Cystic Fibrosis Drugs: Orkambi

Gregory Campbell Excerpts

Monday 10th June 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Sutton and Cheam (Paul Scully) on setting the scene so well for us, and all the right hon. and hon. Members who have made such fantastic contributions on a subject in which we all have a deep interest.

This is an issue that I have spoken on many times in this Chamber and indeed outside it. I have received emails from constituents with photos of their children, begging me to do something to give these precious little ones a better quality of life. If ever we needed to be reminded of the importance of this for the children, as every hon. Member has said, that is such a reminder.

Let us be clear: cystic fibrosis is not only, tragically, a life-limiting disease, but a disease that massively impacts on the quality of life and the life experiences of the sufferers and their families, because the families live the children’s tragedy as well. Cystic fibrosis is one of the UK’s most common life-threatening inherited diseases. It is caused by a defective gene carried by one person in 25, usually without their knowing it. That is more than 2 million people in the UK, and if two carriers have a baby, the child has a one in four chance of having cystic fibrosis.

Around 10,400 people in the UK have cystic fibrosis; that is one in every 2,500 babies born. It affects some 100,000 people in the world. According to the most recent report from the UK Cystic Fibrosis Registry, based on people with CF who were recorded as alive from 2013 to 2017, half of people born with cystic fibrosis in 2017 were expected to live to at least 47, but the 132 people with CF who died in 2017 had a median age of 31. That is a massive difference and we cannot ignore it.

Parents are begging me, begging us, begging this House to ensure that those years are of the best possible quality. After numerous trials, some carried out with Northern Ireland constituents, Orkambi seems to be a drug that does exactly that for many people—enabling the best possible quality of life. My most recent correspondence from Richard Pengelly, the permanent secretary for health in Northern Ireland, outlined clearly that he does not have the power to do what we all need him to do and what he wants to do:

“Let me say that I share your disappointment that the progress in making this drug more widely available has not advanced as we had hoped. At the heart of this matter is the inability of the manufacturer Vertex to come to agreement with the relevant UK Health Technology Assessment bodies.”

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

When we have the most senior civil servant in Northern Ireland, along with NHS England and virtually everyone else who has any dealings with the issue, saying, “Look, we need action, we are powerless to move,” does that not throw the ball firmly back into the Government’s court to resolve the matter with the company?

[Jim Shannon]

I thank my hon. Friend for those words. This is not an easy subject for the Minister to respond to, but it is one that has captured the interest of us all on behalf of our constituents, and we need the Government to grasp that and move it forward to the next place. We look for that.

If the Republic of Ireland is able to come to some arrangement with Vertex, if the Scottish Parliament is able to do similar and if, according to the background information, it is possible to go to Argentina and buy a year’s course of drugs for one patient at £23,000, compared with £104,000 for a year’s supply here, that tells me that something can be done if we had the willpower to do it, as my hon. Friend the Member for East Londonderry (Mr Campbell) has said. We can look around at our UK neighbours and look toward Scotland, whose Government have reached an agreement with Vertex.

The permanent secretary went on to say:

“In the absence of this positive NICE determination, the Health and Social Care Board…may take into account guidance produced by other appropriate HTA”—

health technology assessment—

“bodies based in other UK countries such as the Scottish Medicines Consortium…when making decisions about access to new drugs.”

I say to the Minister that I have made a comment about the Republic of Ireland, but I also make a comment about Scotland, because I think that the process enables us to use what Scotland has done as an example for us elsewhere.

The permanent secretary continued:

“The Department is aware that Vertex have re-applied to the SMC for consideration of approval for Orkambi, and that in the meantime there is currently limited access to the drug in Scotland via their PACS”—

peer approved clinical system—

“Tier 2 scheme, which is broadly analogous to our Individual Funding Request Process.

If Orkambi is approved by the SMC, details of the funding models in place, which are currently bound by commercial confidentiality, will be shared with the other UK countries. This will allow for us to have full access to the evidence and costs associated with this therapy and will inform any further decisions on access.”

