Bowel Cancer Screening

Jim Shannon Excerpts

Tuesday 1st May 2018 Westminster Hall

[Nick Thomas-Symonds (Torfaen) (Lab)]

I beg to move,

That this House has considered bowel cancer screening.

It is a great pleasure to serve with you in the Chair, Sir Roger, and I am glad that you have taken your seat.

Bowel cancer is the fourth most common cancer in the UK. Sadly, around 16,000 people die from the disease each year. It is estimated that between now and 2035, around 332,000 more lives could be taken by this awful condition. Nearly everyone will survive bowel cancer if it is detected at its earliest stage, but unfortunately only 15% of bowel cancer patients fall into that category.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman for securing the debate. Does he agree that early-stage cancers are not only easier to treat, but less costly for a cash-strapped NHS? That is why we need an effective screening programme that includes lowering the screening age to 50 and implementing the simpler and more accurate faecal immunochemical test. That would help to get the earlier diagnosis, to stop the cancer.

[Nick Thomas-Symonds]

I entirely agree with the hon. Gentleman about the need for an optimal screening programme—I will come to that in a moment.

In Wales around 2,200 people are diagnosed with bowel cancer each year. Nearly half of those are diagnosed at a late stage. Approximately 900 people in Wales will die from bowel cancer every year, but 78% of patients will survive for one year or more, and 58% for five years or more. These figures are not mere statistics; every single extra day with the people we love is a great joy.

I lost my own mother, Pamela Symonds, to bowel cancer on new year’s day this year. She lived just under two years after her formal—too late, I am afraid—diagnosis. She was one of the 10,000 people diagnosed annually at the late stage of bowel cancer. I know only too well the impact that bowel cancer has on families.

Cancer Targets

Jim Shannon Excerpts

Tuesday 1st May 2018 Westminster Hall

[Mr John Baron (Basildon and Billericay) (Con)]

I beg to move,

That this House has considered NHS cancer targets.

I thank Mr Speaker for granting this important debate, and I thank you, Mr Streeter, for chairing it and the Minister for taking time out of his busy schedule to address it.

The matters I will raise today, as briefly as possible, are matters I have raised throughout my nine years at the helm of the all-party parliamentary group on cancer. As I near the end of my chairmanship, I thank all those parliamentarians, and the wider cancer community, who have supported and continue to support the group. They have been great stalwarts; the group has achieved much and has much to achieve. I look forward to remaining involved, but at the same time I look forward to handing over the reins.

Despite the fact that, when in government, both main parties have highlighted improving survival rates and supported process targets as a means of driving change, it remains an inconvenient truth that cancer survival rates in England and, indeed, the rest of the United Kingdom continue to lag well behind the international average. What is more, there is only limited evidence that we are catching up. In 2009, the Department of Health estimated that we could save an extra 10,000 lives a year if we matched European average survival rates. In 2013, the OECD confirmed that our survival rates rank near the bottom compared with other major economies, and for some cancer types only Poland and Ireland fare worse.

Of course, Health Ministers are right to point out that cancer survival rates continue to improve. That is welcome news, but it is not the full story. As our survival rates have improved, so have those of other countries, and there is very little evidence of our closing the gap with international averages, despite the considerable increases in health spending in recent decades. The major inquiry by the APPG on cancer in 2009 uncovered the main reason our survival rates are so far behind international averages. It is not that the NHS is worse at treating cancer—once cancer is detected, NHS treatment generally bears up as strongly as that of other healthcare systems—but that it is not as good at catching cancers in the early stages when treatment has the best chances of success. Late diagnosis, therefore, lies behind our comparatively poor survival rates, and addressing that is the key to improving our cancer performance. Early diagnosis is cancer’s magic key.

So how can we best achieve it? Since the publication of our 2009 report, we as an all-party group and the wider cancer community have come together and successfully campaigned for a one-year cancer survival rate indicator to be built into the DNA of the NHS, especially at a local level. Clinical commissioning groups are now held accountable for their local survival rates through both the delivery dashboard and the Ofsted-style scores.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman: we all know the hard work he does through the APPG and his personal passion for the subject. It is important to put that on the record, because we know why he is here. I have apologised to him, and I apologise to you, Mr Streeter, because I cannot stay. I have a meeting with a Minister at 3 o’clock, so unfortunately I cannot make the contribution that I would have liked to have made. I am sure that the Minister is disappointed, but none the less he will hear from me again in the near future.

Is the hon. Member for Basildon and Billericay (Mr Baron) aware that the target for 95% of patients with an urgent referral to wait no longer than 62 days for first treatment has not been met at all in the past year and, further, that the target for 98% of patients to receive first treatment within 31 days of a cancer diagnosis has also not been met in any of the last four quarters? Does he share my concern and, I am sure, that of the Minister?

[Mr Baron]

I thank the hon. Gentleman for his kind words. I am aware of those statistics, and I will come to the 62-day target specifically later in my address. He is right to say that many CCGs and cancer alliances are not close to achieving many of those targets. That is obviously a problem when treating cancer, but it highlights a bigger issue: we should be focusing on outcome indicators rather than process targets as a means of encouraging earlier diagnosis. I will address his point specifically in a moment.

We tried very hard to get the one-year survival rates into the DNA of the NHS. The Government listened, and we now have CCGs being held accountable for their one-year survival rates, which is good news. The logic is simple: earlier diagnosis makes for better survival rates, so by holding CCGs to account for their one-year figures and, in particular, the actual outcomes, we encourage the NHS to promote earlier diagnosis and therefore improve detection.

A key advantage of focusing on outcome measures is that it gives the local NHS the flexibility to design initiatives tailored to their own populations to improve outcomes. CCGs can therefore choose whether to widen screening programmes, promote better awareness of symptoms, establish better diagnostic capabilities in primary care, embrace better technology or perhaps improve GP referral routes—any or all of those, in combination—to try to promote earlier diagnosis, which in turn will improve the one-year cancer survival rate figures.

Rather than the centre imposing a one-size-fits-all policy, the local NHS has been given the freedom to respond to and focus on local priorities, whether that be lung cancer in the case of former mining communities or persuading reticent populations to attend screening appointments. As an all-party group we try to do our bit. Each summer, the group hosts a parliamentary reception to celebrate with the 20 or so CCGs that have most improved their one-year survival rates. Successive cancer Ministers have supported that in the past, including the incumbent.

There is strong evidence, however, that that outcome indicator is being sidelined by hard-pressed CCG managements, who are focused on those process targets that are connected to funding. If the process targets are missed, there is a cost; if the one-year figures are missed, there is not. In recent decades, the NHS has been beset by numerous process targets that, instead of measuring the success of treatment, measure the performance against process benchmarks, such as A&E waiting times.

