Access to Orkambi

Jim Shannon Excerpts

Tuesday 17th July 2018 Commons Chamber

[Mr Ivan Lewis (Bury South) (Ind)]

We are living in an era when public confidence in a mainstream political class is at an all-time low. Too often the public suspect that we choose the low ground when they yearn for us to build common cause in pursuit of the high ground. Tonight we have a chance, in a small way, to prove them wrong, by using this debate to show the relevance and humanity of Parliament in the cause of human dignity and human life. I pay tribute to colleagues here, especially the hon. Members for Dudley North (Ian Austin), for South Cambridgeshire (Heidi Allen), for Erith and Thamesmead (Teresa Pearce), for Bury North (James Frith) and for York Central (Rachael Maskell), the right hon. Member for Hemel Hempstead (Sir Mike Penning) and the hon. Member for Strangford (Jim Shannon), for championing this issue so passionately and effectively over a long period of time. I also want to place on record our appreciation for the tremendous work of organisations, including the Cystic Fibrosis Trust, which ensure that the voices of people with cystic fibrosis and their families are heard and heard loudly.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for being so generous. The fact that so many Members have stayed behind tonight is an indication of the importance of the issue. It was my privilege to attend an event at Belfast City Hall this month, standing side by side with CF sufferers and their families calling for Orkambi to be made available. Does the hon. Gentleman agree that medication that is proven to improve the quality of life for CF sufferers must be made available regardless of postcode? The Department must again ask the National Institute for Health and Care Excellence to enter into negotiations with a pharmaceutical company to provide this drug and allow CF children to progress and CF adults to achieve a good quality of life. Once again, I congratulate him on bringing this issue to the House. It is very important.

[Mr Lewis]

I agree entirely with the hon. Gentleman. It is absolutely vital that we see an engagement process that leads to action. I will develop that argument as I make my contribution here this evening.

NHS Trusts: Accountability

Jim Shannon Excerpts

Tuesday 10th July 2018 Commons Chamber

[Sir Mike Penning]

The right hon. Gentleman is absolutely right. The gentleman did not stay very long, but he caused carnage in our NHS trust and morale went through the floor. I am sure some of the books might have looked a bit better, but certainly acute care was really struggling. The gentleman left after two years, or something like that, and he went to Great Ormond Street Hospital as the chief executive. I am sure he went on a huge pay cut—no, I am being cynical: I doubt it. He has now retired.

On the right hon. Gentleman’s point, before that gentleman there was another chief executive involved in investing in our health, who went off under a cloud. I managed to get him summoned to the Health Committee, when I was a member of it, to find out the truth about what was happening with the closure programmes. The right hon. Gentleman is absolutely right because, a few years later, he appeared back in my constituency as the chief executive of the community trust. He then had the audacity to ask, “Can we put all that behind us, as this is a new job and a different project for me?” Yes, it goes full circle: just as the right hon. Gentleman said in the previous debate, it is jobs for the boys, and they come back round again.

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Gentleman on securing this debate, in which he is highlighting a very specific issue. Does he not agree that there is a duty of care on Government-funded bodies, which quite clearly pay people from Government funds, to ensure that employees at every level are accountable to trusts? More must be done to inspire confidence in the NHS—this is quite clearly a confidence issue—as well as to provide transparency and clear accountability.

[Sir Mike Penning]

I could not agree more with the hon. Gentleman. We have discussed and debated this before, and this must be like “Groundhog Day” for the Minister. I should have thanked him earlier for bearing with me in what may be a much longer debate than he probably assumed when he saw it on the Order Paper.

It is important that there is proper due process when we employ people who work in the NHS, and in relation to salaries. I am sure that the Minister will now go away and check with the Treasury how this happened. My understanding was that such remuneration—and we are going back a couple of years—would not have been allowed even then. Trust in the NHS is vital. There are other examples, which I will produce, that will show that although the NHS is absolutely world renowned, there are errors in it that infuriate the people who it is supposed to be representing and looking after.

Transforming Care Programme

Jim Shannon Excerpts

Thursday 5th July 2018 Commons Chamber

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

Once again, I congratulate the right hon. Member for North Norfolk (Norman Lamb) on securing this debate, but I regret that more of our colleagues are not in the Chamber for what I consider to be a very important debate.

I hope that the right hon. Gentleman and the House will forgive me if I come at this purely from the angle of autism, but, having the privilege of chairing the all-party group on autism, I tend to refer to it on every occasion, as many of my colleagues know. I have just come from a lunchtime event in the other place with the Baroness Browning, Angela Browning, who entered the House in the same year as I did and who was the original inspiration behind the Autism Act 2009, a private Member’s Bill that I took through the House. She was entertaining a group of people from an organisation called Fixers. I appreciate that we are not allowed prompts in the Chamber, but its report, “Feel Happy on the Spectrum: Young Autistic People Speak Out”, has already left an impression on me. Two very impressive young people, Jenny and Gabriel, talked us through their experiences.

As the right hon. Gentleman talked about employment, I had a look at the recommendations in the report, and of course they include something we would all like to see: more education on autism in the workplace. It contains testimony that I thought would be interesting to read into the record from a young person who has obviously found an employer who is understanding and welcoming of their autism. They wrote:

“Civil Service fast-stream is really good for people with autism. They go out of their way to accommodate your autism in their entrance exams with things like extra time and they don’t discriminate if you disclose”.

That is a positive note on which to start my remarks in a debate that is partly a reflection of the very sad and disturbing stories that came out of Winterbourne View care home. The transforming care programme was developed in response to that atrocious scandal. No one could have failed to be moved by the shocking abuse of adults with learning disabilities and autism in that private hospital, which was supposed to be an assessment and treatment unit—it most certainly was not a treatment unit; it was a maltreatment unit. Following that, the Government committed to moving about 3,000 adults with learning disabilities and autism out of in-patient settings and into community-based support by next April.

Although we have seen a small reduction in the number of people in in-patient settings, about 2,500 people are still in hospital, as the right hon. Gentleman said. Some 10% of those patients are under 18—that number has more than doubled since 2015; 61% have been in hospital for over two years and some, sadly, for over 10 years; and 46% have not had a care treatment review in the past six months, as mandated. As he also told us, and as I also understand from an excellent organisation called Dimensions, which provides personalised social care services to people with learning disabilities and autism, more than 22% of people are placed more than 100 km from home. So although there has been a reduction in the number of people living in hospital and some real success in moving people into community support, too many people are still being admitted or readmitted to hospital, and there remain obstacles to moving some of the original cohort considered under the programme into real homes.

The success of the programme relies on the right support being available in the community to prevent people from being admitted in the first place or to help them move out of hospital. The number of autistic people recorded in in-patient units has increased by over a third in the three years since data collection began in March 2015. That is a phenomenal increase. According to the latest figures, almost 48% of people covered by the transforming care programme are in fact autistic. While some of this increase may be put down to better identification of autism, it still displays a concerning over-reliance on hospitals rather than homes. Put simply, if transforming care does not work for autistic people, I am afraid that it will not work. If the programme is to continue, all mental health staff will require better training on and understanding of autism and the right community support will have to be made available.

It is crucial that we hear from the Minister what plans there are beyond March 2019 to ensure that any progress made is not lost and that there is a focus on areas where better progress needs to be made, specifically in supporting autistic people.

[Jim Shannon (Strangford) (DUP)]

I am sorry I was not here earlier, but I was in a one-hour Westminster Hall debate. I commend the right hon. Lady for the hard work she does on autism across the United Kingdom. As she will know, Northern Ireland has an autism strategy that leads the United Kingdom. It is similar to the programme in Wales, but we are leading the way. Will she kindly suggest to the Minister that the Government look at the plan in Northern Ireland, along with the one in Wales, as a good way of proceeding?

[Dame Cheryl Gillan]

Yes, it is very important that we look at what arrangements the devolved countries make for people with autism. Certainly a few years ago, Wales was well in advance with its plans for autism, which I found most commendable, but I think it now needs to revisit and update its plans, because none of these plans must be left to one side; they need to be constantly reviewed and updated.

I am pleased that next year we will have the opportunity to conduct a 10-year review of the Autism Act. I hope the right hon. Gentleman will contribute to the work that many Members are doing on both sides of the House in various areas, from education to employment, healthcare and even the over-representation of people with autism in the criminal justice system, so that we can put down a marker for the Government after 10 years on what progress has been made and how much further we have to go. If the hon. Member for Strangford (Jim Shannon) would be good enough to send me a link to the plans in Northern Ireland, or point me in the right direction, I am sure they will be taken into consideration as we carry out the review.

