Swine Flu Vaccination: Compensation

Jim Shannon Excerpts

Tuesday 12th January 2016 Westminster Hall

[Stephen Twigg (Liverpool, West Derby) (Lab/Co-op)]

I beg to move,

That this House has considered the compensation for people with narcolepsy and cataplexy linked to swine flu vaccination.

It is a pleasure to serve under your chairmanship, Mr Chope. I thank Mr Speaker for allowing this debate on an important issue, and I thank the Minister for being here to respond to the concerns that I will raise on behalf of my constituent, Lucas Carleton.

I begin by saying something about vaccinations in the broad sense. We are fortunate in this country to have a robust and comprehensive vaccination policy. The policy has saved countless lives since its incarnation almost 100 years ago. Through our vaccination programmes, and those of other nations, we have successfully eradicated diseases such as smallpox across the world, and have reduced the number of people affected by polio by something like 98% over the past three decades. To this day, the advice from mainstream medical professionals and the national health service is that everyone should be vaccinated, not only to protect themselves but for the wider benefit of the communities in which we all live.

Historically, we have seen the tragic consequences of terrible epidemics that vaccinations can protect us against. For example, during the ’20s and ’30s, Spanish flu killed more people than the first world war had. Vaccinations, which are often brushed off in our everyday lives as a painful exercise, save thousands of lives a year, reducing human suffering and misery on a huge scale.

There is no serious scientific debate among mainstream scientists about the benefits of vaccination to public health—medical advice is clear that vaccination is one of the most successful and cost-effective public health measures—but vaccination is not without controversy. There have been a small number of instances when vaccinations have been responsible for adverse reactions, causing sometimes long-term and sometimes irreversible problems. I stress that that is rare, but tragically it is the reason we are here today.

During 2008 and 2009 there was a global swine flu pandemic, also known as the H1N1 pandemic. The particular strain of flu originated in Mexico, but it quickly spread, leading to the World Health Organisation issuing its first ever “public health emergency of international concern” declaration. Cases were confirmed in 171 countries and more than half a million people are thought to have died as a consequence.

During the outbreak, the British Government decided to purchase enough swine flu vaccine to immunise the entire population with two doses, meaning that 120 million doses were ordered. Almost 99% of the vaccines that were given out were Pandemrix, manufactured by GlaxoSmithKline—GSK.

Vaccines, as with all pharmaceutical products, are subject to extensive clinical trials. However, it is recognised that during a pandemic the trials may not be as rigorous as they would otherwise be, because of the demand to safeguard lives. Completing mass trials can takes months or even years. For that reason, the European Union intervened and licensed Pandemrix for use within the EU, including the UK, without the completion of the normal rigorous trials. That was followed by advice from the UK’s Joint Council for Vaccination and Immunisation, which advised that the Government begin immunisation to protect against a swine flu pandemic in this country.

As a consequence of the speeding up of the licensing process by both the EU and national Governments, GSK was not prepared to supply the vaccine to Governments unless it was given indemnity from any liability. The UK Government gave GSK that indemnity. For a number of reasons, other countries were much more cautious about granting an early licence. For example, the Food and Drug Administration in the United States had a policy of not licensing adjuvant vaccines—that is where a substance is added to vaccines to increase the body’s immune response—without robust clinical trials demonstrating that they are safe. Adjuvant vaccines have additional chemicals that speed up the body’s immune reaction to the antigen, and it is considered that that sometimes increases the risk of adverse reactions. That possibility led other countries, such as Switzerland, to license Pandemrix only for adults and not for children.

Pandemic swine flu vaccinations were added to the Vaccine Damage Payment Act 1979 by the Vaccine Damage Payments (Specified Diseases) Order 2009 in September 2009. The vaccine was added to the Act for the duration of the pandemic campaign, which lasted from October 2009 to August 2010. The campaign ended when the Swedish and Finnish Governments expressed concerns about a vast increase in the number of paediatric narcolepsy cases in children under 10. The condition usually shows symptoms in those in the 15 to 30 age bracket. It was not until August 2010 that the Swedish and Finnish Governments discovered a link with Pandemrix. On 1 September 2010, Finland stopped vaccinating with Pandemrix. The UK Government discontinued the pandemic campaign from the same date, but encouraged GPs to continue vaccinating with Pandemrix where no seasonal flu vaccine was available.

[Jim Shannon (Strangford) (DUP)]

Figures indicate that one in 2,000 people have narcolepsy that is not related to vaccination. When it comes to compensation, how would the hon. Gentleman ensure that those who are vaccinated and are due compensation actually get it?

[Stephen Twigg]

The hon. Gentleman’s intervention is timely, because he raises the issue to which I now turn. Lucas Carleton is a young boy who lives in my constituency in Liverpool. On 17 January 2011, he was vaccinated with Pandemrix. He was seven years old at the time and was in good health. His mother, Pauline, asked her GP to vaccinate Lucas because a family friend had recently been very ill with swine flu and, perfectly understandably, she believed it was a responsible step to get her son vaccinated. A week or two after Lucas received the vaccination, he began to experience excessive daytime sleepiness, which is a common characteristic of narcolepsy. He also started falling when he laughed or got excited, made strange facial expressions and experienced a loss of control of his tongue. That is known as cataplexy and is a common symptom of narcolepsy. After two to three weeks, Pauline sought medical help from a GP and Lucas was taken to hospital on a number of occasions. In August 2011, he was diagnosed with narcolepsy.