National Bereavement Care Pathway

Jim Shannon Excerpts

Tuesday 24th April 2018 Commons Chamber

[Will Quince (Colchester) (Con)]

It is a pleasure to lead this debate this evening, and may I thank the Minister for being here to respond?

I never entered politics with the intention of becoming a baby loss awareness campaigner. As with so many in this field, the loss of a child—my son in 2014—brought about my interest and desire to bring about change. And being a Member of this House, gives every one of us the platform to make a difference. It can be a small change that affects just one of our constituents, or it can be something larger that affects everyone in the UK. I am proud that through my role in this House I have been able to play even just a small part in the development and roll-out of the national bereavement care pathway, which is something that will make a difference to tens of thousands of bereaved parents and families up and down the country.

Before I move on to the pathway itself, I want to pay tribute to you, Mr Speaker. You have been hugely supportive of our baby loss awareness campaigning efforts in this place, and I know I speak for all members of the all-party group on baby loss when I say a heart- felt thank you.

Launched last year at 11 sites across England, the pathway has been developed by a number of baby loss charities, royal colleges and professional organisations with the support of the Department of Health and Social Care and the APPG. It is designed to improve the quality of bereavement care experienced by parents and families at all stages of pregnancy and baby loss up to 12 months. The pathway provides a practical framework for all those healthcare and other professionals involved and has been informed and led by the views of bereaved parents at every stage of its development. Parents have stressed the importance of sensitive and consistent care, of making informed choices, of privacy, of not having to repeat their stories to different members of staff and of having opportunities to create memories and spend time with their babies. As one bereaved parent put it:

“Parents don’t need protecting; they just need the chance to be parents, provide their child with dignity and create memories.”

Each year in the UK, thousands of parents and wider families sadly go through the devastating experience of losing a child. While we cannot take away that devastation and grief, good care can make a devastating experience feel more manageable, while poor-quality or insensitively delivered care can compound and exacerbate pain.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on his hard work in this area—we are all greatly moved—and he is right to thank you, Mr Speaker, for all you have done. The combination of both your efforts is highly regarded in the House. Does the hon. Gentleman agree that, with three babies a week being stillborn or dying in the first four weeks of life in a nation as small as Northern Ireland, those suffering this heartbreak must be supported, which is why the care pathway is essential?

--- Later in debate ---

[Will Quince]

The hon. Lady—and I will call her my hon. Friend—has made a very valid point, and I thank her for all her contributions to the formation and the continuing work of the APPG. She is right: there is a taboo surrounding baby loss, and we must break it. I remember the first debate about it that we held here, in November 2015, and the floods of e-mails and messages that we received from parents out there who were saying, “Thank heavens, someone is now talking about baby loss.” They had felt so enclosed, and unable to talk about it, to the extent that people would cross the street to avoid having to have that awkward conversation.

That is exactly why the pathway is so important. Although NHS professionals up and down our country are caring and compassionate to their very core, not everyone has experienced this kind of grief. It is important that the pathway is parent-led, because that enables parents to share the experience of what they went through, how they were feeling, and how things could possibly improve in the future. I encourage the hon. Lady to continue her work in the APPG and continue to participate in debates like this, because that shows the country as a whole that we are willing, ready and able to talk about baby loss, and will not stop talking about it until as have addressed some of these big issues.

[Jim Shannon]

The hon. Gentleman is being gracious in giving way—I thank him for that. One of my staff members had two miscarriages, and the loss for her was immense. What sustained her through that time of grief, which he knows about himself, was the support of family, friends and all of us associated with her, but probably more than anything else her faith and her Christian beliefs. Does he agree that it is critical that that is part of the pathway?

Cancer Treatment

Jim Shannon Excerpts

Thursday 19th April 2018 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to speak in any debate, but especially one on cancer. First, as others have done, I congratulate Baroness Tessa Jowell. I see her not in stilettos but as a real soldier and a real warrior. I thank her for her courage and determination. I thank the hon. Member for Croydon Central (Sarah Jones) for setting the scene. To pick out one speaker in particular, with no disrespect to anyone else, I thank the right hon. Member for Old Bexley and Sidcup (James Brokenshire) for his contribution. What a joy it is to see him back in the Chamber again making a valuable contribution, as he always does.

This is always a tough kind of debate to speak in, for a number of reasons. We rightly all use the statistics and numbers that are so informative, but tend to gloss over the pain felt by the families and loved ones. We rightly talk about how far we have come in terms of greater life expectancy, yet those families who watch this debate with an empty chair beside them cannot share the victory. We are rightly bombarded with requests from charities and families asking us to highlight their particular issue that needs to be addressed. We want to do that, yet we do not have the time to discuss all that needs to be discussed. We rightly discuss value for money in funding research, yet which one of us is comfortable in putting a price on the cost of the quality of life for someone, and which one of us is happy to dictate a cut-off age when someone is too old to be treated or given innovative new drugs? We all seek to do what is right and to do our best, but it can never be enough when it comes to a debate like this. My father is a three-time cancer survivor. He did not die because of cancer—he died three years ago of natural causes. His survival from cancer was down to the good work of the NHS, the skill of the surgeon and the care of the nurses—and it took all of our prayers.

I highlighted in my own press release background information from Brain Tumour Research, which was probably in the paper today. I recently had a photo with a lovely lady called Phyllis Scott, with whom I have had a great friendship over the years, in aid of raising awareness of brain tumours—I know that that is close to the Minister’s heart. I wore my country sports hat for the purposes of the photograph, and today I am wearing my MP hat to look at the issue of brain tumours.

Brain tumours reduce life expectancy by, on average, 20 years—the highest of any cancer. The statistics are well known. In Northern Ireland, 344 people were diagnosed in the last year. Some 60% of people diagnosed with a high-grade brain tumour will have a very short life in this world. The figures are shocking, but when we meet someone like Phyllis Scott, the human face is very clear. Some 62% of children who survive a brain tumour will be left with a life-altering, long-term disability. Brain tumours are the biggest cause of preventable or treatable blindness in children, as the right hon. Member for Old Bexley and Sidcup pointed out. Some 91% of adults said that their brain tumour affected their emotional and mental health. Those are the key figures—many of those diagnosed with brain tumours have tremendous issues.

I love the hard-hitting new Cancer Research advert that shows an older couple in bed together as a stark reminder that the issue is not simply surviving, but living with a husband or wife and children. The hon. Member for Redditch (Rachel Maclean) spoke about being a breast cancer champion. I am one too, and I very much wanted to do that. The number of people diagnosed in the UK went up by 17% between 2006 and 2016. Some 95% of women will survive one year and more than 80% survive five years or more. None the less, every year around 11,500 women and 80 men in the UK still die from breast cancer.

