognition of the importance of breastfeeding and to the lax regulations that have allowed a commercial industry to flourish. The recently published Lancet papers tackle the structural reasons for which breastfeeding does or does not happen. Commercial milk formula is a multibillion-dollar industry which directly targets families with multifaceted and sophisticated marketing practices—practices that influence our beliefs and values, prey on our insecurities and weaknesses, and are exacerbated by the absence of comprehensive Government support for breastfeeding.

There are three Lancet papers, each highlighting the impact of several aspects of commercial milk formula marketing. The second states:

“The marketing of commercial milk formula…for use in the first 3 years of life has negatively altered the infant and young child feeding ecosystem.”

Successful breastfeeding depends on a network of policy and society responses. It is the responsibility of Government to regulate the industry, and to implement structural policies to mitigate the impact of formula marketing. Women who do breastfeed do so despite billions of pounds’ worth of marketing designed specifically to undermine them.

However, this commercialisation does not just affect breastfed babies and their families. The cost of the marketing literally adds to the price of commercial formula on supermarket shelves. Research by Leicester Mammas—presented recently to the all-party parliamentary group on infant feeding and inequalities, which I chair—shows the influence of advertising, with many parents choosing the most heavily advertised first- stage formula rather than the cheapest. All first-stage formulas are exactly the same by law.

In 2018, the APPG produced a report highlighting the significant impact of the cost of commercial milk formula on family budgets. Inflationary pressures are much worse now than they were in 2018, with profound consequences. Feed UK has highlighted the increased costs in its own more recent research, and just yesterday an article in The Guardian revealed that supermarkets such as the Co-op are now keeping formula behind the counter to prevent shoplifting. It said:

“The cost of infant formula has soared over the past year - with the price of the cheapest brand increasing by 22%. Even if a parent is able to access the cheapest brand, Aldi’s own label, the cash value of Healthy Start vouchers, £8.50 a week, is no longer enough to pay for the amount of infant formula needed to safely feed a baby in the first six months of their life.”

That is a very difficult increase for many families to bear. The Minister should be concerned about the risks of parents’ watering down formula, feeding babies under a year old cows’ milk, or thickening milk with porridge because they simply cannot keep up with the spiralling costs of infant formula. Inadequate nutrition at an early stage can have devastating long-term health and developmental impacts. I have raised this matter with Ministers before, and I encourage them to take it seriously. I am presenting the debate this evening because I feel that it is important for the Government to engage meaningfully with the findings of The Lancet report.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for initiating the debate, and for the leadership that she brings to the APPG. Her voice on behalf of breastfeeding women throughout the United Kingdom has been welcome.

In Northern Ireland, our community midwives team are extremely focused on aiding breastfeeding, yet, as the hon. Lady will know, we have the lowest breastfeeding rates in the UK. Does she agree that providing breast-milk pumps for women in low-income families who are put off by the prohibitive cost of the pumping equipment, but who need their child to be minded after the end of their all too short maternity leave, may be a useful tool to help mums to realise that “breast is best” can work in tandem with their return to work?

[Alison Thewliss]

The provision of those pumps can indeed make a huge difference to working families by giving women the flexibility to return to work. Many of them want to breastfeed, but find that returning to work presents a barrier to it. I will say a little more about the pressures from maternity leave later in my speech.

In this post-Brexit landscape, health industry professionals are making it clear that there should be no reduction in regulation on commercial milk formula. Existing regulations should be maintained as a minimum, and work should be conducted to improve on them.

Let me now take a bit of time to discuss the different angles of the three papers. The first explores the challenges of breastfeeding in a market-driven context. Many of us will be familiar with the stress of having a newborn: are they feeding enough, too much, too little? Are we getting enough sleep? Why are they still crying? Commercial milk formula companies thrive on this self-doubt. They want to exploit what are normal developmental phases and present them as problems to which only they can provide a solution. Online forums and baby clubs, apps, emails and pop-up ads are rife. They consistently undermine parents’ confidence, so that a product can be sold as the answer to their problems. When you are exhausted and your baby has been crying for hours, commercial milk formula companies are there to sell you a good night’s sleep, peace of mind, or a special type of formula to stop your baby fussing.

No one would judge parents in that position. We have all been there, and would gladly hand over all the money in our wallets to get that peace of mind. Companies have stepped into this space to offer specialist formulas in a quite unregulated way: formulas sit on the supermarket shelf offering solutions to colic and spitting up, for “hungry babies”, and to deal with allergies. The truth is, however, that there is no solution—not one that comes in a tin, anyway. Fussing and crying and disrupted sleep patterns are all extremely normal parts of human development and baby behaviour. Normal sleep patterns of babies sadly do not align with the sleep patterns of adults, no matter how they are fed. The responsibility lies on us, as policymakers, to ensure that parents are informed and helped to make the best choices for their babies. We need to ensure that any vacuum of information is not filled by aggressive marketing.

