Stroke Services

Jim Shannon Excerpts

Tuesday 5th December 2017 Commons Chamber

[Sir David Amess]

I very much welcome that news. I think that the two of us will look forward to meeting the Stroke Association and working with it to enhance the already excellent facilities at Southend Hospital.

The costs of stroke to the NHS and social care are about £1.7 billion a year, which is a huge amount. If I may be biased for a moment, let me say to the Minister that since 2013, the Government whom I support have contributed to significant advances in the treatment of stroke victims all over the country. The percentage of patients scanned within one hour of arrival in hospital has risen from 42% in 2013 to 51% last year, and the figure for those scanned within 12 hours has increased from 85% to 94%. I think the whole House will welcome that improvement, and I am grateful to Members on both sides of the House who are in the Chamber to listen to this Adjournment debate. I hope that their constituents will recognise the fact that they have stayed here.

[Jim Shannon (Strangford) (DUP)]

I sought the hon. Gentleman’s permission to intervene before this debate, Madam Deputy Speaker.

Right across the UK there are many problems in relation to stroke services. Some 4,000 people in Northern Ireland have had a stroke in the past year, and 36,000 people in Northern Ireland are living with the effects of a stroke. What consideration has the hon. Gentleman given to people having a normal life after stroke through the provision of rehabilitation, and of occupational and cognitive therapies, and through the way in which the NHS handles aftercare, especially for the growing number of younger people who have strokes? This is not just about people in their 70s; it is sometimes about those in their 30s, 40s and 50s.

[Sir David Amess]

If I did not know better, I would have assumed that the hon. Gentleman had read my speech, because I was just about to say that in the past three years there has been a rise in compliance with standards for physiotherapy from 53% to 79%, and from 24% to 47% for speech and language therapy. I know that similar progress has been made in Scotland. With all that in mind, it is essential that the NHS continues to lead from the front. We must utilise some of the newest technologies to improve the effectiveness of stroke treatment, to allow patients to live fuller lives, and to decrease the burden of ill health after someone has suffered a stroke.

Two out of three stroke survivors currently leave hospital with a long-term disability at a cost of £1.7 billion, as I said. The provision of healthcare to people who have had a stroke accounts for approximately 3% to 5% of all healthcare expenditure, which is a vast amount. The cost of stroke treatment will rise to £43 billion in 2025 and £75 billion in 2035. If I remember rightly, I think the husband of the hon. Member for North Down (Lady Hermon) suffered strokes during his illness.

--- Later in debate ---

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

What a pleasure it is to see you, Madam Deputy Speaker; it has been a while. I knew that my hon. Friend the Member for Southend West (Sir David Amess) would get in a mention of Southend becoming a city. I was only disappointed that it did not happen earlier in his speech, but he managed it in the very last line. I will show great diplomacy and leave that matter to the Ministers responsible. I congratulate him on securing another Adjournment debate—we have done this before—which is on stroke services this time. As ever, he set out his case brilliantly and with such passion. He gives newer parliamentarians a real lesson in how to handle debates in this House.

As my hon. Friend said and as so many of us know, stroke is a devastating disease for patients and their families. He is right that there are currently 1.2 million stroke survivors in the UK, with more than 1,350 in my hon. Friend’s constituency alone. The hon. Member for Strangford (Jim Shannon), who is in his place as always at these debates, is absolutely right that stroke is predominantly a condition that affects older people. But it does affect younger people. I have met people of my age and younger who have been affected by stroke. Obviously, it is clinically debilitating, but it also comes as a great shock to their friends and families, who are taken aback by this happening to young people.

So many NHS staff work in multidisciplinary teams on stroke, and I pay tribute to them. There are nurses, consultants and speech and language therapists—the speechies, one of whom I am married to, so I will get brownie points for this—as well as physios, occupational therapists and specialist nurses, who all do so much when somebody suffers a stroke. The Stroke Association, which has already been mentioned, is an absolutely first-rate charity and a real partner for the Government. I also commend my hon. Friend the Member for Southend West for his strong work in driving improvements to stroke services both nationally and within his constituency. I know that he has taken a long interest in health matters, including stroke, as an MP. I reiterate his comments about the high-quality service provided by Southend stroke unit—more on that in a moment.

My hon. Friend will no doubt agree—he said this of course—that, in general, stroke services across the country are performing really well. Let me just reiterate some of the figures. Thirty-day mortality has dropped from 30% in 1998 to just over 13% in 2015-16—a huge improvement. The percentage of patients scanned within one hour of arriving at hospital, which is so critical, has increased from 42% in 2013-14 to over 51% in just three years, and the percentage scanned within 12 hours has increased from 85% to 94% in the same period.

There are many public health campaigns that we remember throughout the years, but the Act FAST campaign that public health campaigners and the Stroke Association have done is something we see and do not forget, and that, of course, was the intention.

Excellent progress has been made in the treatment of stroke over recent years. It is important that this programme continues and that the gains are built on, especially given the demographic changes we know are coming down the track with our much talked off and much publicised obesity challenge and our ageing population. That is why we published the cardiovascular disease outcomes strategy in 2013.

