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.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 17th November 2015 Commons Chamber

[Alistair Burt]

I fairly regularly meet families and others who have had young people and older people in the system and where there is a difference of opinion about what might be done. Some of the stories are very distressing. Families will sometimes feel that people have not listened to them. There can be quite difficult clashes of opinion on occasion. Of course, any case that my hon. Friend wants to bring me I would be happy to see, but this is a perpetual issue. The important thing is always to listen to those who are closest to a problem. That is likely to be the best way forward. Even if there is a difference of opinion, if people feel that they have been listened to, there is a proper opportunity to explore what can be done.

[Jim Shannon (Strangford) (DUP)]

The autism numbers in Northern Ireland are growing. I understand that it is a devolved matter, but it is clear to me that three Departments have a responsibility: Health, No. 1; Education, No. 2; and Employment, No. 3. We need to ensure that the health of autistic children is looked after and that they have an education that prepares them for employment. Does the Minister have a strategy that takes all three Departments on board, and if so, is it shared among all the regions of the United Kingdom of Great Britain and Northern Ireland?

[Alistair Burt]

Yes. I could not have put it better myself. We have an autism programme board, on which sit representatives of the families of those with autism, which provides an opportunity to look overall at the Government strategy. The hon. Gentleman is right to say that it contains many different elements. For example, in relation to work, we have set out a challenge to halve the disability employment gap, because more people with disabilities want to take the chance of working. That must be done in the right way; we are working closely with the Department for Work and Pensions in relation to that, but things such as the autism programme board give a chance for families to be involved right across the areas where they might expect help and assistance.

Palliative Care

Jim Shannon Excerpts

Wednesday 4th November 2015 Commons Chamber

[Maria Caulfield]

I agree, and I will highlight that point later in my speech.

For me, palliative care is about support and services that help to achieve a good death and underpin the care in someone’s final weeks and months of life. What happens now is that all too often the provision of palliative care is distributed on the basis not of need but of availability, and depends on the diagnosis, where the person is treated, and sometimes even their age, leading to a patchy and ineffective service. We heard during the Adjournment debate on Monday night about the impact of not having good bereavement services, which stays with relatives not just at the time someone dies but for years afterwards, and may never go away if they have had a bad experience.

This patchy service continues despite all the hard work in recent years reviewing palliative care provision across the country. As far back as 2008, an end-of-life care strategy was produced, and in 2011 the National Institute for Health and Care Excellence produced quality standards, yet palliative care services remain patchy. To highlight that further, let us look at a few more statistics.

Unfortunately, we know that 100% of us will die eventually, and that three quarters of those deaths will be expected. That means that three quarters of the population could benefit from palliative care, but currently only 48% of people who have palliative care needs receive palliative care support. Of the 500,000 deaths that occur in this country every year, 82.5% are among the over-65s, yet fewer than 15% of that group have access to palliative care. That tells us that those who need it most often have the hardest job accessing it. For older people, death is often seen as inevitable and not something that palliative care should be helping with.

More shockingly, between 50% and 70% of people who are dying say they would like to die at home, but only 30% actually do. Most people end up dying in hospital—just over 50%. Hospitals are amazing places, but they are acute settings helping to deal with urgent and emergency cases. While they do need to do more to provide better palliative care, we need to invest in our excellent hospice movement and facilities so that if people want to die in a hospice, they can. We also need to support our community outreach programmes so that if people want to die at home, they can have that choice too.

[Jim Shannon (Strangford) (DUP)]

The need for palliative care always comes at a time when people and their families are feeling vulnerable. The importance of charities and Churches at that time is something that we all know very well. The hon. Lady referred to hospice care groups and organisations. Does she agree that their role should be recognised more by Government and by the authorities so that they can take better advantage of hospice care and do better for those people through it?

[Maria Caulfield]

I thank the hon. Gentleman. I absolutely agree. That point is picked up in the Bill.

The most shocking statistic concerns the diseases that people are suffering from. The London School of Economics says that 92,000 people a year miss out on palliative care help. At the moment, 88% of our palliative care provision goes to people with cancer. As a cancer nurse, I am certainly not saying that that needs to be reduced, but the majority of deaths are due to other diseases. Only 29% of people die of cancer, with 28% of deaths due to heart disease, 15% due to respiratory illnesses, 10% due to stroke, not to mention Alzheimer’s disease, motor neurone disease and multiple sclerosis. Until we ensure that palliative care provision is mainstream, and not just for patients with cancer, the majority of people will be denied access to a good death.