I am pleased to see the Minister in her place, as she obviously has a lead role, but I think that all relevant Departments need to play their part. I still have a feeling that we need a cross-departmental ministerial taskforce to cover the areas that I have just been highlighting, such as health, education, housing, and justice, all of which we will include in the APPG’s summary and presentation to the Government next year. Let me put down a marker for the Government. I want to know what plans the Minister has for the future of transforming care, whether she will establish that cross-departmental taskforce to lead the process, and what steps she will take to reduce the number of admissions of autistic people and improve the community services that should support them.

I work closely with many autism charities, and in particular with the National Autistic Society. Alongside Mencap and the Challenging Behaviour Foundation, it has been leading research on the experience of families who have been affected by the transforming care programme. It wanted to look into exactly how relatives came to be in mental health hospitals, and what was getting in the way of their being discharged back into the community. I commend to the Minister the report “Transforming Care: our stories”. It contains the very powerful stories of 13 families, and I think that she will find it very useful, if she or her officials have not yet been able to read it.

The report found that, despite the existence of a national programme, five areas needed real focus to make the programme successful. The first is

“Making sure the right services are available in the community”.

I think we have covered that. The second is involving and listening to individual families, and helping them to be heard through advocacy if necessary. The third is improving the quality of in-patient care. The fourth is

“Making plans for discharge and sticking to them”.

The fifth is providing specialist support from trained and understanding staff. For me, that last one is key. When we have met someone with autism, we have met just one person with autism. Everyone is different. Staff really need to understand that, and to be trained to understand people with autism.

Universal Health Coverage

Jim Shannon Excerpts

Thursday 5th July 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered the role of universal health coverage in tackling preventable and treatable diseases.

I would first like to thank the Backbench Business Committee for granting this debate. I have been lobbied fairly heavily on the subject and a number of organisations asked me to approach the Committee and request a debate. I am pleased to see the Minister in his place. He and I have discussed the matter before. It is probably one of those issues that involves not only the Department of Health but perhaps the Department for International Development. He once told me that he took part in a debate that covered five different Departments—I suppose he is a man of many talents—so he will be able to answer wisely for the Departments covered in this debate. I thank hon. Members for coming along to Westminster Hall on such a warm day, and given the almost end-of-season approach we seem to have to matters now.

I wish to begin, as we approach the 70th anniversary of our NHS, by thanking all those who have made that institution all that it is. I have said that in other places, but I wanted to say it publicly now in Westminster Hall. Many political parties have had the opportunity to be part of the creation of our great NHS, and many of us have had the opportunity to be cared for by it, both surgically—in operations—and through the care that nurses provide in hospitals, which I personally have had on three occasions over the past year. I am thankful to every person involved in the NHS, from the porter to the paediatric consultant, from the occupational therapist to the oncologist, from the scrub nurse to the surgeon, from the auxiliary nurse to the audiology clinician, and all people in between. I thank them all very much for all that they do for us as patients, but also for us as a nation. I want to put that on the record.

I thank NHS staff for making the NHS work in situations that often seem unworkable, due to stress and pressure. As the Democratic Unionist party’s spokesperson on health, I am frequently contacted by those who need more than the service has to offer. A great many times we focus on the problems of the NHS and where we are—that is the way life is—but we also need to reflect on how good it is and how much we owe it.

People often come to us with their problems; they do not necessarily come to us to tell us how good a job we are doing. Perhaps half a dozen people will call in a week to say what a good a job we are doing, but hundreds of others will come to us with their complaints. That is the nature of the job. It is not about complaining; it is part of the job. I believe that I must highlight where we are going wrong, or perhaps where we can do things better. We must see if we can do things along those lines.

Today it is my desire to thank all those who work in the NHS so tirelessly, who do not always get the recognition they deserve. The NHS is our nation’s greatest asset. A Member said in the main Chamber today during business questions that the NHS was probably our nation’s greatest accomplishment. I tend to agree, as I am sure would many others. The NHS embodies our British values of compassion and fairness. It represents our nation’s strong sense of justice and the desire to help those in need. With its quality of care and pioneering scientific research, it is a world-leading institution.

Across the whole of the United Kingdom of Great Britain and Northern Ireland, the NHS works in partnership with many universities and private companies on research and development for drugs that can help save lives. Queen’s University Belfast is one of those universities, and I know that because it is one of the institutions that I would call in on. Indeed, just three months ago I visited its cancer research team to see the scientific work they are doing. They were over here this week, along with staff from breast cancer charities, in the Attlee suite in Portcullis House, and we had a chance to catch up. What they are doing to try to find cures for cancer at all levels is incredible. There is also the complexity of breast cancer treatment to consider, because many people have different variations, so the drugs they take must be just as varied.

The NHS is the type of British export that can help underpin the UK’s global Britain vision, which I believe we lead the world on and which we can be the forerunners for. Health for all, which is the bedrock of this most beloved institution, is a principle that the UK originated in 1948, when it first embarked on the altruistic duty of creating a national health system to provide care to everyone, everywhere, without their having to experience financial hardship.

[Tulip Siddiq (Hampstead and Kilburn) (Lab)]

I agree with everything the hon. Gentleman has said so far about the NHS. I saw its merits at first hand when I had a baby two years ago. However, I wish to make a point about the current shortage in the NHS of the BCG vaccine, which is used to treat tuberculosis. My constituent, Hussein, is 11 months old. He was born in Lebanon but is a British citizen. His parents have told me that their GP said that Hussein cannot have the BCG vaccine on the NHS because he was born outside the UK. Does the hon. Gentleman agree that although our NHS has a fantastic track record in tackling diseases and providing care, in order for it to have a successful future every British citizen must be entitled to the preventive medicines on offer?

[Jim Shannon]

I thank the hon. Lady for that intervention. I know that the Minister, like me, listened carefully to what she said. If there is clearly the anomaly that she outlines, the NHS should reply and make the vaccine available. I am quite incredulous that someone who is a citizen of the United Kingdom of Great Britain and Northern Ireland cannot have it. That is almost impossible to understand. I am sure that the hon. Lady will receive a response from the Minister in whatever time is left at the end of the debate.

The NHS is the purest and simplest definition of universal health coverage, and it is the world’s oldest and most successful model. The World Health Organisation estimates that half the world’s population lack access to essential healthcare services and that 100 million people are pushed into extreme poverty by healthcare expenses. We have problems as well. I get frustrated sometimes when constituents come to me. I am referring to Northern Ireland, where health is a devolved matter and therefore not the Minister’s responsibility, but I believe that these cases illustrate some of the issues. A constituent told me this week that a consultant had said to them, “Well, you’re going to have to wait maybe 53 weeks for an operation.” If people want to have an operation through private healthcare, however, they are told that it could maybe be done before the end of the month. As always, if someone can pay for something, they can have it done. We have these problems within the NHS in Northern Ireland and, I suspect, across the rest of the United Kingdom.

As I said, the World Health Organisation estimates that half the world’s population lack access to essential healthcare services and that some 100 million people are pushed into extreme poverty by healthcare expenses. Behind these horrifying statistics are tragic human stories of unnecessary loss and suffering. My parliamentary aide, who does a lot of speech writing and research for me, has travelled to Africa to work every summer, usually in Swaziland but also in Zimbabwe over the past couple of years. That is through Elim Missions, which is a church group in my constituency. She used to visit Africa every summer, during the recess, but she now has two young girls and has not been for a few years. When she came home each year, the tales she would tell about the hospitals she visited would break your heart.

Let me tie together these two stories: first, our NHS; and secondly—perhaps this is for DFID—the responsibility that I believe we have to reach out and help other countries. I referred to that in my earlier discussion with the Minister. My aide’s stories would really have broken your heart. The children’s ward was full of the cast-offs from hospitals in the UK. I do not mean that disrespectfully, because we do that in Northern Ireland—Elim Missions and many other groups do it. We fill containers with second-hand hospital apparatus that might need repairs and we send it out to Zimbabwe, Swaziland and other countries around the world. The equipment can still be used, but sometimes it is worse for wear. We would not put our children anywhere near some of those conditions, but the staff we met made use of all that apparatus and all those materials.

Children in orphanages went without basic medical care until nurses from the UK gave up years of their lives to provide medical training to local communities, for example on the importance of sterilisation. Sometimes the issues can be small, but necessary, such as the simple effect of drops. The hon. Member for Stafford (Jeremy Lefroy) and I were talking this morning about some other things. He said that when he was in Africa his son was taken very ill with pneumonia at eight months old. They did not have the small antibiotic drops that were needed, but once his son got them he became much better and got over the illness. That shows how small things can make a difference and how important it is that we do them.