The hon. Member for Colne Valley (Thelma Walker) referred to the destruction of some medications. Whatever the reason for that was—whether they had run out of time or whatever—I think it is disgraceful that people have destroyed some medicines rather than letting them be used by the general public, by those who need them. If that is not unacceptable in this day and age, I do not know what is. It is absolutely disgraceful; it really annoys me.

It is simply terrible that we are in a position where our hand are tied. I say again to the Government: look to your Scottish counterparts. I firmly believe that we can and must do more from this place and that that must start with acknowledging that the NICE guidelines do not currently take into account the differences, when it comes to pricing, between treatments for rare diseases and a new antibiotic strain. We need a new form of assessment for rare diseases and I would like to see that taking place as soon as possible to ensure that the mummy of my two-year-old constituent, who is asking me for this drug in order to give her child as normal a life as possible, can look forward to securing the best for her child. That is what every Member has said here today on behalf of their constituents.

Again according to the background information that I have, in May 2019 the Government said in response to a parliamentary question that discussions between Vertex, NHS England and NICE were ongoing. You know something? They have been ongoing for more than a year. Let’s get them sorted. Time is passing fast. I am joining colleagues in asking the Department to make the administrative changes necessary to end the Orkambi stalemate with NICE and to put in place a body designed specifically to address rare disease patients and their needs. We acknowledge that NICE does a tremendous job in ensuring that safe, cost-effective medicines are available on prescription, but we need a different set-up for those whose illnesses are very different and for the sake of my constituents and those represented by other MPs who have spoken today. I am asking that those decisions be taken and the changes made to enable Richard Pengelly, the permanent secretary at the Department of Health in Northern Ireland, to do what he knows he needs to do and allow the prescription of Orkambi to those whose lives would be radically altered and enhanced by it. It would give them life-changing opportunities. As others have said, give those children a chance.

Leaving the EU: Health and Social Care

Gregory Campbell Excerpts

Tuesday 19th March 2019 Westminster Hall

[Brendan O'Hara]

The hon. Gentleman makes a valid point, but we have to compete for workers and to have an attractive package for people to come here to work, but if we take ourselves out of the game, we are no longer in the competition—we will have cut ourselves off. There are issues relating to retraining and getting people into the sector, but unfortunately the demographics are incredibly skewed against that happening, certainly in the short and medium term. I will come on to some of the statistics.

At the end of June 2018, NHS England had more than 100,000 unfilled posts. The NHS regulator has stated that such vacancies will become even more commonplace during the remainder of 2018-19. Both the Care Inspectorate and the Scottish Social Services Council have found that 40% of social care organisations report unfilled staff vacancies. There is no professional analysis out there that does not estimate that the demand for care will only increase in future. The King’s Fund, the Health Foundation and the Nuffield Trust have predicted that NHS England staff shortages could rise from 100,000 to almost a quarter of a million by 2030. That is more than one in six of service posts. At the end of last year, Care England estimated that by 2035 an additional 650,000 care jobs will be required just to keep pace with the demands of our ageing population.

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

I congratulate the hon. Gentleman on securing the debate. On the statistics, did he establish whether it was also estimated what the level of vacancies was likely to be were we to remain in the EU over that 10-year period, given that there are 100,000 vacancies now, despite the UK being a member for 40 years?

[Brendan O'Hara]

I realise that many things have been blamed on the European Union, but the demographics and the population outcome of the UK cannot be blamed on it. What one can say about the present situation, however, is that we can predict that it will not get any better in the short or medium term. I think that Skills for Care has calculated that a quarter of the health and social care workforce are aged 55 and over. They will be due to retire sometime in the next 10 years, which will mean another 320,000 vacancies that need to be filled.

Let us not kid ourselves: we are facing a looming crisis. Equally, it is a crisis of the UK Government’s making, because they chose to go down this road of a hard Brexit. They want to take us out of the single market and the customs union; they chose to end the freedom of movement that has done so much to enhance the social, economic and cultural wellbeing of the UK over the past 40 years; and they did so knowing the consequences that such actions would have.

I therefore look forward to the Minister explaining exactly why the Government allowed that to happen and what their long-term plan is to fill those hundreds of thousands of vacancies facing health and social care in the coming years. If that plan includes yesterday’s launch by NHS England of the campaign to encourage GPs to come out of retirement, then heaven help us.