The second paper looks at the marketing playbook used by commercial milk formula companies. I should say at the outset that I am not arguing that marketing is inherently bad, or that companies should not make profits, but there is a case for an overhaul of the regulations. When marketing impacts human development and health outcomes to such an extent, Governments need to step up to the plate.

Commercial milk formula sales were worth $55.6 billion in 2019. Let me put that figure in context: it far exceeds the Scottish Government’s budget in the same year. Sales per capita have increased substantially across the world over the last decade. There are many reasons for that—poor breastfeeding support, work constraints, perceived issues with milk supply or fussiness—but the major contributor is marketing. Between $2.6 billion and $3.5 billion is spent on milk formula marketing every year, and that is likely to be the tip of the iceberg, because it does not include the costs of lobbying, social media or sponsorship of health workers, all of which are key entry points in shaping beliefs and altering consumer decisions. Industry lobby groups work to influence policy environments in favour of the milk formula industry and their shareholders.

Medical professionals are targeted as well, through deliberate efforts by formula companies to encourage the diagnosis of health issues which they claim that their products can alleviate. Dr Chris van Tulleken is among several health professionals who have explained how this has led to over-diagnosis of health issues such as cows’ milk protein allergy, an activity that is being led by formula companies presenting their products as a “solution” to normal baby behaviour. He found that, astonishingly, between

“2006 and 2016, prescriptions of specialist formula milks for infants with CMPA increased by nearly 500% from 105,029 to over 600,000, while NHS spending on these products increased by nearly 700% from £8.1m to over £60m annually.”

There is little evidence to suggest that prevalence has increased, but it is clear from those figures that industry influence has. This is a cost to the NHS of which the Government should be mindful.

The report finds that the World Health Organisation’s “The International Code of Marketing of Breast-milk Substitutes” has been routinely blocked, reinterpreted, circumvented, or ignored entirely in order for companies to achieve astronomical profits. One example is the creation of follow-on milks as a response to the marketing constraints that do exist: they are completely unnecessary, and often contain additional harmful sugars. The aim is to sell them to promote first-stage formulas that cannot be advertised on television. In the UK, the existing regulations are poorly enforced, and could well end up being scrapped in the bonfire of regulation that is the Retained EU Law (Revocation and Reform) Bill. I seek an assurance from the Government that that will not happen. I also ask the Government to use their voice at the meeting of the Codex Alimentarius Commission to tighten regulations globally, instead of allowing industry to have its own way.

The third paper highlights the way in which the political economy influences breastfeeding outcomes. The paper finds that inadequate maternity rights and poor working conditions make it difficult for many mothers to breastfeed, and, as was pointed out by the hon. Member for Strangford (Jim Shannon), a rise in insecure and underpaid work has made it even more difficult. There is evidence from around the world that where Governments fail to protect maternity rights, formula companies thrive.

This paper highlights how women’s labour is systematically undervalued. If a tin of formula is purchased in a shop, that contributes to GDP figures, which the Government record as an expression of national wealth. If that same baby is breastfed, it does not count towards GDP because women’s time is just not valued the same way as a commercial product. The paper found that if we were to put a monetary value on the milk produced by breastfeeding women globally, it would amount to an astonishing $3.6 trillion. Commercial milk formula companies are aware of that, and this report exposes how their interests are aligned with poorer maternity protections. The incentives and resources are there for lobbying companies to persuade Governments to reduce workplace rights. This acts as a distortion on the labour market and needs to be actively resisted.

Scotland has legislation specifically protecting breastfeeding in public, for which I thank the former Labour MSP Elaine Smith. The SNP Scottish Government also put breastfeeding into their programme for government, with investment which led to an increase in breastfeeding rates. It is progress, but so much more needs to be done. As I hope I have outlined, this matter goes far beyond individual choice. Ultimately, a healthier population is a positive externality: it benefits everyone, saving money for the NHS through infant and maternal health, a healthier workforce and better outcomes in education. Encouraging breastfeeding and regulating formula effectively should be seen not as a drain on the public purse but as an investment for the future.

I have some asks for the Minister. Almost exactly six years ago, I published my Feeding Products for Babies and Children (Advertising and Promotion) Bill, and I would be glad to speak to the Minister further about it, because it presented the Government with credible options that could make a difference. As I mentioned earlier, we are also at an important juncture with the retained EU law Bill, which could see current infant formula regulations being scrapped. Let us not forget that these important regulations across Scotland, England, Wales, and Northern Ireland protect the health of our youngest citizens. They must be retained, but they must also be strengthened.