The Luke Commission is a charity that has been operating since 2005. It takes free healthcare and hope to the most isolated populations in Swaziland. Mobile hospital outreach sites are set up in the remotest parts of that small country. The population is scattered and dispersed. Patients are tested, counselled and linked to treatment for HIV/AIDS. Swaziland has some of the highest levels of HIV in the whole world, and the whole of Africa in particular. Those suspected of having TB are X-rayed and started on medication. Voluntary male circumcisions are performed in an on-site 11-bed operating room, as studies have shown that the rate of HIV transmission is cut by 60% in circumcised males. Those are practical actions that can be taken to change things. More and more evidence indicates that lack of male circumcision is one of the primary reasons why the HIV prevalence rate is so high. These actions can reduce that. Nurses travel back to rural communities to check on newly circumcised men to ensure that they are healing, to answer questions and to provide HIV prevention education.

At the mobile hospital sites, schoolchildren are treated for skin and intestinal problems. Young people are fitted with new shoes. Those are practical, small things that can make a difference. I put on record my thanks to the Elim church charity and to the many other charities and churches across my constituency that gather products, whether clothes, shoes, medication or hospital apparatus—whatever it may be—to help fit out some of these places in Swaziland, Zimbabwe and further afield.

Handicapped people are analysed by Luke Commission medical personnel and given bush wheelchairs—they need a wheelchair that is practical. Follow-up treatment for patients with HIV, chronic disease, complex medical disease and various cancers is offered. Those with poor eyesight receive vision services and glasses, if needed. There is an ophthalmic surgical programme primarily focused on the removal of cataracts, which are a serious issue in parts of Africa. Those practical changes can be made easily. They do not need a lot of money or investment, but they can change lives. Can you imagine, Mr McCabe, not having your eyesight? Of all the things in the world that you would never want to lose, it would be your eyesight. I say that as someone who has worn glasses since I was eight. I understand the importance.

Packets of medication are distributed by the thousands every day, each prescribed by a doctor with instructions on usage in the mother tongue so that they are understood. Psychosocial and grief counselling is available, too. The pain and the tears they have are no less than the pain and tears we have. Some of the things that happen to them happen because they do not have medical treatment available. The Luke Commission team of nearly 100 people treated more than 61,000 patients in 2015. We can do a lot more with small things, but how many more could we affect?

Most recently, a young lady from my constituency gave up her time during her summer to help the Luke Commission. So many others from the UK give up their time to make a difference. Would the Minister be so kind as to outline the initiatives that are in place? I understand his remit may not stretch to that, but it would be helpful if he could give us some idea. What initiatives are in place to encourage our knowledge and skills to be shared worldwide, like the schemes of Doctors Without Borders and the Luke Commission? How are the Government sharing and disseminating the expertise and learning generated from the NHS with Health Minsters in developing countries?

We have great partnerships and the wonderful NHS. We are celebrating the NHS’s 70 years of tremendous work, but we should be trying to show other countries what we can do. Will the Minister give us some idea of how we can help developing countries? I believe that is our duty, and I would like to better understand how we can fulfil it. We need to take up the mantle and do more in our constituencies. We are doing practical, physical and financial things through churches and other charities that directly help in Africa and other countries across the world.

Countries in the developing world are already showcasing their ingenuity and political will in delivering universal healthcare. For example, Bangladesh has achieved wonders in national health in the last 25 years. More than 95% of Bangladeshi children are now fully immunised—that is tremendous. There have been other massive improvements: breastfeeding is near universal, and the level of stunting in children under five declined from 51% in 2004 to 36% in 2014—a significant decrease, showing what we can do if we influence and help both physically and practically. Community outreach by a skilled cadre of female community workers was instrumental in achieving almost universal immunisation coverage, the world’s highest coverage of oral rehydration solution, greater uptake of family planning, and innovative solutions for community-based management of sick newborn babies and severe and acute malnutrition.

Bangladesh is a world leader in reducing child mortality, but pneumonia remains a major challenge for policy makers. Sadly, childhood pneumonia is prevalent across many countries. The stats are alarming: every minute of every day, including today, two young lives are lost to pneumonia; in 2016, it claimed nearly a million children under the age of five in developing countries—more than HIV, TB and malaria combined. If we had the antibiotics available, we could tackle a lot of those problems. Pneumonia is a killer that leaves children gasping for breath and fighting for their lives, but it is also a disease that we have the power to prevent, diagnose and treat. We can do that, so how can we do it better to save those million children’s lives?

We know that an accessible and free health system is the most effective way of treating pneumonia. A fully integrated universal healthcare model can care for a child from the moment they are born until they reach adulthood. That will prevent deaths from pneumonia, which is the biggest killer. We are here today to find out what more can be done to provide UHC in countries around the world, including those in Africa and the middle east, India, Pakistan, Bangladesh and other countries where these problems occur. Millions of people around the world are denied their most basic rights of access to healthcare. We have UHC in this country, and I would like to think that one day we will be able to make it available across the world. As beneficiaries of the NHS, everyone in this room must believe we want everyone to have what we have: a system that is fair and free. We must therefore take steps to change things.

Pneumonia is a prevalent issue within the Commonwealth, too. Save the Children has calculated that children under the age of five living in Commonwealth countries are two and a half times more likely to die from pneumonia than children living in non-Commonwealth countries. When we hear those stats, we realise how big the difference is that we have to try to reduce. Will the UK Government raise the subject at the next Commonwealth Health Ministers meeting? If the Minister is in a position to use that power, I ask him to do so. He should certainly contact the relevant Department to ensure that it happens. What leadership role can the UK Government play, given that the UK is the chair of the Commonwealth for the next two years? I would like to think we can use that influential role. I know we will, but perhaps we should be reminded that we have that opportunity. We should try hard to make things happen.

I am incredibly pleased to have one of the world’s foremost research and medical centres in the wonderful Queen’s University. The steps taken in improving healthcare worldwide have been tremendous, including the most recent breakthrough regarding the targeting of antibiotics for pneumonia using groundbreaking cancer treatment technology. I mentioned Queen’s at the beginning of my speech, but I mention it again, because it is at the coalface of breakthrough technology. I asked Queen’s for a little more in-depth information regarding the breakthrough. That information is certainly something to be proud of. The Queen’s research team indicated that our struggle against infectious diseases is far from over, but they, with other universities, research and development bodies and private companies, are doing their best to make things happen. Globalisation has increased the risk of pandemics, which we get regularly, reminding us that whenever we accomplish something, another disease and pandemic comes along, and sometimes existing drugs are useless.

Unsurprisingly, antimicrobial resistance—AMR—is included in the recently released UK Government national risk register of civil emergencies that may directly affect the UK over the next five years. Our Government have been instrumental in assisting and responding, and it is always good that they do that. More than 80,000 deaths in the UK are estimated if there is a widespread outbreak of a resistant microbe. Far from being an apocalyptic fantasy, a post-antibiotic era in which common infections and minor injuries can kill is a very real possibility for the 21st century. We can never rest on our laurels with what we have done. We need to step forward and be more aware of what we need to do in the time ahead. New diseases are always developing, and there is always a need to match them. We should pay respect and give credit to organisations that do that well.

The O’Neill review on AMR sets out the global threat by highlighting that drug-resistant infections already kill hundreds of thousands of people a year globally. By 2050, it could be as many as 10 million—one person every three seconds. If we needed a reminder of the importance of the issue, that would be the figure. I am not sure if anybody in the Chamber will be around in 2050—I certainly will not be—but those who are could well face one of the debilitating diseases that we need to research now.

Of particular concern is the mounting prevalence of infections caused by multi-drug-resistant gram-negative bacteria, in particular Klebsiella pneumoniae. That pathogen has been singled out as an urgent threat to human health by the UK Government, the US Centres for Disease Control and Prevention, and the World Health Organisation due to extremely drug-resistant strains. Notably, Klebsiella infections have increased by 12% in the UK alone over the last five years. That tells us how things are developing, and that we need to be prepared.

Professor Chris Scott, the interim director of the Centre for Cancer Research and Cell Biology, is an expert in nanotechnology. In June, he teamed up with Professor Jose Bengoechea, director of the Wellcome-Wolfson Institute for Experimental Medicine, who is a world expert on infections by multi-drug-resistant pathogens, chiefly Klebsiella pneumoniae. Professor Bengoechea’s team discovered that it is possible to use the nanotechnology approaches that Professor Scott is developing for cancer to try to treat the bacteria that reside inside human cells and combat that pathogen. We have to listen to the experts and ask them to take things forward in the right way.