I have asked the Minister about the drugs fund many times, and so many other hon. Members have mentioned it that it would be remiss of me not to do so. The threshold is £30,000, and the hon. Member for Ilford North (Wes Streeting) mentioned putting a price on the drugs that help a young child survive. In Northern Ireland, the Department of Health, Social Services and Public Safety has now endorsed the NICE recommendations on Kadcyla, Ibrance, Kisqali and Perjeta, as a result of the flexibility shown by NICE, tough negotiation by NHS England and a willingness to compromise on price by the pharmaceutical industry. However, this flexibility, negotiation and compromise can lead to long delays in decisions. I urge the Minister to consider how we could best provide access to drugs more quickly and urgently to increase the quality time that people have to spend with their loved ones.

I want to put on record my thanks to Cancer Research, Macmillan, Marie Curie and others that make the difference to the quality of life that those who suffer from cancer experience. We must push forward and keep doing all we can, and know in the end that we gave all we had to fight this disease that affects our mothers and fathers, sisters and brothers, sons and daughters, grandchildren, even the person we buy our paper from—all the people we meet every day. Cancer is a blight on society, but if we continue to fight on, someday we will be able to say that we have won, and cancer has lost.

Cyber-bullying: Young People’s Mental Health

Jim Shannon Excerpts

Monday 16th April 2018 Commons Chamber

[Alex Chalk]

I am very grateful to my hon. Friend for that intervention. He should not be modest about his contribution, which was absolutely fantastic and gratefully received.

To say a little more about the context, recent research by the Prince’s Trust suggested that young people’s wellbeing has declined over the last 12 months and is now at its lowest level since the study was first commissioned in 2009. What is interesting as well is that this is not just a British phenomenon. A recent article by NBC in the United States, citing research from Johns Hopkins University, referred to an acute mental health crisis happening among members of the youngest generation of Americans, with, as the article put it,

“critical implications for the country’s future.”

Similar data is emerging from France and Germany.

Much of the debate in this House has been about a cure—about how we go about fixing the problems after they have emerged. We have debated achieving parity of esteem, funding child and adolescent mental health service beds closer to home, and so on. All that is vitally important, of course, but equal attention must be paid to prevention. Why is the surge happening in the first place? How can we stop it taking root?

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing the debate, and I sought his permission beforehand to intervene. With 20% of young people—that is one in five—indicating that their fear of cyber-bullies makes them reluctant to go to school, does he agree that much more must be done to thwart the faceless keyboard warriors who are making the lives of so many young people so very difficult?

[Alex Chalk]

I do agree. The hon. Gentleman makes the point very powerfully, and in a moment I will develop why I agree with him so wholeheartedly. I found from speaking to young people that the role of social media has become impossible to ignore. It is not the only issue, of course, but it is a recurrent theme. Although there appeared to be a correlation between the rise of social media and the decline in adolescent mental health, I, colleagues and hon. Members wanted to know if there was causation, too. The report provided powerful evidence to suggest that there is.

By way of context, I should make it clear what the inquiry and this debate are not about. The inquiry was not set up to blame all the world’s ills on the internet or social media. My view is that social media is broadly a force for good. Equally, the internet as a whole fosters social mobility and opportunity. It spreads ideas and enhances freedom across the world. The inquiry did not seek to address all the concerns posed by social media use either. It deliberately left out the issues of fake news, sexting, sleep deprivation and others. All those are important but have been traversed elsewhere, and dealing with them would have made the report unwieldy and unfocused.

Instead, the report and this debate are about one issue only, cyber-bullying, and that is because the evidence from young people, including those we spoke to in the inquiry, suggested it was the single biggest risk factor in mental ill health associated with social media use. We wanted to drill down on that by taking evidence not just from young people but from experts in brain development, and the evidence from more than 1,000 young people was clear: cyber-bullying can be utterly devastating. It is relentless and inescapable. We heard harrowing evidence from young people taken to the very edge of despair. No one is saying of course that bullying does not exist in the analogue world, but it is this added toxic cyber layer, with its extraordinary capacity to amplify torment, that can prove so destructive.

What is so troubling is that the inquiry also found that children are using social media at a very early age —61% had a social media account at the age of 12 or under—and for a long time too: nearly half use it for more than three hours a day and nearly 10% check their social media feeds between midnight and 6 am, with girls twice as likely as boys to be high-intensity users. A troubling proportion—68%—of young people were affected by cyber-bullying, and the medical evidence showed that its impact could last into adulthood, with what one expert called

“lasting consequences on the adolescent brain”.

It seems that this searing experience can be a scarring one too.

Autism

Jim Shannon Excerpts

Thursday 29th March 2018 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) on bringing this debate to the Floor of the House, and I thank all the right hon. and hon. Members who have made significant and wonderful contributions, including personal points of view, to this debate. World Autism Awareness Day is designed to highlight autism and, more importantly, the struggles that those who have autism go through and how we as a society can help them. We certainly are making strides towards that. The Minister will be able to highlight some of the things that we have done and, to be fair, some of the things that we still need to do.

Some local churches in my community allow local autism groups to use their facilities as a safe space to meet and have fun with the children in a controlled atmosphere. The Moviehouse chain of cinemas in Northern Ireland screens autism-friendly screenings on the first Friday of every month, making certain changes to make the experience more enjoyable for the child and their families, including having the sound and lights on low and no trailers, giving people the freedom to move around and take their own food and drink, and offering free entry for carers with a valid CEA card. Odeon cinemas also offer certain autism-friendly screenings.

I want to say a public thanks to those chains and to my own local cinema, Movieland Newtownards—now part of IMC chain since the sad passing of Ernie Watson—which has plans to begin autism-friendly screenings in my constituency. I suggest that other hon. Members have a chat with their local cinemas to see whether they will do the same. Such screenings may not make the most money—that is not what they are about—because people are allowed to bring in their own snacks for their children to eat and because there are no adverts, but they provide a service that is appreciated by families throughout the community. The life of an autistic child can be somewhat isolated, and the nature of the complex needs of the child can also mean an isolated family life for those who live with the experience every day.

Research cited by the Royal College of Psychiatrists that has been mentioned by others highlights the high levels of suicide among autistic people. Roughly 40% of autistic young people have symptoms of at least one anxiety disorder, compared with 15% in the general population. The hon. Member for Glasgow South West (Chris Stephens), who has just left the Chamber, referred to the welfare changes, and I want to put on the record my concerns about them. Autistic children and adults are affected by changes to ESA, work capability assessments and PIP. Assessors need to be aware of what it is to have autism. With respect, if they had that ability, it would make things a lot easier.

[Drew Hendry (Inverness, Nairn, Badenoch and Strathspey) (SNP)]

Constituents have told me that they are absolutely terrified by the assessment process, so does the hon. Gentleman agree that there needs to be a far more sensitive and direct approach to dealing with people with autism?

