Earlier Cancer Diagnosis: NHS Finances

Jim Shannon Excerpts

Tuesday 18th October 2016 Westminster Hall

[Mr Baron]

I thank my hon. Friend for that intervention.

We have been successful in getting the one-year figures into the DNA of the NHS, but there is no point having the tools in the toolkit if we do not use them, and one thing we are looking carefully at is the lines of accountability. We acknowledge that we are pushing at an open door—the Government have kindly accepted the need for the one-year figures—but there is still a very long way to travel. The latest Ofsted-style ratings have maintained the focus on survival rates, and yet those ratings still found that eight out of 10 CCGs must improve. That shows the scale of the challenge and the extent to which we need to raise our game.

[Jim Shannon (Strangford) (DUP)]

If I could cast the hon. Gentleman’s mind back to the previous intervention, the Be Clear on Cancer campaign identified about 700 more patients with lung cancer, which led to about 300 more patients receiving life-saving surgery. That shows that publicity campaigns work. Does he agree that the Government need to encourage the NHS to have more publicity campaigns to identify the issues and save more lives?

[Mr Baron]

I agree completely. Briefly, the initiatives that could be introduced to promote earlier diagnosis are greater awareness campaigns, better diagnostics at primary care level, better uptake of screening in screening programmes, and better GP awareness—although this is not only about GPs. A whole host of initiatives could be introduced at the primary care level to improve survival rates and awareness generally. So yes, I completely and utterly agree.

Given the limited time available, I will make a little progress on the central point of this debate. We are pushing at an open door, which is fine; we are keeping a watching brief as a cancer community; and, as I have said, the Ofsted-style ratings have shown, among other things, that a big improvement is required. The all-party group on cancer will hold its annual parliamentary reception next summer—the Minister no doubt will be invited to that—at which we will focus on those CCGs that have most improved their one-year survival rates. The Britain Against Cancer conference, which we believe is the largest gathering of the cancer community in this country, will take place at the end of this year and will also focus on that issue.

We are therefore not walking away from the issue of survival rates, but we are saying as part of our watching brief that we wish to bring to the Government’s attention the fact that when it comes to cancer treatment, earlier diagnosis can not only help patients—diagnosing cancers earlier makes for better survival rates—but save a lot of money. The later cancer is diagnosed, the more aggressive the treatments and the higher the cost. That cost is quite significant, and the cost savings from earlier diagnosis could be ploughed back into treatment for patients. At a time when the NHS is under financial pressure, we suggest that too little attention is being paid to those potential cost savings. Too little work has been done by the NHS and too few health economists are looking at how reducing costs to such an extent would benefit both the taxpayer and, most importantly, patients.

Given the NHS’s lack of focus on that area, we have had to go to outside sources to give us some sort of measure of the potential cost savings. A September 2014 report by Incisive Health and Cancer Research UK showed quite a disparity between the cost of treating patients with early stage, or stage 1, cancer and those with late stage, or stages 3 and 4, cancer. For example, the cost per patient per year of treating colon cancer is £3,300 at stage 1 and £12,500 at stage 4—a near fourfold increase. Treating stage 1 rectal cancer costs £4,400; that goes up to nearly £12,000 if it is treated at a late stage. Treating ovarian cancer costs just over £5,000 per patient per year at an early stage, but £15,000 at a late stage. That report focused on four cancers: colon, rectal, lung and ovarian. They amount to only around a fifth of all cancers diagnosed, but if such cost savings were replicated across all cancers, we could be talking about savings of hundreds of millions of pounds, and that is before we even consider the number of patients who would benefit from earlier diagnosis, which Incisive Health cites as something like 52,000.

Ambulance Waiting Times

Jim Shannon Excerpts

Monday 17th October 2016 Commons Chamber

[Richard Drax (South Dorset) (Con)]

It is a pleasure to address the Chamber under your chairmanship, Madam Deputy Speaker. It is also a pleasure to see in his place my hon. Friend the Minister of State, Department of Health, who is a very able Minister.

My speech is not an attack on the Government per se. It is my job as the MP for South Dorset to stand up and speak for people without fear or favour. In my six years as MP, I have seen the ambulance service increasingly struggle, and I hope that any information that I impart will lead to the improvement of the service.

I pay tribute to the men and women of the ambulance service, whose professionalism, dedication and selflessness have saved countless lives. People’s ability to dial 999 in an emergency in the expectation of receiving urgent and expert medical help has long been one of the NHS’s treasures. Now, it is the ambulance service itself that is facing an emergency. In the year to May 2016, ambulance response times hit a record low. Not a single one of the 10 ambulance trusts in England met the target of reaching 75% of incidents within eight minutes. Worryingly, the current national average for a response within eight minutes is 68%. This trend has grown over the past four years, which is the period for which the Government have published response figures.

Ambulance control rooms across the country are buckling under the twin strains of increased demand and dwindling resources. The increased demand is undeniable. Last year set a new record, with 10.8 million ambulance call-outs in 12 months—a staggering number. The London control room alone now fields 5,000 calls for ambulances every single day.

The numbers show that emergency calls for ambulances have risen by 6% year on year for 10 years. This has not been helped by the fact that people are finding it harder to see their GP, meaning that they fall back on A&E. Although we can debate the causes, the fact remains that there are simply not enough vehicles, paramedics and clinicians to cope with the increase in workload. At the same time, the resources available have been cut or frozen. Six of the 10 English ambulance service trusts are currently in deficit, having overspent their budget, despite making efficiencies. East Midlands Ambulance Service NHS Trust alone had a £12 million deficit last year.

In my constituency, efficiency savings have directly affected the South Western Ambulance Service NHS Foundation Trust, which I shall refer to from now on as the trust. An ambulance call-out in the trust now costs 2.5% less than last year. The trust covers Bath and north-east Somerset, Bristol, Cornwall and the Isles of Scilly, Devon, Dorset, Gloucestershire and South Gloucestershire, Somerset, Swindon and Wiltshire—a huge predominantly rural land mass covering 20% of England. I highlight the trust’s area of responsibility because it is the most rural of all the ambulance trusts and the area is one of the most sparsely populated, which means longer distances, higher fuel costs, patients who are harder to locate and hospitals that are more spread out. This means that ambulances need to be parked at intervals across the region, as I see all the time.

Achieving response times and meeting budget targets under such circumstances is a challenge. It is not just the increased demand and reduced resources that are creating the problems; the target culture does not help. Though well intended, targets can skew both priorities and outcomes. For example, to meet target times, a fast-response paramedic on a motorbike or in a car might be sent to a critical incident that would almost certainly require ambulance transportation to hospital. Those red-category incidents include life-threatening emergencies such as cardiac arrest, where survival depends on swift and specific action. Sending the wrong resource in such a case might well tick the target box on response times, but the eventual outcome might not be so satisfactory. For example, if responders reach a patient only one second short of the eight minutes, it is considered a success, even if that patient dies.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this matter to the House. In 2014-15, the Northern Ireland Ambulance Service met its eight-minute deadline in only 60% of cases. Such problems beset all of us across the United Kingdom—here on the mainland and in Northern Ireland. Does he agree that it may be time to share those experiences and also ideas about how we can make things better across the United Kingdom? If we can do that together, to see what improvements we can make, we will all benefit.

[Richard Drax]

I entirely concur. As I said at the start of my speech, I am not here to condemn the Government, because they have the most appalling situation to deal with, given rising costs and all the things we know about the health service. Yes, more integrated systems, which the Government are working on, are definitely part of this. As I will say at the end of my speech—perhaps I will say it now—we really ought to think about the whole NHS and how it is run, not just the ambulance service. We need to do that free of politicians, with expert advice being sought from non-politicians—those who know how the health system works, not least the clinicians—so that we can re-look at this whole situation. We have enough money, but we have not spent it particularly wisely in every case.

Let me just go back to my example—you might well have lost the thread, Madam Deputy Speaker—about the target times for red-category incidents. I was saying that if responders reach a patient only one second short of the eight-minute target, it is considered a success, even if that patient dies. Conversely, it is deemed a failure if a patient lives, but help has arrived just one second over the eight-minute response time. Worse, the trust is marked down for it.

Once at the hospital, ambulance crews face yet another target: they must hand over their patient to the emergency department within 15 minutes. Anything over 30 minutes incurs a fine, although it is not applied to all areas and is capped by the trust’s commissioners. Yet, handovers can be achieved only if there are available beds and bays in the emergency department, which in turn can free up space only by transferring patients to wards or into surgery. That flow—from ambulance to emergency department to ward and, hopefully, to home and recovery—simply is not happening, because beds are not being cleared. The so-called bed blockers—the chronically ill and often elderly patients—languish in hospital beds because there simply is nowhere else for them to go. Without enough community care outside the hospital to discharge them to safely, there is no alternative, and so if the wards are full—they often are—there is gridlock. Regrettably, we have all become accustomed to the sight of ambulances lined up outside the emergency department with their crews tending to their patients until they can be handed over. In August this year, ambulances delivered patients to the Royal Bournemouth hospital’s emergency department 650 times. The 30-minute handover target time was breached 91 times, and in eight cases patients waited for more than two hours.