There is ongoing work in virtually all parts of the country to organise acute stroke care to ensure that all stroke patients have access to high-quality specialist care, regardless of where they live or what time of day or week they have their event. Although the national stroke strategy comes to an end shortly, as my hon. Friend said, NHS England continues to lead an effective programme of work on prevention and treatment. We are continuing to work closely together to improve acute treatment through the centralisation of care in centres that can provide the highest level of care and treatment at all times of the day and night.

Decisions on whether the strategy should be renewed are, of course, a matter for NHS England, but in liaison with Ministers. My understanding is that NHS England does not have current plans to renew it in the same form, but it is a subject that I, as the relatively new Minister, encouraged, of course, by my hon. Friend’s debate, plan to discuss with NHS England early in the new year. I would welcome my hon. Friend’s involvement —and that of other Members—if he wishes to feed into that.

[Jim Shannon]

I thank the Minister for his comprehensive response. One thing that is sometimes overlooked is research and development—the work that is done by universities in conjunction with health groups to try to find better ways of caring for people with strokes. Does he have any information on how critical that is to the whole care package that is given to those who have had strokes?

[Steve Brine]

I echo the hon. Gentleman’s sentiment that that work is critical. I mentioned the Act FAST campaign, which was a heavily evidenced public health campaign showing that the quicker we act after the event, the better the outcome, so he is absolutely right to highlight that issue. However, I am conscious of time, so I am going to press on.

My hon. Friend rightly spoke about mechanical thrombectomy, which he called a game-changer, and he is absolutely right. To continue and build on our stroke service success and to address the costs associated with stroke in England, which was one of my hon. Friend’s first asks, it is imperative that we keep identifying and developing innovative treatments and cutting-edge procedures.

In mechanical thrombectomy, or MT as we shall know it, we have an innovation that we believe can significantly improve patient outcomes, and my hon. Friend spoke about that. In April this year, NHS England announced that it will commission mechanical thrombectomy so that it can become more widely available for patients who have certain types of acute ischaemic stroke, which is a severe form of the condition. My understanding is that work by NHS England is now under way to assess the readiness of 24 neuroscience centres across the country. It is expected that the treatment will start to be phased in later this year and early next year, with an estimated 1,000 patients set to benefit across the first year of introduction. Overall, this will benefit an estimated 8,000 stroke patients a year and save millions of pounds in long-term health and social care costs—my hon. Friend was absolutely right to point out the rising costs to NHS England around this condition.

As the clinical director for stroke at NHS England has said, we are committed to fast-tracking new and effective treatments that will deliver long-term benefits for patients. For me, this treatment is just one example of many that we believe have the potential to tangibly improve patient care and to address rising costs.

Maternity Safety Strategy

Jim Shannon Excerpts

Tuesday 28th November 2017 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

I thank the Secretary of State for his statement and personal commitment. It is much appreciated. Will he confirm that part of the safety strategy includes ensuring that midwives on labour wards can take their breaks and rest periods and that midwife staffing levels on labour wards and post-section wards are checked, monitored and increased?

[Mr Hunt]

I agree that that is extremely important. I also extend through the hon. Gentleman a similar offer to the one I made to the hon. Member for Central Ayrshire (Dr Whitford), who speaks for the SNP: I am happy to pursue any collaboration possible between the Northern Irish and English healthcare systems to share best practice.

NHS Continuing Care

Jim Shannon Excerpts

Monday 27th November 2017 Commons Chamber

[Norman Lamb]

The hon. Lady might well be right. That does not justify the variations, but it is a possible explanation for part of the problem.

Secondly, the number of people nationally who are found to be eligible is falling. The National Audit Office found that the proportion of people assessed as eligible for standard continuing healthcare by CCGs reduced from 34% in 2011-12 to 29% in 2015-16.

[Jim Shannon (Strangford) (DUP)]

Does the right hon. Gentleman agree that home care packages must be better funded so that people can live independently at home, while still being cleaned and cared for, but that that is extremely difficult due to the finance available?

Drug Addiction

Jim Shannon Excerpts

Wednesday 22nd November 2017 Westminster Hall

[Crispin Blunt (Reigate) (Con)]

It is a pleasure to serve under your chairmanship, Mr Gapes. It is long overdue. It is also a pleasure to follow the right hon. Member for North Norfolk (Norman Lamb). I congratulate him on his speech. I agree with his analysis entirely. I also congratulate my hon. Friend the Member for South Thanet (Craig Mackinlay) on raising this issue. He is right to point out the dramatic risk of fentanyl-associated harm that is perhaps coming our way following what is happening in the United States.

Any examination of the global evidence shows that the costs my hon. Friend pointed to, financial and human, are infinitely higher than they should be owing to the global policy of prohibition and criminalisation of drugs since the 1961 UN single convention on narcotic drugs, which has been an unmitigated global public policy disaster. He rightly drew attention to the dangers of drug-driving and his concern at the increasing number of road deaths caused by drug-driving, as in the United States. That will require strong enforcement action to catch, warn and punish offenders, in the same way as drink-driving here in the UK has met with effective policing and societal attitude changes.

[Jim Shannon (Strangford) (DUP)]

Will the hon. Gentleman give way?

[Crispin Blunt]

Forgive me; I am short of time.