Although there is clearly a need for new antibiotic drugs, which must be the Government’s main focus in tackling the potential tsunami of antimicrobial resistance that we face, Queen’s research shows that with effective delivery of antibiotics we will gain a better therapeutic effect against a main protagonist of pneumonia. The complex scientific work that Queen’s is doing should make a difference. Patients may need to take an inhaler of particles containing antibiotics, as opposed to a simple tablet, in the specific case of pneumonia. It is possible that an advanced formulation of drugs could slow resistance developing in some instances and generate better outcomes for patients. It may also mean that we could extend the useful lifespan of some of our current antibiotics. To take that to patients, we need to prepare clinical grade material, but advanced formulations such as nanomedicine are difficult to manufacture. Life is never straightforward, but when we are given a challenge we have to take it on.

Investment is needed in the UK to provide facilities that can advance these excellent therapeutic strategies before they can be tested on humans. We have a process to go through and we must walk along those lines. When we come to the end of the road, we want to ensure that the medication is appropriate and safe. Additional funding needs to be allocated to new approaches to treat infections. Again, the Minister may wish to tell us how the Government are working through the Department of Health and Social Care with universities, companies and research and development on how that process can work, and perhaps how it can work better.

By thinking outside the box, as exemplified by the Queen’s University Belfast research, we will find much-needed new therapeutics. Several projects at Queen’s University Belfast are reaching the pre-clinical stage and are being stalled by the lack of investment, since pharma are still not interested in supporting this essential work. There are ways of going forward, but we need a wee bit of security as well. The lady from Queen’s University who was here this week talking about breast cancer research was funded through one of the Government Departments in Northern Ireland. Queen’s University also gave her a position, which brought her a bit of income. That meant that she could do her research here in the UK, and we in the UK can get the advantage and try to advance that as well. Other UK Government schemes, such as those supported by Innovate UK, also fall short in supporting pre-clinical work because there is still no commitment from pharma. I ask the Minister to consider standing in the breach, if that is possible, and supplying the necessary support and funding for Queen’s and other research centres to help us to do better.

It is expected that by 2035 more than 500,000 people in the UK will be diagnosed with cancer each year. To ensure that our health service can meet future demand, action to prevent cancer and other diseases must be at the forefront of any approach. We have heard today some of the figures, certainly on the mainland in relation to cancer and some of the delays. There are many problems in the NHS, but we are here to help the Minister and to encourage him and the Department of Health to move forward.

The Government must train and employ more staff to diagnose and treat cancers earlier. We can be proud of what the UK Government—our Government—do on healthcare, but we strive to do more, and the Minister strives to do more. The Department of Health is already looking across the world to see how it can share expertise. The Department for International Development is helping countries to strengthen their healthcare systems. What else could we achieve if we joined up the dots and worked together more on implementing universal healthcare?

We should encourage countries to raise their own domestic resources for healthcare, which could have a transformative impact. DFID has been fantastic at supporting the health system to strengthen, but that is not always free, which leaves behind the poorest and most marginalised. I referred earlier to those who are unable to get their operation through the NHS, but are offered the opportunity to pay for it. I am very unhappy with that system; it suits some people, but not everyone. We have to be ever mindful that some of the poorest and most marginalised people in countries across the world are at the bottom rung of the healthcare ladder. We should share our expertise on domestic funding for the NHS with Governments around the world, encouraging Governments to spend more on healthcare.

From 2011 to 2015 there was a cross-Government strategy on global healthcare. An update strategy could include recommendations on domestic resource mobilisation. I understand that the Department of Health has a global health team. It would be helpful to know the remit of that team and how they co-ordinate with DFID on global health issues. What is the connection? Do they have any input to the policy, strategy and the way forward? Do they have regular meetings?

In February 2014, the world watched in horror as Ebola swept across many parts of Africa. We in this country did our bit immediately to respond. We sent our service personnel, our experts and our medication. We were not found wanting, and we never will be. The horror turned to pride as we saw that role that UK aid and our healthcare professionals played in stopping Ebola and saving lives. We should be immensely proud of what our people did, and what our Government did and continue to do. That was the UK Government at their best. They co-ordinated the response to a major global health crisis and supported a country’s health system. How well that was done! We owe thanks to those personnel and to our Government for leading the way. We would never wish for Ebola or something similar to return. What can be done to implement that sort of cross-Government approach to supporting health systems?

I thank hon. Members for coming along to support me, and the Minister for coming along to respond. I thank hon. Members for their time. How does the Minister believe we can excel, improve and achieve an even higher level of global care?

--- Later in debate ---

[Jim Shannon]

I certainly would, Mr McCabe. I thank you for chairing the debate so well. I also thank the hon. Members for Cumbernauld, Kilsyth and Kirkintilloch East (Stuart C. McDonald)—my pronunciation is probably all wrong—and for Washington and Sunderland West (Mrs Hodgson), whose contributions were immense. The hon. Member for Hampstead and Kilburn (Tulip Siddiq) highlighted important issues with the BCG vaccine.

I thank the Minister for his comprehensive response. He always says that he is pleased to be in his position because he has a deep interest in the subject, and that was illustrated by his responses to everyone who spoke. He was right to say that we are celebrating the 70th anniversary of the NHS and its excellent work, and to focus on what we can do both here and around the world. I am glad he mentioned the importance of remembering, whenever we think about diseases and healthcare in this country, that we also have to prepare for the diseases that come into the country from outside. We have a joint approach, in which the NHS delivers great healthcare here and we share that healthcare around the world. For that, we are eternally grateful.

Question put and agreed to.

Resolved,

That this House has considered the role of universal health coverage in tackling preventable and treatable diseases.

Child Migration Programmes (Child Abuse)

Jim Shannon Excerpts

Tuesday 3rd July 2018 Westminster Hall

[Lisa Nandy]

I am very grateful to the hon. Gentleman for attending this debate and for raising that point. One of the reasons why it was important for me to bring this issue to the House for the first time for a full debate is that many Members have a strong interest in this area and in pursuing justice for the affected families. It is important that those suggestions are heard, and I hope the Minister has heard them.

Like Marcelle O’Brien, many of those who survived that horrendous period are still living with the consequences. Four years ago, the Prime Minister—then the Home Secretary—commissioned an independent inquiry into child sexual abuse. MPs from various parties, including me, welcomed that decision. The inquiry’s first full report is on this subject, and it is damning.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this issue to Westminster Hall. It is a pity that there are not more Members here to contribute, but I commend her for leading the charge. Does she agree that, given that every child migrant was exposed to an equal level of risk due to the failings in the system she has referred to, they must all be entitled to an equal level of redress?

[Lisa Nandy]

I am grateful for the hon. Gentleman’s interest in this issue. Although I agree that it would be great to see more Members of Parliament in the Chamber, one of the problems is that this issue did not get the coverage or attention it deserves until relatively recently. I hope that by bringing it to the House, I will help more Members to understand what is happening and more survivors to come forward so we can start to see action, which is long overdue. The hon. Gentleman makes a very important point: the report recommends equal compensation for equal risk. I have no desire to see survivors and victims have to prove what happened to them and recount those horrific stories again. The report was absolutely right to make that recommendation, and I would be grateful if the Minister could respond to it.

I mentioned the first full report from the wide-ranging, comprehensive inquiry into child sexual abuse. It acknowledges the role of churches and charities in causing harm to children, but it concludes that the British Government were primarily to blame for the continued existence of child migration programmes after the second world war. They failed to act, even when warned about allegations of sexual abuse. The report is devastating in its conclusion that

“the main reason for HMG’s failure to act was the politics of the day, which were consistently prioritised over the welfare of children.”

The Government did not want to risk their relations with Australia or to offend the voluntary societies that participated in the scheme. Ministers in successive Governments were cowed by the patronage and power of those who were involved in the schemes.

Despite that, the children were stronger. The truth began to emerge more than 30 years ago, thanks to their determination and courage. Even in the face of their bravery, successive Governments failed to accept responsibility. As the current Government recently acknowledged, the UK Government continued to maintain that it was a matter for the Australian Government until well into the 2000s. It is only because of the Child Migrants Trust, led by Dr Margaret Humphreys, who has rightly been described as the “conscience of Britain” on this important human rights issue, and a number of brave and persistent survivors here and across the world, many of whom will be watching this debate with interest today—some have had to stay up quite late to do so—that this became a matter of public attention that is still being pursued now.