Prior to Brexit, when I asked about the prospect of the UK Government joining the countries that have fully implemented the World Health Organisation’s international code of marketing of breastmilk substitutes, I was told that our membership of the EU presented a barrier to doing that. That excuse has now vanished, so I would like the Minster to tell me tonight when he aims to implement the code in full.

Will the Minister meet the authors of The Lancet reports and representatives of the all-party parliamentary group on infant feeding and inequalities to discuss further what the Government intend to do in response to these findings? Will he accept that child and maternal health should come before the profits of commercial milk formula producers? Will he commit today to exploring the role of the UK Government in stopping the aggressive marketing of the formula milk industry? As The Lancet so clearly set out, superficial slogans to encourage breastfeeding are a poor substitute for addressing the sociocultural, economic and commercial determinants of infant and young child feeding. I urge the UK Government to engage with the reports and to do much better by our youngest citizens.

NHS Strikes

Jim Shannon Excerpts

Monday 6th February 2023 Commons Chamber

[Will Quince]

First, let me agree entirely with what the hon. Gentleman said about NHS staff and how we all owe them a debt of gratitude for the service they have given, not just to us but to all our families. Again, he may have missed it when I asked that if any Opposition Member was going to raise the same question, they might also stand up and say exactly where each block of £700 million would come from, out of my £150 billion budget. [Interruption.] The hon. Member for Brent Central (Dawn Butler) says, “Show us the books.” She knows exactly where the NHS funding goes. I want to ensure that we have an open and honest dialogue. I have been having those conversations with the unions and I have set out exactly the challenges we face. Any pay has to be affordable not just to the NHS but to the wider budget. It has to recognise and reward those who work in the NHS. Of course I want to retain and attract the very best, but it also has to be fair to taxpayers, and that is the point I think the hon. Gentleman and others are missing.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for his answers. For nurses and many others in the NHS, striking is not what they want to do: all they want is dialogue and to try to move forward with an agreed wage structure. They have been left vulnerable by understaffing on the wards, and the pressure that adds is repugnant to them. The Government must move from their entrenched position to find a workable solution. Will the Minister commit to reopening dialogue and looking at the situation, not from the angle of enshrined principle but from a safety angle, which concerns us all?

[Will Quince]

I thank my hon. Friend for his question. We accepted in full the independent pay review body’s recommendation this year of 4.75%, which was over and above last year’s figure of 3% when the rest of the wider public sector was frozen. He asks about dialogue. Of course I am happy to have dialogue with the unions; my door has always been open and it will continue to be so. What I am not going to do is reopen this year’s pay review. We have the independent pay review body process and we accepted that recommendation in full. What I am willing and happy to do is to have that dialogue about next year’s independent pay review body recommendation. Let us not forget that it is in only two months’ time that the new financial year starts, and we have to get that right. I hope that he will encourage unions and others to take part in that process so that we can get it right, because we all want to ensure that NHS staff get the right pay rise that recognises the huge service they give.

Cystic Fibrosis: Living Costs

Jim Shannon Excerpts

Thursday 2nd February 2023 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered the impact of cystic fibrosis on living costs.

It is a real pleasure to be here in Westminster Hall—a bit breathless, but we are here. This is a massive subject, and I am very pleased that many colleagues have been able to attend in support. Looking around the room, I see many Members who have personal stories to tell; they will do so, and their stories will reinforce the questions that we all wish to ask the Minister. I am very pleased to see the Minister in her place, as well as the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne). He and I seem to be in many debates together; indeed, we are a bit of a tag team. It is also a pleasure to serve under your chairship, Ms Harris.

I am the DUP spokesperson for health, so I am pleased to be able to highlight the struggles of those with cystic fibrosis and other lung conditions who have been affected by the spiralling cost of living. As the Minister knows, I will make a number of asks of her in my speech. Most Members will be aware that cystic fibrosis is a progressive, life-limiting genetic condition that primarily affects the lungs and the digestive system. The condition is due to inheriting a faulty gene from both parents that causes the lungs and the digestive system to become clogged with mucus, making it hard to breathe and to digest food—that is the graphic way of explaining what it means. It is common for those with CF to also have CF-related diabetes; I did not know that until I read the research, but I was aware that other effects include osteoporosis and being malnourished. Some 80% of people with CF are pancreatic insufficient, and therefore need a higher calorie intake to maintain a healthy weight.

Roughly 11,000 people in the UK have CF: 9,000 here on the mainland in England, 1,000 in Scotland, 500 in Wales and 500 in Northern Ireland. In 2021, the median age of people with CF who died was 38. Wow—this disease really puts life into perspective. People with CF are particularly susceptible to lung infections, and therefore cannot meet each other face to face due to the risk of cross-infection. Again, the life of someone with CF is really restricted, and is much more difficult.