Narcolepsy is an incurable neurological disorder that until 1999 was classified as a psychiatric condition. Its main symptoms involve excessive daytime sleeping, hallucinations, sleep paralysis, temperature control problems and cataplexy. Cataplexy is a side symptom of narcolepsy that causes involuntary muscle relaxation brought on, for example, by laughing or anger. Narcolepsy begins in the hypothalamus, the part of our brain that controls our autonomic nervous system, which involves processes such as breathing and the regulation of the heart. Narcolepsy occurs when the brain cells that produce neurotoxins in the hypothalamus are destroyed, either through a trauma or through the body’s immune system mistaking those cells as foreign bodies.

The Department for Work and Pensions has accepted that the Pandemrix vaccine is capable of causing narcolepsy in children. It has also accepted that, in many cases, Pandemrix did in fact cause narcolepsy in children. However, it disputes that narcolepsy amounts to a severe disability. That is an issue on which the DWP has been defeated in court, but I understand that it is appealing against the decision. Herein lies the issue: the 1979 Act recognises that there can be adverse reactions to vaccines that can cause severe and irreversible damage to patients. Since the Act was passed, around 900 people have been awarded compensation, which is a very small number when compared with the 650,000 children vaccinated every year. Compensation can range from £120,000 into the millions.

The pandemic swine flu vaccine was part of the 1979 Act from September 2009 until it was removed by the Vaccine Damage Payments (Specified Disease) (Revocation and Savings) Order 2010. That is preventing Lucas from claiming compensation, as he had the vaccine administered outside that period, in January 2011. If the pandemic swine flu compensation period was simply extended to April 2011, Lucas and others who had adverse reactions could claim compensation for the reaction to the vaccine.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 5th January 2016 Commons Chamber

[Alistair Burt]

Herbal products are slightly beyond my normal portfolio remit, but anything that assists in social care and makes people feel better and can add to their vitality and wellbeing is to be welcomed. I am sure in many local areas they are taken extremely seriously.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for his response. Integration and improving care outside of hospitals is just one way we can revolutionise the health service. Will he outline any links his Department is exploring between reducing pressure on A&Es and using care provision outside of hospitals to facilitate reducing that pressure?

[Alistair Burt]

Absolutely, and a number of the pilots and pioneer programmes are doing just that. Early results from the living well programme in Penwith in Cornwall show a 49% reduction in non-elective admissions to hospital and a 36% reduction in emergency admissions to hospital. So the hon. Gentleman is right: better social care and better integration may have, and should have, an impact on hospital admissions and make sure people are receiving the most appropriate care in the most appropriate place.

Victims of Contaminated Blood: Support

Jim Shannon Excerpts

Wednesday 16th December 2015 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for her response to the urgent question. Brian Carberry from County Down contracted hepatitis C from contaminated blood in July this year. Compensation is always important, but the really important issue for those affected is that it is not enough when a problem is health related. What discussions has the Minister had with the Northern Ireland Health Minister, Simon Hamilton, to tackle this issue?

[Jane Ellison]

My officials are working closely with their opposite numbers in all the devolved Administrations. As we move towards publication of the consultation, I will look to communicate directly with my opposite numbers in the devolved Administrations and pick up all these points.

Specialist Neuromuscular Care and Treatments

Jim Shannon Excerpts

Tuesday 15th December 2015 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. It is always a pleasure to follow the hon. Member for South Down (Ms Ritchie), who made an impassioned plea on behalf of her constituent. Every one of us has constituents who suffer from Duchenne muscular dystrophy and other diseases and problems, so it is always good to make a plea on behalf of them in this Chamber. As always, it is good to see the Minister and the shadow Minister here.

I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on setting the scene for us all. She clearly outlined the issues, and asked questions of the Minister that we all endorse and support. I thank all other Members who have spoken. I am my party’s spokesperson on health, and I hope to find out about promising developments on the mainland that can be taken back to Northern Ireland, and that thoughts from Northern Ireland can be explained to the Minister. Perhaps the combination of the two can help us to look forward together, in ways that are to our advantage.

As other hon. Members have said, there are some 60 different types of neuromuscular condition, and it is estimated that around 60,000 to 70,000 people in the UK live with neurological conditions that affect their muscle function. Duchenne muscular dystrophy has been mentioned in particular. A couple of my constituents have that condition, and I am aware of the issues. At an event at the Methodist central hall across the way, people with the condition from across the United Kingdom of Great Britain and Northern Ireland clearly explained their needs, the issues—such as the massive advances in medical technology—and the best approaches. There are different levels of Duchenne, and what is medicine for one may not be medicine for another; that is the point I am trying to make.

In Northern Ireland, an estimated 1,600 people in the Southern Health and Social Care Trust area alone are diagnosed with neurological illnesses each year. That is equivalent to the number diagnosed with a major cancer; the conditions we are debating are of as great a relevance as some better-known ones. An estimated 34,000 people in Northern Ireland suffer from a disabling long-term neurological or neuromuscular condition such as epilepsy, multiple sclerosis, Parkinson’s disease, or one of the rare disorders such as motor neurone disease or muscular dystrophy, including Duchenne muscular dystrophy. Neurological symptoms such as headaches are one of the most common reasons for seeing a general practitioner, and they account for up to 8% of emergency department visits.