It is perhaps not surprising that ambulance crews feel demotivated and demoralised, and A&E staff are equally under pressure. They are all attempting to do their best—everyone recognises that—but perhaps that is in a system that sets them up to fail. Unsurprisingly, the attrition rate in the ambulance service in England is running at 11% a year, leading to each ambulance service having to replace more than one in 10 of its call handlers, drivers, clinicians or paramedics. I am told that these invaluable, experienced professionals eventually buckle under the physical and emotional demands of their jobs, often leaving for the better hours, conditions and pay offered by GP surgeries and clinics. The retention of staff is notoriously difficult in A&E departments, too, for similar reasons. A recruitment crisis now faces the ambulance service and A&E departments. Yet, for these most dedicated and professional workers, without whom the NHS would grind to a halt, there is little light on the horizon. Instead, and extraordinarily, fines are imposed on the cash-strapped services employing them.

Hold-ups from ambulance to A&E represent a waste of precious resources; in the trust’s area, that amounts to a staggering 5,000 hours per month, and the south-west’s hospitals are by no means the worst performing in England. For that reason, the trust and the Yorkshire and west midlands ambulance services have been trialling a new response programme. The aim is to get the right resource to the right incident first time. Rather than sending a response vehicle to meet a target, more time is taken to identify the reason for the call-out. Something that is life-threatening, such as strokes and heart attacks, will inevitably need an ambulance transfer to hospital, whereas a less serious case can be dealt with by a paramedic. Members might have thought that that sounds like common sense, but it seems to me, and I think to many, that targets, in part, get in the way of common sense. Sheffield University will report on the results of the programme. Interestingly, Wales is already using the system, with a 75% success rate, and Scotland is starting trials now.

Inevitably, waiting times for ambulances are increasing as pressures mount. Regrettably, there are consequences for the patient and, of course, their family and friends. Less well known are the physical and verbal assaults on ambulance staff. In the trust’s area alone, those have doubled in 12 months—that situation is, I am told, untenable. Death threats have been made to control room staff, while physical injuries have included a broken jaw and a career-ending attack with a baseball bat. Often, drink and drugs are to blame; sometimes, mental health issues, pain, sheer anxiety and frustration make relatives and friends lash out. I am not, for one second, condoning that behaviour—in fact, I condemn it—but I am just trying to explain it. I have some experience of this with constituents who are devastated when they do not get the emergency response they expect—when we dial 999, we do indeed expect a speedy response.

Ambulance service staff are united in calling for a formal, ongoing public information campaign that tells the public not only when to call an ambulance but what to expect when one is called. With the number of calls continually outstripping the number of ambulances available, expectations need to be managed. I would be grateful if the Minister expanded a little on that when he answers. By way of example, in Dorset and across the whole trust area, 58%—nearly 60%—of 999 calls do not result in patients being sent to A&E at all, and 14% of callers are treated and advised over the phone.

Calls to make funding for ambulance services and A&E a special case chime with calls for increased social care provision to free up beds in hospitals so that a flow can be re-established. That is particularly important in Dorset and the south-west, where so many pensioners choose to live.

I would like to share some observations from Mrs Fiona Smith, who is the manager of Milton Court sheltered housing in Poole, which is not in my constituency. Her charges, who are all in their 80s and 90s, live independently and successfully in their own homes, with support services provided by the company. If they suffer heart attacks or strokes, the ambulance arrives within 10 minutes, she says, but if they fall down, the importance of the incident is downgraded by call handlers due to immense pressure from other incidents. Mrs Smith recently waited for more than four hours with a frail 96-year-old lady who remained lying on the floor with a broken hip because protocols would not allow staff to lift her. Mrs Smith is at pains to point out that she is not criticising the ambulance staff; she simply believes that there is insufficient funding and staff. Her advice to me and the Government, and to others, is that we need to get our priorities right.

I know there is no short-term solution to the picture I have painted, and I sympathise enormously with the Government’s plight. In the past, Governments of all colours have had this massive problem, which is growing as the population gets older and lives longer, and the cost of medical care rises. More joined-up care is one way forward, as the hon. Member for Strangford (Jim Shannon) suggested. I praise the clinical commissioning group in Dorset, which is working with all GPs and hospitals to try to ensure that a more joined-up care approach is working. I believe that that is happening across the country, and I am sure the Minister will expand on that. This is a vital way forward that will solve some of the problems.

Perhaps, as I hinted—I do not know whether the Minister can expand on this—we need to re-examine the whole NHS, rather than just picking on particular bits of it. Now and in the past, when politicians and Secretaries of State sometimes feel that that things need to be done—and they do—they unfortunately fail to look at the whole picture. This is not a criticism of our current Secretary of State, for whom I have high regard; I think he is doing an extremely good job in difficult circumstances. However, perhaps now is the time—as we see, to a certain extent, the writing on the wall and the warning signs flashing—for us to sit down and have another look at how the NHS is run. I leave that point with the Minister and his Department. I can only recommend that politicians are kept out of that debate until such time as ideas are put forward to us, because inevitably we would have to make the final decisions.

I end as I began by praising the staff of the ambulance service in the south-west, not least those who serve us in South Dorset and do a fantastic job. I have met many of them and cannot praise them enough. I now look to the Minister to expand on what I have said in the hope that there is some light at the end of the tunnel, and perhaps a little more money at the bottom of the bucket.

Baby Loss

Jim Shannon Excerpts

Thursday 13th October 2016 Commons Chamber

[Antoinette Sandbach]

I certainly do. The more open trusts can be and the more they can share information, the more we are likely to achieve reductions in baby death rates. We need that learning to happen in order to tackle what went wrong and why. Without openness, we will not have that.

Freedom of information requests that I submitted to every NHS England trust indicated that approximately 25% of maternity hospitals still do not have bereavement suites. I am aware that, because of the huge difference it makes to parents, the Government have done much to ensure that funding is available and that action can be taken to tackle the problem.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter before the House. We well remember the Adjournment debates to which she and the hon. Member for Colchester (Will Quince) contributed. One in four pregnancies end in loss, and every one of us in this House has seen the reality of that. My own mother had three miscarriages, as did my sister and one of my staff members. We want to take the opportunity to stand together with all those who have loved and lost a baby. We want to say to them, “We acknowledge the loss; we grieve with you; we pray for peace for your family.” Does the hon. Lady acknowledge the importance of having someone with faith in the grieving suite and of the Church assisting?

[Antoinette Sandbach]

I know many good examples of that. I shall talk a little later about the Doncaster and Bassetlaw Hospitals NHS Foundation Trust, where a midwife together with the chaplain have developed the most amazing suite of resources to support parents. They have tailor-made the information available specifically for the loss that parents face—whether a miscarriage or a stillbirth—and it was all done in their own time, unpaid and unsupported. There is that level of dedication. For every area where there is bad practice, there are fantastic and dedicated clinicians, midwives and indeed chaplains, providing support to bereaved parents.

Like George’s father, members of the all-party parliamentary group want to make a difference. We welcome the Government’s commitment to a 20% reduction in stillbirth rates by 2020 and a halving by 2030 and the additional resources that have been put into the perinatal mortality tool. We are calling for some additional steps which we believe will help to deliver those targets.

The report that we launched yesterday identifies three key aims. The first is prevention. We need a sustained public health campaign that informs parents of the known risks. We know that parents of twins are three times more likely to suffer loss. Black and ethnic minority groups face much higher rates of stillbirth and loss. Mothers over 40, mothers living in poverty, and teenage mothers all have increased risk of stillbirth or neonatal death.

European Medicines Agency

Jim Shannon Excerpts

Wednesday 12th October 2016 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate on a matter of great importance. May I congratulate the hon. Member for Cambridge (Daniel Zeichner) on securing it? As my party’s health spokesperson in Westminster, I have been contacted by pharmaceutical companies about this issue, and I will try to illustrate their concerns in the short time I have.

It was not difficult to predict the tone—I mean this respectfully—of those who are presenting a particular case about the EMA, given their concerns in relation to Brexit. I have a great deal of respect for Members’ opinions on Brexit, and while we must remember that the vote of each Member carries the same weight, I gently remind the House that the die is cast. The people have spoken, and the responsibility of ensuring that we are in the strongest possible position now lies with this House.

I very much welcome this important debate. It is interesting that while we are having this discussion in Westminster Hall, the main Chamber of the House is discussing parliamentary scrutiny of the UK leaving the EU. No doubt this issue will be brought up there. The EMA is one of the mountain of details that the Government must be aware of and plan for when we enter into negotiations for leaving the EU and establishing mutually beneficial trade agreements. The hon. Member for Cambridge set the scene clearly, and although we have different opinions on Europe and Brexit, I do not see any difference in what we are trying to achieve collectively on this issue. Our opinions, focuses and goals are similar, if not exactly the same. That is important.

I will begin with the statement made by the EMA after the referendum result in June. It made it clear that its work will continue as normal. As there is no precedent for a member state leaving the EU, the implications for the location and operation of the EMA are unknown. The EMA also stated that any decision about the location of the agency’s headquarters would be made by common agreement among member states.