[Jim Shannon]

The hon. Gentleman is absolutely right, and he and I regularly share comparisons between our constituencies. Assessors need to be sensitive, reactive and understanding.

Autism is a massive issue for schools to deal with, and only a seasoned teacher may be able to spot the signs of autism in a child. The hon. Member for Berwick-upon-Tweed (Mrs Trevelyan) referred to a child who was able to go and sit on a cushion behind a desk, and that shows an understanding teacher who knows how to deal with such issues. We cannot reach out and cure the situation as such, but it is important that we build in the support systems. While there has been significant improvement in the number of diagnostic assessments, and many hon. Members have referred to early diagnosis—the hon. Member for Berwick-upon-Tweed referred to her own circumstances in a personal and honest way, and it is important that we listened to that—coverage is still very patchy. Will the Minister outline how the Government are ensuring equity of access across the country? Have discussions been held with the Northern Ireland Department of Health to ensure parity of accessibility?

Northern Ireland has a slightly different system in that we have the Autism Act (Northern Ireland) 2011, and the hon. Member for North Ayrshire and Arran (Patricia Gibson) referred to the Scottish legislation, which also came into force in 2011. The regions across the United Kingdom have some really good stuff in place and have done significant work, and I suggest that we should be exchanging that good practice. If we do that, I think we will all gain. Northern Ireland has gained from what has been done in Scotland, and Scotland and Northern Ireland can gain from what you do in England. I again suggest very gently that you could really gain from what has been done—[Interruption.] Sorry, Madam Deputy Speaker, not you; I meant the Minister. Someday I will learn not to use that word—you live in hope.

In Northern Ireland, one in 40 or 2.5% of children have a diagnosis of autism. Accurate prevalence figures for adults can be difficult because many adults with autism do not have a formal diagnosis so the statistics are misleading, but 25% of individuals with autism have an accompanying learning disability. It is not just the autism but the spin-offs such as anxiety disorders and learning disabilities. Their education may be a wee step behind, but we have heard good things today about the results for children when effort and time are put in.

The fact that four males are diagnosed with autism for every one female is perhaps an indication that we might need to address the gender issue. However, we know that it is sometimes harder to diagnose females with autism, so the statistics may hide the true number of autistic females.

Statistics show that 16% of autistic adults are in full-time employment, despite individuals with autism having ability. Again, it is important to put the issue of employment on the record. Many autistic people, especially those diagnosed in adulthood, have little or no access to post-diagnosis support, as the hon. Member for Cardiff West (Kevin Brennan) also mentioned. Young adults with autism should not be forgotten, so what are we doing nationwide?

Diagnoses of autism are as different as snowflakes, which means that a one-size-fits-all approach simply does not work. We have to look at it individually and not collectively, because that is not how it is done. We must diagnose the level of each individual and provide appropriate support not simply to them but to their family. It must also be highlighted that, although one in four people with autism has a learning disability, three in four do not. Whether or not there is a learning disability, we must do more to support all of them to reach their full potential rather than be held back by a lack of understanding from society in general.

Our job in this House, through the Minister, whom we are pleased to see and to support, is to ensure that adequate support services are in place and to raise awareness to foster greater understanding among the general public.

Patient Safety

Jim Shannon Excerpts

Wednesday 28th March 2018 Commons Chamber

[The Minister for Care (Caroline Dinenage)]

I wish to start by congratulating my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson) on securing this really important debate on patient safety. All patients have a right to expect care that is compassionate, effective and safe. The courageous testimonies of individuals such as Julie Bailey, who exposed the scandalous failings at Mid Staffordshire NHS Foundation Trust, and Sara Ryan, who campaigned fearlessly following the death of her son, Connor Sparrowhawk, while in the so-called care of Southern Health, show that safer care starts with listening to patients and their families.

It is important that we recognise that there are many victims when care fails—the families and the loved ones, of course, but also the healthcare professionals who carry the burden of their mistakes. The great majority of NHS patients receive effective and successful care. However, according to international studies, levels of healthcare harm range from 1% for the most “negligent” adverse events, to 8% to 9% for preventable adverse events. We are clear that any level of harm over 0% is unacceptable, and we believe that the route to a safer NHS is through transparency, learning and action. What is most frustrating is when harm persists, despite our having the knowledge and wherewithal to prevent it. There are approximately nine “never events” in the NHS every week—avoidable harms such as wrong-site surgery or foreign objects left after an operation.

Thirty years ago, the aviation industry stood at a similar crossroads. Since then, there has been a massive reduction in fatal accidents every decade, despite a huge increase in the number of passengers. According to the Civil Aviation Authority, there is an average of one fatality for every 287 million passengers carried by UK operators. Compare that with the 150 avoidable deaths every week across the NHS. That rate would potentially equate to the loss of 52 airliners per year.

How has the airline industry transformed its safety record so successfully? The key has been a “just culture” that recognises honest human error, but continues to hold people to account for criminal acts or wilful negligence. Creating a safe space that protects the evidence provided by pilots and air traffic controllers when there is an investigation is a cornerstone of the approach. It helps to create a culture in which people can be open about their errors and a system of learning from one’s mistakes, rather than blaming individuals.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Sleaford and North Hykeham (Dr Johnson) on securing this debate on an important matter. NHS staff are greatly restricted by their work and the long hours they do. We all know that and pay tribute to them. Sometimes, however, we have to look at better ways of keeping records and at innovations to streamline things to make sure that the real focus of NHS staff is on the work that they do. Has the Minister looked at streamlining and innovations to take away the red tape that restricts the caring job that NHS staff do?

[Caroline Dinenage]

The hon. Gentleman is absolutely right. The more we can innovate and put in place the technology that helps to streamline day-to-day processes, the more that will help NHS staff, who do such a marvellous job, to do their job even more effectively and efficiently.

As my hon. Friend the Member for Sleaford and North Hykeham rightly said, to err is human. I am told that every year, 30,000 motorists put diesel fuel into their petrol cars—that is around 15 every hour. Those people are not intentionally destructive or feckless, they are human. Of course, I am not making an analogy with medical mistakes, which can be significantly more damaging and life-changing than the need to get a new engine, but in the same sort of way we need to move away from a blame culture in health—away from investigations that single out one individual rather than seeing their actions in the context of a complex overarching system.

GP Recruitment and Retention

Jim Shannon Excerpts

Wednesday 28th March 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Thank you, Mrs Moon. I did not expect to be called quite this early, but I am very pleased to speak at any time in this Chamber, as everyone will know.

I thank the hon. Member for Houghton and Sunderland South (Bridget Phillipson) for setting the scene and giving us the chance to participate in the debate. Its title is “GP Recruitment and Retention”, and I am very pleased to speak on this topic. The title does not refer to a particular area, which gives me the opportunity to talk from a Northern Ireland angle—although as most hon. Members will know, that would not prevent me from speaking from a Northern Ireland angle anyway.