I come to this debate from the criminal justice perspective, having seen for myself as Minister for Prisons and Criminal Justice the time and costs incurred by the police, courts, prisons and probation service in managing the effects of drug-related crime. My hon. Friend the Member for South Thanet also drew attention to the problems of cannabis, particularly street cannabis, which, with its high levels of tetrahydrocannabinol, or THC, is more potent and liable to cause schizophrenia in long-term users.

However, those looking to use cannabis recreationally often have little to choose from and have no idea what their cannabis, acquired on the street from drug dealers, has in it. Legalisation and regulation would allow consumers to access less harmful forms of cannabis with lower levels of THC and higher levels of cannabidiol, or CBD, giving the desired high, in just the same way as drug users of tobacco and alcohol can be assured of the regulated quality and provenance of their products, together with the health warnings and all the necessary restrictions on advertising and sales that a properly regulated market can deliver.

Licensing and regulation proportionate to the risks of each type of drug and signposting users to services when they get into trouble would be the right place for public policy if we followed the evidence of what works. At a stroke it would deliver the massive good of eliminating the huge costs associated with criminal possession and supply. By permitting a legal but regulated market, we would decouple hundreds of millions of consumers around the world—millions in the UK alone—from funding and facilitating a world of criminality.

Just as prohibition in 1920s America provided a financial basis for organised crime to flourish in American cities, so our policy of prohibition has gifted an industry worth half a trillion dollars a year to serious and organised criminals producing and supplying untested substances. Their interest is hardly the health of their consumers, but far more to produce the addiction that will sustain a vastly lucrative business model.

Alongside the addiction, we then have to deal with the awful consequences of drug market violence as gangs and dealers vie for control of the trade, quite apart from the enormous amount of the lower-level criminality of burglary and other acquisitive crimes as addicts seek to fund their addiction. As well as keeping criminals, many of them young people, out of drug supply, licensing and regulation allows us to tackle the health-related harms associated with drugs and drug addiction that my hon. Friend was right to draw attention to. Criminalisation means that users are hidden from health practitioners, and there is a lack of guidance about how to find and access services. Taxation of sales by licensed retailers would pay for better prevention, treatment and public health education, available at the point of purchase—a dispensing pharmacist, for instance.

Colorado has raised half a billion dollars in state taxes and fees since it licensed recreational cannabis in 2014. The right hon. Member for North Norfolk referred to the the Home Office evaluation of its own drug strategy, which states:

“There is, in general, a lack of robust evidence as to whether capture and punishment serves as a deterrent for drug use”.

If we translate that out of bureaucratese, that means we know current policy does not work. Since we have been fighting the war on drugs for more than half a century, it might now be an idea to examine the evidence. So I say to my hon. Friend the Member for South Thanet, instead of doubling down on a failing policy and demanding yet more higher sentences for particular parts of the supply chain—in the example he gave, the failing policy has led to the highest level of opioid drug deaths since records began—we should learn from decriminalisation and public health approaches in other countries.

In Portugal, for example, where the possession of small amounts of drugs has been decriminalised since 2001, a step well short of licensing and regulation, usage rates are among the lowest in Europe, and drug-related pathologies, such as blood-borne viruses and deaths due to misuse, have decreased dramatically. Compare the drug mortality rate of 5.8 per million in Portugal with Scotland, where it is 247 per million. The Portuguese state offers treatment programmes without dragging users through the criminal justice system, where it becomes harder to manage addiction and abuse. I can tell my hon. Friend, drawing on knowledge of the effort to establish drug-free wings in prisons, that it is not easy to do. I accept that it is a perfectly sound policy objective, but do not think for a minute that there is a magic wand to deliver a part of the prison system that will be proof against drugs getting in.

In the criminal justice system, as I can testify from my own experience, it is hard to manage addiction and abuse. The reshaping of our drugs policies should be informed by the growing body of evidence that will come in from the legalisation of cannabis sales in several US states and, from next July, in Canada. We will be able to learn, too, from the Netherlands, Switzerland, Germany and others with drug consumption rooms, an example of the kind of regulation we could deliver around heroin consumption in supervised, safer environments where, as the right hon. Member for North Norfolk said, no one has ever died of an overdose. So we must listen to the Global Commission on Drug Policy, which seeks a balanced, evidence-based approach. The UK could have a royal commission to make evidence-based policy recommendations free of politicians’ trite response, “Drugs are bad; they must be banned.” That can give us a route to reframing the debate on drugs and finding evidence-based policy approaches that will truly reduce the costs of addiction, both financial and human.

--- Later in debate ---

[David Linden]

Very deliberately, because this debate is about the human and financial cost of drug addiction, I do not want to make a party political point. I could be tempted down the line of saying that if we followed the Conservative’s tax plans, that would mean £160 million less for public services in Scotland, but I shall not go down that path.

Before I move on to the human cost of drug addiction, let me sum up some of the contributions to the debate. There has been a lot of discussion and a lot of figures have been bandied about, but I want to talk about a couple of personal cases.

[Jim Shannon]

I congratulate all those who have spoken on this issue. In Northern Ireland, more people have died from drug addiction than from road traffic accidents, but perhaps there is a way of addressing that issue. Does the hon. Gentleman agree that there must be more links between GPs, so that they can refer people whenever they are aware there is a problem and tackle addiction more successfully? There are methods to do that within the system.