The report of the independent inquiry into child sexual abuse was published four months ago. It recognised the importance of the public apology made by Gordon Brown in one of his last acts as Prime Minister, and of the family restoration fund, for which he and Andy Burnham, the then Health Secretary, found £6 million, and which has enabled more than 1,000 people to be reunited with their families. The current Government have since announced an additional £2 million for that fund, for which I am grateful. It is very welcome. I will return to that subject in a moment.

The report made just three recommendations: that the sending institutions that have failed to apologise publicly and in person to the children abused in their care do so; that all institutions that sent children abroad put in place robust systems for retaining and preserving easily accessible records of individual child migrants; and, finally, that adequate financial redress be made to the more than 2,000 surviving former child migrants. It also made it clear that this is urgent—many have died and others are dying, and it was unequivocal that the scheme must be up and running within 12 months.

In the four months since that urgent, devastating report was published, the silence from the Government has been deafening. Confusion about which Department is responsible has reigned. The Home Office made a short statement in March, when the report was published. The Department of Health and Social Care later responded to written questions. After four weeks of back-and-forth between those two Departments, I resorted to raising a point of order in the Chamber. In response, I was told that I could seek to raise the matter with the Prime Minister, which I did. I had to resort to going to the Prime Minister a month after the report was published just to get clarity from the Government about which Department is responsible. Four months on and multiple attempts later, the Government are still no clearer about their response and have still not told us when it will be made.

I am not the only one who has hit this brick wall. The Australian law firm Hugh James, which acts for former child migrants, shared with me a letter it sent to the Health Secretary. It said:

“We hand delivered a letter concerning this matter to the FCO on 26 April 2018. We served the enclosed letter on the Prime Minister’s Office on 29 May 2018. On 5 June 2018 we were informed by the Prime Minister’s Office that both of our letters were passed to your department. We are disappointed we are yet to receive a response from you and we ask you to contact us as soon as possible.”

That was two weeks ago. I ask the Minister, when will that firm get a reply on behalf of those former child migrants?

I want to say something really serious to the Minister today. The Child Migrants Trust tells me that, in the time that the Government have sat on the report, 10 former child migrants have died. Ten people died not knowing whether the Government will now draw a line under one of the darkest periods of our history, and whether they are committed to truth, redress, justice, and learning lessons to ensure this never happens again. That is the legacy those people deserve. Still now, the state, which did so much harm to them at the beginning of their lives, continues to do harm to them all the way through until their death. That cannot go on.

Will the Minister explain the reason for the delay within Government? Will she assure us that this is now the highest priority and is being dealt with a matter of urgency? As well as being a clear question of justice, this goes to the heart of whether any of us can have confidence in the child sex abuse inquiry that the Prime Minister established. She told the House when she set up the inquiry that she believed it to be essential that the lessons that come out are not only learned but acted upon. As the Minister knows, the inquiry has been beset by problems since. It has been through four chairs and has faced serious allegations of misconduct. It has cost £64 million so far—the costs are rising—and has lost the confidence of many victims’ and survivors’ groups, which have walked away over that time. Many, however, continue to invest time and energy in the inquiry, because they hope that it will make a difference. That first report must have been a sign of encouragement to them that the inquiry would not shy away from asking the difficult questions and telling the truth.

Now the Government must show that they are serious about taking action, and get on with doing so. It has been four months, and at least 10 people have died in that time, so will the Minister tell us today, do the Government accept the report’s three clear recommendations? If she cannot tell us today, will she at least commit to a full and formal response to the report before the summer recess? That request comes directly from child migrant groups, and I would be grateful for a clear answer.

The inquiry made huge progress in ensuring that apologies were made. Many organisations, including the Children’s Society, where I once worked, took the opportunity afforded to make a welcome but long-overdue apology. Will the Minister tell us, however, what progress has been made to ensure that the records are kept and made available? I have been told that the Prince’s Trust—it took over Fairbridge, which was involved in the child migration programmes—has not yet made all its records available. Have the Government contacted the agencies listed in the report to ensure that such measures are in place? What has been the response of those agencies? If the Government have not yet done that, will she commit today to doing so?

What progress has the Minister made on the question of financial redress? Has she assessed the numbers of those who might qualify? Has she done a scoping exercise to determine potential costs? In the past four months, what discussions have the Government had with the independent inquiry into child sexual abuse and the Child Migrants Trust about implementing the recommendations? Does she accept the principle, mentioned by the hon. Member for Strangford (Jim Shannon), of equal compensation because children were exposed to equal risk?

Let me compare the UK Government’s response and their position with Australia’s. In December 2017, a royal commission in Australia published the results of its five-year investigation into child abuse and recommended a national redress scheme. Within two months the Prime Minister had responded and set a deadline of 1 July. Legislation was fast-tracked through Parliament last month, and the scheme began accepting applications on Sunday, as promised. The scheme offers not only monetary payments but access to counselling and a direct personal response. Survivors who are elderly or ill will be fast-tracked but, in any case, the promise has been made that claims will be processed within weeks. Redress payments will not be taxed. The average payment is expected to be about 76,000 Australian dollars, which is about £42,000 in our money.

Surely it should shame us that the country the child migrants were sent to is responding, but not the country that sent them there—the country that was responsible for their care and welfare at the time. How can it be right that the Australian Prime Minister can respond to a report with 409 recommendations in only two months, but our Prime Minister cannot respond to a report with only three recommendations in more than double that time? Has the Minister made contact with Ministers and officials in Australia to understand how they established that scheme and to learn the lessons? Will she tell me today that the Government at least accept the principle of financial redress? Will she confirm that a scheme will be up and running by March next year, as per the IICSA’s recommendation?

The Minister is aware that when Gordon Brown made a formal apology in 2010, the full extent of the abuse was not known. He and many of the survivors therefore believe that a full apology is overdue. In this matter, I have to disagree with the conclusion of the independent inquiry’s report—not to recommend a further apology—because the harms caused by the migrant programmes are many and complex. That is why it matters that we recognise not simply the harm done to children by separating them from their families and countries, but the additional sexual, physical and emotional abuse laid bare so starkly by the report and the harm of our failure to confront it over successive Governments and many decades. Will the Minister commit to that today, or at the very least provide us with a date by which time the Prime Minister will respond to that specific request?

Another pressing need is a commitment to continue the family restoration fund beyond 2019. One thousand people remain to be reunited with their families, and there is a waiting list. I welcome the Government’s commitment so far, and the £2 million that they made available to the fund, but its continuation is of central importance. Many of the mums and dads of the former child migrants went to their graves not knowing what had happened to their children or even whether they were dead or alive. They never found out that they had become grandparents, and they never saw or got to hold their children ever again.

The family restoration fund has enabled some of those deep wounds at least to start to heal, and important work remains to be done before it is too late. The Minister knows, as I do—as we all do—that many of the former child migrants have died and that others are seriously ill and dying. Every day counts. The fund will enable nothing less than a restoration to families of the rights stripped away from them many decades ago. Will she give us a commitment that the fund will be continued until all the former child migrants have been able to seek to be reunited with their families?

This has been one of the most shameful episodes in British history. For 30 years we have known about the scandal but failed to act. The harm that was done then is compounded by our knowledge that it continues to cause harm to people in this country and across the world, yet still nothing is done. The secretary of the International Association of former Child Migrants and their Families, Harold Haig, put it movingly when he said on the day of the formal apology by Prime Minister Gordon Brown, that

“our thoughts are with those child migrants who have died and particularly those who ended their lives because the wounds were too deep and too painful”.

At least 10 people have died that we know of since the report was published four months ago. I hope that the Minister will tell us today that no more will die suffering harm from the British Government, and that we shall finally deal with one of the darkest periods in our history.

Blackpool Teaching Hospitals NHS Foundation Trust: Governance

Jim Shannon Excerpts

Wednesday 27th June 2018 Commons Chamber

[Gordon Marsden (Blackpool South) (Lab)]

At the beginning of this year, it was announced that the chair of the Blackpool Teaching Hospitals NHS Foundation Trust, Ian Johnson, would be stepping down at Easter. I had always found him approachable and helpful in my regular meetings with him to discuss the trust’s work. For the avoidance of doubt, I should say that although the trust is in the constituency of the hon. Member for Blackpool North and Cleveleys (Paul Maynard), who is sitting on the Government Front Bench, it covers not just my constituency and his, but those of the hon. Member for Fylde (Mark Menzies), the right hon. Member for Wyre and Preston North (Mr Wallace) and my hon. Friend the Member for Lancaster and Fleetwood (Cat Smith).