During the debate on the Northern Ireland Budget (Anticipation and Adjustments) Bill just last week, I raised the issue of GPs, out-of-hours services and so on. I highlighted the fact that we need to improve the accessibility of GPs and enhance the capability of GP out-of-hours services to help with the immense pressure that our accident and emergency departments are under. The fact is that we are an ageing population, which increases demand on GP services, and at present we seem unable to meet the demand.

The Minister and I seem to meet in this Chamber on many occasions, and also in many Adjournment debates in the main Chamber. He is obviously a very popular Minister, but he also has a remit that includes many of the issues in which I and other hon. Members have an interest.

In Northern Ireland, this issue has certainly been a big concern. GP practices have been moving away from the old surgery system to a new system in the hope of triaging demands on doctors and surgeries. Health is a devolved matter, but I want to give a Northern Ireland perspective to this debate. Thankfully, the Department of Health’s permanent secretary in Northern Ireland has released funding for a scheme that was approved by the outgoing Minister of Health but not implemented before the untimely demise of Stormont, which is now in limbo-land. It saw the investment of an extra £3.9 million, following investment earlier in the year of £1.9 million for elective care and £3.91 million to continue the roll-out of nearly 300 practice-based pharmacists. I know that the Minister is deeply interested in this subject, not just because he is the Minister responsible for it but because he has a genuine and sincere personal interest. I hope that details from Northern Ireland might be of some help in considering what is done here on the mainland and in other parts of the United Kingdom.

The permanent secretary said at the time:

“Given the current difficult financial position, investing nearly £10m more in GP services, the largest additional investment in recent years, reflects the Department’s commitment to the continued development of sustainable and accessible primary care services…The Department is also introducing changes to…eligibility to the sickness leave scheme for GPs.”

That is another thing we have looked at in Northern Ireland, and perhaps the Minister will comment on it. The permanent secretary continued:

“It is estimated that these changes will save GPs more than £2.5m per year in sickness leave insurance premiums.”

The thrust of the debate so far, and undoubtedly of the speeches to come, is about how we can retain GPs. The hon. Member for Houghton and Sunderland South clearly made that point, and I too think that that is what we need to try to do.

The move to which I have referred was made in a very uncertain political climate back home in Northern Ireland. Few other decisions to implement schemes have been taken by any Department’s permanent secretary. We are slowly moving towards what will perhaps be a hybrid system of government in Northern Ireland, whereby we can ensure that the health schemes move forward.

I have spoken to former GPs, who have illustrated to me how much the system has changed and how happy they are to retire. Some have begun to do a few hours in GP out-of-hours services, which takes a bit of pressure off the ordinary GPs, but it is important that we have a system that sustains itself, and the pressure and stress that services are under has seen most GPs walk away from that system. We are trying to stop GPs walking away—that was the point that the hon. Lady made in introducing the debate, I fully support it. The simple fact is that our doctors cannot cope and we need to help them find a new way forward.

In 2016, 36% of the 15,430 people who died in Northern Ireland were aged under 75, compared with 50% 30 years previously. The resident population of Northern Ireland rose by 10,500 people to reach 1.862 million in the year to June 2016. Every GP surgery knows that the people on their books who need the most attention are the grey vote and the young families. Our GPs are great, and we support them greatly. We understand their position—we know the pressures that they are under and we have the deepest respect for them.

One of my local surgeries has heavily invested from its own budget in a machine that can determine whether chest infections are bacterial through the practice nurse taking blood and analysing it on-site. That innovation stops the surgery sending people for analysis in hospital and facilitates the provision of better care in the GP surgery. It allows antibiotics to be prescribed and means less pressure on the hospital. Such a machine would help every surgery. Sometimes we have to look at a different way of doing things. If we can do them better, let us do that. We should be making funding for such innovations available, for the benefit of all of us across the whole United Kingdom of Great Britain and Northern Ireland.

Due to the stringent nature of benefits assessments, many practices in my area now refuse to give support letters for benefits. That is another pressure on GP surgeries all the time. I am constantly contacting GPs on behalf of my constituents, saying that they need a letter about their health condition to support their application for disability living allowance—personal independence payment, as it is now—and employment and support allowance. The GP says, “Let them write to us; we will reply,” and they do, but they usually send a list of the constituent’s appointments with the GP, which is not what PIP is about.

I am adhering to your timescale, Mrs Moon—I have worked it out, so I know what time I will have to stop.

A retired doctor I am very friendly with suggested to me—I know the Minister is sympathetic to this idea—that we have a bursary scheme whereby if a medical student will commit to doing five years or more at a surgery, they will have some or all of their student debt written off. That would encourage people to get into GP surgeries and make a difference for five years or so. I am given to understand that the Department are looking into schemes like that, and I hope so. I am interested to hear the Minister’s response to that idea, because I think that might provide encouragement for some of the young student doctors who wish to go on to general practice. If we provide that incentive through a bursary, I think it will be a massive step forward in addressing the issues, as the Department proposes to do by reducing the pressure on GPs and increasing their number.

Have any discussions taken place with the regional devolved Administrations so that they can respond? The Scottish National party spokesperson, the hon. Member for Central Ayrshire (Dr Whitford), has vast knowledge of medical issues, and I know that her contribution to this debate will make clear what has been done in Scotland. Yes, it is a devolved matter, but the NHS is nationwide and this scourge in our surgeries is in every area. A focused, co-ordinated approach is the best one to take, and I ask that the Department focuses on this vastly important issue. We need good GPs, and we need to support GPs. If we do not do that, there will be a domino effect on our hospitals and all other NHS institutions. We need to encourage our first line of defence, which is GPs, and ensure that defence is sure and certain. At the moment, the fact of the matter is that it is struggling.

--- Later in debate ---

[Dr Whitford]

I absolutely welcome them. Similarly, in Scotland the new graduate medical programme will take on people who have done other degrees, and that is particularly aimed at encouraging those people to go into general practice and rural practice.

[Jim Shannon]

May I gently ask the hon. Lady whether Scotland has a bursary scheme? Both I and the hon. Member for Caithness, Sutherland and Easter Ross (Jamie Stone) referred to that, as we feel that such a scheme might help.

[Dr Whitford]

Obviously, in Scotland we do not have tuition fees, so that is a considerable difference in student debt, particularly for a five-year medical course. We do not, as yet, have a system of bonding or tying students down. The worry is that that would create a feeling of being trapped, and that as soon as the bond finishes, the person runs away. I am sure that all Governments in the UK are thinking about such things, but it is about working out whether such a scheme is beneficial or negative in the long term. We do have a GP bursary scheme for those entering a traineeship, so that when someone moves from a hospital where they work on-call, and becomes a GP trainee, the drop in salary is compensated.