Last year, a new dedicated out-patient centre for neurology, with some responsibility for neuromuscular issues, was opened in Northern Ireland. That has been a positive development in the Province, helping with the nationwide momentum for access to treatment, and better treatment, for those living with neurological conditions. The new facility helps us to move towards meeting some of the latest standards in caring for people with long-term neurological and neuromuscular conditions. Since it opened, feedback has been very positive. Improved access to a modernised facility makes life much easier for patients and greatly improves their overall experience of their care.

I understand that the proposed multidisciplinary team will include neuromuscular consultants, neuromuscular physiotherapists and speech and language therapists, along with other care professionals. One of the key service outcomes, which I welcome, is that all patients with long-term neurological conditions have an individual care plan. The hon. Member for Romsey and Southampton North (Caroline Nokes) commented on access to wheelchairs; it is important for each individual to have a wheelchair that suits them. That might seem a small thing to some people, but to the patients it is massive. With 60,000 to 70,000 people in the UK living with neurological conditions, we must take those conditions seriously and prioritise our responsibility to those living with them.

A landmark decision could end the agonising wait for the delivery of the treatment that we are talking about to all those eligible to benefit in England, Wales and Northern Ireland. For those in Northern Ireland who benefited from the dedicated out-patient service I mentioned, I am sure this would be an additional boost. Nationwide, the momentum is now in favour of those living with neurological conditions. That may not always be how it feels, but there is a step forward, and we have to look at that, and at how to deliver that better. Although the move is very well intentioned and welcome overall, concerns have been raised and reservations expressed.

I know that the Minister will respond to what has been said about the NICE conditions. Lately he seems regularly to make particular reference to NICE in responding to debates in Westminster Hall and the main Chamber, and I think that is what Members are interested in. There is a need for a specific NICE response. It has asked for further clarification from PTC Therapeutics of the degree of benefit that its drug Translarna provides in the treatment of a type of Duchenne muscular dystrophy. DMD is one of a group of muscular dystrophies, which are inherited genetic conditions that cause the body to produce too little dystrophin, a substance crucial for muscle functioning. Seeing some of the young patients who have the condition focuses one’s attention quickly on how critical the availability of the medicine is. The condition leads to changes in the muscle fibres, which gradually weaken the muscles, resulting in an increasing level of disability. The decline in physical functioning in DMD leads to respiratory and cardiac failure and eventual death, usually before the age of 30.

Ataluren is the first licensed treatment for DMD that addresses the loss of dystrophin, the underlying cause of the condition. It has a conditional marketing authorisation in the UK for the treatment of DMD. The families of children affected, and Muscular Dystrophy UK, have campaigned for NHS England to make the drug available, since it became the first EU-approved drug for tackling Duchenne muscular dystrophy last August. The condition affects 2,500 people in the UK, causing increasingly severe disability and cutting lives short. It would be useful if the Minister and his Department could address NICE’s concerns, as it has asked questions. The right hon. Member for Chesham and Amersham referred to NICE and outlined four or five questions. I think that the focus that will emerge from the debate will be on how to improve the NICE guidelines and improve access to drugs throughout the United Kingdom of Great Britain and Northern Ireland.

Whenever I attend health debates in Westminster Hall, I ask whether we can have not just a regional strategy but a UK-wide one, bringing Northern Ireland, Scotland and Wales together. Will the Minister consider that? The four regions can benefit from each other’s knowledge. Collectively, we can do better.

Student Nursing (Finance)

Jim Shannon Excerpts

Monday 14th December 2015 Commons Chamber

[Wes Streeting (Ilford North) (Lab)]

I am grateful for this opportunity to lead my first Adjournment debate on the serious issue of finance for student nurses and midwives.

I have a long-standing interest in the issues. I spent much of my career outside this place working for a number of charities to widen access to higher education and to tackle broader educational disadvantage. As deputy leader and cabinet member for health and wellbeing in the London borough of Redbridge, I became acutely aware of the challenges facing frontline staff and managers in both of the NHS trusts that serve my constituents in Ilford North. I am also a proud supporter of Unison and draw Members’ attention to my declaration of interests. I am grateful to Unison, the National Union of Students, of which I am a former president, and many other organisations for their assistance in drawing together the evidence for this evening’s debate.

With just a few lines in the autumn statement, the Chancellor announced the biggest shake-up in the funding of nursing, midwifery and allied health subjects since the Health Services and Public Health Act 1968. By scrapping student bursaries and charging them tuition fees, the Chancellor is passing on the full cost of training to these essential frontline staff for the first time. The scale and potential consequences of his decisions merit further parliamentary scrutiny and public debate, and I hope that tonight will provide the first of many opportunities for that debate to take place.

Nursing and midwifery students currently pay no tuition fees for their studies and receive a non-means-tested grant of up to £1,000 and a means-tested bursary of up to £3,191 to help with the costs of living while they study and train. That is significant because students on both courses are required to work throughout their degrees in clinical practice, where they are subject to the full 24-hour care cycle. They work evenings, nights and weekends. Many will spend 60% of their degree doing that, with nurses required to work at least 2,300 hours across their degree. Even with the current levels of financial support in place, many struggle to make ends meet. Their courses are longer, their holidays are shorter and their placements are demanding. Those who do paid work outside their course can end up working more than 60 hours a week as a result, and they should not be expected to do so.