The Bill introduced in the other place comes up with solutions to resolve this situation and place the responsibility firmly in the hands of local clinical commissioning groups to ensure that all patients, no matter where they want to die or what disease they have, will get access to palliative care services. That will take the pressure off existing acute facilities that are currently having to provide them. The Bill makes some key practical proposals. The first is about the ability to admit people directly to palliative care facilities. This happens really well in a lot of places, but it does not happen everywhere. That goes back to the point made by the hon. Member for Strangford (Jim Shannon) about investing in our hospices to ensure that it can happen more widely. The Bill talks about support for healthcare professionals in all settings, so that whether they are an intensive care unit nurse or someone who works with motor neurone disease, they have a signposted facility to access specialist palliative care that helps them to help patients manage their symptoms.

The Bill fits very firmly into the Government’s seven-days-a-week NHS in calling for the availability of seven-days-a-week palliative care services. As I know only too well, it is at 4.30 pm on a Friday that a patient will phone up in pain and say they cannot cope, when pharmacies are closed and it is possible to get a prescription but not a drug. Someone who is breathless and needs a chest drain often has to wait until the Monday morning, in the meantime being admitted to A&E or a medical assessment unit and then finding it very difficult to be discharged to go home. This is why we need a seven-days-a-week palliative care service.

The Bill calls for some really basic things that should exist now but do not, such as sufficient equipment for our community services. It is unbelievable that a ward nurse who wants to discharge someone with a morphine pump cannot do so because the pump belongs to the hospital. Unless the community has a spare pump, that patient will not go home. That is why only 30% of people are dying at home—they are stuck in hospital because communities do not have the necessary equipment to look after patients. There are shortages of mattresses and feeding pumps, which would make a crucial difference if they were available.

Care Homes (Regulation)

Jim Shannon Excerpts

Wednesday 4th November 2015 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Thank you for calling me, Ms Vaz. I congratulate the hon. Member for North Devon (Peter Heaton-Jones) on bringing this topic to Westminster Hall, setting the scene and explaining its importance from his personal experience and knowledge.

Care homes should and must provide care and services to some of the most vulnerable in society. I believe and the House believes that those who have worked hard and have contributed to society and the economy all their lives deserve appropriate care and dignity in their old age. We have the opportunity to be a voice for those who cannot be a voice for themselves. That is the issue the hon. Gentleman has brought to the House today. The people involved are often at the fringes of society and are of all ages. Many people in care homes do not have immediate family and that is another concern. We read stories in the press and we may be suspicious of them, but they illustrate the problem. There is no smoke without fire, so if there is a story in the press there must be at least some truth in the story.

Some people may be physically unable to look after themselves, including those who are elderly or have learning difficulties, dementia or Alzheimer’s. They deserve the very best care in care homes and their families need the assurance that they are well looked after. If someone has dementia, Alzheimer’s or a physical disability, they deserve the same treatment and care as others to ensure that their meals are correct and that they are given a wee bit of time, compassion and understanding, as the hon. Gentleman said. It is imperative to do all we can to protect those in care homes and to ensure that they receive the care and dignity they deserve.

I welcome the opportunity to question how the Government intend to improve regulation of the industry so that the people who are cared for are protected. I am always a bit suspicious of statistics—as the saying goes, there are lies, damned lies and statistics—but they are clear. Only 64% of care service providers in England are registered with the Care Quality Commission, so there is a question to be answered. I have great respect for the Minister’s understanding and I think the world of him, so I am sure that in his response we will hear the compassionate understanding that he feels personally and as a Minister. I look forward to that.

The Care Quality Commission monitors and regulates care organisations to ensure that they are continuing to meet national standards, and herein we encounter the first issue about regulating care homes. We need to press for much higher levels of registration if we are even to think about improving regulation. We cannot improve regulation if we do not have registration. I hope that we can make higher levels of registration a key part not just of this debate, but of the Government response. We cannot improve regulation if 36% of care service providers are not registered with the main body for monitoring and regulating the industry. Indeed, we should express immediate concern about whether those unregistered care providers are up to the national standard. I am not saying that they are not, but Government observation and monitoring is needed to ensure that they are.

Last year, following years of scandals, the Care Quality Commission announced that it would reinspect all care services and then rate them individually. We do not want to go into too much detail about the most horrible stories and incidents, but they do resonate with all of us as elected representatives. Care homes judged to be inadequate would be shut down and their directors banned from working in such positions again.