That brings us to the crux of the issue: living with CF demands an incredibly high burden of treatment, taking at least two to five hours and up to 70 pills each day. People with CF have higher food bills because they need a higher calorie intake to maintain a healthy weight, and higher energy bills because they need to keep their homes warm to stave off lung infections and they may need to power an additional fridge to store sterile medications or essential medical devices such as ventilators. Life as a person with CF is so different from everybody else’s life.

People with CF living in England must pay for their NHS prescriptions, unless they are exempt. Those with CF living in England and, at least until 2024, in Northern Ireland also have to pay hospital car parking charges. The Cystic Fibrosis Trust, in conjunction with Bristol University, commissioned a report entitled “The Financial Costs of Cystic Fibrosis”. I urge the Minister to take time to process that report; if she has already done so, we thank her for that. It will give her a good perspective on my speech, and perhaps on other Members’ speeches as well.

[Margaret Ferrier (Rutherglen and Hamilton West) (Ind)]

I congratulate the hon. Gentleman on securing another debate in Westminster Hall—he is very successful at doing so, and I thank him very much. According to research, an adult with cystic fibrosis will, on average, incur an additional £209 per month in living costs, while a parent carer of a child with the condition will incur an additional £291. Very few people on an average income have that kind of money to spare. Does the hon. Gentleman agree that dropping prescription charges for people with cystic fibrosis, as has been done in Scotland, would be one way of easing the burden on families?

[Jim Shannon]

I thank the hon. Lady for her intervention, and I agree with her. In Northern Ireland, there are no prescription charges—there is no cost—which I believe makes a difference. That is one of my asks of the Minister; there are a lot of asks, most of which are financial, but they are very important.

To follow on from the hon. Lady’s intervention, the report also revealed that the additional cost of living due to cystic fibrosis is over £6,500 per annum. The financial burden is made up of both extra spending to keep well and the loss of income. The key findings indicate:

“Families with CF are more likely to be struggling with their finances than the public—24% of adults with CF and 35% of parents of children with CF described meeting their bills each month as a ‘constant struggle’”—

life is really hard for people with CF—

“compared to 17% of UK households overall.”

The findings continue:

“Food and rising energy bills were the biggest financial concern for people with CF and their families—both are essential to the health and quality of life of people with CF.

For the average family the combined impact of extra spending”

includes “heating, expensive dietary needs” and “attending medical appointments”—the local hospital is not always where they go to meet a consultant or specialist—and “home medical equipment”. Life for a CF patient in their home is almost like being in a hospital.

There is also the loss of income: treatment takes two to five hours every day, which means that they cannot keep down a full-time job; indeed, it would be difficult to keep down a part-time job. The extra spending and loss of income means

“they are thousands of pounds worse off than comparable families.”

The findings continue:

“Three-in-five (59%) of adults with CF had also incurred some form of income loss as a result of their condition in the last two years—for example, reducing working hours, taking unpaid leave to attend appointments or leaving work altogether”,

as many have to.

The Cystic Fibrosis Trust has seen a significant increase in the support needed, with 72%—a big figure—of helpline inquiries since October 2022 relating to financial support. Between October and December 2022, it provided cost of living fund grants to hundreds of households and increased its grants for essential household appliances and white goods. The figures are real—they are quite detrimental and very hard to comprehend.

According to the Marmot review of health inequalities,

“Those living in the poorest neighbourhoods are twice as likely to develop a lung condition, and seven times as likely to die from one than those in the richest areas.”

We have seen the pressures on those with CF, but those pressures are even greater if they live in households where money is tight, where they cannot keep a wage and where they are probably more dependent on benefits. I will talk about that in my requests to the Minister. I know that benefit payments are not the Minister’s responsibility, but they are one of the issues that come off the back of this debate.

Because poorer communities are disproportionately impacted by the cost of living crisis, many of those living with a lung condition are more likely to be struggling from the outset. Asthma and Lung UK found that almost two thirds—63%—of those surveyed with a lung condition are

“buying and eating less food.”

That is when they need food more, need the right food and need it in the right quantity. Eating less food can lower immunity and increase the risk of

“viruses that are the top trigger of asthma attacks”.

It is clear that those who suffer from cystic fibrosis, or from other lung conditions, are in grave need of help. That is my ask of the Minister today. Some of the issues will take cross-Department co-operation, but I believe the Minister is best placed to take them forward. The collective asks that I and others in this debate have are so important.

I should have said at the beginning—I apologise for not doing so—that I thank the Backbench Business Committee for agreeing to the debate. The Committee is very good when we propose debates to it, and it granted this one without any thought whatsoever. We also hoped to have the debate at this time, because it ties in nicely. There are people in the Gallery who have helped me, and probably others in this room, to prepare our contributions for today.