The Brexit negotiation team—the Secretaries of State for Exiting the European Union, for International Trade and for Foreign and Commonwealth Affairs, and the Prime Minister—will need information to set out a strategy for dealing with this issue. The Secretary of State for Exiting the European Union and his team need the thoughtful consideration of those with an insight into this matter, so that they can strike the right way forward. It is important that we do that.

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

The helpful debate pack we have from the Library indicates that the pharmaceuticals sector has unfortunately declined as a percentage of the economy in the past five or six years, when we have been in the EU. Does my hon. Friend agree that the outlook of every hon. Member, and throughout society in the UK, should be that we need to redouble our efforts to ensure that the line on that graph begins to go up, rather than continuing to decline?

[Jim Shannon]

I thank my hon. Friend for his comment. I was not aware until seeing the briefing pack that there had been a decrease in the pharmaceutical business over the past few years; I actually thought we were holding our own and moving forward. Brexit will give us the opportunity to move forward, so we should look positively upon where we are.

This debate is not simply an opportunity for remainers to highlight something that may be difficult to negotiate, with no desire other than to prove their opinion on Europe. There is nothing wrong with that—people have different opinions—but let us work together to ensure that we deliver.

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

Is it not possible that part of the reason why the pharmaceutical industry has gone down is that the clinical trials directive of 2001 was very bureaucratic? Following that, we had a fall of one quarter in trial research in the UK, particularly in oncology. That directive is due to be replaced in 2018 with the EMA’s new regulation, which will streamline it.

[Jim Shannon]

I thank the hon. Lady for her intervention and the knowledge she brings to this Chamber and the House. I hope that we can improve on what she refers to when we get into the Brexit negotiations, and through our negotiations outside Europe when article 50 is triggered next year.

Let us work together to allow the EMA and the MHRA to come to an arrangement to continue what has been a great partnership to date and has achieved many results. According to the Financial Times, the EMA outsources up to a third of its work to the MHRA, and that work is responsible for a third of the MHRA’s income. A report in The BMJ states that that work makes the UK an attractive location to carry out clinical trials. The hon. Lady outlined that in her intervention, and I know that the Minister will respond and the shadow Front-Bench spokesman will add his comments.

That relationship, which has been proven to work, does not have to die because the EMA may—I emphasise “may”—move its headquarters. Work must be undertaken to underline the fact that although we will not be in the EU, we will remain the best in Europe at this type of clinical work. We have many things to be thankful for in our experience of it. We all understand the red tape in Europe, and I find it very hard to believe that the only reason why the work was outsourced to the MHRA was the location of the EMA.

[Jo Churchill (Bury St Edmunds) (Con)]

It is a pleasure to serve under your chairmanship, Mr McCabe. I want to return to the point made by the hon. Members for Cambridge (Daniel Zeichner) and for Central Ayrshire (Dr Whitford). The Government need to be aware of the connectivity between the university sector, the clinical trials sector, the pharmaceutical sector and beyond, and of the importance of where the EMA sits in that. I would be grateful for an assurance from the Minister that we are putting everything we can into ensuring that the situation is sorted effectively and quickly.

[Jim Shannon]

I thank the hon. Lady for her intervention and for the knowledge she brings to these debates. She is right in saying that we want a continuation of the good work with universities. Queen’s University Belfast has a partnership with pharmaceutical companies throughout the world, doing clinical trials and marvellous work, as do many other universities across the whole United Kingdom of Great Britain and Northern Ireland. We could do that even better, and we should be doing so.

It was because of the quality of service and the tendering process that we showed that this was the best place for the work to be carried out, and that will remain so no matter where the EMA locates its headquarters. I cannot blame the Republic of Ireland and other countries for putting down a marker that their country could be the home of the EMA when it is time for it to move. If this were an opportunity for business in my constituency, I would also be highlighting our ability to take the business on board. However, panic stations need not be manned tomorrow, because those countries are hoping that an opportunity will arise when we leave in the not-too-distant future.

It is clear that countries that are members of the EEA are covered by the EMA and have access to the centralised marketing authorisation procedure. That is important, as it may mean that the UK could continue to have that procedure after leaving the EU, but it will depend on the negotiations and the UK’s resulting position in the single market. If the UK did not become a member of the EEA, pharmaceutical companies would need to apply separately for marketing authorisations from the MHRA for a medicine they wished to supply in the UK. That will be covered the negotiations.

We must have faith in the negotiations and in those who have been tasked with the job. Let us support the Ministers who have been given that job and encourage them to move forward. I hope they will read the Hansard report of this debate. We are not in the main Chamber, but the contributions made here are important in formulating policy and moving forward.

I have been contacted by Muscular Dystrophy UK, which has asked me to ask some questions of those who will enter the negotiations so that they are recorded in Hansard. I am happy to do so. Will the Government ensure that there is a parallel approval system for new treatments, so that after the UK exits the EU, EMA approvals that are granted apply to the UK at the same time? Will the Government increase the capacity of the MHRA and the National Institute for Health and Care Excellence so that the regulatory and approval processes are faster and can cope with the growing number of emerging treatments for rare diseases in forthcoming years? It is important to underline the issue of rare diseases—I think every hon. Member in the Chamber today has spoken about it at some point. We are all aware of the need for medicines, investigations and work to find new medicines to heal people better.

Those questions need to be considered, and a constructive approach that accepts there will be a change and seeks to influence the way the change takes place is the best way forward as we begin to work on the details that will shape our new position in Europe outside the EU. Let us focus on that.

I am nothing if not a realist, and my decision to support Brexit was not made on a whim or through emotion. It was made after thoughtful consideration that on the whole, we can do better for our country than the way things stand. That will come about through massive change and an overhaul of systems, and this is one of the changes that must happen. The onus is now on the Government, and particularly the team that is working on the negotiations, to ensure that we address the matter and gain the best possible outcome. I thank the hon. Member for Cambridge for giving us the chance to make a contribution to finding the way forward and highlighting the work that must be done to ensure that our MHRA, and indeed our system for clinical trials, continues to encourage work to be carried out here. We need to cement partnerships so that we can make the United Kingdom of Great Britain and Northern Ireland a better place for pharmaceutical companies.

--- Later in debate ---

[David Mowat]

We can agree that the scientific principles at the core of our world-leading science must not be lost in regulation. We can also agree that science is international. It is in all our interests, and in the interests of our communities and our children, that this country continues to do world-class science as part of an international collaboration. That is the Government’s intent and will.

I will finish by talking about our world-class industry.

[Jim Shannon]

I have asked a couple of questions about muscular dystrophy on behalf of my constituents. I do not expect the Minister to give me a response today, but I remind him gently to provide a written response and perhaps make it available to other hon. Members who are here.

[David Mowat]

Clearly when I used the word “finish”, people sprang into action. I will ensure that the hon. Gentleman gets a written answer to his questions on muscular dystrophy.

We do world-class science in this country. We must continue to do so, and to have a world-class pharmaceutical industry, with all that means for value added and input to the Exchequer. Governments are not the reason why we are among the best in the world in gene therapy and cell therapy, and they are not the reason why we have built £60 billion pharmaceutical organisations GlaxoSmithKline and AstraZeneca. It is important that we get the regulatory environment right, and the Department of Health and the Department for Exiting the European Union will ensure that the negotiations we are about to have address those issues.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 11th October 2016 Commons Chamber

[Mr Speaker]

I am extremely grateful to the Minister for his response on that matter.

[Jim Shannon (Strangford) (DUP)]

Bearing in mind that cases of Lyme disease have quadrupled in the past 12 years, and that some of those cases have been in my constituency of Strangford in Northern Ireland, what has been done with the devolved Assemblies in the United Kingdom of Great Britain and Northern Ireland to ensure that a UK-wide strategy is put in place to address this trend and to provide effective diagnosis and treatment?

[David Mowat]

The principal thing that we need to do with Lyme disease is to make progress on diagnosis, treatment and transmission through a definitive approach. When the results of the study that I mentioned are published, of course they will be available across all parts of the United Kingdom.

Psychosis: Early Intervention

Jim Shannon Excerpts

Wednesday 7th September 2016 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to be called to speak in this debate, Sir Roger. I congratulate the right hon. Member for North Norfolk (Norman Lamb) on initiating this debate. I commend him—I have done it in his absence but will now do it in his presence—for the experience and wisdom he brings to these debates, his passion for the subject matter and for letting us take advantage of his knowledge.

This issue is an essential one that needs to be addressed, and this debate is very timely. Just this week, on Monday past, I heard about a constituent who falls into this category. I was contacted by a residents’ group, which expressed concern about a young man. The young man’s parents have died and he is alone. It turns out that he is clearly not taking good care of himself. There is no electric in his home; I suspect that the bills were not paid, and that he was not even aware the bills were there to be paid. There were no benefit checks either. This is a young man who fell between two stools.

Unfortunately, no one was able to help this young man until they were made aware of his problems by the residents and those who lived close by. When the young man was approached, he made it clear that he wanted no help; that was his initial response. The residents’ association worried from afar, and despite calls to the local police, nothing could be done until he was seen with what was perceived to be an offensive weapon. The Police Service of Northern Ireland then intervened, assessed him and realised there was something unusual about his behaviour. It decided he was not a threat initially to anyone other than perhaps himself, and referred him.