[David Linden]

I am grateful to the hon. Gentleman, and I shall come on to the point about support services that are provided in our communities.

The hon. Member for South Thanet mentioned the Frank project, and I was conscious that he was looking over at me and probably trying to work out whether I am here on work experience, or whether I am actually an MP. I am both young enough and old enough to remember “Talk to Frank”, and it is disappointing that we do not see as much of that anymore—I remember that when I was growing up we would see it on a regular basis. The right hon. Member for North Norfolk (Norman Lamb) spoke with huge experience and knowledge on this issue. He was a Health Minister in the coalition Government, and we should spend a lot of time listening to him. I am not sure that I agreed with everything he said, but he is worthy of listening to.

The right hon. Gentleman mentioned safe injecting facilities and heroin-assisted treatment. Prior to becoming a Member of the House last June, I worked for my hon. Friend the Member for Glasgow Central (Alison Thewliss), and there was a proposal to install the UK’s first safe injecting facility in Glasgow. I am disappointed that the Lord Advocate in Scotland has said that he is currently not minded to give that legal cover, and to go down that route we will probably need Home Office Ministers to look at the Misuse of Drugs Act 1971. In Glasgow we are pushing ahead with the heroin-assisted treatment model, which should be welcomed.

The hon. Member for Reigate (Crispin Blunt) spoke about the importance of following the evidence, which I endorse. Before I was an MP, I had the privilege of going to Dublin and visiting the Ana Liffey project, which is moving towards a safe injecting facility. The key message that we took from there was that we should very much follow the evidence. I commend NHS Greater Glasgow and Clyde, which throughout the entire process has built an evidence-based case, and that point is well made. My hon. Friend the Member for Inverclyde had a short amount of time in which to speak. I am conscious that he speaks with a huge amount of passion on this issue, and I hope that he continues to do that in this House. I commend the work done by him and the right hon. Member for North Norfolk this week.

I see my role as an MP as being to speak up for constituents in the east end, and to give ordinary Glaswegians a voice in Parliament. Last week, Michelle Kearney, who is originally from Carmyle in my constituency, spoke bravely in the Evening Times about the death of her daughter, Michelle, who tragically died aged just 16 on 19 October 1999. I am very grateful to Michelle’s mum, who took some time yesterday to speak with me about her own story, which is incredibly moving and deserves to be heard in this House.

The details of numerous failings by the Children’s Panel and social workers is a pain that Michelle still carries to this day. These are her words, and I very much hope that I can do her justice:

“My pain is the same pain as any other mother who has lost a child. Why should my pain be minimised because my daughter made a choice to take drugs that night? That’s a big hurdle for the families…I just had a feeling. I knew she wouldn’t be an adult. I had a sense. She said, ‘mum I’m never going to be a big lady. I’ll never be happy in this world but I know that I will in the next’…I could feel her dying every day. I buried her in my head for four years…She became a prostitute, not to fund anything but because that’s all she thought she was good for. She had met a girl that night and went back to a flat. I believe she was injected by the girl because she was injected into her right arm and she was right handed. It took 12 hours for her to die and she died with strangers…The police came to my door to tell me that she had been found dead. She had only tried drugs twice to my mind. It was just her time to go and came as no surprise, I just didn’t expect it to be drugs…She was the first child to die in those circumstances so her death was very public. There was no justice. It devastated our family.”

Michelle’s courage in talking publicly about her daughter’s death is, in itself, remarkable, but the fact that she has now chosen to dedicate her life to helping others as a counsellor for the Family Addiction Support Service says a lot about her selflessness. I pay tribute to that service in Glasgow. It does tremendous work with families, and throughout this debate we must be mindful of the families of those affected by addiction. I hope that by being able to give Michelle a voice in Parliament today I have managed to do her justice, but it was just by chance that I read her story in Saturday’s Evening Times. By that point I had already informed the Whips Office, and the Chair, that I intended to speak in this debate, based on my own upbringing.

I have spoken before in this House about being brought up in the Cranhill area of Glasgow’s east end—something of which I am fiercely proud. My first involvement in any form of political activism was not delivering leaflets for the SNP; it was going on a Mothers Against Drugs march with my mum on our housing estate. On 3 January 1998, another young Cranhill boy, Allan Harper—just a few years older than me—tragically died of an overdose. Even as a seven-year-old, I still vividly remember walking along Bellrock Street, past the maisonette flats, for the candlelit vigil for Allan. We did that march, with the mammies and the weans in Cranhill, to send a strong powerful message to the drug dealers on our estate that we would no longer tolerate them pushing drugs in our community. Twenty years ago on that march, never in my wildest dreams did I imagine that 20 years later I would be standing here as the MP for Cranhill. It is something of which I am incredibly proud.

As we reflect on the current battle that we have with drugs in our communities and families, I very much hope that in 20 years’ time, the next MP for Cranhill will not be standing here talking about a death rate from drugs of 867. The time for talk is over; the time for action is now, and that is a message for all Governments.