Ask number two, which I have raised before but will raise again, is that benefits must continue to rise in line with inflation. Some 83% of parents of children with CF are receiving one or more type of benefit, and 68% of adults with CF are claiming at least one form of benefit, according to the new report. The Office for Budget Responsibility forecasts that consumer prices index inflation for 2023 will be 7.4%. Those are the figures. If the Government—I always say these things respectfully and they are not meant critically, which is not my form, but I ask them because they need to be said—do not continue to increase benefits in line with inflation, not only those with CF but all the poorest will suffer a detrimental blow.

[Margaret Ferrier]

I thank the hon. Gentleman for giving way again; he is being very generous. Research conducted by the University of Bristol found that a surprising number of cystic fibrosis patients had applications for personal independence payment or disability living allowance rejected, and others did not apply because they did not know what support might be available. Does he have any thoughts about how the DWP could improve awareness of the condition and ensure people are getting the right support?

[Jim Shannon]

It is almost like the hon. Lady read my next point. That is one of the focuses of my request. It is my next sentence, would you believe?

We must remove unnecessary PIP reassessments for people with long-term conditions such as CF. There has to be an understanding of what CF is and how it affects people. There has to be an understanding that their lives are not like anybody else’s lives. I said earlier that the median lifespan for people with CF in the last year was 38 years. It is sad to say this, but it is a life-limiting condition.

There is a requirement for claimants to report any change in health to the Department for Work and Pensions—wow! It would be great if every person with cystic fibrosis could say, “I tell you what, I’m better today. I won’t need those 70 pills and the medication for the next wee while.” That does not happen. It would be a miracle. I believe in miracles—you know I do, Ms Harris—but they do not happen every day. The fact is that people sometimes have a sickness or a disability—this is one of them—that means they need help. I have always been a great believer that society is marked by how it helps those who need help, and that is what we need to do.

These people have a progressive lifelong condition and their health is unlikely to improve, but there is the threat of constant reassessment—my goodness, reassessment again. We know the condition is life-changing and life-limiting, and that they probably need a transplant. The hon. Member for Bristol East (Kerry McCarthy) is always here in these debates. I welcome her to her place—not that it is my job to welcome people to Westminster Hall, but I like to see her because I know she makes very helpful contributions. The reassessments provoke anxiety and are costly and unnecessary. Streamlining the assessment system would mean that those with progressive, long-term conditions such as CF do not have to undertake reassessments. That would not only remove the anxiety but provide cost savings to the DWP. We do not need to do those reassessments because it is a life-limiting disease.

I feel very frustrated—I am sure others do too—when people with life-limiting diseases have to go through reassessments for employment and support allowance, PIP or DLA. It is absolutely unbelievable that that should happen.

[Andrew Western (Stretford and Urmston) (Lab)]

The hon. Gentleman is making an excellent point about the reassessment process. Does he agree that many people with cystic fibrosis are unfortunately unable to access PIP because it is treated as an illness, rather than a disability? The assessment process assesses what people may theoretically be able to do, rather than what they can do in practice on a daily basis.

[Jim Shannon]

The hon. Gentleman has summed it up in that one sentence. I said when he made his maiden speech last week that his contributions will add much to this House. That is one of them, and I thank him for it. I wholeheartedly support him.

I again ask the Minister—she knows these requests, because I have made her Department aware of them—to remove VAT on energy bills. That is important for people with CF because, at a time when energy bills are already astronomical, the median energy bill for an adult with CF is £26 higher every month than for typical households. For parents of children with CF, the figure rises to £36, because they do more and keep more heat in the house for their children. Adults can sometimes bear with it a wee bit, but there is still a cost factor.

[Liz Twist (Blaydon) (Lab)]

The hon. Gentleman is making an excellent speech. Does he agree that it is really important that people with lung conditions have the right environment at home and the right heating? The additional costs, especially given the rising energy costs, mean that we must take care of those people who need extra heat. That applies especially to people with CF.

[Jim Shannon]

The hon. Lady is absolutely right. I thank her for her contributions on this subject. She brings much knowledge to these debates. I am pleased to be a member of the all-party parliamentary group for respiratory health with her. We work with others to ensure that we can pursue matters, and today we are pursuing this matter for our constituents.

[Kerry McCarthy (Bristol East) (Lab)]

It is good to be in a Westminster Hall debate led by the hon. Gentleman; he is often a fixture here. I thank him for his kind words about my presence in previous debates.

On the energy bill issue, is the hon. Gentleman as concerned as I am about the reports of forced prepayment meters, including for people with extreme vulnerabilities and disabilities? Often those forced prepayment meters lead to self-disconnection because they are more expensive and people cannot afford to keep them topped up. I welcome today’s announcement that there is to be a moratorium on forced prepayment, but we should not have that at all, particularly for people with conditions that require their homes to be heated.