There has been a public outcry at the planned loss of the NHS bursary, but the Government’s plans go even further. Nursing and midwifery students will not only lose their grant and bursaries for maintenance; they will be expected to take out loans to pay for their tuition fees for the first time. These changes will burden students with eye-watering debts of at least £51,600, which they will begin to pay back as soon as they graduate, because nurses currently earn a starting salary just above the repayment threshold, which, shamefully, is now to be frozen at £21,000. As a result, nurses will on average take a pay cut of £900 a year to meet their debt repayments. That is no way for Ministers to treat the people who form the backbone of the NHS.

Given that the Government see fit to charge students for the cost of their tuition, will the Minister confirm whether he intends to pay student midwives and nurses for the hours they have to put into staffing our hospitals? If a private sector company tried to get workers to work long shifts and to pay for the privilege of working those long shifts while training, they would rightly be condemned. We should be no less outraged by what Ministers propose for nurses and midwives.

The impact of the changes will be felt beyond nurses and midwives; physiotherapists, occupational therapists, dieticians, chiropodists, podiatrists, radiographers, paramedics, prosthetists and other allied health professionals stand to lose out. We are not talking about the highest-paid people in this land; this assault on the living standards of key public sector workers is rightly causing outrage among NHS staff and members of the public who cherish the work they do on our behalf.

Given the scale and significance of the reforms, it is outrageous that the Government chose to sneak them out in the autumn statement. The Chancellor’s statement made an oblique reference to replacing

“direct funding with loans for new students”.—[Official Report, 25 November 2015; Vol. 602, c. 1363.]

The policy decision on page 126 of the Blue Book merely says:

“Students studying nursing, midwifery and allied health subjects from September 2017 will be moved on to the standard student support system, with the details subject to consultation.”

As the Government have placed so little information in the public domain so far and higher education institutions and potential applicants are already turning their minds to the 2017 admissions round, I hope that the Minister can shed some light on the details this evening. Will he confirm that the Government will consult on the principle of the policy changes, not merely on their implementation? What is the full timetable for the decision from consultation through to implementation?

What analysis have the Government conducted of students in receipt of NHS bursaries for tuition and maintenance costs? Will they publish an equality impact assessment for the proposals? What research have the Government conducted into the financial hardship facing existing nursery and midwifery students and students of allied health subjects?

Why do the Government think it is fair that students from the most deprived backgrounds should have their grants taken away while some of the wealthiest people in our society receive tax cuts? How much of this debt do the Government expect to write off because those indebted by these reforms are unable to repay them in full?

Which Department will meet the cost of servicing the RAB—resource accounting and budgeting—charge for the student loan debt: the Department of Health or the Department for Business, Innovation and Skills? What are the Barnett consequentials for health education budgets in Northern Ireland, Scotland and Wales, where different arrangements are in place?

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this issue before the House. I understand that 56,000 students on the mainland, including Scotland and Wales, may be in debt as a result of this change. In Northern Ireland, the Health Minister has committed himself to continuing the bursary. We are doing that in Northern Ireland; perhaps the rest of the United Kingdom should do the same.

Anti-TNF Drugs

Jim Shannon Excerpts

Wednesday 9th December 2015 Westminster Hall

[Fabian Hamilton (Leeds North East) (Lab)]

I beg to move,

That this House has considered prescription of anti-TNF drugs.

It is a pleasure to serve under your chairmanship, Mrs Main. I am grateful for the opportunity to speak about NHS prescription of anti-tumour necrosis factor drugs, a subject on which I have become somewhat familiar since I was contacted more than two months ago by my constituent, Samara Ullmann.

Before I move on to why I requested the debate and to define what anti-TNF drugs are and their uses, it may be helpful to give you, Mrs Main, the Minister and other Members present the background as to why this specialist medication will make such a difference to my constituent and so many others.

Samara Ullmann, who is now 29 years old, was born in my constituency in 1986. At the early age of just two, her parents noticed that she was walking with a limp. Worried about her clear inability to walk without pain, her parents took her to her local GP, who referred her to Leeds general infirmary where she was diagnosed with a condition known as juvenile idiopathic arthritis. The terrible condition affected both of little Samara’s legs, her wrists, her ankles and her knees. Her parents were told by the hospital that it was likely that she would have to be in a wheelchair by the time she reached the age of 10. From the age of two and until she was six, she had to wear splints on both her legs.

Professor Anne Chamberlain supervised Samara’s treatment over the next few years. During Samara’s visits to Leeds general infirmary every three to four weeks she was given hydrotherapy, physiotherapy and a cocktail of drugs. Her parents were told that little else could be done for her, which was confirmed by some of the country’s top rheumatologists.

From the age of six, Samara started having problems with both her eyes, which developed uveitis, a common effect of JIA. By the time she was seven, a cataract had developed in her left eye and was removed, but it was left considerably weakened so that, by the time she reached the age of 11, she had completely lost the sight in that eye. Fortunately, her right eye continued to function normally, although when she reached the age of 14 she needed laser treatment on that good eye and was understandably frightened that she would be left completely blind.

The JIA improved considerably by the time Samara reached 17, but sadly her left eye had to be removed because it was both blind and painful. After three months, she was fitted with a prosthetic glass eye, which fortunately is able to move to a limited extent with her functioning eye. The Minister may be able to imagine the terrible effect that all of that had on a teenage girl growing up in the early part of this century. Her self-confidence was badly damaged, too.