When it was subsequently announced that Mr Johnson had applied to become chair of the University Hospitals of Morecambe Bay Foundation Trust, I was mildly surprised, but thought nothing more of it. I was then interested, as I am sure others were—this was sent to myself and neighbouring MPs—to receive an email from the secretary of the trust encouraging us to go forward and talk about the process for Mr Johnson’s successor. I had no inkling then of the sequence of events that would lead me to seek this Adjournment debate.

What started to concern me about the circulation of this information was the extraordinarily short period of time that we were given. I did write to the secretary of the trust to ask why we had not been given earlier notice of the facts. When I found out that the advertisement had been placed in The Times, the date for the application was 16 April, which was within a very short period of time. I said that I would like more details on the shortlisting, the interviews and the interviewing panel. I said that I was sure that the trust would understand how important it was that there should be a strong transparency in the trust at such a critical point at this time. I got a slightly thin but soothing note from Michael Hearty, a governor of the trust, who announced himself as the chair of the nominations committee. He said:

“Let me first of all reassure you about the openness and transparency of the current Chair recruitment process.”

He took me through the process, and he did indeed confirm that it would be very speedy. He said that a long list of candidates had been presented to the nominations committee, but the list was not actually very long. It was a list of only eight, which makes me wonder why all the candidates were not interviewed.

There was then a very short process of presentations to stakeholders and final interviews. I wrote back to the governor and said that I thought there were still “serious questions” to be answered, particularly about the fact that there was no information about the closing date for applications. I asked him whether he would list the members of the nominations committee, and said that I was concerned that it had taken a week to provide me with merely a basic timeline regarding some of the questions that I had asked.

The second letter that I received from the governor was written in a rather smooth but slightly condescending fashion. He said:

“I am disappointed that my original response did not provide you with all the assurances that you were seeking and, as a consequence, you have found the need to ask further questions.”

As for the advertising of the process, he said that it was the first time that the trust had taken such a step, and that, in view of the progression, it thought that it would be open and transparent to let people know about it. He said:

“I am sure you will recognise its circulation as a well-intentioned act”,

although the closing date was an obvious piece of detail that could have been included in the original email.

At this point, I began to think of the old proverb that says:

“The louder he talked of his honour, the faster we counted our spoons.”

I said to the governor in response that I did not think that this was very transparent. I asked him who had appointed the nominations committee, and he told me that it was appointed by the governors. I am still at a loss to understand why the shortlisting involved such a hurry.

The other thing that bothered me was the inclusion of the chief executive of the trust, Wendy Swift, on the nominations committee. I laid out my concerns in an email to fellow MPs that I sent to them on 16 May, in which I said:

“the inclusion of the Chief Executive on that Committee, which effectively has overseen all aspects of this process, has prepared the short list of candidates and will presumably make a recommendation to Governors this Friday. I believe that to give any Chief Executive so prominent a role overseeing that process, as opposed to that person perfectly reasonably but separately giving thoughts and feedback to it, could be seen as anomalous in the context of the necessary future relationship of the new Chair to the Chief Exec.

I said that I had

“taken these steps to question what has gone on (with some reluctance and I think for the first time in my 20-years relationship with the Trust)”

because of my real concerns for the procedure, not for the individuals, because at that stage neither I nor anybody else knew who had applied or been shortlisted.

I then looked at the constitution of the trust and the manual of the council of governors. That manual made it very clear that the chief executive was not automatically one of the members of the committee. The role of the council of governors is, of course, to hold the executive to account, so the chief executive could have acted in an advisory capacity, but not as a member. The trust’s constitution said that she should be a member, so both of them could not be correct.

I wrote again to Mr Hearty on 17 May and said that the council of governors is

“responsible for establishing the Nominations Committee”.

I said that it is very clear that the chair’s appointment is its responsibility and that

“the only reference to the Chief Executive occurs in the section on Attendance at the Nominations Committee…It does not give any licence to the Chief Executive to sit as a fully-fledged member…determining all the processes, shortlisting candidates”

and so on. I asked him therefore to think very carefully as to whether this process should be “paused and recalibrated” because I believed that there was a significant danger that the clear protocols in the governors’ manual had been breached.

Well, he did not do that. In fact, an email was then sent by Sue Crouch, the lead governor, saying that although the constitution clearly indicated that the chief executive should be a member of the nominations committee, given the feedback from governors, Wendy had graciously offered to withdraw in the best interest of the process. But, of course, by that time she had taken part in three quarters of the process, and whether it was a gracious withdrawal or otherwise, I have no knowledge. That was not a very good situation.

I had become concerned about the situation with the trust and had therefore written to NHS Improvement to ask the same sorts of questions on what its role should be. I initially got back a letter from the director for the north region, Lyn Simpson, who said that NHS Improvement is not involved in the recruitment of chairs of foundation trusts, which, of course, was not what I had asked her. She said that the trust had given its assurances that this recruitment process was in line with the constitution, as well as open, transparent and governor-led, but she did not give any grounds for that advice.

I went back to Lyn Simpson, reminding her that I had had guidance from the House of Commons Library that foundation trusts are accountable to Monitor, which is now part of NHS Improvement. I had looked at the code of governance published by Monitor, which specifically referred to the appointment of chair, so I asked her to respond more fully. She did respond again, but said that there was no legal basis on which NHS Improvement could intervene in the appointment of a foundation trust chair. I did not find that very acceptable, but I did note that she said that Dr Kirkup’s recent governance report, published in February 2018, had highlighted the role that NHS Improvement plays in board appointments as “not sufficiently clear.”

[Jim Shannon (Strangford) (DUP)]

Quite clearly, if procedure has not been followed, as the hon. Gentleman has outlined, surely at some stage he has to refer this case to the Local Government and Social Care Ombudsman. That must be a way of getting action given that this procedure has not been followed.

[Gordon Marsden]

It might be, but I am hoping that the Minister might be able to make some comments on these issues today, because NHS Improvement has to fulfil its duties under legislation, and I do not believe that it has done that very well.

I received another letter expressing pleasure that the trust had responded positively with the concerns on the point that I had raised, but that was really a question of shutting the door after the horse had bolted, for the reasons that I have explained. I then wrote again, asking for a response from Mr Hearty. I did not get that, but I did get a reply from Sue Crouch, who told me about the meeting to confirm the candidate who was going to be presented. That candidate turned out to be Mr Pearse Butler, who coincidentally had just stepped down as chair of the Morecambe Bay NHS Foundation Trust, to which the former chair of the Blackpool trust was about to go. I finally got to see the minutes of the process, and I was told that the discussion panels had worked well but that there had been a difference of opinion about the candidates.

I was also then told by a number of people that the proceedings at the confirmation were rather irregular. According to governors, not only did Michael Hearty ignore the request from three governors for a secret vote, but he said that abstentions would count as a yes vote, which struck me as a rather strange position. For obvious reasons, and because the trust has larded around a lot of “confidentials” and “highly confidentials” on various things, I am not going to name the governors who have spoken to me, although they are perfectly prepared to talk to people about it. I will just quote what one governor said:

“A few governors, including the Chief executive were involved in the recruitment process. The rest of the Governors were asked to attend presentations and panels as part of the recruitment process. I requested, on a number of occasions, the criteria and weighting for the presentations and the panels, including set questions. These were not sent. At the presentations, pieces of paper were presented on which we could make unstructured comments. These were supposed to be weighted, however there was no…criteria to do so…Candidate were questioned at each panel. No questions were pre set in advance…We were asked to choose a candidate based on the activities. There was disagreement from a number of people…about the preferred candidate for Chair…At the council of governors meeting called to ratify the appointment there was discussion about the process and the selection. A paper ballot was refused and a show of hands insisted on.”

I have a further comment from someone who will again remain nameless, but was a senior manager at Blackpool Vic and in other organisations in the past. He wrote to me to say that the council of governors had always been viewed as an inconvenient necessity rather than a valued part of the trust governance arrangement. I found that very disturbing and concerning.

One might have thought at that stage that the trust, and certainly the nominations committee, would have paused for thought, given all these criticisms from the governors, but we have had the same process for the appointment of a new non-executive director, not the clinical director. Again, there were two panels of candidates, who again included the chief executive, Wendy Swift. I understand that the chair-designate was present on this occasion as well. Let us call the two candidates X and Y. Panel 1 had preferred candidate X by four votes to two, and panel 2 had gone for the same candidate unanimously, but the nominations committee had recommended candidate Y. It is not surprising, therefore, that many trust governors have so far not gone back to ratify this appointment in any shape or form.