[Jim Shannon]

I do not have that in my notes, so I thank the hon. Lady for her knowledgeable intervention. That issue is hard to comprehend. If we have a decent wage, energy is not a big problem. On the minimum wage, it becomes a problem. When someone is disabled, it becomes an even bigger problem. She is right and I thank her for that reminder. We are all making points that we look to the Minister to respond to. Those with prepayment meters are under especial pressure and we look to the Minister to respond to that.

Removing VAT from energy bills would benefit not only CF families but all of the poor, as they spend a larger percentage of their income on energy bills.

Hospitals should provide free parking. I call on NHS England hospitals to provide access to free hospital parking for people with chronic medical conditions. Most hospital car parking charges are already abolished in Wales and Scotland, and Northern Ireland is set to abolish them in 2024. For once, the mainland needs to catch up with the regions. However, there are worries about potential delays to that coming into effect, given that there is currently no sitting Northern Ireland Assembly.

The guidance from the Department of Health and Social Care for NHS trusts in England makes it mandatory for parking to be free for those with blue badges, those attending as an out-patient three times a month for at least three months, and parents of sick children staying overnight, but it is rare that those with CF meet those criteria. The hon. Member for Stretford and Urmston (Andrew Western) referred to the assessment process, and that has to be addressed.

I am on to ask No. 5. Some 80% of people with CF are pancreatic insufficient, meaning they require a higher calorie diet. During hospital appointments and in-patient stays, it is vital that they have access to affordable food. However, NHS England’s national standards for healthcare food and drink do not refer to a need to ensure that affordable food is available in hospital cafés and canteens. That must change because there are people who cannot afford the right sort of food, but who need it.

[Lee Anderson (Ashfield) (Con)]

The hon. Gentleman is making a passionate speech, but I want to pull him up on one point. The City Hospital in Nottingham has its own cystic fibrosis unit. The in-patients get a personal chef who cooks them whatever they want 24 hours a day. They have access to snacks, cakes and all the junk food that CF patients need, so what the hon. Gentleman says is not correct in my neck of the woods, where they have their own chef and can eat whatever they want, whenever they want.

[Jim Shannon]

I am really pleased to hear about that initiative in the hon. Gentleman’s hospital. That is a model for the rest—well done! We look forward to that scheme being taken on board by the Government.

The hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) made a point about ending prescription charges for people with cystic fibrosis in England. I am on my last page, Ms Harris—I am conscious that I committed to a timescale, and I will try to keep to that. I am thankful for the exemption in place in Northern Ireland, but I cannot in all conscience leave it out of any debate on this issue for my fellow British citizens. As everyone knows, I am a great supporter of the United Kingdom of Great Britain and Northern Ireland. I am pleased that my friend, the hon. Member for Linlithgow and East Falkirk (Martyn Day), who will speak shortly for the Scots Nats party, is part of this great United Kingdom as well.

The list of medical conditions that are exempt from prescription charges was written by the Government in 1968, so I think it is time to look at that again. The reality is that, at that time, children with CF were not expected to live to be adults, so CF was not included in the list. However, there are now more adults than children living with CF and it continues to be one of the few chronic, life-shortening conditions where people pay for their prescriptions. One of my asks of the Minister is for that to change.

[Lee Anderson]

I thank the hon. Gentleman for giving way; he is being very generous with his time. Is he aware that there is a loophole in the system? Although people with CF cannot get free prescriptions, if they have diabetes caused by CF, they can. It is crazy and unacceptable that they have to rely on getting another disease before they can get a free prescription.

--- Later in debate ---

[Jim Shannon]

I thank the hon. Gentleman for his intervention, which reveals another anomaly. The list of questions for the Minister is getting longer, but I know she will be able to respond.

Ending prescription charges for the estimated 2,500 people with CF who are not currently eligible for free prescriptions could cost the Exchequer as little as £270,250 per annum. That is not a big cost. The Cystic Fibrosis Trust believes that ensuring that people with CF receive free prescriptions will mean they can live better, healthier and longer lives, ultimately reducing the burden on the NHS. It is vital that there is an urgent review of the medical exemption list to ensure that people with CF across the UK have equitable access to free prescriptions.

I thank all Members for their contributions and interventions. I look forward to the contributions by the SNP spokesperson, the hon. Member for Linlithgow and East Falkirk, and the shadow Minister, the hon. Member for Denton and Reddish. I thank the Minister pre-emptively for her response, for which I have high hopes. I genuinely know that the Minister has a heart for effecting real change—and that, I believe, is what is needed today.