I got confirmation yesterday that a social worker has been initiated to come in and assist the young man. Hopefully this is now an example of a response taking place, but there was the delay that Members have mentioned. Indeed, my hon. Friend the Member for Belfast East (Gavin Robinson) gave a very personal example of that. It is about diagnosis and the system that is in place trying to help. That is something we believe has, at long last, happened, but it happened because of the residents’ group—the people who lived close by who had concerns and cared enough to raise them and assist when this man needed it. This is someone who obviously needed help for a long time and yet had fallen through the cracks. It is my belief that the onset of psychosis this young man is going through is not a new issue; it is historical, and yet nothing has been in place to help him in his situation.

Health is a devolved matter, and the Minister is not responsible for health issues in Northern Ireland, but I wanted to contribute to this debate to support what the right hon. Member for North Norfolk and others have said, and to comment about Northern Ireland.

The background information states that some 75% of mental illness in adult life begins before the age of 18 and that 17,000 people a year experience psychosis. It also indicates that many people aged under 16 also suffer psychosis—the right hon. Gentleman referred to that. There is clearly a massive issue to be addressed, and I know that the Minister will respond helpfully. I welcome her to her new position and look forward to her contribution.

The circumstances I have outlined underline the need for this debate. There must be a system in place to enable concerns to be raised and to provide a break for those with psychosis. There must be clear and dedicated guidelines for people to follow to get the necessary help. Without the observation of neighbours and the residents’ group, the person I mentioned would not have received help. The circumstances could have been dire and terrible to contemplate.

On standard waiting times for intervention by psychosis services, I understand that from 1 April 2016 more than 50% of people experiencing a first episode of psychosis will be treated with a care package approved by the National Institute for Health and Care Excellence within two weeks of referral. The previous Prime Minister—this is not a criticism, but an observation for the record—committed £1 billion to mental health; perhaps the Minister will say where that money is. Is it in the system, and has it been used for its intended purposes? If not, with respect to the Minister, we need to know why, and I look forward to her response.

The standard is targeted at people aged 14 to 65. It is two-pronged—both the following conditions must be met for the standard to be deemed to have been achieved: a maximum wait of two weeks from referral to diagnosis and the start of treatment, because it is so important to have early diagnosis and to respond immediately with the necessary help; and treatment delivered in accordance with NICE guidelines and quality standards for psychosis and schizophrenia. I am not sure whether my constituency is different from others, but I know from experience and my workload that I now have more people with mental health issues. Whether I notice them more now or they are coming to the door more, it is certainly a big issue.

Those are the guidelines, but what is happening in practice? Currently, the constituent I referred to has been placed under arrest by the Police Service of Northern Ireland for his safety and the safety of others while social workers and medical professionals determine a plan of action. That is what we need. In Northern Ireland between 2013 and 2014, there were 996 compulsory admissions to hospital under the Mental Health (Northern Ireland) Order 1986, of which 54.7% were of males. I will give some other statistics that give an idea of the gender and age of people involved. Some 45.3% were female, 2.4% were aged under 18, 47.1% were aged 18 to 44, 28.2% were aged 45 to 64, 7.1% were aged 65 to 74, and 15.2% were aged 75 or over.

This issue is massive not just for the NHS on the mainland but for us in Northern Ireland, and indeed for Scotland. The hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) referred to that, as will the Scottish National party spokesman, the hon. Member for Glasgow North East (Anne McLaughlin). We must resolve to make the situation more acceptable and ensure that there is adequate funding for earlier diagnosis and response so that people go into the appropriate care system, whether at home with the trauma team or in a dedicated facility.

Recurrent funding of £40 million has been allocated to support early intervention and the psychosis standard for England, in addition to the previous Prime Minister’s commitment to provide £1 billion for mental health. NHS England’s report on implementing the recommendation of the mental health taskforce estimates the cost of treating an additional 10% of people within two weeks at £70 million per annum when fully implemented, including the cost of developing the workforce. The figures do not add up. How does the Minister expect to reach the goal within the specified time without adequate funding? I know she is up to the task, and I am confident that she will give a good response. We need to see action on the ground.

I ask about that for selfish reasons. Those who know me know that I have no problem flying the flag for Northern Ireland in any debate in the House, especially one as relevant as this. In Northern Ireland, the devolved Assembly determined that the appropriate guidelines were that at least 80% of patients should wait no longer than nine weeks for a first out-patient appointment and that no patient should wait longer than 15 weeks. However, it is clear that those guidelines are not being reached. The matter must be addressed at home, but that can come about only if adequate funding is committed by the Northern Ireland Assembly, and by the Government here, to the Department of Health, Social Services and Public Safety.

In an intervention, my hon. Friend the Member for East Londonderry (Mr Campbell) referred to a UK strategy. We have many debates on such issues in this Chamber, and the Minister will know that I always ask whether there have been talks with the regional devolved Governments—the Northern Ireland Assembly in my region, the Scottish Parliament and the Welsh Assembly—to ensure that we have a UK strategy. The right hon. Member for North Norfolk, who moved the motion, referred in response to an intervention to the need to learn from one another’s regions. Where there has been good practice, let us use it. If there has been good practice in Northern Ireland, we should use it here in England, and if Scotland has an appropriate strategy, let us use it in Wales and elsewhere. Let us exchange ideas and work towards ensuring that a UK strategy is in place and that funding is ring-fenced for that purpose. Access to mental health intervention should be not a matter of postcode, but a right. One in five adults in Northern Ireland will show signs of a mental illness. The figures also show that one in four people will experience mental health problems during their lifetime.

We had a conflict in Northern Ireland for some 30 years, and we have the highest level of mental health illness in the whole United Kingdom. The hon. Member for Plymouth, Moor View (Johnny Mercer), who serves on the Select Committee on Defence, served in Northern Ireland and is well aware of the issues facing those who served in the Army and the trauma they sometimes experience. In addition, families and other people in Northern Ireland have experienced at first hand the threat of terrorism. For us in Northern Ireland, mental illness is a massive issue. I cannot underline that enough, and we must be aware of it.

Figures have shown that when matched against 17 other countries, Northern Ireland had the second highest rate of ill health and problems with mental illness in 2015. It was 25% higher than in England. I urge the Minister to take note of that and to work with the devolved Assemblies—the Northern Ireland Assembly and the others— to ensure that in five years, the statistics are different from those in 2015. Let us set a target and a goal for change. If we aim for that, we can achieve some of what we want to do.

A lot of hard work has been carried out to remove the stigma attached to those who need help with mental health problems. Sometimes I wonder whether we can use different terminology. “Mental health” seems to flag up for people that they should perhaps be careful. People may have emotional problems that are not as bad as they seem. Perhaps we could use other terminology.

We need a system in place to deal with the rising number of people with mental health problems, and that is not currently the case. We need a target for reducing that number. Major changes are needed, and that is the reason for today’s debate. I fully support the calls that are being made, and I look forward to hearing from the Minister about how my constituent—she is not responsible for him—and those like him across the entire UK will be able to get the help they need to function and live in society.

Again, I congratulate the right hon. Member for North Norfolk on bringing the matter to this Chamber, and I look forward to the shadow Minister’s response and particularly that of the Minister.

Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis

Jim Shannon Excerpts

Wednesday 13th July 2016 Westminster Hall

[Dame Margaret Hodge (Barking) (Lab)]

I beg to move,

That this House has considered awareness and funding for treatment of Stevens-Johnson syndrome and toxic epidermal necrolysis.

It is a delight to move a motion under your chairmanship for the first time, Mrs Gillan, and I am grateful to the Speaker for selecting this issue for debate. I am also grateful to the Minister and look forward to having a positive exchange with him.

I had never heard of Stevens-Johnson syndrome or toxic epidermal necrolysis—my pronunciation of some of these medical terms may leave a little to be desired—until my constituent Nadier Lawson, who had suffered from the condition, contacted me. She has set up an awareness group, SJS Awareness UK, which is based in my constituency. It was because of her and that group that I asked for the debate.

SJS—and its much more severe form, TEN—is a severe reaction that affects the skin. It is caused by a whole range of standard medicines that we all use regularly. The reaction is most commonly caused by drugs used to treat epilepsy; some antibiotics, such as penicillin and sulphonamides; over-the-counter drugs such as ibuprofen; and medications that are commonly used to treat HIV and gout. The adverse reaction triggered by those drugs is devastating. I have seen pictures of children and adults who have had such a reaction, and they are truly shocking. People start with a skin rash, which rapidly develops into excruciating blistering across their skin, which starts to peel off. The condition particularly attacks the mucus membranes in the body—in the mouth, eyes, nasal passages and guts—and is similar to having third-degree burns on the skin. The condition is classified according to how much of the body surface is blistered: if it is less than 10%, the condition is called Stevens-Johnson syndrome; if it is 11% to 30%, it is called overlap syndrome; and if it is over 30%, it is called toxic epidermal necrolysis.