As the hon. Member for Caithness, Sutherland and Easter Ross (Jamie Stone) said, in Scotland we have a particular issue with the provision of rural services. We have a much higher ratio of GP per head of population, with 91 GPs per 100,000 people, as opposed to 71 in England, 73 in Wales and 70 in Northern Ireland. What often gets forgotten when people look at the weirdly angled weather map, is that although Scotland is one third of Great Britain’s landmass, it has 8.3% of the population. Anything that involves providing services across an enormous area is a challenge. We also have 70 inhabited islands that require services. Our recruitment and retention fund is putting additional money into this issue. The Scottish Rural Medicine Collaborative involves 10 health board areas, and relocation money—the golden hello for trainees or indeed any GP moving into practice—has been increased from £2,000 to £5,000. Any GP moving into rural practice will have a golden hello of £10,000, and trainees will have £20,000. That has been rolled out from the 44 island practices to all 160 rural and remote practices.

One key issue driving this problem, which perhaps is not often recognised, is the change from full-time to part-time working. Headcount for GPs is up by 5% in Scotland, but down by 4% from 2013. The change seems to have been in the last five years—indeed, there is a real culture change as the next generation comes in. When my husband became a GP, he was the first part-timer in his practice. They interviewed all the women before him, because it seemed so weird to have a man who wanted to work part time—that is because I was always in the hospital. Now, out of eight GPs, only two are full time. The number of patients in the practice has not changed, but instead of six actual GPs, there are eight. Therefore, the average GP is working considerably less. In England, the change in headcount of those looking to work full time meant that numbers went from 39,000 to 27,000. That shows the dramatic difference between the full-time equivalent and headcount, and it means that the average GP is working about 70% of what a full-time GP worked. The problem for any Government is that they then need to train 30% more GPs to cover that.

The key, however, is satisfaction. At the deep end, the 100 most deprived GP practices in Scotland face the inverse care law: people do not demand, and therefore service is not delivered. Govan health centre is running the SHIP project—social care and health integrated partnerships, and that innovation is now being picked up elsewhere. It means that GPs have extra time, and a significant multidisciplinary team, but in those areas, 31% of patients will have four or more conditions.

We have an even deeper problem, however, which is the attitude to general practice. Other specialisms look down their nose at it, and therefore a student may not be encouraged to enter general practice. Students are not getting enough exposure to general practice, either as students or in their foundation years. We also have a particular problem with the two foundation years since “Modernising Medical Careers” came in. We pour all our young doctors into a hopper—a computer—and they get divvied out. They will struggle to be with their family or where they were living before. In 2011, 29% of young doctors left after the two foundation years. Last year it was 50%. They do not feel part of the team or have a sense of continuity—things that are utterly crucial to general practice. Therefore, although we may be putting in more money and coming up with schemes, we must also reform the foundation years so that we do not have an entire lost generation.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Steve Brine)]

It is a pleasure to see you on your throne this afternoon, Mrs Moon.

I have a lot of time and respect for my shadow, the hon. Member for Burnley (Julie Cooper), but what a counsel of despair that was. As the sun comes out after a day of rain in London, let me see if I can bring some sunshine to our proceedings.

I congratulate the hon. Member for Houghton and Sunderland South (Bridget Phillipson) on securing the debate. She spoke passionately, as always, about her constituents and her area. The hon. Member for Strangford (Jim Shannon) said that we are often in here together and share many of the same subjects. That is true but, to be fair, he is in here even more than I am.

I note the Prime Minister’s announcement yesterday that she intends to bring forward a long-term plan for the NHS with the Secretary of State, Ministers and our partners. That will build on our record of extra funding for the national health service in England year on year since 2010, to deliver a NHS that is fit for the future. I agree with the shadow Minister that this is about the wider NHS, and that we cannot see primary care in isolation. We are able to do what we have done for the past eight years because of the state of the economy, which we have got into a better place. When the economy fails, the NHS catches a cold or much worse, which is important.

[Jim Shannon]

rose—

[Steve Brine]

I will not give way at the moment.

As everybody has said, we recognise the importance of general practice as the heart not only of our NHS, but in many ways of the country. It is as much about prevention before people get into the NHS as it is a gateway to it. That point was made well by the hon. Member for Central Ayrshire (Dr Whitford), who spoke for the SNP. As others have kindly said, I am absolutely committed to ensuring that the NHS has the resources, workforce and Government backing to make it fit for the future.

As the hon. Lady said, it is a great success that we are living longer, but an ageing population and more people living with long-term conditions, or so-called comorbidities, means that general practice will become more important than ever in keeping well and living independently for longer. On Friday, I spent a morning sitting and observing—lucky patients—a general practitioner in Hampshire, not in but near my constituency. I watched him do his morning surgery. It was a brilliant thing to do as the Minister with responsibility for primary care, but I would recommend it to any Member who has that relationship with GPs in their area. By sitting and watching, it is possible to see what comes through the door and the pleasures of general practice, which is not dissimilar to the surgeries we hold as MPs.

The number of people over the ages of 60 and 85 is set to increase by about 25% between 2016 and 2030, and the number of people living with long-term conditions is increasing. In 2017, almost 40% of over-60s had at least one long-term condition. I am sure we can all think of people in our families who are in that position—I certainly can. We recognise that that places general practitioners in England under more pressure than ever before, and are taking comprehensive action to ensure that general practice can meet the demand.

The NHS set out its own plan for general practice in the general practice forward view. We have backed that with additional investment of £2.4 billion a year by 2020-21, from £9.6 billion in 2015-16 to more than £12 billion by 2020-21. That is a 14% increase in real terms. That is not made up—those are genuine figures, on the record. As has been said, we have also announced our ambition to grow the medical workforce to create an extra 5,000 doctors in general practice by 2020, as part of a wider increase to the total workforce in general practice of 10,000. We recognise that that is an ambitious target—it is double the growth rate of previous years—but it shows our commitment to growing a strong and sustainable general practice for the future.

This debate is about recruitment and retention, so let me break those down. NHS England, which we work with—it is approaching its fifth birthday—and Health Education England are working together with the profession to increase the GP workforce. That includes measures to boost recruitment, address the reasons why GPs are leaving the profession and encourage GPs to return to practice. We recognise that GPs are under more pressure than ever, but we want them to remain within the NHS and are supporting them to do so.

The hon. Member for Stroud (Dr Drew) made the point about recruiting and then following through. As I said at oral questions last week, there are things we can do, but there are things the profession can do too. If doctors in general practice are a counsel of despair, it is little wonder that people do not want to follow them. There are some good, positive voices in general practice, ably led by Helen Stokes-Lampard, who leads the Royal College of General Practitioners. She is a brilliant example of the cup being half full. That kind of positivity is very important—it is a partnership.