The primary purpose of this debate is to focus on the enormous challenges that will face our biggest asset, the people, whether they work in or rely on the sector, but as important as recruitment, retention and the level of care we provide is the issue of medicines and access to research. As I said, I have been inundated with representations from charities and third sector organisations, which are all extremely worried about the future of medical research and the ability to source vital drugs and treatment, particularly if we have a chaotic crashing out of the European Union. Who would have believed that in 2019 we would have a UK Government advising people to stockpile medicines? Those medicines might be life-saving, but we all took it for granted that they would be there if and when necessary. Now people are stockpiling, in 2019—it beggars belief.

--- Later in debate ---

[John Howell (Henley) (Con)]

It is a pleasure to serve under your chairmanship, Mr Bone, and to follow the hon. Member for Argyll and Bute (Brendan O'Hara). Above all, this debate allows a reasonable discussion of the issue, which I hope we can have, but I was struck by the similarity between it and last night’s debate in the main Chamber. Like the hon. Gentleman, I am aware of constituents who have expressed their great problems in getting drugs for two conditions, in particular: insulin for diabetes and the drugs required for cystic fibrosis. Cystic fibrosis is a particularly horrible disease that requires a continuous supply of drugs, so I can understand the concerns.

Throughout all the discussions on this matter, I have been conscious of the lack of objectivity from anyone, including the medical profession. The hon. Gentleman seems to think that those in the profession can stand aside and take an independent line, but I do not believe that is true or that what they say is necessarily helpful. Allow me to pick up where the Minister left off: the guidance published by the Government for pharmacists and members of the public is not to stockpile medicines. As part of the Brexit contingency measures, the Department of Health and Social Care has asked drug manufacturers to ensure they have a six-week buffer stock, on top of the three months already in place, but the public do not need to stockpile medicines.

[Mr Gregory Campbell]

During a recent episode of “Question Time”, the new presenter Fiona Bruce asked the audience how many of them were stockpiling. Almost nobody put their hand up, much to the embarrassment of the BBC.

[John Howell]

The hon. Gentleman has much more leisure time than me, as he can still watch the BBC. I cannot remember when I last watched it, but I am pleased to join him in condemning its attitude. He makes a strong point. During the Brexit campaign, the health sector was dominated by the promise on the side of the famous bus, but equally, the remain campaign has lied through its teeth in saying many things. I have no real confidence that, if we were to have a second referendum, we would at any stage be able to have a debate free of exaggeration.

A constituent contacted me to say that he had been to a local hospital and was astonished to see that as a result of Brexit—although it has not happened yet—the ward was closing and had lost a large number of staff. I decided I would not let that go, but would find out the facts. I spoke to the matron who ran the ward in question. She said to me, “That is absolute rubbish. We have a full ward; this is a normal cycle of people’s leave and it has nothing at all to do with Brexit.” If we make Brexit arguments we need to ensure we have a rational and objective discussion, which so far we have not been able to have.

Oral Answers to Questions

Gregory Campbell Excerpts

Tuesday 19th February 2019 Commons Chamber

[Jackie Doyle-Price]

We are aware that substance misuse and addiction have a massive impact on mental health. Again, I point to the fact that we have objectives in the long-term plan, including joining up more effectively with local authorities’ work on mental health. Tackling addiction and substance abuse is very much a priority.

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

The Minister will be aware of the high prevalence of mental health issues among ex-service personnel, particularly people who served in Northern Ireland and the middle east. What provision is she making for those who suffer unduly on the mental health front?

[Jackie Doyle-Price]

I am grateful to the hon. Gentleman for raising the matter. Through the military covenant, we have an absolute duty to provide the best possible care to those who have made that commitment to service on our behalf. Through NHS England’s commissioning of specialised services, we are determined to ensure that we have the right provision for all our veterans and servicemen. I am in contact with the Ministry of Defence to ensure that we do all we can for them.