Medicines Regulation

Jim Shannon Excerpts

Tuesday 21st November 2017 Westminster Hall

[Helen Goodman]

In one sentence, my hon. Friend gets to the nub of the issue; I will probably take 20 minutes to reach it. He is absolutely right. The problem is that the Government did not make a plan, and as yet have not resolved how they will regulate medicines from 1 April 2019. I have been asking about that for a year. We have had no clear explanation, no policy statement, and no impact assessment. The Government refused to debate the matter in the course of the legislation for triggering article 50. We have not been able to debate it properly as part of the scrutiny of the European Union (Withdrawal) Bill, which is in Committee today, in parallel with our debate.

We are therefore extremely interested to hear what the Minister will say, especially as two months ago there were leaks from the Department of Health that the Secretary of State was flirting with the idea that we should leave the EMA and join the American Food and Drug Administration. I was particularly surprised that that was being floated, because the Association of the British Pharmaceutical Industry has said consistently that it thinks that we should be aligned with EMA standards. Alignment with Europe on regulation of medicine does not simply mean having the same rules on exit day; it means having a mutual recognition agreement with the EMA, and continued alignment of future regulations as they change, which they inevitably will.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on what she is saying. Obviously, as a Brexiteer, I probably have a very different opinion about what will happen on 31 March, but that is by the bye. Does she agree that it is imperative that the phenomenal work done by the Medicines and Healthcare Products Regulatory Agency and the EMA, which she referred to, can continue? Ensuring that we are able to supply safe and effective medication not simply to the UK but to all nations worldwide must be high on the priority list of the Brexit team. That is something that she and I very much agree on.

[Helen Goodman]

The hon. Gentleman truly is a gentleman, and I agree with him entirely. We want to see continued UK participation in EU regulatory and medicine safety processes as well. The ABPI has also said, reasonably enough, that it wants to maintain trading terms equivalent to being a full member of the customs union, and to have a common system for VAT.

In May, the EMA and the European Commission issued a statement saying that if the United Kingdom does not stay in the single market, stick with the EMA, or join the EEA—the European economic area—but goes for a clean break, drugs made in the United Kingdom will no longer be authorised for use in the European Union, and drugs made in the European Union will no longer be authorised for use in the UK. Tackling that would involve costly and time-consuming checks. It could even mean that the availability of drugs would diminish dramatically.

What response have the Government made to that statement? What practical steps have Ministers taken? All we have seen is a letter from the Secretary of State for Health and the Secretary of State for Business, Energy and Industrial Strategy to a newspaper, which said that they want a “close working relationship” with the EU, and that patient safety matters, as does certainty, long-term stability, and innovation. The letter said that Ministers will set up a regulatory system with competitive fee pricing. This afternoon, we would like the Minister to explain that.

Currently, the UK Medicines and Healthcare Products Regulatory Agency—MHRA—contributes to the EMA’s work, and the UK pays approximately a fifth of the overall costs. It is universally acknowledged that the MHRA could not take on the task of licensing all drugs without astronomical costs for the industry and the taxpayer.

Hormone Pregnancy Tests

Jim Shannon Excerpts

Thursday 16th November 2017 Commons Chamber

[Steve Brine]

All I said is that there were checks to be made to ensure that the report was as readable and as accessible as possible. We are confident in the report, and we are not going to sweep it away and forget about it and move on to the next story; we will implement the recommendations.

[Jim Shannon (Strangford) (DUP)]

Will the Minister outline what support is on offer to those who took Primodos and were traumatised by stillbirth when it was not possible to carry out genetic testing because the baby had died and the remains were gone? We understand the Minister’s compassion, but where is the redress for the still-grieving parents? Where is their support? Where is their help?

[Steve Brine]

I repeat that we cannot turn the clock back. The conclusions of any review, no matter how it is done, cannot take away from the suffering of families and constituents. I repeat that the review of the evidence by the expert working group was comprehensive, independent and scientific. We are confident in the report and in the review process, and we will now get on with implementing the recommendations.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 14th November 2017 Commons Chamber

[Mr Hunt]

I congratulate my hon. Friend on the close interest that he takes in his local community hospital, which matters so much not just to his constituents but to the NHS, because many people are discharged to it from busy district general hospitals. As he says, there has been a shortage of nurses. That is why we have decided to increase the number of training places by 25%, which is the biggest increase in the history of the NHS.

[Jim Shannon (Strangford) (DUP)]

Would the Secretary of State consider introducing a bursary-type scheme whereby young doctors’ student debt would be wiped out after they had spent five years in general practice in areas with a shortage of doctors?

[Mr Hunt]

We have introduced something similar. In areas where it has been difficult to recruit GP trainees for three years or more, we have provided a £20,000 salary supplement to attract people to those areas. It has been very successful, and we have extended it to 200 places this year.

Diffuse Intrinsic Pontine Glioma

Jim Shannon Excerpts

Tuesday 14th November 2017 Commons Chamber

[Ian Murray (Edinburgh South) (Lab)]

I thank Mr Speaker for granting me this important Adjournment debate on diffuse intrinsic pontine glioma, a rare form of childhood brain tumour.