--- Later in debate ---

[Helen Whately]

I absolutely hear the hon. Member’s argument, and similar points were made during the debate. As the Minister with oversight of major conditions, cystic fibrosis is not the only condition about which I have received letters, parliamentary questions and lobbying in general asking for exemptions to prescription charges. We cannot just look at cystic fibrosis in isolation; a similar argument could be made in relation to a number of other conditions. As I have set out, the way the system works is specifically designed to help people on low incomes with the cost of prescriptions and make it more affordable for people who have to get a lot of prescriptions during the course of a year.

[Jim Shannon]

I want to follow on from what the hon. Member for Bristol East (Kerry McCarthy) said. I think I referred in my contribution to the 1968 legislation. The perception at the time was that children who had CF were not going to survive, and that therefore there was no need to include CF, but today there are more adults who have CF than ever. The point that I am making is that things have changed. Will the Minister convey that information to the DWP in as strong a fashion as we have in this Chamber, and ask the DWP to look at that? I know it is not the Minister’s responsibility to look at that, but if that is agreeable to her, it would be helpful.

[Helen Whately]

As ever, the hon. Member is extremely persuasive. I will be happy to take that up with ministerial colleagues who are responsible for prescription charges, but I do say that this is the case not just for cystic fibrosis. We should be aware that we would be similarly lobbied on behalf of other conditions, so we need to be aware of the breadth of the issue raised. However, I shall be happy to take up the matter with ministerial colleagues.

I want to pick up on the cost of attending medical appointments, which was also raised. To help people to get to appointments, the NHS healthcare travel costs scheme provides financial assistance to eligible patients who need assistance with their travel costs. That includes patients in receipt of a qualifying benefit and those on the NHS low-income scheme.

Another way to alleviate the cost pressures of medical appointments for people with cystic fibrosis—I stress that this is only where appropriate; I do not want to be misconstrued—is for appointments to be virtual. NHS England is supporting NHS providers to embed and spread the use video consultations innovatively, where that is the right thing for a patient, and in discussion with the patient in respect of their individual needs. For some patients, that is helpful in reducing the number of journeys they make to appointments—but I am clear, and I know very well, that some appointments should and have to be in person, particularly whenever anybody wants that.

[Jim Shannon]

I tried to illustrate this point earlier, but although I understand that, with the restructuring of hospitals, not every hospital can specifically respond to everything—hence the centralisation of medication and healthcare—when it comes to cystic fibrosis and getting an appointment with a consultant, physio or whoever it might be, one factor is the distance that a great many patients have to travel, especially those in rural areas. The Minister has said that those on benefits can qualify for travel costs, but for some people it is not the cost alone; it is the travel itself. I am sorry for going on a wee bit, Ms Harris, but as I said earlier, for most people with CF that means two to five hours every day of their lives, so the impact on them is greater. The Minister has talked about the physical and mental health aspects, but there are wider aspects, which include the long distances that people have to travel just to get the treatment they are after.

[Helen Whately]

The hon. Gentleman makes an important point about having to travel further for appointments and treatment, which affects people in rural areas generally. Those costs will clearly affect those who have to travel regularly and frequently, such as patients with cystic fibrosis who need many appointments. I am very happy to take away the point he raises and to look at whether we should do something different or specific for those living further away from wherever they need to go for treatment.

I want to pick up on the point about hospital parking, which is clearly another cost that might be affecting people. The Government committed to introducing free hospital car parking for those in great need, including frequent out-patient attenders, as part of our election manifesto. NHS trusts and NHS foundation trusts are required to comply where applicable with NHS car parking guidance, which outlines that disabled patients and visitors should receive free parking for the duration of their attendance at, or visit to, hospital. It also makes it clear that parking will be provided free to all out-patients who attend hospital for an appointment at least three times in a month and for an overall period of at least three months. Importantly for parents of children with cystic fibrosis, parents of children who are admitted as an in-patient overnight should receive free parking between the hours of 7.30 pm and 8 am while visiting their child. I was glad to hear from my hon. Friend the Member for Ashfield that, as I have heard in other places, there is indeed free parking for the patients with cystic fibrosis he mentioned and their families.

I want to mention the innovative work—which also touches on the virtual appointments that I mentioned a moment ago—that Royal Brompton and Harefield NHS Foundation Trust is doing in partnership with NuvoAir, whereby patients use spirometer devices at home to measure lung function and access the results on their phones or tablets via Bluetooth. The results can be shared with a specialist cystic fibrosis clinical team at the Royal Brompton Hospital during virtual consultations, saving the patients time and money while ensuring effective monitoring by the clinical team. There is a balance here, because although the many appointments mean extra journeys, we are doing things to improve the lives of people with cystic fibrosis and to help with the practicalities of the necessary extra treatment and care.