The initial symptoms that people experience are non-specific. Someone can take a pill one day and feel nothing for up to a week or two but then start to feel unwell and develop a rash, which is often assumed to be chicken pox, and may experience flu-like symptoms. A key problem associated with the condition is that all too often, it takes far too long to identify. Obviously, the first thing to do is to stop taking the medication that is causing the condition. Failure to identify the condition early enough can lead to terrible lasting effects, including permanent damage to the eyes—resulting at its most extreme in blindness—and lungs, loss of nail beds, arthritis and chronic fatigue syndrome. At the very worst, people die. Around one in 10 people with SJS, the mildest form of the condition, and up to a quarter of those with TEN, the most severe form of the condition, die.

I have a whole lot of case studies, but I thought it worth reading out just one, which was given by a young man who came to an event that I held in the House to bring together people who had experienced the condition. He is called Stuart Doyle, and he wrote and said this:

“Nine years ago I had a TENS reaction. I burned from the inside out and lost around 95% of my skin, all through second and third degree burns with permanent scarring. My finger and toenails burned off and have never grown back. The enamel on my teeth burned away. Mouth, throat, lungs and stomach all burned. My eyes burned and ulcerated, then fused to my upper and lower eyelids. My tear film was destroyed, as was my tear production and I lost all saliva production too. I also had inner ear burning and am now partially deaf in one ear. My genitals burned.”

I will skip a bit and give just a summary of what he said and wrote. He continued:

“I spent six weeks in a ketamine-induced coma, which I was placed in just two days after I arrived at my first hospital. I arrived with what seemed to be meningitis, it was textbook and it was moving fast. Two days later my oxygen SATS had dropped to the point where brain damage had begun its process. They acted quickly; they had already started treating me, my son, and my partner for meningitis. It wasn’t until after the lumbar puncture results came back, that they realised it was not what they first thought it was.

The high doses of anti-biotics were stopped, by this point my throat and lungs had begun burning and blistering and a rash now covered more than half of my body. It was the lungs and throat burning that had begun to close up my airways and provoked the need for a ventilator to keep my brain intact. The ketamine-induced coma was to try and get my heart rate back down from the 180 beats per minute mark caused by the pain of the internal burning. If they’d not done that, I’d have certainly died from cardiac arrest there and then. I was to stay in the coma on full life support for six weeks; my total hospital stay was three months. I woke up in a different city.”

He goes on to describe how the condition has impacted his life, saying:

“I hoped I’d die, I wished every night for 3 years after my reaction that I’d not wake again. I had more surgeries than I can recall, my eyes were in a terrible state.”

This is the treatment that he requires today:

“My eyes require a tremendous amount of work. My day starts before 6am and ends around midnight. I have to change my lenses at least 20 times a day, put in more than 100 drops, both lubricants and steroids, and then there is the ever present pain. But, it’s totally worth the effort and I am so lucky, and grateful for all the work that my doctors put in to get me to here.”

He then says:

“The hardest thing about my new life, is the chronic pain”.

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Lady on raising awareness of this issue. As far as I am aware, this is the first time that this condition has been brought to the attention of Westminster Hall and the Minister. The background information about the condition indicates that it can be triggered by normal medicines such as paracetamol. Is it time for the Minister and the NHS to address the issue by raising awareness of the condition among GPs, consultants and everyone else? The condition affects only one or two people in every million, but it is an important issue.

[Dame Margaret Hodge]

I completely agree. We are raising awareness through the debate, and I hope that the Minister will take action so we can get early identification and therefore prevent people from suffering the condition’s worst impacts.

The condition is rare, and therein lies the problem. I would appreciate it if the Minister addressed the following issues. There is a lack of awareness among many medical professionals, who just do not come across the condition. Insufficient attention is paid to the condition and its symptoms in the education and training of all health professionals. Survivors whom I have talked to all talk about that. A young man, Laurence McCalla, went to my local hospital, Queen’s hospital. They gave him antibiotics; it took about 24 hours to identify the condition. At one point he had 20 doctors and consultants looking at him, because it was new to them and they wanted to learn from it as a case study. Another lad, from Worcester, said:

“There is one big thing that stands out the most from this though. It astonishes me that so many doctors I have seen do not know about it.”

Debbie Hazel was misdiagnosed three times, as doctors thought she had chicken pox. She says:

“One of the problems was the lack of knowledge doctors have about the condition.”

The mum of a 13-year-old son, who lives in Surrey, says:

“My son was so ill and I couldn’t hold him or kiss him. He was screaming because his skin was so raw. I felt helpless. Nobody could tell us what was happening because nobody knew.”

My first ask to the Minister, therefore, is for a commitment that the condition, and its symptoms and treatment, should be taught to medical students, nurses and pharmacists as part of their educational courses. SJS Awareness, the organisation in my constituency, has a fantastic poster about the symptoms and how to spot the condition. Those posters could, if the Minister were to help us, be distributed to all GPs. Early diagnosis, and therefore awareness, would not just alleviate suffering; it would save lives.

Guidance has also been prepared on the clinical pathway by the British Association of Dermatologists. What steps will the Minister take to ensure that that guidance is followed throughout the country so that identification and treatment of the condition is not a postcode lottery? SJS Awareness has asked me to ask the Minister whether we could have an SJS awareness week for the general public. We are talking about such regularly used medicines—Optrex, ibuprofen, penicillin. They are standard medications, which we do not even think about using. We need to raise our awareness about the potential side effects.

Finally, because the condition is rare, money for research on it is limited. However, there is a cost to the NHS from not understanding the condition or recognising it early and understanding how to treat it. I understand the cost of treating skin reactions is about £500 million a year and it simply makes economic sense, as well as being a question of people’s lives, of course, to use research to get better at understanding why some people have such a reaction to drugs. An interesting key finding on genetic testing is that, in China, there is a gene in the population that predisposes people to different types of skin reaction, putting them at a higher risk from the drug carbamazepine. I do not know whether the Minister has come across that. In China and Taiwan, doctors test for the gene before they administer the drug. If we did more work here, we could manage that.

We also want research on new and better ways of treating severe reactions. From what I gather, more treatment should happen in burns units; often that is not understood and people are put into the intensive care unit and given the wrong medication. Finally, it is very important that we should have research on better understanding the features of drugs that make them more liable to cause the reactions in question. Those are three hugely important areas of research. I hope that the Minister can give us some comfort on that point.

People who saw the title of today’s debate would not have had a clue what I was going to talk about, yet the condition could affect any one of us, because we all take the medications concerned—they are standard. I have a file full of tragic cases of people affected by Stevens-Johnson syndrome, yet many people would not have a clue what we are debating. I ask the Minister, therefore, to do some practical things: to help us to raise awareness; to improve the training and development of all medical professionals, so that they understand the syndrome; and to get money for research so that we can understand the causes and prevent recurrences of this terrible condition in our population.

Blood Cancers

Jim Shannon Excerpts

Thursday 7th July 2016 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered blood cancers and the Cancer Drugs Fund.

It is always a pleasure to come to this Chamber and have the opportunity to expound on the subjects that we bring here for consideration. I am pleased that so many hon. Members have made the effort to attend on a Thursday afternoon—often referred to as the graveyard shift. I am not sure that is entirely accurate or fair, but we thank very much those who have made the effort to be here. It is also a pleasure to see in her place the shadow Minister, the hon. Member for Hackney North and Stoke Newington (Ms Abbott), and I look forward to hearing the Minister. He and I always seem to be in these debates—if he is here I am here, and if I am here so is he—but it is always a pleasure to see him. We look forward to his response to the points that we make during the debate.

Cancer is a massive issue. It will affect one in every two people we meet, and many of us here have a personal interest in the subject. More and more people are surviving cancer because of the incredible work that has been done by the pharmaceutical industry and private enterprise, and also because of the work done in partnership with universities. Queen’s University Belfast is involved in finding new drugs and working with private enterprise, the Government and the education system to find ways of doing more.

The fact that more people are surviving and living longer is to be celebrated, but unfortunately not everyone is living well, which is what this debate is about. That is especially true for people with blood cancers, many of whom will live with the disease and the consequences of its treatment for many years. Some of them are fortunate to do so, but for many that will be time limited. About one in four people living with or beyond cancer face disability or poor health following their treatment. Evidence from Macmillan shows that by 2020 nearly one in every two people will receive a cancer diagnosis in their lifetime. Just look round this Chamber: half the people here today will receive a cancer diagnosis at some time during their life; or, if they are not affected directly, their families certainly will be.

I place on the record my thanks to the cancer charities, Marie Curie Cancer Care, Macmillan Cancer Support and the many others, which do such marvellous work with those who have cancer. Right now, routine follow-up care for people with cancer costs about £250 million a year. It is usually delivered via a one-size-fits-all medical model that is based on repeat out-patient consultations despite a lack of evidence to show that that is effective, so we must also look at that.

I was therefore pleased to see the commissioning guidance released recently to promote the roll-out of a recovery package for everyone with a cancer diagnosis. The recovery package will be especially important for patients with blood cancers, because it will mean that they get the physical, emotional and social support they need to lead as healthy and active a life as possible for as long as possible. Every one of us in this Chamber would wish that to happen. Many people with blood cancers live for a number of years with the consequences of their disease and treatment, so there needs to be a commitment from the Department of Health that everyone with a blood cancer will be offered tailored support.