Cancer Workforce and Early Diagnosis

Gregory Campbell Excerpts

Tuesday 8th January 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Member for Poplar and Limehouse (Jim Fitzpatrick) for securing this debate, and for giving us the opportunity to discuss this important issue. I am the Democratic Unionist party spokesperson on health, so such matters are at the top of the tree for me. I am pleased that the Minister and shadow Minister are here to respond to our concerns, and we appreciate the Backbench Business Committee kindly granting us this debate.

Cancer is a word I hate; it is a disease I hate. A respecter of no person, it indiscriminately attacks and takes from us those who we love and rely on. I truly believe that a cure must be found and found soon for this dreaded disease, but while that work is taking place, we must focus on the best use of the limited resources available. I congratulate the Government on their NHS 10-year plan and their commitment to a cancer strategy within it.

As hon. Members have said, we all have family members and friends who have been stricken by cancer. I have a good friend who will have breast cancer surgery on Friday, and my father survived cancer on three occasions due to the expertise of the surgeon, the nurse’s care and, critically, the prayer of God’s people. My hon. Friend the Member for Upper Bann (David Simpson) referred to the bowel cancer testing kit in Northern Ireland, and probably because of my father’s history, I carry out screening with that kit every year, and therefore I would know early on whether any cancer has been detected. That is what we are doing in Northern Ireland, and hopefully it is something that other parts of the United Kingdom can take on board.

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

Does my hon. Friend agree that, given the almost universal acceptance of the importance of early detection, the long-term plan, like any other plan, will be judged against an increase in early detection? That is the key.

[Jim Shannon]

I agree wholeheartedly with my hon. Friend and colleague, and although many people are dying from cancer, a larger number are surviving that diagnosis.

I wish to thank the tremendous staff who work well above their paygrade and the hours they are paid to make a difference to the quality of care and support for cancer sufferers. I also thank the wonderful charities that aim to step into the breach where at all possible. We all know of such charities, and if I do not mention some of them that does not make them any less important. Many charities, including Marie Curie, do tremendous work.

Macmillan Cancer Support is an amazing charity. In 2017, it had more than 5,700 nurses supporting 658,000 people, with a further 2,000 healthcare professionals throughout the United Kingdom. In 2017, 1.6 million people received personal, high-impact support from one or more Macmillan professionals or services. While broadly welcoming the Government scheme, Macmillan has expressed serious concerns that the plan does not adequately address the immediate and longer-term pressures facing the NHS cancer workforce. Those concerns are put forward in a constructive fashion, as they should be:

“The NHS long-term plan makes clear that the funding available for additional investment in the workforce, in the form of training, education and continuing professional development through the HEE budget has yet to be set by the Government. This is a key priority and must be urgently addressed. The plan states that there will be a separate Workforce Implementation Plan in 2019, but more detail is needed about the timeframes, and how the implementation plan relates to the long-promised phase 2 HEE plan on the cancer workforce. It is essential that we build on the ambitious foundations of the NHS long-term plan and put in place a fully-funded strategy for the workforce that will deliver truly world-class cancer care.”

That is what Macmillan Cancer Support expressed before this debate. Perhaps the Minister will respond to those points.

I agree with the sentiments expressed by Macmillan, and more detail is needed to deal with funding gaps to address the issue of speed of diagnosis in quick-moving cancers such as pancreatic cancer. My hon. Friend the Member for East Londonderry (Mr Campbell) and the hon. Member for Bristol West (Thangam Debbonaire) spoke about early diagnosis, and nearly every Member who has spoken in the debate has said it is critical—and so it is. Pancreatic cancer is the quickest-killing cancer, with one in four people dying within a month, so we need a faster pathway to diagnose and treat it, as the hon. Member for Scunthorpe (Nic Dakin), who is particularly interested in it, will know. Early diagnosis is essential in the case of pancreatic cancer, as it offers the only chance for potentially curative surgery. However, fewer than 20% of people with pancreatic cancer are diagnosed at an early stage, and fewer than 10% will receive surgery. The capacity does not currently exist, and there must be an increase in the cancer workforce to ensure timely diagnosis and treatment. Every Member who has spoken in the debate has supported the point of view expressed by Macmillan, and it is critically important.