This debate has powerfully brought to life the extra challenges facing people living with cystic fibrosis and their families. It has been helpful to air the issues relating to extra costs and anxiety and the practical difficulties of living with the condition. I pay tribute to all those involved in supporting people with cystic fibrosis and all those living with it. The drive and determination to improve things is inspirational, and I hope that I have reassured everybody about the Government’s commitment to supporting patients with cystic fibrosis and their families.

[Jim Shannon]

I thank all Members for their contributions. I thank the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) for her interventions on costs, benefits, and employment issues; she is always very wise. I thank the hon. Member for Blaydon (Liz Twist) for bringing her knowledge about lungs and asthma, which are part of this subject matter, from the APPG for respiratory health. I thank the hon. Member for Bristol East (Kerry McCarthy) for her efforts over the years. She referred to mental health, because physical ailments sometimes spill over into mental health issues.

We are all indebted to the hon. Member for Ashfield (Lee Anderson) for his personal story, because he described what it is like to live with extreme CF. We thank him for that story and for what he does for his wife—I know she appreciates it greatly, particularly with her diabetes. We also appreciate the other personal story about Amelia; I never realised that people so young could be affected.

The hon. Member for Stretford and Urmston (Andrew Western) referred to his constituent Penny Mitchell and her daughter Eva, to DLA and PIPs, to the extra water and food that people may need, and to the problems that some experience in securing employment. My friend the hon. Member for Linlithgow and East Falkirk (Martyn Day) emphasised how CF sufferers can pay £6,500 a year and referred to how CF patients have to prioritise aspects of their lives, to acceptable levels of benefits, and to energy costs.

I genuinely always love the contributions of the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), because they are full of detail and evidence-based knowledge and propose many good ideas. He referred to people choosing between putting food on the table or heating their home, to how the condition affects multiple body parts, to its unpredictability—people do not know what the next day will be like—and to welfare support and the DWP.

I am pleased that the Minister showed her heart in how she responded to our requests. I welcome what the Government are trying to do with the steps they are taking. The Minister has heard our stories both individually and collectively on the behalf of our constituents. We want the benefits to be reviewed, and I am pleased that the Minister is prepared to take that to the DWP. Adults with CF today need the system to change. While every person with CF would love to be able to work, the reality is that they cannot.

I thank the Minister for her response and thank everybody else for their contributions. I hope that on the behalf of those in the Gallery today representing people with CF, we can do better collectively. That is what this is about, and I am sure that the Minister will be as energetic as we are in making that happen.

Question put and agreed to.

Resolved,

That this House has considered the impact of cystic fibrosis on living costs.

Urgent and Emergency Care Recovery Plan

Jim Shannon Excerpts

Monday 30th January 2023 Commons Chamber

[Steve Barclay]

I commend my hon. Friend for her assiduous campaigning on behalf of her constituents in Southend, through which she played a key role in securing the extra £8 million of funding. She is right that that will make a material difference not only to flow and capacity within the hospital but through that to the overall standard of patient care.

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State for his clear commitment to extra funding for the urgent and emergency care recovery plan. Will he outline whether he is prepared to make additional funding available to meet the needs on maternity wards, which midwives feel are teetering on the brink? In reality, that means it is an issue of life and death, due to staffing levels. Will the Secretary of State ensure that additional funding makes its way to each devolved nation under the Barnett consequentials, to be used before the scheduled new financial year ends?

[Steve Barclay]

As the hon. Gentleman will know, the additional funding that the Chancellor announced in the autumn statement will lead to an uplift in health funding for Northern Ireland through the Barnett consequentials. On the flexibility within that, the hon. Gentleman will know that I agreed flexibility when I was Chief Secretary; it will of course be for Treasury colleagues to look at the requirements for ongoing flexibility within Barnett consequentials.

Draft Mental Health Bill 2022

Jim Shannon Excerpts

Thursday 26th January 2023 Commons Chamber

[Dr Poulter]

The Committee was very lucky that we had the professional expertise of my hon. Friend, the hon. Member for Tooting (Dr Allin-Khan), a former president of the Royal College of Psychiatrists and some distinguished lawyers. I know that my hon. Friend has taken a great interest in this issue for many years, and he is right: this is the beginning of a process, not an end in itself. The Committee recognised that much needed to be done by a future Government to bring fusion between mental capacity law and mental health law, of which I know he was a great advocate throughout our work.

[Jim Shannon (Strangford) (DUP)]

I thank the Committee for its recommendations and the hon. Gentleman for his presentation of this report. Each and every one of us recognises the importance of these recommendations, which are for both patients and staff, and they should be commended to all the devolved Administrations—in particular the Northern Ireland Assembly, as health is devolved. Will that happen, and if not, could he make sure that it does?