Let me talk from a personal point of view. My father had cancer on three occasions. He passed away last year. He did not die because of cancer, but he was diagnosed 39 years ago—38 years before he passed away—and my mother was told to go home and prepare and get the estate sorted out. In other words, there was next to no hope, but my dad survived, and he survived for three reasons. He survived, first, because of his faith and the prayers of God’s people; secondly, because of the skill of the surgeon’s knife; and thirdly, because of the care of the nurses. Those three things are vital for all of us. That is an example of how far we have come in those 39 years.

Patients with blood cancers can face significant problems in accessing vital treatment because of the difficulties and complexities of appraising medicines in this area. I thank the charities and others who have given us background information. I will not do this of course, but I could probably speak for three hours on this subject. I am sure that people are thinking, “Well, I hope he doesn’t.” I am not going to, because clearly I want to give everyone an opportunity to participate in the debate.

The appraisal system used by the National Institute for Health and Care Excellence is not suitable for assessing medicines that treat conditions with small patient populations—in other words, cancers that affect a small number of people. Perhaps in the greater scheme of things, they are numerically small, but it is vital that the drugs are available and in place.

At this point, I pay special tribute to the hon. Member for Crawley (Henry Smith), the chair of the newly brought together all-party group. I thank him for going with me to the Backbench Business Committee to ask for this debate. We are both pleased to be able to have the debate so early after the launch of the APPG. The hon. Gentleman will speak himself, but it is a pleasure to work alongside him.

[Nic Dakin (Scunthorpe) (Lab)]

I congratulate the hon. Gentleman on securing this very important debate. The issue of small populations and finding the right treatments is crucial as the cancer drugs fund goes forward within the NICE context. That is an opportunity as well as a threat. I hope that the hon. Gentleman will reflect that in the rest of his speech.

[Jim Shannon]

It is always a pleasure to have the hon. Gentleman come along to a debate in support. He always does so, and his valuable contributions are always appreciated by us all. I wholeheartedly agree with him.

The way the system fails blood cancer patients can be illustrated via the case of ponatinib, a drug designed to treat chronic myeloid leukaemia patients who are resistant to or intolerant of other treatments. I will elaborate on this point later, for it is very important. I think that the hon. Gentleman has grasped that it is a vital issue as well. The drug is fully available to all CML patients in Scotland and Wales, but in the remainder of the United Kingdom it is provided on the NHS only to a small subset of patients who can benefit from it after NICE refused to appraise it because of the small patient population. One of the questions that we would like answered in this debate if possible—I am not sure whether the Minister is the right person to answer it, but I know that if he is not, he will certainly direct it to the right Department—is how we ensure that there is not a postcode lottery when it comes to the allocation and availability of cancer drugs.

[Peter Dowd (Bootle) (Lab)]

I thank the hon. Gentleman for securing the debate. Does he agree that parents—in my case, the parents of nine-year-old Charlie Fearns—are confused, distressed and dismayed that they are not provided with the medical intervention that they need to treat their child’s illness? Charlie needs chimeric antigen receptor T-cell therapy, but Mr and Mrs Fearns are having to find as much as £150,000-plus to fund the therapy themselves. Does the hon. Gentleman agree with me that that extra burden, in their circumstances, is far too onerous?

[Jim Shannon]

I thank the hon. Gentleman for his intervention and for that personal story. I think that that situation is a disgrace. Any of us in the House would wholeheartedly agree with him. There has to be a system that enables all the people of the United Kingdom of Great Britain and Northern Ireland to partake of, use and access these drugs. The example he gives shows just where the current system falls short. This debate gives us an opportunity to highlight that and to seek the solutions that he and his constituents want.

The situation with ponatinib has resulted in the equivalent of a postcode lottery in patient access across the UK, with some patients having to move to Scotland or Wales to undergo treatment. Why should they have to move? It is not fair that they should. It seems grossly unfair that they should have to either move or travel to the hospital. For these patients, the drug could be an alternative treatment to a stem cell transplant, and a last chance of survival.

The systems of appraisal used to assess blood cancer medicines need to be able to take into account the small patient numbers and the issues that that raises about the amount and maturity of data available, to ensure that all patients who need access to medicines do not miss out because of where they live.

Chronic lymphocytic leukaemia is the most common type of leukaemia, a cancer of the white blood cells. In leukaemia stem cells start to overproduce white blood cells that are not fully developed; in CLL, these are called lymphocytes. Figures from Macmillan and NICE estimate that some 2,700 to 3,200 people in the UK are diagnosed with CLL each year, with most cases occurring in people over 60 and very few in people under 40. Around two thirds of the diagnoses are made by chance through a routine blood test with doctors; people do not know they have it and all of a sudden they find out they do. The other third of diagnoses are made following visits to the doctor for CLL-related symptoms: enlargement of the lymph nodes, liver or spleen, anaemia, bruising or fever, drenching night sweats and/or weight loss of greater than 10%. Someone with any of those symptoms should see their doctor, and do so soon.

CLL is more prevalent in men, with recent studies showing that some of the risk of developing it is inherited from parents. One in 20 CLL patients has a relative with CLL or a very similar condition; however, CLL can and does affect anyone.

[Mr Nigel Dodds (Belfast North) (DUP)]

I commend my hon. Friend for raising this issue today. In Northern Ireland three people every day are diagnosed with blood cancer. I am sure he would agree with commending the work of Leukaemia & Lymphoma NI, the only charity in Northern Ireland dedicated to dealing with this, and the great support it gives to the Centre for Cancer Research and Cell Biology at Queen’s University, which he has already mentioned. Without the dedicated work of people in charities like that across the country, raising money for absolutely vital research, we would be in a much poorer place indeed.

[Jim Shannon]

I am indebted to my right hon. Friend and colleague for that intervention. We have done, and we continue to do, many great things in Northern Ireland in medical research, charitable giving and charitable operations. He has rightly highlighted an organisation in Northern Ireland that does just that. It is worrying that we have so many people with blood cancer. When we take that as a proportion of a nation of 1.8 million, it gives an idea of just how important it is.

CLL tends to develop very slowly with many people not requiring treatment for months or even years, although others need it straight away. For all stages of CLL, more than 40%, of men and more than 50% of women will survive for five years or more after being diagnosed. At stage A, which is the earliest, people survive on average for 10 years or more after diagnosis, those at stage B for five to eight years, and those diagnosed at stage C live for up to three years. From those figures, life expectancy is very clear: people have a diminished lifespan.

Doctors often recommend against immediate treatment for CLL if it is diagnosed at an early stage and opt to watch and wait. I am concerned that sometimes they need to be more proactive and receptive to what the issues are at the time. “Watch and wait” can be stressful for those diagnosed and their families, but early treatment can lead to exposure to the side effects of drugs without achieving significant benefits, as well as to increased life insurance premiums. Sometimes we have to look at the other things that affect us when our health declines, such as work and financial obligations, or how to feed our family. That adds to the stress.

Patients whose CLL relapses early have a more aggressive form of the disease and it is essential that clinicians have a range of treatment options available to suit individual patient need. That is due to factors such as the variable course and nature of the disease, the toxicity profile of the therapies and the comorbidities, which are more prevalent in this situation. There is a general poor understanding of the need for a variety of treatment options. Again, knowledge of the blood cancers among GPs, the NHS, consultants—those who should know—perhaps needs to be improved as well.

Stakeholders including the CLL Support Association, which has done great work collecting much of this information, have two key areas in which they have workable recommendations to make a difference. For post-diagnosis support the CLLSA believes that because CLL behaves in such a diverse way, it is important that patients and their families are provided with accurate information from trusted sources. Each hospital should have a CLL nurse who can provide patients with useful written information that contains links to websites for those who wish to know more.

Let us be honest: people who get this diagnosis want to know as much about the disease and the problems that they have right away; they want to have that knowledge and information right there. As the hon. Member for Bootle (Peter Dowd) said, citing the personal experience of his constituents, they want to know what it means, how to react, what the survival chances are and how long. All those things play upon the mind; they are very important issues.

When it comes to access to new treatments, a second preliminary decision from NICE in June 2016 has provisionally rejected ibrutinib for NICE guidance to treat relapsed refractory and 17p deletion or TP53 mutated CLL. That group of patients have a poor prognosis and very few options available to them. The manufacturer has been requested to submit a proposal for consideration of CDF listing for access to treat adults for the 17p deletion or TP53 mutation only. Again, that is something that perhaps the Minister can reply to. When people see that they can access new treatments, which really could be life-saving, they want to have them right away and want to try them. In many cases, people probably would not mind piloting those things, just to make sure that they can have life expectancy on the timescale they have been given.

The CLLSA feels that ibrutinib should be made available to both groups because both populations share a number of similarities in patient need, including a significant symptom burden, limited alternative treatment options, and subsequently poor survival prospects. As both groups have a similar symptom burden, it is unfair that they will be unable to benefit from access to this treatment. There are also the quality of life benefits. CLLSA argues that the quality of life benefits reported by patients have not been adequately considered by NICE. As such, the cost-effectiveness of ibrutinib is likely to have been underestimated. Many of us believe—in the background information—that it certainly is a drug that could do more if there was the opportunity. We need to make sure that it can be made available and accessible.