I applied for this debate to raise awareness of DIPG, to highlight the need for more research and development, to try to get better treatments and to bring to this Parliament the heroic story of seven-year-old Luke Stewart, his mum, Jennifer Ure Stewart, his dad, Mark and his grandfather, Robert Ure. DIPG is an aggressive form of tumour on the brain stem. Fewer than 40 children a year in the UK develop them, but they account for 10% to 15% of all brain tumours in children. In October 2017, it has been reported officially that 38 children died of DIPG, and there is no cure.

Although rare, DIPG is actually the second most common type of primary, high-grade brain tumour in children. It originates in the area of the brain stem called the pons, the area of the brain that is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure. Not all cases of DIPG are identical, and it can affect each child differently, including through pressure on the cranial nerve, long tract or cerebellum. Childhood brain tumours are classified according to the type of cells—whether they are diffuse or focal—and the grade of aggressiveness. These particular tumours are high-grade, aggressive and relentless, growing extremely quickly, often spreading throughout the brain stem and into the spinal cord. Sadly, this means that they are very dangerous, difficult to treat and have a poor prognosis. Although it is not yet known what causes DIPG tumours, there is currently ongoing research aimed at discovering their genetic causes, which could help early detection and the development of future treatments.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on bringing this important issue to the House at such a late hour. DIPG is one of those diseases for which there is no treatment, no cure and no survival rate, but if we are to find a way forward, we need research and development. I hope that the Minister will respond positively to the hon. Gentleman’s request. Does he feel now is the time for that research and development to take place?

[Ian Murray]

I thank the hon. Gentleman for his intervention. I shall come on to the subject of research and development. I have been in the House for seven years, and I live in hope of receiving a positive response from the Treasury Bench. Perhaps tonight we will get that far; indeed, I am sure that we will.

I welcome the research that is being done, but the current lack of sufficient research, available information, awareness of the condition and effective treatments can make DIPG all the more distressing for those diagnosed with it, as well as their extended families.

When it comes to treating the tumours, patients are usually offered courses of radiotherapy over three to six weeks. Because of the dangers of operating on such a critical area of the brain, surgery for some is simply not an option. In the UK, various studies show that chemotherapy is ineffective in treating childhood DIPG, although it is used in innovative ways in other countries, such as Mexico. I shall say more about that shortly.

Because the treatment options are extremely limited, the prognosis for children diagnosed with DIPG is poor. Although each child’s condition is unique, 70% of children with DIPG are not likely to survive for more than a year after diagnosis, and 90% do not survive for two years. The lack of knowledge of the condition means that children and their families are living from day to day. Greater investment in research on the condition might bring us one step closer to finding out more about the specific genes and molecules involved in DIPG tumour formation. That vital research could go on to create innovative new treatments, meaning that 40 more children each year—those who are struck down by the disease—could go on to become the doctors, scientists and even politicians of the future. It is important that we give those children the opportunities that they deserve, and give their families the hope that they need.

The famous astronaut Neil Armstrong’s daughter Karen died of DIPG 40 years ago at the age of just two, yet to date there have been very few advances in the treatment offered, which is devastating for parents. One such story is that of Luke Stewart. Luke is a seven-year-old boy who is happy, healthy, active, kind and caring. He comes from a loving family—mum, dad and two little brothers: Lewis, who is five, and Lochlin, who is just one. In January this year, their world was blown apart when Luke was diagnosed with DIPG. Doctors advised Luke’s mum and dad that he could survive for six to nine months if he received radiation treatment, the only option offered by the NHS in the UK. I cannot imagine what that kind of news does to a parent.

The family were informed that radiation treatment would prolong Luke’s life by only a few months, and that, although it would make him more comfortable, he would not survive. They were advised by the NHS that there were no other treatments available worldwide, or any clinical trials, that could help their son, and that on completion of the radiation treatment he would receive only palliative care. They were broken by that news, but they knew that they had to keep fighting for Luke, so they began to search for hope elsewhere. That was the start of their incredible journey to Mexico to save their son’s life. The journey to Monterrey began when, during a visit to the Chelsea football club training ground, they met a family from London whose daughter had the same condition. They had known of each other from Facebook conversations, but were totally unaware that both families would be at the venue at the same time. The London family were leaving for Mexico within days so that their daughter could receive a new, ground-breaking treatment.

That gave the Stewart family renewed hope. They researched the entire programme, which is called intra-arterial chemotherapy. Catheters are placed in the basilar and femolar arteries, and systematically deliver drugs approved by the Food and Drug Administration into the brain stem. The treatment has also been combined with intrinsic and T-cell immunotherapy. The Stewart family left for Mexico at the beginning of May, when they witnessed Luke’s condition deteriorating rapidly. This was the only hope that they had to offer him at that time: it was their last hope. Not only were they in emotional turmoil, having to deal with such a devastating situation, but they had to fundraise continually to secure money for the treatment.

Abortion Act 1967: 50th Anniversary

Jim Shannon Excerpts

Monday 6th November 2017 Commons Chamber

[Diana Johnson]

My hon. Friend makes an important point, although the House did give my ten-minute rule Bill to decriminalise abortion its First Reading. It will be interesting to see the result if it is debated again in the new Parliament.