As the arthritis gradually abated, Samara was left with a common consequence of the condition, refractory uveitis, which often causes blindness even with the best treatments currently available. Her right eye—her only eye—is now severely affected. So far, despite a paralysed iris, a stuck-down pupil and a developing cataract in her remaining eye, her sight has been partially protected by the use of a drug called mycophenolate, which together with methotrexate is commonly used to treat uveitis.

Those drugs impair the white blood cells that promote the inflammation that causes uveitis. However, despite treatment with those drugs over the past eight years, the vision in Samara’s only eye continues to deteriorate. That is why her eye specialist at Calderdale Royal hospital in Halifax, Mr Teifi James, believes that in order to save her sight, she needs to be prescribed an anti-TNF drug such as Humira—adalimumab.

An anti-TNF drug is a monoclonal antibody that specifically targets tumour necrosis factor alpha. Because of the way in which it is manufactured, it is called a biologic. TNF is involved in causing inflammation in a number of autoimmune and immune-mediated disorders. Those diseases probably cause too much TNF to be produced, modifying the body’s immune response and causing inflammation. Anti-TNF drugs reduce the amount of TNF in the body. They are expensive and may have side effects that could be severe, but, with appropriate monitoring and care, such effects are rare. In fact, they are much less common than the many problematic side effects of corticosteroids.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this issue to Westminster Hall. The Minister will be seeking to improve the success rate of anti-TNF drugs. Many universities across the United Kingdom are looking at how to improve medication for those with eye ailments. We have two in Northern Ireland, which are Queen’s University Belfast and, in particular, Ulster University—

[Mrs Anne Main (in the Chair)]

Order. Will the hon. Gentleman keep his intervention brief, please?

[Jim Shannon]

Does the hon. Gentleman agree that that is a good idea?

[Fabian Hamilton]

I thank the hon. Gentleman for that intervention. He is right. The more studies carried out across the country at university level, the better it will be for patients suffering from refractory uveitis.

The anti-TNF drugs switch off the molecule that creates the inflammation in the first place and are therefore far more effective than corticosteroids in cases such as Samara’s. I am sure that Queen’s University Belfast and many others can confirm that.

Last year, Samara married her fiancé, Ben, and the couple now want to start a family. However, it is not at all advisable for her to become pregnant while taking mycophenolate, because it may well cause a miscarriage or birth defects. An anti-TNF drug could allow her to retain her eyesight and probably to conceive safely and be able to see her child grow up.

Let me move on to why adalimumab or infliximab should be available immediately on NHS prescription for adults with sight-threatening uveitis. I am aware that the National Institute for Health and Care Excellence is about to conduct a multiple-technology appraisal of adalimumab and infliximab and that responses to the draft must be received by 16 December—this time next week. From my conversations with Teifi James, one of the country’s leading eye surgeons, and from my research into that treatment it would seem that drugs such as Humira are highly effective in the treatment of uveitis, so much so that researchers in the Sycamore trial in Bristol, to which the Minister referred in his letter to me of 4 November, have stopped recruiting to it because the children being treated are doing so well on the drug. However, NHS England did not take that into account when it made its most recent decision on the use of adalimumab and infliximab for the treatment of adult uveitis alone.

According to Mr James, approximately 120 patients with sight-threatening uveitis are waiting for anti-TNF treatments in England, whereas patients in Scotland currently have access to adalimumab and infliximab. Treatment using Humira costs just under £10,000 a year per patient, which means that approval of the use of this drug for treating refractory uveitis alone would cost no more than £1.2 million a year.

Cystic Fibrosis

Jim Shannon Excerpts

Tuesday 8th December 2015 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairmanship, Sir Edward. It is also nice to see the Minister in his place again—whatever the debate might be, there are few for which the Minister and I are not in the same room at the same time.

I thank the hon. Member for Dudley North (Ian Austin) for bringing this important issue to Westminster Hall. It affects my constituents and I am here to speak on their behalf—this is the place for us to do that as elected representatives. As he mentioned in his introduction, in Northern Ireland we have had some good news, with money set aside for rare diseases. Any approach to such diseases needs to be innovative and to take into account all those who contribute, be they academics, researchers or hard-working charities who provide support for those suffering from cystic fibrosis and their families.

I also commend the right hon. Member for Chesham and Amersham (Mrs Gillan) and the hon. Member for York Central (Rachael Maskell) who have spoken. They are doughty campaigners on behalf of those who have Duchenne and on many other issues. It is good to see them in their places and making valuable contributions.

We are surely duty-bound to support and fund those who fight for the sufferers and those developing new treatments. The debate is very much about how we develop new treatments and move forward.

[David Simpson (Upper Bann) (DUP)]

I also congratulate the hon. Member for Dudley North (Ian Austin) on bringing the debate. Does my hon. Friend agree that pharmaceutical companies need to be sent a message that their work in research is not about large profits; it is about curing rare diseases? We saw that difficulty whenever we approached pharmaceutical companies on meningitis B: some companies held out for large profits at the expense of people who were suffering.

[Jim Shannon]

I thank my hon. Friend for focusing on the pharmaceutical companies. They can do a great deal and there is also a role for Government and the NICE guidelines, which direct the direction in which pharmaceutical companies will proceed. The companies are driven not always by profit or margins; criteria also indicate to them what to do.