Lymphoedema Services

Jim Shannon Excerpts

Tuesday 27th March 2018 Westminster Hall

[Tonia Antoniazzi (Gower) (Lab)]

I beg to move,

That this House has considered provision of lymphoedema services.

It is a pleasure to serve under your chairmanship, Mr Gray, and I thank the Minister for being here to respond. This is the first Westminster Hall debate I have secured, and I am proud it is on an issue that affects many people in the United Kingdom. It was first drawn to my attention by my constituent Melanie Thomas MBE.

Lymphoedema or chronic oedema is a chronic swelling due to the lymphatic system failing. It mainly occurs when the lymphatic system is damaged by surgery, radiotherapy, trauma or infections. People can also be born with lymphoedema if the lymphatics have not developed properly. It affects people of all ages, and the swelling can occur in any part of the body. People think it is rare, but it is not, and research suggests that about six people per 1,000 have lymphoedema which, to put that into perspective, is about 400,000 people in the UK. If we look at the legs and feet of people in supermarkets or even here in Parliament, we will see swollen oedematous legs.

The problem of chronic oedema is getting worse as we get fatter and live longer with the consequences of other health conditions. Fifty-five per cent. of the average community district nurse case load is people who have swollen oedematous legs, with or without wounds. Such nurses, however, are not lymphoedema experts, and most do not have the skills in lymphoedema bandaging or prescription of compression garments.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on achieving this Westminster Hall debate. She referred to 400,000 people suffering from lymphoedema. Macmillan Cancer Support has estimated that there are 124,000 sufferers in the UK. Does she agree that there must be a better NHS support system, including more practice nurses, and specific training in lymphoedema care? The Government need to allocate the funding to support those suffering from this chronic condition.

[Tonia Antoniazzi]

I wholly agree with the hon. Gentleman. I will discuss training needs later—there is a definite need.

Lymphoedema can affect people physically, psychologically and socially. It has a significant impact on quality of life and prevents people from undertaking the normal activities of daily living. Reported issues include: massively swollen limbs that leak through clothes and soil carpets and beds; poor mobility; the inability to find shoes that fit and a limited choice of clothes; increased pain; inability to work; frequent admissions to hospital with cellulitis; stigmatisation and people being scared, anxious and depressed; and inability to cope and a feeling of lost control.

We might think that people can get treatment, but they cannot—that is the problem. Lymphoedema services are scarce. People suffering with lymphoedema cannot access the treatment they need or deserve. There is wide variation in the organisation and delivery of lymphoedema services throughout the United Kingdom. Some areas have commissioned full lymphoedema services—services for both cancer and non-cancer patients—others offer cancer-only services, and others provide no lymphoedema services at all.

Lymphoedema services that have been commissioned range from lone practitioners to small teams, so waiting and treatment times vary, as do treatment options. That diversity is not a result of patient need and is not patient-centred. Most people with lymphoedema go undiagnosed and untreated for long periods as a consequence of the poor level of knowledge among health professionals and the limited support from healthcare managers and commissioners. Lymphoedema is a growing condition, so what support are the Government providing to develop pre-graduate and postgraduate education for healthcare professionals to raise awareness of the condition? Something has to change.

Becoming aware of the lack of lymphoedema services in Wales, the Welsh Government listened to its members. I am very proud of that. The Conservatives might slate the Welsh NHS in the Chamber, but this is a wonderful area of work that has been developed in Wales, and I want to hail it. In 2009, the Welsh Government commissioned a lymphoedema strategy for Wales, which sets out clear aims to enable access for all lymphoedema patients to the appropriate services at the right place, at the right time and with the right person, regardless of whether their lymphoedema is related to cancer. Lymphoedema strategies have also been written in Northern Ireland and Scotland. England is the only nation not to have one.

In 2011, the Welsh Government invested £1 million to implement their lymphoedema strategy. The funding enabled lymphoedema services to be set up under every health board in Wales, managed by Lymphoedema Network Wales to maintain strategic oversight of the strategy for lymphoedema in Wales. Services are also made available in the more rural areas of Wales by the Tenovus Cancer Care mobile unit, which works closely with Lymphoedema Network Wales and the Abertawe Bro Morgannwg University Health Board.

Lymphoedema has always been a chronic, incurable condition, but new evidence suggests that significant improvements can be made for patients. In Japan and Europe, a super-microsurgical technique, which joins the defunct lymphatics to a functioning vein, has seen a 96% reduction in cellulitis episodes, and 70% of treated patients have stopped utilising compression garments as a result. The technique—lymphatic venous anastomosis, or LVA for short—is available on the NHS only in Wales. The Welsh Government supported the investment to make that happen and 42 patients per year can now have the innovative surgery that has the potential to cure their lymphoedema.

Phenylketonuria and Kuvan

Jim Shannon Excerpts

Thursday 22nd March 2018 Commons Chamber

[Vicky Ford (Chelmsford) (Con)]

I would like to bring to the House’s attention the condition known as phenylketonuria and the drug sapropterin, which is known under the trade name Kuvan. I very much thank my hon. Friend the Member for Spelthorne (Kwasi Kwarteng) for being here today; he raised the same matter in an Adjournment debate six years ago. I also thank the Minister—another fantastic Essex MP—for being present, as well as the hon. Member for Strangford (Jim Shannon), who has a constituent with the condition. I co-chair the all-party group on rare, genetic and undiagnosed conditions, but I raise this issue primarily as a constituency MP.

This is my first Adjournment debate, and I would like to discuss the case of one of my youngest constituents. It was at one of my first constituency surgeries that I met Natasha Cotter, who told me about her daughter, Cait. Cait and her father are in the Gallery. Cait has phenylketonuria, otherwise known as PKU. It is very, very rare.

I am sure that all of us who are parents remember those first moments when we hold our new-born baby in our arms before it is taken away and given the heel-prick test. For the vast majority of children, that test is clear, but for one in 10,000 babies, it will show that the child has PKU. Without treatment, these children can become very suddenly and very seriously ill.

People with PKU cannot metabolise phenylalanine, an amino acid found in protein. Without correct treatment, the amino acid can build up to levels that are toxic to the brain. If PKU is unmanaged, it results in severe and irreversible brain damage. The treatment for children affected is to remove almost all natural protein from their diet.

My constituent Cait is 10 years old. She can metabolise only 11 grams of protein a day. She is restricted in every eating experience of her life. Her day is ruled by limited food and constant protein supplements—those drinks taste foul and smell unpleasant. When other children are sharing a meal, or perhaps a birthday cake or chocolate, Cait can only have her protein drink. Her parents tell me that she is permanently hungry. They say that every day since she was born has been filled with the joy that she brings, but also the misery associated with the daily management of her lifetime condition.