[Jim Shannon (Strangford) (DUP)]

I am very impressed by the hon. Lady, as she knows because I spoke to her before the debate to ask to intervene. She knows my opinion on these matters. I understand that she is going to bring some things forward, which would be a help, but at the same time we are meant to believe that abortion is somehow an expression of women’s rights, but, on the contrary, some of us believe that it is so often the means by which vulnerable young women are themselves destroyed by the sorrow it can naturally engender. Even when abortion itself does not cause the destruction of women, their mistreatment by the industry that provides abortion daily in this country clearly can.

--- Later in debate ---

[Jackie Doyle-Price]

I understand that the hon. Lady feels strongly about this issue, and nobody can doubt her passion and commitment to women’s welfare. My understanding of the grant she referred to is that it went strictly towards the support of women who chose to go through with the birth. I am happy to look at that further. I am not entirely sure it was the largest donation, but I am happy to look into that. However, the hon. Lady is right when she says there should be genuine choice. We do not want anyone to feel that they cannot have an abortion, any more than we want them to feel that they have to have one. We really want women to be able to make informed choices and to feel empowered to have the child, if that is what they would like to do. The important thing is that we empower women. That is the whole purpose of what we are trying to do here—to empower women and allow them to make choices that are safe for them.

Since the Act was passed, there have been regular calls from all sides of the debate for changes to the legislation, and the hon. Member for Kingston upon Hull North has outlined her views clearly today. As she said, this Government and previous ones have always viewed legislative change as a matter for the House to take a view on, and there are no plans to change that.

The Act was last amended in 1991 by the Human Fertilisation and Embryology Act 1990. This reduced the time limit for most abortions from 28 weeks to 24 weeks. No time limit applies where there is a substantial risk that the child will suffer from a serious handicap or that the pregnancy would cause grave permanent injury to the physical or mental health of the mother or put her life at risk. So amendments are possible, and it is ultimately Parliament that decides the circumstances under which abortion can be legally undertaken. The Government will always ensure that regulation works to make that as safe as possible.

The hon. Lady outlined clearly her belief that abortion should be decriminalised, and the Government will no doubt take a view as and when she brings forward her Bill, as indeed will the rest of the House. It is true that any abortions conducted outside the grounds in the 1967 Act currently remain a criminal offence, and there is no intention for that issue to be dealt with by anything other than a free vote.

Turning to the impact of the Act in practice, it is important that we remember that, in the years before the Act, abortion was, indeed, the leading cause of maternal mortality in England and Wales. For example, the first confidential inquiry into maternal deaths in 1952, reported 153 deaths from abortion alone. The most recent confidential inquiry report found there were 81 reported deaths in 2012-14 for all direct causes of maternal mortality, such as obstetric complications, interventions and omissions. So since the Act came into force, women in Great Britain have had access to legal and safe abortion services.

[Jim Shannon]

Does that figure include those who committed suicide as a result of having an abortion and the effect it had on them?

[Jackie Doyle-Price]

The figures include those who have died as a result of maternal complications. I am not aware of any figures that detail suicide. However, we need to look at the whole issue of counselling for women who are facing any kind of unwanted pregnancy.

In 2016, 98% of abortions were funded by the NHS, whereas in 2006 just 87% were NHS-funded. That shows that the NHS is providing more and more of this service. Ninety-two per cent. of abortions were carried out at under 13 weeks’ gestation, and 81% were carried out at under 10 weeks, illustrating the fact that the procedure is becoming safer. Sixty-two per cent. were medical abortions, more than double the proportion in 2006—again, a good sign of progress. This data clearly shows that improving access and choice within the existing framework can be achieved. I am sure that all hon. Members will welcome the fact that the vast majority of abortions are taking place at earlier gestation times, which is safer for women and offers increased choice of medical abortion.

On home use, abortions in England can be performed only in an NHS facility or in a place approved by the Secretary of State for Health. At present, a patient’s home is not an approved place for abortion. I am aware that the Scottish Government have recently granted approval for the second stage of early medical abortion treatment to be undertaken in a patient’s home in certain circumstances. As I have said repeatedly, our overriding principle is that all women who require abortion services in England should have access to high-quality and safe care. We will continue to engage with women and with stakeholders on ways to make our safe and regulated services even more effective.

A key part of an abortion service is providing information and services to enable women to make informed decisions and to support good sexual health. This includes information about, and provision of, contraception and testing for sexually transmitted infections. Abortion providers should be able to supply all reversible methods of contraception—including long-acting reversible methods, which are the most effective—and offer testing for sexually transmitted infections as appropriate. Before the woman is discharged, future contraception should have been discussed and, as far as possible, the chosen method should be initiated immediately. All women should be offered testing for chlamydia and offered a risk assessment for other sexually transmitted infections such as HIV and syphilis. Provision of effective contraception is essential if we are to make progress towards our ambition to reduce unintended pregnancies in women of all ages. For women aged 24 and under, we have seen significant reductions in the abortion rate, most notably in under-18s, where the rate has reduced from 18.2 per 1,000 in 2006 to just 8.9 per 1,000 in 2016. Rates in women aged over 24 have remained stable or increased slightly. We know that we have more work to do to ensure that we see improvements across all age groups.

Over the past 50 years, there have been significant improvements in women’s health, in the regulation of abortion, and in the safety of abortion. It is appropriate that we look back, take stock, and congratulate ourselves on that, and that we continue to ensure that the way in which we allow for legal abortion makes it, at all times, safe and well regulated.