We should be ever mindful that people are suffering through no fault of their own, so we need to help them move forward. It is good to see facts and figures that show that, on average, a child born in the 21st century with cystic fibrosis will live for more than 50 years. There have been tremendous advances. The innovation and hard work done by charities and researchers is too often forgotten, but it has brought about real results, with new precision medicines treating not just the symptoms, but the underlying cause of the condition. We must go further in that direction. To be fair, cystic fibrosis is one condition that we are probably treating rather than solving at the moment, but we need to see a future where everyone with cystic fibrosis can live a life unlimited, which the facts show is more achievable today than ever before.

Unfortunately, precision medicines are expensive and, as my hon. Friend the Member for Upper Bann (David Simpson) said, it is difficult to predict the cost-effectiveness of new treatments. However, we need to get those treatments and try them out to move forwards. I understand that the Government are considering how we can speed up access to innovative treatments, which I think comes under the NICE guidelines. Will the Minister respond to that in his speech? There are proposals to approve new drugs provisionally while using real-world data to assess their benefits. I welcome that and look forward to seeing more of it.

May I put on record my thanks to the Northern Ireland Rare Disease Partnership under the chairmanship of Christine Collins, who happens to be one of my constituents? We have worked together over the years on this matter. Indeed, in the previous Parliament we spoke to the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison), in a private meeting. She was supportive and allowed us to make positive progress. As everyone knows, health in Northern Ireland is a devolved matter. The Minister there, my colleague, Simon Hamilton, has set aside about £3 million for the partnership, which shows there are positive approaches in Northern Ireland and a positive way forward. Perhaps that could be emulated across the whole of the United Kingdom of Great Britain and Northern Ireland.

It is estimated that one in 2,500 babies in the UK will be born with cystic fibrosis and there are more than 9,000 living with the condition. The facts are stark. It most commonly affects white people of northern European descent—it is much less common in other ethnic groups. Those are the facts, which in my constituency means that we are looking at virtually the whole populace. Other constituencies will have similar demographics, so it is concerning to hear that, but it is encouraging that research has advanced so much that we can pinpoint such factors so that we know where problems could arise.

Babies are screened for cystic fibrosis at birth using a heel-prick test as part of the NHS’s newborn screening programme. The NHS and Ministers responsible are taking correct steps to diagnose such conditions at an early stage. Treatment for cystic fibrosis is not curative, but it seeks to manage symptoms. Medications including steroids, antibiotics, insulin and bronchodilator inhalers are often used. Nutritional advice and physiotherapy for airway clearance are commonly part of management.

Cystic fibrosis patients may also be suitable for lung transplants. NICE provides a number of guidelines on specific treatments for cystic fibrosis, which it is currently updating. They are due to be published in 2017. On organ transplants, I believe that we should all be considered to be donors unless we say otherwise. The Welsh Assembly has taken steps to bring in that in Wales and such legislation is pending in other regions of the United Kingdom as well, but whenever we see stories about those who are managing but no more and for whom a lung transplant would be the beginning of a new life, perhaps we should emphasise the organ transplant system and find a method to make progress on that.

The hon. Member for York Central rightly referred to families. We focus on those who have cystic fibrosis, but let us also focus on those who support their loved ones at times of hardship and difficult health symptoms. I will also plead the case for Prader-Willi syndrome. I have a number of constituents who have it, but that is not unique by any means to my consistency; it is seen across Northern Ireland. We do not hear much about this, which is another muscular wasting disease and also an eating disease—it is an obsessive disease.

The right hon. Member for Chesham and Amersham talked about Duchenne muscular dystrophy. I have constituents who suffer from that and I have attended events just across the way with people from across the UK with it. It comes in different levels and types, but, as she said, there have been advances in medication. The Minister may refer to those in his reply, but we also need to focus on how we can help those families.

Recent developments show that innovation is working in advancing treatment of cystic fibrosis. I commend the Department for its work. I will also mention the hard work done by universities in partnership with private business and enterprise to come up with innovative ideas for new drugs. We can never underestimate the importance of what they do. Just as others speak highly of their universities, I do so of Queen’s University Belfast and Ulster University which are bringing forward innovative ideas for advances in medicine and other things. We could work well together with them on this.

I spoke earlier of the hidden or forgotten sector: the voluntary charities, of which there are many. Where would we be without them and their dedicated researchers? Such people often dedicate their lives to helping humanity overcome disease. The Cystic Fibrosis Trust is just one example. It is the largest charity funder of cystic fibrosis research in the UK. Last year it invested more than £3 million in groundbreaking research and it plans to invest a further £3.5 million by the end of this financial year. By adding our support and funding where possible, we can add to the great work being done and make a real life-changing difference for those with cystic fibrosis and their families.

Junior Doctors Contract

Jim Shannon Excerpts

Monday 30th November 2015 Commons Chamber

[Mr Hunt]

That is the reason we have had this whole dispute with the BMA, and it is disappointing that, rather than it negotiating with us on something that I think every doctor understands we need to address, it has come to the eleventh hour like this. In the end, my hon. Friend is absolutely right that doing the right thing for patients is also doing the right thing for doctors, because doctors go into medicine because they want to look after patients.

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State for his statement. None of us wants to see a new contract imposed on doctors; that would be the worst possible outcome. It is very important that we have the seven-day process in the NHS. The BMA represents many doctors in Northern Ireland, where health is a devolved matter, so what discussions has he had with the Health Minister in Northern Ireland to address the issue and find a solution?

[Mr Hunt]

We are keeping in regular contact with our counterparts in the devolved Assemblies and Parliaments. As this is a devolved matter, it is obviously up to them to decide what they do, but I hope they will be encouraged by the progress that I think we are beginning to make in the argument for seven-day services.