[Andrew Percy]

The hon. Gentleman is making a very important speech. He references the examples of abuse, mainly involving physical abuse, that we have heard about. Does he share my concern that in other care homes the problem is not physical abuse, but people not receiving proper nutrition? It is a national scandal that £13 billion of NHS money is spent every year dealing with poor nutrition, much of it in the elderly population. There are no doubt some very good nursing homes and care homes, but the quality of the food in homes often contributes to the decline of residents, and the CQC needs to get a handle on that as well.

[Jim Shannon]

I thank the hon. Gentleman for his intervention; he is right. I tried to make the point earlier about the food that residents eat and its nutritional value, and about the time that may need to be spent looking after someone and feeding them. I thank the hon. Gentleman for highlighting another very important issue.

The National Audit Office found that just 9% of services had been assessed as of July this year, despite the deadline for inspections being February next year—a deadline that has been pushed back. Obviously, the February deadline cannot now be met, because 91% of homes cannot be inspected in that time, but perhaps when the Minister responds we can get an idea of a new deadline in relation to the inspection regime.

However well intended the Care Quality Commission system is, there are clear failings in the current way of doing things, and today’s debate gives us the opportunity to discuss the way ahead in terms of improving the poor rate of inspection. The right hon. and hon. Members who are here will illustrate that very clearly. Concerns have been raised across the political spectrum, both in newspapers and by political representatives, and I hope that the solution to those concerns can also be found on a cross-party, bipartisan basis. After all, this matter concerns us all. It is not a matter of scoring points—it is never that with me anyway, but it certainly is not with anyone in this debate, because we all have the same focus and commitment to delivery of the same level of care and to ensuring that all homes reach a certain level.

We have had many issues in the past in Northern Ireland. I know that this is a devolved matter and the responsibility of someone else, but having the appropriate protection and regulation is so important to ensuring that abuses are not happening. The historical and the up-to-date abuse cases that we see in the papers need to become a thing of the past.

We can come together from both sides of the House, set the right course, address the issues and hopefully, through the Minister and the shadow Minister, the hon. Member for Worsley and Eccles South (Barbara Keeley), provide some direction in relation to the solutions. I hope that my contribution and the issues I raised have been noted by the Minister—indeed, I know that they have been—and that they will prove useful to eliciting a strategy and a response from Government to ensure that this matter is addressed correctly as a matter of urgency, as the hon. Member for North Devon said, and to the best of our ability.

[Several hon. Members rose—]

Access to Medical Treatments (Innovation) Bill (Money)

Jim Shannon Excerpts

Tuesday 3rd November 2015 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I, too, have concerns about the Bill introduced by the hon. Member for Daventry (Chris Heaton-Harris). I agree in principle about the need for quick, easy and affordable access to effective treatments for patients, and new developments and initiatives that improve access to innovative treatments should be encouraged so long as they do not have a negative impact on patient safety. The hon. Member for Totnes (Dr Wollaston) made that point, as did other Members.

Questions and concerns have been raised by a number of prominent UK charities—the British Heart Foundation, Prostate Cancer UK and Alzheimer’s Research UK, to name but a few. We must be careful not to confuse intention with outcome. The main concern is the potential risk to medical research, and the Association of Medical Research Charities, which represents a large number of prominent and well-respected medical charities, has expressed concern that

“the bill may inadvertently act to discourage patients from participating in robust research studies”.

That is important, and we must be clear that we are concerned about introducing legislation that has perhaps not been fully thought out.

Further concerns include the vagueness of certain definitions in the Bill. For example, what exactly can be described as “accepted medical treatments”? Well-respected UK charities in the sector have expressed concern about the vagueness of that definition, and it is just one of many concerns.

The Bill is loose and it is not definitive. It is also unclear. With great respect to the hon. Member for Daventry, we need to go back to the drawing board with this one. In addition to concerns about unintended consequences, there is the question of whether the Bill is really necessary. I reiterate my support for innovation as a principle—it should be encouraged and welcomed—but I want the House to note the comments that many hon. Members have made today and be mindful of the concerns that have been raised, because we do not want the Bill, however well intended, to have unintended negative consequences.