Those are some of the issues that have come out of this, and I want to make one or two observations in conclusion. The chair of any health trust is crucial, particularly in the difficult circumstances in which the Blackpool trust finds itself: still requiring improvement, according to the Care Quality Commission, and hit hard by the strains of morbidity and the impacts of transience and demography, which put extra pressure on. We therefore need the process for the appointment of a chair or non-executive director to be as transparent and reaching-out as possible, not a cosy old pals act reinforced by groupthink. That is what has sometimes come up through the bureaucracy.

I am forced to conclude that the nominations committee thought that it could get away with evading proper scrutiny and transparency—that a thin veneer of irritated politeness attempting to conceal a determined effort to override public governors unless they were rubber-stamped, and indeed delaying so as to block out others such as myself from discussing these things, would do the trick. Well, it does not do the trick, and it is frankly an insult to all the hard-working staff who have worked their socks off in the past few months in recent crises at Blackpool Victoria Hospital.

The use of the words “confidential” and “highly confidential” by the lead governor, Sue Crouch, could be seen as an attempt to intimidate or gag governors who had legitimate concerns about the process. I am very concerned about that. As I say, I have circulated this letter to all my neighbouring MPs. My hon. Friend the Member for Lancaster and Fleetwood (Cat Smith) is unable to be here today, but she asked specifically for me to indicate that she shares my concern about the governance of the hospital. I understand that the hon. Member for Fylde (Mark Menzies), who is also away from Parliament, has said that he has a number of issues with the governance.

I ask the Minister to reflect on whether we need some form of inquiry into the process that went on at the Blackpool trust. I can assure him that some of the governors who have shared the concerns that I have are prepared to give evidence on that. We need some clarity as to the role of NHS Improvement, because it is supposed to be a backstop to addressing both stakeholder and individual concerns, but in this instance it seemed all too ready to accept the version of events from the people who had convened all this and the way they wanted it to go.

The principle that governors should not feel pressured or fettered is very important. If the Government want to encourage democratic involvement in the NHS—a real people’s NHS in its 70th year—there is a lot more to do to support and enable people to secure those rights of representation. Members of Parliament who raise legitimate issues of transparency should be able to get proper answers.

I have no idea whether Mr Pearse Butler, who was announced as the new chair on 18 May, will be a good, bad or indifferent chair of the trust, but I am clear that the process by which he was appointed was deeply flawed and not transparent.

BAME Blood, Stem Cell and Organ Donation

Jim Shannon Excerpts

Wednesday 27th June 2018 Westminster Hall

[Mohammad Yasin]

My hon. Friend makes a very important point.

In November, Poonam’s fundraising efforts were recognised when she was awarded individual fundraiser of the year. I was so inspired by her story that I wanted to help raise awareness of the issue in BAME communities, because none of us know whether we or one of our loved ones might be a name on that list in need of a match, desperately waiting for a lifesaving opportunity. The reality is that many patients will not receive the stem cell transplant they need, because either there is no donor available or a donor cannot be found quickly enough. Only 20% of BAME patients receive the best possible match, compared with 69% of white, northern European patients.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter forward. I have always supported the issue of organ transplants, including for BAME people. With only six out of every 100 people who have signed up to the NHS organ donor register having told us that they are from black, Asian or minority ethnic communities, does the hon. Gentleman feel as I feel that when it comes to organ donation, every race is needed and we should urge the Minister to respond with a focused campaign for BAME donation? That is the best way forward and I think the Minister needs to do that.

[Mohammad Yasin]

I agree with the hon. Gentleman’s point. The disparity urgently needs to be addressed and I therefore welcome the very timely review by my hon. Friend the Member for Wolverhampton South West (Eleanor Smith) on BAME stem cell and organ donation.

The problem of insufficient blood, stem cell and organ donation is fundamentally one of supply and demand. According to the review, fewer than 5% of donors who gave blood in the past year were from BAME communities, although the BAME group makes up around 14% of the total UK population. Currently, only 1% of people who give blood in England are black. BAME people are unequally affected by that, as they are subject to a higher demand and shorter supply than other groups. The most common blood diseases that affect BAME communities are thalassaemia and sickle cell disease.

Phenylketonuria: Treatment and Support

Jim Shannon Excerpts

Tuesday 26th June 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairmanship, Mr Robertson. I congratulate the hon. Member for Blaydon (Liz Twist) on bringing this debate. I also congratulate the hon. Member for Chelmsford (Vicky Ford) on her work in the past and on bringing her Adjournment debate to the House, which I supported.

I am the Democratic Unionist party health spokesperson, so it is important to be heard on this issue, which grossly affects people in Northern Ireland, as well as in the Republic of Ireland. Not many people know this, as Michael Caine always says, but there is a higher per capita prevalence of PKU in Northern Ireland than in the rest of the UK. In fact, one in 4,000 people in Northern Ireland has this condition, compared to one in 12,000 in England.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Given the higher incidence in Northern Ireland, but also instances across the United Kingdom, does my hon. Friend agree that that it is imperative for the Minister, and all health Departments across the UK under the devolution settlement, to ensure that the best possible treatment and support is given to PKU sufferers and their families?

[Jim Shannon]

My hon. Friend is absolutely right. We always look to the Minister for support on these issues, and he is always very forthcoming, so we look to him again with that in mind. It is clear that this condition affects my constituents and those of everyone else who is speaking today.

PKU is usually diagnosed shortly after birth by the heel test. Many women can tell us that when the heel prick is done and they hear their child crying in the hands of the midwife, their automatic reaction is to reach out and grab the child. That test is so important at a very early stage. For those families who receive a diagnosis of PKU, however, the pain begins when they realise just what that means.

People with PKU have a faulty version of the enzyme that breaks down the amino acid phenylalanine, a component of protein. Untreated, it can cause brain damage when it builds up in the blood and brain. Untreated PKU causes profound and irreversible intellectual disability, seizures and behavioural problems. The damage is not reversible, so early diagnosis and early consistent treatment is vital. That is why, in 1969, we added this test to the routine blood test at birth. Some people here were not born then; I was just a young child.

The only treatment for PKU that is currently funded by the NHS is a very restrictive diet. I am a type 2 diabetic, so I understand a wee bit what it means to be careful with what I eat. I know that if I had a wee bit of honey with my toast this morning, I probably should not have done, but by and large I know what I have to do, and what I can and cannot eat. For those with PKU it is much more difficult, and the restriction is great. Most sources of protein are removed from the diet to prevent brain damage.

I want to give a few quotes from the parents of PKU sufferers, so that we can understand a bit better the life lived by those with this disorder. One parent said:

“The low protein prescription breads and pastas give her stomach ache—another reason she refuses to eat them.”

A parent whose daughter has PKU said:

“My daughter struggles with drink supplements as they all upset her tummy so she has to take 50 tablets per day.”

Another parent said:

“PKU causes arguments between us. My husband and I have suffered with stress, we argue about the management of her diet. I had hoped after 12 years things would get easier but this diet is met with anger, frustration, resistance and annoyance all aimed at me.”

The hon. Member for Dudley North (Ian Austin) already referred to the following case, but it is worth repeating simply because of its importance. One parent said that her daughter cannot normally eat, adding,

“she will ask to eat crumbs of normal bread off our plates or we catch her licking our plates.”

That is the impact PKU has on some children and their families. That is why parents throughout the UK are demanding that more be done. We look to the Minister to see if more can be done through his office. If there is something to help these people, we must make it available. We all know what must be made available: Kuvan. We all know what it can do. One young girl took a one-month trial of Kuvan and could eat a normal vegetarian diet. She had more energy, her mood lifted, her nightmares stopped and she could do ordinary activities at home and at school. What a difference it made to the child’s quality of life, and that of the entire family!

I have read that the cost of Kuvan is on average £14,535 for a child and £43,597 for an adult, based on list pricing. The pharmaceutical company BioMarin has publicly stated its willingness to offer substantial discounts in a deal with the NHS. I am asking the Minister, as other Members have done, to broker that deal, and enter into meaningful discussions on providing the medication, as the High Court ruling has said that we should. I urge the Minister to instruct his Department to find a way of making this available, rather than simply checking a box.

In conclusion, I ask that no parent be forced into this situation when there is something available to prevent it. I stand with the PKU sufferers of Strangford, Northern Ireland and the whole of the United Kingdom of Great Britain and Northern Ireland.