World Prematurity Day

Jim Shannon Excerpts

Tuesday 24th November 2015 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to be involved in this debate. I commend the hon. Member for Daventry (Chris Heaton-Harris) on bringing the matter to Westminster Hall for consideration and giving us all a chance to participate. Looking back, one of the greatest joys we have all had—I hope we have all had it—is the birth of our own children. Those special occasions are full of joy at the birth of a new child.

I was present when my three children were born, and I did not feel any pain at all; my wife experienced all the pain. The only pain I felt was when she grabbed my hand and would not let go, and the blood circulation got very tight. The births of the grandchildren were all great occasions as well. In this debate, we are hearing about those who did not have the same sort of experience, and I want to add some thoughts about that.

The World Health Organisation promotes World Prematurity Day to raise awareness of the one in 10 babies worldwide who are born prematurely. World Prematurity Day was just last week, so it is not too late to remember it. We are not just talking about babies who are born prematurely and die prematurely; I want to concentrate my remarks on those who are born prematurely and survive.

In addition to the risk they face to their lives, infants who are born early are prone to serious long-term health problems including heart defects, lung disorders and neurological conditions such as cerebral palsy, which the hon. Member for Banbury (Victoria Prentis) referred to. They may reach developmental milestones later than other children do, and they may struggle at school. Premature birth may lead to all those things, and it may mean that some people do not have the privilege of having children.

In 2013, there were 51,000 pre-term births—around 7% of live births—in England and Wales. We have had a couple of Adjournment debates in the Chamber in the last while. On both those occasions, very personal stories were told that resonated with all present. We have similar problems in Northern Ireland; the matter is devolved, but the figures are the same. We can be under no illusions—this issue is a problem not only in third-world countries, but in our country, and it remains an issue that needs to be addressed in the United Kingdom of Great Britain and Northern Ireland.

Of the 15 million babies born prematurely worldwide each year, around 1 million die from complications due to their prematurity. More than three quarters of those babies could be saved through better access to quality care and medicines for the mother and the baby, so something can be done. It is important that we try to address those issues.

Complications of pre-term births are the leading cause of death among children under five years of age. Earlier I made a point about the medical conditions sometimes present in those who are born prematurely. Without the appropriate treatment, those who survive often face lifelong disabilities including learning, visual and hearing problems, and their quality of life is greatly affected. Fortunately the United Kingdom has relatively world-class healthcare. Indeed, we are more prepared and more able than many to deal with such complications, but that does not mean that more cannot be done to address this important issue.

[Gavin Newlands (Paisley and Renfrewshire North) (SNP)]

I praise the hon. Member for Daventry (Chris Heaton-Harris) for securing this important debate. My first child was born more than six weeks premature as a result of an emergency caesarean in the Southern general hospital in Glasgow. Luckily, Emma is now a healthy nine-year-old—touch wood—but, as has been mentioned, not all parents are as lucky. I have friends who have experienced the horrendous strain of a stillbirth. Putting aside party politics, does the hon. Member for Strangford (Jim Shannon) agree with me that special care baby units should be insulated from the cost pressures on NHS hospitals and trusts, no matter what those pressures are?

[Jim Shannon]

I thank the hon. Gentleman for the personal story that he told us, as others have today. The Minister will address that issue and mention how best he can do that. I would like to see that measure in place; we probably all would. The Minister is the man with the responsibility, so let him earn his money and give us the answer that we need to hear.

I welcome the Health Secretary’s announcement that his new ambition is to reduce the rate of stillbirths and neonatal and maternal deaths in England by 50% by 2030. He has set a goal to be achieved, which indicates a commitment to try to address those issues. Although the Minister will be the one to respond today, the man in charge at the top has indicated that he wants it to happen.

Worryingly, Christine Carson, the clinical practice programme director of the National Institute for Health and Care Excellence, has said:

“Despite medical advances, rates of premature birth have remained constant over the last 10 years.”

There is a clear issue to be addressed. The hon. Member for Daventry is right that although there seems to be a commitment to change and to doing it better, we have not seen much evidence of that—at least not through the statistics.

Christine Carson continued:

“An early labour—one that occurs before the pregnancy reaches 37 weeks—can pose numerous health risks to the baby, and these risks increase the earlier that child is born.”

I commend, as others have, the work of many charities. I would say to the hon. Member for Banbury that, in the worst of circumstances, it is always good to have faith and the support of the Church. Perhaps the shadow Minister and the Minister will comment on the importance of faith groups and churches, and of the availability of church ministers to offer emotional and perhaps even physical support at a time when families need it most. That is personally important to me, and I know that it is for others.

Christine Carson also said:

“Although more premature babies are surviving, rates of disability among these children remain largely unchanged. The way to tackle this is to provide consistent and high-quality care to prevent early labour”.

If we can do that, we can prevent disabilities and long-term health conditions. We cannot take our eye off the ball when it comes to this issue. It is not good enough that for a decade premature birth rates have been stagnating, rather than improving with advancements in medical science. One of the best ways to promote equality is to give each and every child the best possible start in life with the most equal opportunities possible.

NICE and the World Health Organisation, among others, have produced guidelines on how best to address the problem. We have to recognise that we are short on funds at the moment but some of those recommendations provide good guidance on how best to move forward and how to make inexpensive, cost-effective changes to help to improve outcomes.