The severe restrictions of a PKU diet place a great burden on patients and their families. The phenylalanine content of all food needs to be carefully restricted, including with vegetables such as potatoes and cauliflower. Cait’s grandmother has given up work to care for her. In fact, research shows that more than half of the carers of a child with PKU have stopped working, reduced their hours or changed their job so that they can help to manage the child’s diet. Unsurprisingly, the constant worry about what their children are eating, and whether brain damage may be caused by everyday food, puts a huge emotional strain on families. A recent study found that 59% of mothers caring for PKU children had clinical levels of psychological distress themselves. Furthermore, problems with learning difficulties are frequently reported in children with PKU. A survey of families found that 43% of children had problems staying focused at school, with 30% of families reporting that their child had depression or anxiety.

But there is hope. For one month, Cait was put on a trial of sapropterin, a drug made by BioMarin and marketed under the name Kuvan. During that trial, Cait’s ability to metabolise phenylalanine increased threefold from 400 mg to 1,200 mg a day—the equivalent of 24 grams of protein—which allowed Cait to eat a normal vegetarian diet. Her parents told me that she was a different child and so happy to be able to eat real food. Even a visit to the supermarket was a real adventure. Her mood lifted, the nightmares stopped and she increased in alertness. Her teacher asked what had changed, because she was a different pupil at school.

Sapropterin is the only licensed non-dietary treatment for PKU. It does not work for all genetic variants of the condition, but it benefits about 20% to 30% of sufferers. That is a tiny number of people: about 150 children in the whole country, or, including adults, fewer than 350. These people are so rare, but for those such as Cait, the drug is life changing.

Sapropterin is available in Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Estonia, France, Germany, Hungary, Italy, Latvia, Lithuania, Luxembourg, the Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey and Ukraine, as well as the United States of America. However, except for a small number of women during pregnancy, it is not available in England on the NHS.

I have written to the Secretary of State for Health and Social Care to draw Cait’s case to his attention. I have also written to my local NHS clinical commissioning group, which sent me to NHS England. NHS England recommended an individual funding request, but for such a request to be successful, the patient has to be considered exceptional. So far, only those with additional conditions have been able to access the drug via that route. The patient has to prove that they have PKU and another condition, but how likely is that? PKU children are exceptionally rare—there are only 150 of them in the country—so they are already exceptional. For patients such as Cait, this is an impossible barrier. In fact, I have been told that only three patients have ever successfully managed to be prescribed the drug through an individual funding request.

Last summer, NHS England said that it would review the decision on sapropterin. Last month, it wrote to the patient organisation, the National Society for Phenylketonuria, to say that the decision would now be made by the National Institute for Health and Care Excellence. Last week, the patient organisation wrote back to NHS England because it is not clear what process will be used or when the decision process will begin.

I understand that funding for all treatments is not unlimited and that decisions do need to be made in a rational manner, but patients with PKU believe that, as well as the positive health benefits, there would be positive financial benefits to the public purse from commissioning this drug. The NHS estimates that Kuvan could cost between £14,000 and £45,000 per patient per year, but BioMarin, the manufacturer, has told the patient organisation that it is willing to make substantial discounts.

Furthermore, the price needs to be weighed against the costs of not having the drug. For adults, the protein-restricted diet alone costs the NHS £12,000 a year. The average cost to the taxpayer of each parent who gives up work to care for their child is another £5,500. A third of children need additional help at school, the cost of which varies, but the typical notional budget for a child with special educational needs is another £6,000.

[Jim Shannon (Strangford) (DUP)]

I am not normally in the Chamber for the Adjournment debate on a Thursday afternoon, but I am here today because of the timing of this debate and because, as my party’s spokesperson on health, I am very interested in this subject. The hon. Lady has very passionately, and in a forensic and detailed way, outlined the case for making this drug available. Not only does the individual need the drug, but the family sometimes need it as well, because of the mental and physical impact the situation has on them. I support the hon. Lady’s request that the Minister makes this happen. For 150 people, it is a small price to pay. As the hon. Lady said, when we add it all up, the good health of a child or an adult is worth such a price.

[Vicky Ford]

I thank the hon. Gentleman very much for his comments. I completely agree that we need to look at the wider issues. In fact, we should also look at what happens if the condition is not successfully managed, because that can be even more expensive. For example, if a woman with PKU gets pregnant and the condition is not well managed, the child she bears will be at very high risk of having substantial long-term disabilities. If a child with PKU does not manage to stick to their diet, they are at risk of permanent brain damage. All those wider costs should be taken into consideration when making this assessment.

The patient organisation is concerned that NICE may decide to restrict the drug and offer it only to those it considers to be high-need patients. The drug might be given only to patients who have refused to follow the strict diet, so it would actually discriminate against those who have done the right thing and worked so hard to maintain that very difficult dietary control. I say to the Minister: let us to try to break this deadlock. BioMarin and NICE need to engage with each other in a transparent way that has the full support of the patient organisation. The whole patient population should be considered, and those who do the right thing with their diet should not be put at a disadvantage.

There is a bigger issue. This is not just a debate about one patient or one drug, but a wider one about how we in Britain approach new medicines and treatments, especially for rare diseases. Britain is a world leader in science, especially the life sciences, and we are home to the human genome campus. The amazing, visionary 100,000 genomes project has set us at the forefront of the global revolution in medical research. Our unique NHS gives researchers the ability to access large quantities of reliable and detailed patient data, which helps them to identify very, very specific genetic divergences. That means that medics can increasingly pinpoint the exact cause of a rare condition, and discover specifically which one of a new generation of personalised medicines will give the most effective treatment for an individual’s condition. Life sciences lie at the heart of the Government’s industrial policy. However, if we are to stay at the forefront of world medical research, it is vital that discoveries are not only made here, but trialled, tested, and prescribed here.

NICE is a world leader in assessing medical health technology, and many other countries have chosen to follow its approach. Nevertheless, the world of medical research is changing exponentially, and if NICE is to continue to hold the confidence of researchers, physicians and patients, it must prove that it can evolve and evaluate even the most innovative treatments, and especially advanced medicines such as cell and gene therapies. When NICE approves a new treatment, we must ensure that the NHS can commission it effectively. Today the NHS cannot commission a drug unless it has been to NICE. Before a drug is granted marketing authorisation, there is the option for the company to make it available through the early access to medicines scheme, but after that marketing authorisation, and before NICE approval, there is no route to funding except through individual funding requests.

As the Minister knows, most rare diseases are very, very rare—at least some of them are—and the overall cost of treating them is a small part of the NHS budget. We must find a better way for all parties to work together to facilitate the passage of orphan drugs for rare conditions through NICE and the commissioning process.

I thank colleagues and the Minister for listening to my remarks, and I thank the Cotter family for being here today. Britain is a world leader in medical research, so let us ensure that British patients, such as my constituent, Cait, can be among the first in the world, not the last, to benefit from medical discoveries.