Question put and agreed to.

Pompe Disease

Jim Shannon Excerpts

Tuesday 31st October 2017 Commons Chamber

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

I am delighted to have secured this debate to raise awareness of the very rare condition known as Pompe disease. I hope that the very holding of this debate will contribute to that, and I look forward to the Minister’s response, and hope that he will set out some constructive suggestions on what we will do going forward to deepen knowledge and understanding of this awful disease.

My journey towards an involvement with Pompe disease and securing this debate began when I was visited in my constituency surgery by my constituent John Foxwell. He is a polymath. He is an award-winning author and publisher, specialising in communication technology. He worked for his community, too. He lives in my constituency at present, but he previously lived in Devon where he was both an elected councillor and served as mayor, and was also a trustee and director of his local food bank.

Drawing widely on his experience as a teacher and headteacher, John Foxwell has contributed to UK Government policy over the past 20 years. He has managed national educational projects including the first education action zone and the Building Schools for the Future project, and contributed to education White Papers. His reports on education have been drawn on by international companies. Prior to that, he worked in buying and merchandising for a multinational cycle and auto retailer. Knowing the importance of communication, he also founded companies that assisted those who come to the UK from other countries, developing translation tools and assisting community cohesion.

Now, however, John Foxwell has had to leave that remarkable career behind him. He has to spend up to 15 hours a day on a mechanical ventilator to enable him to breathe, as his diaphragm is paralysed. He cannot walk far, or lift or bend or lie flat—if he did, he would struggle to breathe—and he falls easily. A common cold could cause him to go into respiratory failure and die. His life expectancy is significantly reduced. His wife has had to give up her own job to look after him. She is one of an army of carers across the country whose work needs to be recognised right across the House.

John Foxwell is one of only about 150 people in the UK who have Pompe disease. The condition is named after a Dutch medic called Joannes Cassianus Pompe. Given that he was Dutch, his surname was probably pronounced “Pompa”, but the disease has become known as “Pompey” disease. He was born in Utrecht in September 1901, and later studied medicine at the city’s university. His breakthrough came in December 1930, when he carried out a post-mortem on a baby girl who had died at the age of just seven months. He discovered that her heart had become enlarged and that the muscle tissue in the heart had become like a mesh. He thought that a substance build-up was causing that to happen to the heart muscle and came to the conclusion that that substance was glycogen. In other words, the sugar strings that store energy in cells had not broken down as they should have done, due to a faulty gene inherited from the little girl’s parents.

Dr Pompe became a pathologist at the Hospital of Our Lady in Amsterdam in June 1939, and after the German invasion of the low countries in the second world war, he became a part of the Dutch resistance. He was involved in finding places for Jewish people to hide from Nazi persecution. His laboratory at the hospital housed a radio transmitter that was used to send messages from the Dutch resistance to the United Kingdom. He was eventually arrested by the Nazis in February 1945, after the transmitter was detected. On 15 April 1945, he was executed as part of a reprisal for the Dutch resistance blowing up a railway bridge. The discoverer of this disease seems to have been a very brave man indeed.

Dr Pompe had discovered what came to be known as the first category of the disease, the infantile variety that presents in small babies who fail to thrive, and that often leads to death from heart failure in the first year of life. Life expectancy in those case is, alas, less than two years. The second category is “late onset” where, as the name suggests, symptoms do not become apparent until later on in life. As is the case with my constituent John Foxwell, progression is generally slower, but it is characterised by skeletal muscle wasting that causes mobility issues and breathing problems.

Those who suffer from the disease receive support from Muscular Dystrophy UK—I put on the record my thanks to it for sending a briefing in advance of this debate—and the Association for Glycogen Storage Disease (UK), which also provides support to sufferers here. The standard treatment for Pompe disease is enzyme replacement therapy. The faulty gene that is inherited from sufferers’ parents stops the creation of an enzyme called acid alpha-glucosidase—I will refer to it as GAA from here on—that breaks down the sugar strings of energy in muscle cells. The enzyme replacement therapy involves a genetically engineered enzyme that assists with regulating glycogen—the sugar strings— and is received into the body by regular infusions. The trade name for the enzyme is Myozyme, which is available from the pharmaceutical company Sanofi Genzyme.

The availability of Myozyme differs slightly around the country. In England, it is directly commissioned by NHS England under specialised criteria. In Wales, where my constituent lives, the All Wales Medicines Strategy Group recommended to the Welsh Government that Myozyme should be endorsed within the NHS in Wales for the treatment of Pompe disease, but there is a specific restriction in that it is not endorsed for late-onset Pompe disease on grounds of insufficient evidence of clinical effectiveness.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on presenting such a wonderful account of the gentleman involved in the history of the disease. Like others, I have been contacted by Muscular Dystrophy UK, and rare diseases come up here often and are a particular interest of mine. This is ultimately a question for the Minister, but does the hon. Gentleman agree that the Department of Health must ensure that there is adequate support for the centres across the UK that provide highly specialised care for patients with this rare muscle-wasting disease? I think the Minister will respond to that, but the hon. Gentleman’s speech encapsulates what we are all trying to achieve here.