Maternity Units: Bereavement Care

Jim Shannon Excerpts

Monday 2nd November 2015 Commons Chamber

[Will Quince (Colchester) (Con)]

I am delighted to have secured this debate on bereavement care in maternity units, which stems from my own experience and from further research. I should stress that I am no expert in maternity or bereavement, but I speak from personal experience. In May 2014, my wife had her 20-week pregnancy scan, at which point an abnormality was identified. Further tests led to a diagnosis of Edwards syndrome. I do not want to go into the detail of my son’s condition, but Edwards syndrome is described as being “not compatible with life”, so we were well aware of the likely outcome. However, our son was clearly a fighter and he survived full term, to 41 weeks, but sadly, in October last year, he was stillborn.

As hard as it is to tell my story, it sets the scene for this debate and will, I hope, give the House a small insight into the experience of the parents of the 5,000 babies who are either stillborn or die within seven days of birth every year in England. It is difficult at the best of times to talk about death, particularly the death of children or babies. We all hope it will never happen to us. But there must be provision, facilities and trained staff ready, willing and able to assist families who find themselves in this awful position.

[Jim Shannon (Strangford) (DUP)]

I am pleased to be here to support the hon. Gentleman this evening. I realise that he is telling us a very personal story. The figures indicate that 11 babies are stillborn in the UK every day, which makes stillbirth 15 times more common than cot death. Does he agree that we need not only bereavement centres in hospitals but also the presence of someone from the Church to give spiritual, emotional and physical help at that time?

[Will Quince]

The hon. Gentleman makes a good point, and I thank him for his intervention. The chaplain at the hospital certainly gave us a huge amount of solace. They provide a really important service.

For my wife and I, our care was absolutely fantastic. I cannot praise highly enough the staff at Colchester general hospital who cared for us when we needed it most. The very positive experience that my wife and I had at Colchester represents the model I would like to see rolled out across the country. As the chance of our son being born alive was poor, we were booked into the Rosemary suite, a specialist bereavement suite at the hospital. Crucially, it was far enough away from the hustle and bustle of the maternity unit, with a room that the dad can also stay in and a lounge and kitchenette. It is as near as you can get to a home from home.

The suite gave me and my wife the chance mentally to prepare for what was to come. Importantly, it was away from the noise of crying babies and happy parents and families. It was a place to prepare but also a place to grieve in private, and somewhere that we could be with our son. Importantly, the Rosemary suite also had a cool cot, which is a piece of medical equipment that acts like a refrigerated cradle, so that babies who have died do not need to be taken straight to the mortuary. That means that parents and family members can spend as much time as they want with their baby. Sister Liz Barnes, the gynaecology nurse counsellor, gave us a huge amount of emotional support, both before and after the event. I cannot tell you what a comfort it was to have Liz with us, speaking to us and guiding us through the next steps and, of course, the funeral arrangements.

Having gone through that experience, I had assumed that every maternity unit in this country had a bereavement suite, but sadly that is far from the truth. I have heard shocking stories of a lack of compassion and care shown to parents of stillborn babies in maternity units. An article published in BMJ Open in 2013 on bereaved parents’ experience of stillbirth highlighted some of the problems in care for parents in some of our hospitals. The report carried interviews with bereaved parents and contained some very distressing responses. One mother said:

“They only left him with me for about an hour. Then they just took him away. I was begging them not to take my baby”.

Others talked of a poor experience with hospital staff. One said:

“I thought these people”—

midwives and doctors—

“knew what they were doing. I wish I hadn’t thought that now.”

Another claimed:

“The delivery was just awful from start to finish. They almost treated me like ‘the woman with the dead baby’. There was no sympathy. When I asked to see a doctor, this particular doctor came in and said, ‘We’re very busy.’ And his exact words, I’ll never forget them, “Well, with all due respect, your baby’s dead already’. Which was just the most awful thing you could say.”

Some highlighted a distressing rush to decision making. One mother said:

“I wish someone had said to me in those first few hours, ‘Even if you don’t want to see her now, you can see her in an hour or two. Or in a day or so’. I was left to believe that because I wasn’t ready to see her, that was final.”

Some of these examples are really hard to listen to, but there are also some very encouraging stories within the report. Some mothers spoke of the “very, very caring staff”. Another very movingly said:

“Even though she wasn’t breathing and she didn’t open her eyes, she”—

the midwife—

“still said you’ve got a beautiful baby girl. It just meant the world.”

I will remember until the day I die the midwife who helped me dress our son after he had sadly passed away, and she said, “You have a beautiful baby”. I will never forget that.

The report concludes that in these tragic situations, clinicians and hospital staff

“only have one chance to get it right”.