Prostate cancer has been mentioned. When men are ill we are, by our nature, the illest people in the world, but sometimes we just do not know when we are ill. I make that point in relation to prostate cancer because we do not do the checks, although we know what has to be done. Needing the toilet more frequently, a burning sensation and passing blood are some of the symptoms, and men perhaps need to look out more for them. We need to raise awareness of prostate cancer. To be fair, I think that the Government do that, but perhaps there is a need to do more.

I hope I will be forgiven for repeating some comments that have been made, but these issues are important. The hon. Member for Bristol West referred to CLIC Sargent, and I want to make some comments on children’s cancers. CLIC Sargent is a wonderful charity and has asked me to use this opportunity to stress something that shocked me when I first read it, and which underlines the point about the workforce. Children make up the highest proportion of cancer patients diagnosed through emergency admissions, and many young people and parents have a poor experience of diagnosis. The 2016 “Best Chance from the Start” research report on experiences of diagnosis found that more than half of young people and almost half of parents had visited their GP at least three times before the cancer diagnosis.

As the hon. Member for Bristol West said, there is a particular need for early diagnosis for children. Nearly half of young people felt their GP did not take their concerns seriously. I do not think that is a criticism; it is how they felt. A third of parents felt that their GP did not take into account their knowledge of their child. We should not ignore what parents know and say about their child. It is important to do something to raise GPs’ awareness in relation to children. Just over a third of young people and a quarter of parents felt that their GP did not have enough time to listen to them talk about their symptoms. I want to ask the Minister what has been done about that. I am mindful of the pressure on GPs, who have a lot of work to do. However, something needs to happen for children diagnosed with cancer and their parents. Like the hon. Member for Bristol West, I am requesting that something be done. The urgent change that is needed can be achieved only through funding to take the pressure off diagnostics, allowing GPs to refer before the third repeat visit. They must be allowed to go with their gut and send anything suspicious to be tested further, rather than playing a numbers and probability game. Cancer does not respect the numbers game—it strikes where it might be least expected.

This is my last paragraph, Mr Howarth. Time has beaten me. I heartily welcome the strategy, but we need more detail and more action, and soon, to make a difference, and so that we can make a worthwhile attack on the plague of cancer, which affects families throughout the United Kingdom. That is why the debate is so important.

Oral Answers to Questions

Gregory Campbell Excerpts

Tuesday 27th November 2018 Commons Chamber

[Stephen Hammond]

My hon. Friend has always been an assiduous advocate for his constituents and their concerns. He is right to make that case today. He is also right that, thanks to the hard-working staff in his hospital and across the country, the four-hour target continues to be met for nearly nine out of 10 patients. I will be delighted to come to Stafford.

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

Does the Minister agree that what considerably exacerbates A&E waiting times at the weekend is when, on occasion, our highly valued NHS staff come under attack? We should have a zero-tolerance approach to any attacks on those highly valued members of staff.

[Stephen Hammond]

The hon. Gentleman is absolutely right. There can be no statement other than complete condemnation of attacks. We have changed the law, and it came into force earlier this month.

Phenylketonuria: Treatment and Support

Gregory Campbell Excerpts

Tuesday 26th June 2018 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

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

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

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

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

[Jim Shannon]

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

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

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

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

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

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

A parent whose daughter has PKU said:

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

Another parent said:

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

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

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

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

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

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

Oral Answers to Questions

Gregory Campbell Excerpts

Tuesday 19th June 2018 Commons Chamber

[Steve Brine]

Because we believe that there should be a mixture of carrot and stick. We believe that the soft drinks industry levy has been successful, but we are also working with the industry on reformulation across the board. I recently visited Suntory, which makes Lucozade and Ribena. If we work with industry, we see transformative results for companies and for the people who buy their products.

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

A few years ago, I initiated a debate on this issue in Westminster Hall. Since then, no progress has been made on childhood obesity. Would the Minister care to outline what he thinks will happen in the lifetime of this Parliament in terms of achieving the objectives that he has set out?

[Steve Brine]

We assess the plan all the time, and we make progress reports on it, as we did last month with the sugar report. However, when I addressed the Health Committee recently, I could not have made it clearer that we think there has been progress.