Furthermore it should be noted that CLL is a heterogeneous disease, so there is a need for multiple options in every situation. I know that each person’s individual circumstances are different and the GP and consultant who look at that will decide the way forward. Some patients may not respond to, be unable to tolerate or be otherwise unsuitable for alternative treatments such as idelalisib. As such, there is a clear need for access to ibrutinib to enable patient and clinician choice, so that treatment can be tailored to patients’ individual clinical needs. Ultimately the decision will remain a matter for NICE, but this is what the key stakeholder in CLL believes to be the way forward. That is an organisation that has been run by trustees who are all volunteers and either suffer from CLL, are clinicians or are relatives of those with CLL. They do their research, not for glory or riches, but for what is best for those affected.

Some of the background information we had relates to brentuximab—I hope my pronunciation is right. That is hailed as one of the most effective single agents for relapsed anaplastic lymphoma—or Hodgkin’s lymphoma as it is better known. It was delisted after two of its indicators were removed, making it harder for some patients to receive the medicine they need. In November 2015, the Blood Cancers Alliance met the Secretary of State for Health and in a letter to the Prime Minister expressed its concern over the delisting of life-saving drugs from the CDF. There is a drug that was delisted and that seemed to be doing the job; it is concerning that it has been removed when it quite clearly could have made a difference.

It was greatly encouraging to have so many stakeholders engage on this issue and time will not permit me to pay tribute to all of them. Another organization working in the field is Celgene, which has provided some further information that will add to the debate. Five conditions account for almost 70% of the total lives lost to blood cancer: myeloma, diffuse large B-cell lymphoma, acute myeloid leukaemia, myelodysplastic syndromes and the aforementioned chronic lymphocytic leukaemia. New treatments have transformed survival rates for multiple myeloma since the 1970s and there have been great steps forward. I know that when the Minister responds he will tell us some of the good things that have happened, but average life expectancy for a patient diagnosed with multiple myeloma is still only five years. This debate gives us the chance to discuss the issue and get some direction and focus from the Minister on how we move forward and achieve a better, longer life for those with blood cancers.

Continued progress is only possible with continued research and investment. That is critical to achieving progress in the treatment of blood cancers. We have had many debates in Westminster Hall on rare diseases because we acknowledge the need to focus on rare diseases, and today’s debate is an example of that. The numbers of people who fall into the category of having rare diseases are small, but we must not ignore the burden of their despair and what that means.

Many of the molecules in other companies’ pipelines are being studied in combination with Celgene’s treatments. Ceasing access to those treatments will seriously hinder progress in increasing survival rates and limit future innovation. I know that the Minister, like everyone in this Chamber today, is totally committed to finding new drugs that can cure these life-threatening diseases, as I am sure he will make clear in his response. The point is that a balance needs to be struck between regulation protecting people and allowing innovation.

In conclusion, I am pleased to have the opportunity to express in this Chamber my concern on behalf of those with blood cancers. I thank all hon. Members who have come to participate. Our responsibility as elected representatives is to put the case on behalf of our constituents. I believe we have the opportunity to make a difference for those who many years ago would not have a long life, but who today could have a longer life if they had access to the cancer drugs fund. What we have in the United Kingdom of Great Britain and Northern Ireland is people with fantastic brains who have the ability to come up with new medications and who can make these things happen. I look forward very much to the Minister’s response.

--- Later in debate ---

[George Freeman]

I completely agree with my hon. Friend. As she has made clear, and as I repeated earlier, it is tricky because the symptoms are not always straightforward or simple. It is often not a lump or something that is easily detectable, and the symptoms can easily be confused with those of other conditions that many of us might all too easily brush off and dismiss as the result of tiredness, fatigue and the general pressures of modern life. It is important that people recognise the symptoms. The all-party group and this debate will help to underline the importance of being aware of the early symptoms.

So far there have been 11 national Be Clear on Cancer campaigns covering seven types of cancer, and a national respiratory symptoms campaign will run from July to October this year to raise awareness of lung disease. I shall obviously ensure that the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison) is aware of this debate and will make clear to her the cross-party support for greater awareness of blood cancers.

[Jim Shannon]

I am not sure whether this is the Minister’s responsibility, but those of us who have participated in the debate are very aware of the issues relating to the accelerated access review. We are keen to know whether there could be a review of the scheme and of access to drugs. Even if the review were to resolve the many issues surrounding the speed with which new medicines are evaluated by NICE, unless there is meaningful change to the final decision-making process, new medicines will fail to reach patients. I suspect that is the Minister’s responsibility, but he can confirm that. How can we improve the accelerated access review? I know the Minister will have a good answer and I want to give him an opportunity to share it.

[George Freeman]

I am grateful to the hon. Gentleman for reading my mind—not for the first time—because the next paragraph in my speech is about the cancer drugs fund and the accelerated access review. His intervention gives me a moment to highlight some of the important points that colleagues have made. The hon. Gentleman, who is something of a biomedical stalker of mine on these occasions, as he acknowledged—we rarely appear in this House other than together—was right to highlight the great work that Queen’s University Belfast does on blood cancers. He spoke with great passion about his father’s experience.

My hon. Friend the Member for Erewash (Maggie Throup) spoke about her experience as a haematologist in this field and about being involved on the frontline of research. That is another example of the power of having Members with a range of career backgrounds in the House. She brings great expertise to these matters.

The hon. Member for Coventry North East (Colleen Fletcher), who is vice-chair of the all-party group, made some important points about the CDF, to which I will return, and described the experience of her husband Ian. She asked whether I would meet the Anthony Nolan Trust; I will. I have already had several meetings with the trust and will continue to meet it, and when I do, I will pick up on the issues she mentioned relating to post-transplantation care in particular.

My hon. Friend the Member for Crawley spoke powerfully about his mother’s experience and made some really important points, not least about data and the importance of our harnessing it and generating a new model of appraisal. I will pick up on the latter point when I discuss the accelerated access review.

The hon. Member for Linlithgow and East Falkirk (Martyn Day) discussed NICE and how important it is that we tackle the new landscape and make sure we are quicker and better at assessing new medicines. The hon. Member for Hackney North and Stoke Newington raised several important issues in a spirit of cross-party non-partisanship that I hugely welcome and appreciate.

I return to the cancer drugs fund. At the beginning of the previous Parliament, the Government, led by the Prime Minister, made the important commitment that we would put in place a cancer drugs fund to ensure that UK patients got access to the very latest cancer drug treatments. We did that in response to a number of high-profile cases in which NICE, applying its standard, one-size-fits-all quality-adjusted life year, had turned down cancer drugs, and patients were desperate for some hope, wanting the system to be responsive to their needs.

I am proud that we have made a total commitment of more than £1 billion to the cancer drugs fund and that we are continuing to invest each year, with more than £300 million put in this year. However, the system as it was originally set up has not proved to be sustainable, because of the pressure—inevitable pressure, in some ways, given the extraordinary explosion of our medical advances—put on it. If drug companies are turned down by NICE and there is a fund available for a post-NICE approval, the companies simply go to it and it has become over-subscribed.

NHS England has moved in the right direction by taking our funding commitment and repositioning the CDF as an early access and managed-access fund that examines more innovative drugs, ensures that they are provided to patients more quickly and makes sure that the data from that early access is allowed to inform the selection of the drugs that are adopted.

The truth is that breakthroughs in 21st century drug discovery and the rise of better targeted medicines are bringing huge benefits for patients but they also place huge pressure on our traditional models of assessment, adoption and reimbursement. With a rapidly ageing society and an explosion of new treatments, we cannot continue with the old model of one size fits all, with the NHS acting as a late procurer at a retail price of every drug. At the heart of my portfolio is a mission to unleash the power of the NHS as a research partner in bringing new drugs to market and getting a dividend—a discount—in return for that work.

We spend around £14 billion on medicines in the NHS every year and over £5.5 billion of that is spent on cancer drugs. The new generation of cancer therapies are incredibly exciting. The immunotherapies that we are seeing do not just delay death or grant patients a few extra months or years; they are cures for cancer. Those Daily Mail headlines that have been promising cures for cancers for more than 20 years are finally true. We now have cancer cures coming through, which profoundly changes the way that we will have to price drugs.

Let me say something about the accelerated access review, NICE and the CDF. At the heart of the accelerated access review is a commitment from the Government to consider whether and how we can better harness our extraordinary NHS assets as an integrated healthcare system to become a partner in the development of new therapies, so that instead of the industry treating the NHS as an increasingly pressurised retail-based consumer that struggles with this explosion of ever more expensive technology, we become a partner. Then, in return for sharing our clinical assets, for working with charities and the industry around our £1 billion-a-year National Institute for Health Research network, and for our leadership in genomics and informatics, we can pull innovation through more quickly for patients, share a data package and be the first place on Earth that companies want to come to in order to have their innovations assessed.