It also stated that the experience of stillbirth can be influenced as much by staff attitude and caring behaviours as by high-quality clinical procedures. Last month, a study said that the UK provides the best end-of life care in the world, but if we want to maintain this level, we should not forget end-of-life care for stillborn babies and those with very short lives. The impact of stillbirth and post-natal death on parents should not be understated.

As it stands, maternity bereavement care in English hospitals is patchy. A major survey by the bereavement charity, Sands, from 2010 highlighted that nearly half of the maternity units in England did not have a dedicated room on the labour ward for mothers whose baby has died. That is important because these rooms are where they cannot hear other babies, jubilant parents and visiting families. It is absolutely vital that more hospitals recognise the importance of bereavement suites and their role in easing the pain and loss of bereaved families. These bereavement suites should be separate from the main maternity unit.

Even though I was absolutely aware of the likely outcome when I entered the Rosemary suite in October last year, nothing can prepare you for the shock and the numbness that comes from seeing your wife give birth to a lifeless baby. The precious hours we spent in what I can describe only as beautiful silence afterwards helped me and my wife come to terms with what had just happened. No parent should have to face being taken to a room in a maternity ward of crying babies when you have just gone through a stillbirth.

Many charities, such as Sands, Cruse and The Compassionate Friends do a fantastic job in raising awareness of the support that should be provided to bereaved parents. Many of the bereavement suites in hospitals are actually partially funded and provided by the fantastic work of these charities. I know many bereaved parents, us included, raise money after their loss, knowing how valuable these suites are. I know there has been some progress made in this area. In 2013-14, the Government invested £35 million in new maternity equipment and facilities. That helped to fund nearly 20 new bereavement suites and areas to support bereaved families. There is also a growing recognition of the role of bereavement-trained midwives, and that is really important in helping bereaved families after stillbirth or infant death. In February 2014, the NHS published a report on the support available for loss in early and late pregnancy, which stated:

“There needs to be better recognition of the bereavement midwife role. Generally, these roles are not part of the original establishment. Trusts are beginning to recognise the value in having these specialised posts and they are becoming more commonplace.”

It is great to see trusts increasingly recognise the fantastic work that these specialist bereavement suites and the staff can play in these tragic circumstances. I know that my family were very grateful for the fantastic support that we received.

Junior Doctors’ Contracts

Jim Shannon Excerpts

Wednesday 28th October 2015 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I thank the Opposition for bringing this very topical issue to the Floor of the House for consideration.

Of course, we cannot be closed-minded about the need to reform large aspects of the state, but when reforms are blatantly of an ideological nature it is essential that the appropriate scrutiny is applied, and I welcome the opportunity to do so.

My party, the Democratic Unionist party, believes strongly that an imposed contract does not represent the best way forward. We remain optimistic that the widespread acknowledgement that the existing contract is not fit for purpose will provide sufficient incentive for all parties to ensure that UK-wide agreement can be achieved. I commend the hon. Members for Totnes (Dr Wollaston) and for Central Ayrshire (Dr Whitford) for their very cohesive contributions setting the scene for this sensible, pragmatic and rational route, and I hope that others can join in pushing the House in that direction.

We cannot play politics with the future of such an essential part of our health service, nor with hard-working, aspirational young people who have, in many cases, worked hard their whole lives just to enter the medical profession. Consequently, we must encourage constructive engagement between Government and junior doctors’ representatives with a view to achieving a positive outcome that underpins safe working practices as well as delivering the highest safety and quality of care for patients.

The current proposals seek to improve something by taking from it. They seek to make improvements that, frankly, cannot be made in a safe manner without increasing investment. It is not just the BMA making noises over these proposed contracts; a tidal wave of stakeholders has weighed in voicing concern. The only way forward is the sensible, rational and pragmatic cross-party debate that my party and others in this Chamber want to see. Such matters are simply beyond politics. Our young people’s futures are at stake, as is the safety of our citizens when treated by the NHS. We all need to come together, work out what is right, and make an agreement.

Although the Department of Health in London is responsible for these negotiations, Department of Health, Social Security and Public Safety officials from Northern Ireland have been engaged in ongoing discussions with local BMA junior doctor representatives to assist in identifying and understanding any issues particular to Northern Ireland. We need to find the middle ground so that, sensibly and positively, we can balance the concerns from the different parties involved and come up with a sustainable long-term solution to this issue. The DUP recognises the vital role played by junior doctors in our health service locally and trusts that an outcome can be achieved that appropriately recognises the important contribution that these dedicated professionals make to society in Northern Ireland and across the rest of the United Kingdom.