Childhood Obesity Strategy: Chapter 2

Jim Shannon Excerpts

Monday 25th June 2018 Commons Chamber

[Steve Brine]

Especially tennis, Mr Speaker. I know my hon. Friend is keen on social prescribing, as am I. I recently signed an accord between National Parks England and Public Health England to use the brilliant natural resource of our national parks. They are clearly part of the social prescribing mix that we increasingly see across our country, and I want to see more of it. She is right to raise that.

[Jim Shannon (Strangford) (DUP)]

I, too, thank the Minister for his statement. With 25% of children overweight in Northern Ireland, will he confirm how he intends to work cross-departmentally there in the absence of a working devolved Assembly? We need a strategy that works for all of the United Kingdom of Great Britain and Northern Ireland.

[Steve Brine]

Yes. Some of the measures in this strategy relate to reserved matters, such as the advertising proposals that I have spoken about. I have been speaking to my officials, who are already talking to officials in Stormont and will be helping them to develop their own plans. I know they have been very interested in what we are doing, and I hope they can copy and follow some of this locally.

ME: Treatment and Research

Jim Shannon Excerpts

Thursday 21st June 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on advancing a comprehensive and compassionate case on behalf of ME sufferers and I congratulate her on encapsulating the issues so well. Her constituents will be very proud of her; she can be assured of that.

As someone who has had the opportunity to speak on behalf of ME sufferers over the years, before I came here in 2010, one frustration of my former life as a councillor and as a Member of the Northern Ireland Assembly was that if I put “ME” on a disability living allowance form, as it was then, that I was filling in for a constituent, and went to the GP and said, “I need a wee letter to support this person who has ME”, they would say, “They have what?”, and I would have to explain. That is in the past now, thank goodness, and I can honestly say that in the past few years there has been a better understanding from GPs and doctors in my constituency. They have come round from not understanding ME to understanding it, so when someone needs a form to be filled in, it is filled in right; if they need a support letter, that happens too. That is very important.

It was my pleasure to support the hon. Member for Glasgow North West at the Backbench Business Committee, so I wanted to make a contribution today.

[Carol Monaghan]

I should have paid tribute to all hon. Members who supported my application for the debate, and who came along to make representations to the Backbench Business Committee, like the hon. Gentleman. I see several of them present, and I thank them.

[Jim Shannon]

We are always very pleased to support the hon. Lady’s proposals to the Backbench Business Committee.

This is an emotive issue. Many constituents have contacted me in anger, frustration and hurt as they simply feel that their illness is not understood and that successive Governments and some in the Department of Health and Social Care have shown no desire to gain an understanding—I say that respectfully, and I understand that some might say that healthcare is devolved. That is not the case for everyone, but it is certainly how many of my constituents have said that they feel.

We are fortunate to have a Minister who has a deep interest in this subject matter. He is in deep conversation with his Parliamentary Private Secretary, the hon. Member for South Suffolk (James Cartlidge), at the moment, but I am sure he will turn round shortly and be aware of my contribution. I am sure that he will respond constructively.

I want to thank MEAction, Action for ME, the ME Association, the ME Trust, Blue Ribbon for the Awareness of ME, the Centre for Welfare Reform, Forward-ME, ME Research UK, the Welsh Association of ME and CFS Support and Hope 4 ME Fibro NI in particular. All those organisations—there are lots of them—have furnished us with lots of information, and I thank them. I particularly thank one constituent, Sally Burch, who ensured that I had all the details and information to help me. She comes to see me regularly and fills me in on all the details.

ME is a chronic fluctuating neurological condition that causes symptoms that physically affect many bodily systems, commonly the nervous and immune systems, and affects an estimated 250,000 adults and children in the UK, as other hon. Members have said—it is not just an illness in adults. Approximately 7,000 people in Northern Ireland and about 17 million people worldwide have ME.

[Kate Green (Stretford and Urmston) (Lab)]

The hon. Gentleman is right to raise the issue of children with ME. It has an impact on their education because of the lack of access to consistently available home education where that is necessary. Does he agree that the Minister may want to take that up with his colleagues in the Department for Education?

--- Later in debate ---

[Jim Shannon]

I thank the hon. Lady for her intervention, which gives me a chance to say that I have constituents who have had to be home-schooled for the simple reason that they have ME. I am aware that the illness affects not just adults, but children, and I have seen the effect on their education as well.

Very few of the hospital-based ME services provide a domiciliary service for people who are unable to attend an out-patient department. There is now only one hospital service that has dedicated in-patient beds for the assessment and management of people who require hospital admission to a ward where staff have experience in dealing with the condition.

Specialist services for ME are scarce and under-resourced, as many hon. Members have said. I am ashamed to say that in Northern Ireland, my home nation, there are no services, which makes it all the worse. We have a non-functioning Assembly, as many hon. Members will know, which means that trying to initiate something is even more difficult now than in the past. The only way to get the attention and dedication that is needed to treat ME is to ensure that it is correctly classified, which has not happened so far.

The briefing I received provided so much information that it would be impossible to go into all the details in the short time that I have available, and I will not try to do that, but I will highlight the problem of the 2007 PACE trial that my constituents raised with me. In 2007, NICE recommended graded exercise therapy and cognitive behavioural therapy for patients with ME. That guideline was based on weak evidence from small trials, so the much larger PACE trial was designed as a definitive test of such therapies. It cost some £5 million and was funded mostly by the Medical Research Council, with, uniquely, some funding from the Department for Work and Pensions. PACE researchers reported that with cognitive behavioural therapy and graded exercise therapy approximately 60% of patients improved and 22% recovered. The treatments were claimed to be moderately effective and safe.

However, PACE’s claims ran counter to patients’ knowledge and lived experience. My constituents told me that that was not how it really was. That led some to examine the trial’s methods, and they found two considerable problems. First, the objective results were poor. After a year of therapy, the graded exercise therapy group’s increase in walking speed was less than half that achieved in three weeks by a sample of class II chronic heart failure patients receiving graded exercise. The trials were suspect before we even got the information.

Secondly, after the trial had finished, the PACE authors lowered the threshold they used as the definition of improvement—it was as if they had taken the figures and manipulated them to get what they wanted. That inflated the number of participants who were classed as recovered or improved. In some cases, even patients whose condition had deteriorated during the trial were classed as recovered. I believe in miracles—I know they happen—but that was not one of them, because people had not recovered.

After spending more than £200,000 fighting a freedom of information request, Queen Mary University of London, PACE’s data custodian, had to share access to the data. Subsequent re-analyses have shown that changes to the criteria for recovery and improvement distorted the results.

All that was highlighted to me during a constituency meeting with Sally Burch and other ME sufferers, including a wonderfully intelligent constituent of mine who had noted the questions that I had asked at Westminster and the letters that I had written to the Minister about the trial. She explained her day-to-day life. I knew her day-to-day life as a healthy person, so now that she was not, I could clearly see the difference. She said that her treatment and care are not acceptable.

Hope 4 ME Fibro NI, of which many of my constituents are members, underlined its opinion on the need for ME inclusion in the medical curriculum after the charity hosted an ME educational event on 24 May at Queen’s University Belfast, which nearly 400 medical students attended, as did many lecturers. They all have the same interest in ME: how we go forward, what the PACE trial did and whether it helps us. If it does not help us, let us highlight that. The results of the charity’s questionnaire are revealing and clearly demonstrate the desperate need for ME to be included in the medical curriculum. Other hon. Members have spoken and will speak about the need for research. We are looking for many answers, as always, but if there was one particular issue that we were looking for help with, it would be the research. Perhaps the Minister will give us the encouragement that we need in his response.

ME is a serious illness, which seriously affects so many in our communities. These people are not lazy and they must not be made to feel like that. To say to an ME sufferer, “Get up and have a walk. You will be fine,” is tantamount to saying to someone with a bullet in his leg, “Stick a plaster on it, ignore the blood flowing down and soldier on.” We must send the message that that does not work and is not helpful. We in this place must ensure that diagnosis and care are appropriate, which is not the current situation, so I fully support the calls of the hon. Member for Glasgow North West.

On behalf of my constituents, and all constituents across the United Kingdom of Great Britain and Northern Ireland, I am asking not simply for words of understanding from the Minister, but for action to be taken to change the “Get up and get on with it” mentality to an “I will help you to get up and get on with it, and find a way to facilitate an easier way of living your life” mentality.

In this debate, we want to highlight ME and show what the problems are. We look to the Minister for action; we need his help to make it happen. We need something practical that can and will help, and that will give encouragement to our constituents and to all ME sufferers across this great nation of the United Kingdom of Great Britain and Northern Ireland.