The accelerated access review has been examining a whole range of complex issues in this field and its report is waiting for a post-referendum slot to be published. I can assure Members that in the time that the review team has been preparing that report for publication, I have not been sitting around waiting for it; along with NHS England, I have been doing the preparatory work to be ready for it. Without in any way wanting to pre-empt the report, let me just share with colleagues some thoughts about where I think there is a huge degree of consensus between the Department of Health and NHS England on how we might be able to make some moves.

There are three key areas. First, in specialist commissioning, which deals with many rare diseases and rare cancers, the drugs are commissioned nationally through the Department of Health and NHS England. We want to see whether we can pull together that commissioning function into a more innovative procurement unit, to pull through and do some more innovative deals with industry in return for discounts—acceleration for discounts.

Secondly, we want to consider the NICE pathways through to NHS England and ask whether we can make it easier for innovators either to go through a series of much clearer NICE pathways or to go straight to NHS England and do pricing, discounting, acceleration and volume deals, as well making sure that we have an transparency and accountability framework so that people can see which parties in the ecosystem are fulfilling their mandate.

[Mr Clive Betts in the Chair]

The evidence from recent NICE approvals is encouraging. Many thousands of people have benefited from blood cancer drugs that NICE has recommended, such as bortezomib, ofatumumab and rituximab, and the evidence is that if we gather the data properly from the drugs that we approve, then we can use that as an intelligent health service to inform which drugs we adopt and pull through more quickly. If we get that right, the CDF in its reformatted position as a managed-access fund operating earlier in the system could become a powerful vehicle for an accelerated-access model of cancer drugs assessment. That will require some careful work on the NICE/NHS England framework, but we are doing that work right now, as we speak.

I will close, Mr Walker, by saying that—ah, Mr Walker has been replaced by you, Mr Betts.

--- Later in debate ---

[Jim Shannon]

It is a privilege to sum up. First, I thank all the right hon. and hon. Members who have made valuable contributions today. In particular, I thank the Minister for his concluding remarks, which gave us lots of hope and comfort for the way forward. I genuinely mean it when I say that we very much appreciate his energy and his commitment to the issues that he is involved with. We know that when he says he will do things he will actually do them, and we very much appreciate that.

I thank all those Members who have made a contribution today. The hon. Members for Scunthorpe (Nic Dakin) and for Bootle (Peter Dowd) and my right hon. Friend the Member for Belfast North (Mr Dodds) told some personal stories to illustrate the issues. In particular, my right hon. Friend referred to the charitable work that is done in England. I think that theme came through in all the contributions that were made today.

The hon. Member for Erewash (Maggie Throup) referred to the stem cell infrastructure that needs to be improved and I thank her for her very helpful contribution. She referred to the suitability of patients for stem cells and drugs, and she also referred—as we all did—to the improvement of NICE, which is very much needed. In addition, she referred to the clinical research that is also needed.

There was a very valuable, detailed and comprehensive contribution from the hon. Member for Coventry North East (Colleen Fletcher). I am so pleased to have listened to the very personal story that she told us, and what a joy it is to know that she can point to the stem cells and to how her husband’s own health has improved, which in turn helps their entire family. I think that each and every one of us here today was particularly touched by that contribution. On behalf of us all, I wish her husband well. It is good to know that the Anthony Nolan trust was very much involved in his treatment, as it is in the treatment of many other people. We thank the trust for its work.

The one key comment by the hon. Lady that I wrote down during the debate was this: “Hope shines out from the darkness”. She also referred to the geographical variations in treatment that exist across the United Kingdom, and to giving a second chance. How true that is.

The hon. Member for Crawley (Henry Smith), who is the chair of the all-party group on blood cancer, also contributed today. First of all, we thank him for his initiative for starting that group. We are very happy to be behind him. He is the general and we are the soldiers; he leads in the direction that we wish to go in. He referred to 130 blood diseases, to the emotional support that is necessary for sufferers, to his concerns over delisting, to the need to improve performance and to how NICE and the pharmaceutical industry can work together, which I mentioned in my introduction, but it is so important it deserves repeating. He also referred to Bloodwise and said that everyone needs access to the drugs that they require now.

The hon. Member for Linlithgow and East Falkirk (Martyn Day) spoke, as he always does; he never misses these debates. He always comes along and makes a very determined and considerable contribution. In many ways Scotland leads the way in what we could do in the rest of the United Kingdom. His contribution outlined what Scotland has done and the regional variations. He made many important points, but one of the ones that I thought was good—the Minister will have noticed this—was on how we can exchange our viewpoints regionally and then use the regional variations to the advantage of us all. In Northern Ireland, we can learn from what they do in Scotland and in England and Wales, and vice versa. That is important.

It is nice to see the shadow Minister in her place. She has certainly grasped her portfolio quickly. She has lots of experience, of course. We thank her for the comments she made. She referred to the evaluation of drug availability, relative costs, the rationale, transparency, the palliative effect and the absolute cost—

[Mr Clive Betts (in the Chair)]

Order. The format is for the mover of the debate to have literally two minutes to finish. I know we have got time, but there is normal procedure with this. Will the hon. Gentleman bear that in mind and come to a conclusion?

[Jim Shannon]

My apologies, Mr Betts. I did not realise that. I thought I had five minutes, and I presumed that was the case. I will bring my comments to an end.

I thank all those who have taken part. I thank the Minister for his concrete proposals and his response. My concluding point is that a single medicine for a cure takes 12 years, 1,600 scientists and 500,000 lab tests to develop. That is the importance of the work that is done. To put it into perspective, that is what we want to work towards: a cure for cancer. If we can get a cure for cancer, we will make lives better. Let us ensure that everyone in the United Kingdom of Great Britain and Northern Ireland can benefit from that.

Question put and agreed to.

Resolved,

That this House has considered blood cancers and the Cancer Drugs Fund.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 5th July 2016 Commons Chamber

[Alistair Burt]

I am sorry to hear about the difficulties of my hon. Friend’s constituents. There is a provision within the regulations to enable patients who have serious difficulty in getting to a pharmacy because of the distance involved or the lack of transport to receive dispensing services from a doctor. Doctors should certainly not be blocking the addition of local pharmacies. If my hon. Friend writes to me, I can look into the matter in greater detail.

[Jim Shannon (Strangford) (DUP)]

Taking into account the immeasurable value that community pharmacies provide for some of the most vulnerable people in sections of our society, does the Minister agree that, when it comes to Government budgets, these dispensing services should be included in any ring-fencing that goes on around front-line services?

[Alistair Burt]

The hon. Gentleman’s support for these services is well known and what he says is right. The regulations do protect the more vulnerable, but when I next look at them, I will make sure that they fulfil his requirements.

Alcohol Consumption Guidelines

Jim Shannon Excerpts

Tuesday 28th June 2016 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Gower (Byron Davies) on securing this debate. I am conscious of the shortness of time, but I will try to bring some balance to the debate. I have great respect for the Minister, but we have to consider the guidelines. The guidelines are based on the recommendations of the advisory group, which asked the Sheffield alcohol research group to publish a report, and they are very clear: men and women should not regularly drink more than 14 units a week and, if they drink as much as 14 units, it should be spread evenly over three or four days. The Royal College of Nursing, Cancer Research UK and the National Institute for Health and Care Excellence support the guidelines. There is a clear link between alcohol and cancer. Those are the medical facts on which the Minister will respond.

The Campaign for Real Ale has raised many concerns, and it alleges that there is overwhelming evidence that moderate alcohol consumption can be part of a healthy lifestyle. The hon. Gentleman made that point clearly in his introduction. It is about balance and people knowing their limits. He also mentioned promoting social wellbeing, and for many people modest alcohol consumption in pubs enables us to build friendships and create a sense of community.

The industry was thought to be dying, with literally dozens of pubs closing each week, but pubs have now become vital community facilities that bring local people together. Pubs have increasingly diversified to provide much-needed services such as village shops, post offices and even housing for defibrillators. We have seen a beer revolution, and there is no constituency anywhere in the United Kingdom that does not have its own local beers and local gins. Alcohol sales are worth some £40 billion, which does not factor in the associated income from activities and events involving alcohol. Wines and spirits directly and indirectly support 512,000 jobs, 69% of which are directly dependent on the industry’s stability and success.

The issue of problem drinking has to be addressed. The industry points to the fact that most people in this country are moderate drinkers. Research shows that 60% of alcohol sales are made either to those who are risking their health or to harmful drinkers who are doing themselves potentially lethal damage. More than 1 million hospital admissions a year are related to alcohol—double the number 10 years ago.

The UK has an alcohol problem, but as with many policy areas, striking a balance, while incredibly difficult, is essential. We cannot harm those who want to enjoy a drink—not to the point that they end up in A&E—but at the same time it is right to warn people of the perils of excessive drinking. The solution lies in education from as early an age as possible. We still have teen drinking; despite existing education and awareness campaigns, the reality is that teen drinking continues. People need to be made aware why they need to watch what they drink, rather than simply being told to do so.

I will conclude, because I am very conscious that other Members want to speak. Recommendations seem to be continually ignored by all age groups, which is regrettable. To see real change—the change we want—there needs to be more awareness, and that awareness needs to be created in a positive manner, so that drinkers manage their own intake because they want to and not because they are being coerced into doing so.