I think it was said in the news this morning that the Health Minister is going to raise some more money for the NHS—that is probably in England. Will the Minister give some indication of what that money will be focused on? Maybe it will be focused on A&E or on direct care. Is it possible that some of that funding could go towards this issue?

Some of the recommendations of NICE and the WHO include:

“When to offer progesterone…or a cervical ‘stitch’…to prevent or delay the onset of preterm labour; How to diagnose if a woman’s waters have broken prematurely before labour has begun and which antibiotics to offer to avoid infection; Which drugs will help to delay labour and to whom they should be offered; When to safely clamp and cut a premature baby’s umbilical cord.”

Those four recommendations and thoughts from NICE and the WHO are simple, yet effective measures that could make a real difference in addressing the issue.

I thank the hon. Member for Daventry again for bringing the issue to the House for consideration, and I thank all Members who have contributed. We can and should come together and get the right approaches to improve outcomes for prematurely born children in a way that is compatible with the current state of the Treasury. I look forward to the replies of the shadow Minister and the Minister, but I apologise in advance as I have to go to the Defence Committee at quarter to 11, so I have to be away at about 20 to 11.

Antibiotics (Primary Care)

Jim Shannon Excerpts

Monday 23rd November 2015 Commons Chamber

[Maggie Throup (Erewash) (Con)]

First, I would like to declare an interest. Over 20 years ago, I was responsible for trying to launch a C-reactive protein point-of-care test, along with other point-of-care tests. The timing and circumstances were not right then, but things have moved on, and I believe the time is now right to get C-reactive protein point-of-care testing established in the primary care setting.

Last Monday was world antimicrobial day and that, along with the extensive media coverage over recent days about antimicrobial resistance and the vast difference between summer and winter antibiotic prescribing, makes this is a very timely debate. Antibiotics have been widely used to treat infections for more than 60 years, and without doubt the use of antibiotics has saved many millions of lives. I doubt if there is any right hon. or hon. Member who has never taken an antibiotic at some time in their life, but such extensive use of antibiotics has now become a real issue and a ticking timebomb.

Although new infectious diseases have been discovered nearly every year during the past 30 years, very few new antibiotics have been developed in that time, meaning that existing antibiotics are used to treat more and more infections. The consequence has been an increase in the prevalence of resistance to antibiotics, which in turn puts our ability to treat routine diseases in serious jeopardy. At present, treatment-resistant bacteria are responsible for approximately 25,000 deaths across Europe each year, which is a similar number to those dying in road accidents. The national risk register of civil emergencies has estimated that a widespread outbreak of a bacterial blood infection could affect 200,000 people in the UK. If it could not be treated effectively with our existing drugs, approximately 40% of those affected might die as a result, which is 80,000 people. There is an urgent need for action to slow the spread of antimicrobial resistance.

For a number of years, there has been a clear consensus among clinicians, academics and policy makers that antimicrobial resistance represents a major current and future danger to the foundations of modern medicine. In recognition of that danger, tackling the threat of antimicrobial resistance has been identified as a key priority by the Government, Public Health England and the chief medical officer. Just two years ago, the chief medical officer described the threat of antimicrobial resistance as

“just as important and deadly as climate change and international terrorism.”

I wish to focus on antibiotics in primary care and what measures can be taken to have a real impact on the way in which they are prescribed, which is currently almost like handing out a bag of sweets at the fair. In fact, 97% of patients who ask for antibiotics are prescribed them, whether or not they should have them. Owing to the popularity of primary care in the UK, that setting represents the part of the healthcare system where antibiotics are most likely to be prescribed, with 74% of them prescribed in that setting. International comparisons show that antibiotic resistance rates are strongly related to antibiotic use in primary care.

Despite guidance encouraging a reduction in antibiotic prescribing rates, nine out of 10 GPs say that they feel pressured into prescribing antibiotics. In the UK, we do like taking antibiotics. In 2013, data showed that 41% of residents had taken antibiotics in the previous 12 months, compared with a European average of 35%. Nationally, in 2013-14—the most recent year for which I have managed to get hold of the data—a staggering 41.6 million antibiotic prescriptions were issued, at a cost of £192 million to the NHS.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on securing the Adjournment debate. She has outlined the issues and the epidemic potential among those who do not respond to antibiotics. Does she agree that we need something focused not just on England and Wales, but on the whole of the United Kingdom of Great Britain and Northern Ireland because this strategy has to help us all? In her submission to the House, will she say—perhaps the Minister could respond along the same lines—whether we should have a UK-wide strategy to address the issue for the constituents of all Members of the House and further afield?

[Maggie Throup]

I completely agree with the hon. Gentleman. It is not just a UK-wide issue; it affects the whole world. That is one of my concerns. We need to play our part to set the trend for the whole world, because this is a global issue.

As I said, antibiotic prescriptions in 2013-14 cost the NHS £192 million. What is more worrying is that many of the 41.6 million prescriptions were unnecessary and will undoubtedly have contributed to the growing issue of antimicrobial resistance. More than half the antibiotics used in primary care are for respiratory tract infections, most of which are viral or self-limiting.

So what can be done to halt the ticking timebomb? Just last Wednesday, Public Health England called for NHS patients to become “antibiotic guardians” by thinking carefully before asking for drugs and taking more care to prevent the spread of infections by washing their hands and accepting the flu jab. I believe that we can go even further in reducing the use of antibiotics in ways that are better for the patient and that save the NHS money.