This is a world-leading plan. When we talk to other people around the world, they are very keen to hear about what we are doing and very interested, and we are interested in learning from them. If we do not take action, one of our biggest public health challenges will get worse and worse, and that will have implications for the health service and for all our constituents.

Infection Prevention and Control

Gregory Campbell Excerpts

Tuesday 15th May 2018 Westminster Hall

[Jim Shannon]

My hon. Friend is right. I hope that hospitals will take note of what is said in this debate and take action accordingly. It is all very well a visitor washing their hands almost to the point of obsession—every time they go out and come back in again—but hopefully that same level of hygiene control is being done by the hospital as well.

When I notified him of the debate, Professor Didier Pittet said:

“In the early 2000s, the NHS was the first ever health system to use a hand hygiene promotion strategy modeled on the World Health Organisation’s. This strategy went on to be active in 186 of the 194 UN member states. I call for the UK and the NHS in particular to reinvigorate hand hygiene promotion as the main strategy to reduce infections. The WHO hand hygiene promotion strategy saves between 5 and 8 million lives in the world every year, and will save hundreds of thousands in the UK.”

So, the importance of the debate is clear.

I spoke to the Minister before the debate and gave him a copy of my speech, to make him aware of what we are trying to do and the questions I want to ask him. I have absolutely no doubt that the shadow Minister and all of us here will be saying the same thing. We are looking for the same thing. There are some pilots in place and some recommendations coming from across the NHS, and we want to look towards those as well.

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

My hon. Friend talks about similarities and about issues being the same. Does he agree that, on the various standards—all of which are improving all of the time across the United Kingdom—we should all strive for best practice, with the most successful practices being replicated right across the United Kingdom in all the devolved institutions?

[Jim Shannon]

What my hon. Friend says is wise—we always hear very wise words from him, no matter what the debate. If we have best practice in Middlesex, Edinburgh, Cardiff, Newtonards, Bangor or Belfast—wherever it may be—let us replicate it everywhere else. My hon. Friend is absolutely right.

It is true that here in the UK we have made good progress in reducing the number of healthcare-associated infections over the past 10 to 15 years. The introduction of mandatory reporting of infections in the early 2000s has certainly helped to track the trends. When we look at some of the things we have done, there is good news. In 2003-04 the average quarterly count of MRSA bacteria was 1,925, but by 2008 it had reduced by 57% to 836—a significant reduction. Although that should be a cause for celebration, rates of healthcare-associated infections remain stubbornly high. Today’s debate is really about getting to the stubborn hard-core hygiene-related infections that do not seem to want to move.

The results of the most recent point-prevalence survey show that the number of patients contracting an infection in hospital is staggering. Every one of us knows how important the matter is. When my dad was in hospital for a time, he was always catching infections there. I am not saying that that was the fault of anyone, but I had thought that the possibility of infection would be greater at home—in hospital you expect it to be lower. Unfortunately, in the cases that I am aware of of people going into hospital with an illness, the rate of infection is high. People worry about that. My constituents worry about it, and I believe that everyone else’s do as well.

One in every 16 patients contract an infection in a UK hospital. That is only 6.4%, but it is 6.4% too many. There are 5,000 patient deaths every year from healthcare-associated infections. That is the thrust of the matter. If we are having deaths in hospital due to these infections we need to address the issue, and I look to the Minister for some thoughts on how we can do that. I am confident that he will come back with something that will help us in our debate.

The human cost of infection goes without saying. However, healthcare-associated infections also have a significant financial cost, which cannot be ignored. The health issues are one consideration, but the financial spin-off is also great. If we can address the infections early on, we can reduce the financial implications and also the deaths and infections. At a time when the health service is facing an unprecedented strain on services, reducing that financial burden is all the more pressing. It is estimated that hospital-acquired infections cost the NHS in excess of £l billion a year, which is 0.8% of the health service’s total budget. That is not an insignificant amount; £1 billion would change a lot of things for the health service and also, I believe, for people’s lives. That amount includes the immediate costs of treating patients in hospital, and also downstream costs due to bed-blocking—we all know the problems with bed-blocking. The costs are especially relevant, given the challenging winter that the NHS has just come through, with hospital capacity reaching 100% in some cases.

If I ask my constituents back home, where we unfortunately have a non-functioning Assembly, what the key issue is for them, they will say that it is health, and it will continue always to be health. If I may make a political statement, but not for any reason other than to illustrate the point: if Sinn Féin were to grasp what is important—and health is one of the things we can agree on—we could move forward together.

Cancer Targets

Gregory Campbell Excerpts

Tuesday 1st May 2018 Westminster Hall

[Mr Baron]

I thank the hon. Lady for her support. I have been non-partisan on this matter, as I have been as chairman of the all-party group. Both sides have been guilty of trying to score political points on the back of process targets, because no Government have met them all in their entirety; we play this short-term political game when in reality what we need to do is, as best as possible, take the NHS out of politics and encourage long-term thinking. The best approach, at least with regard to cancer, would be to get the NHS to focus on those one-year and five-year survival rates. We could then stand back and say, “You are the medical experts and we are the politicians. We will hold you accountable, but use your expertise now to come up with the best plans to improve your one-year and five-year figures.” That would certainly encourage longer-term thinking and funding.

I am conscious that other hon. Members want to contribute, so I will not bore everyone with the ins and outs of the all-party group’s efforts to encourage the Government to break the link between the 62 days and the transformation funding, because discussions are still ongoing. However, I will share with the House the fact that I raised the issue at Prime Minister’s questions back in December. During a positive subsequent meeting in March, the Prime Minister agreed that all transformation funding should be released immediately, provided that relevant cancer alliances promised to produce a 62-day plan—the promise is the important thing; they did not have to produce them.

I am now in discussions with officials from No. 10 and the DHSC, because the system has been slow in following through what was agreed at that meeting. Following my further question at Prime Minister’s questions last Wednesday, the Prime Minister has agreed to meet me again, should we continue to make insufficient progress. Negotiations are now in train and I hope that we can get the funding released as quickly as possible, without waiting for the alliances to actually hit the 62-day target. The Prime Minister clearly said that she wants the transformation funding released on the promise that they will produce a plan to hit the 62-day target.

In the long term, the NHS needs to rebalance its focus away from process targets in favour of outcome indicators, such as the one-year cancer survival rates, that best help patients. If outcome measures are good and being hit, it follows that the processes will also be good; one cannot have good outcomes if there are not good processes. Patients will be seen and diagnosed in a timely fashion appropriate to their illness. These outcome measures will also have the benefit of allowing the NHS to design services and pathways flexibly, and without the straitjacket imposed by blunt process targets. That is the key issue here: focusing on the outcomes encourages the NHS at the frontline to devise ways of encouraging earlier diagnosis, including better awareness campaigns, wider screening uptake, better GP referral routes and better diagnostics. The NHS is encouraged to make those decisions at the frontline in order to drive forward earlier diagnosis.

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

I congratulate the hon. Gentleman on securing the debate and on the excellent work that he has done, not only with the all-party parliamentary group, but on a wide range of events over recent years. On the transformative nature of events, does he agree that we need to see international best practice, which he alluded to earlier, employed in the United Kingdom to ensure that cancer sufferers here, and their friends and families, can see the benefits?

[Mr Baron]

I completely agree. Our inquiry into cancer inequalities in 2009 found that the NHS is as good as any other healthcare system internationally, if not better, at treating cancer once it is detected; the problem is that we do not detect it early enough and we never catch up. The line of international averages compared with UK averages shows that we are always behind, and there is little evidence that we are catching up. We get behind at that early one-year point, because we are not diagnosing as early as other healthcare systems, and no matter how good our treatment, we do not catch up. That is how we are losing those tens of thousands of lives, because we are not matching the European averages for survival rates.

NHS Blood Cancer Care

Gregory Campbell Excerpts

Wednesday 17th January 2018 Westminster Hall

[Colleen Fletcher (Coventry North East) (Lab)]

Thank you, Mr Wilson. It is a pleasure to serve under your chairmanship. I commend the hon. Member for Crawley (Henry Smith) on securing the debate, which, as we have heard, is particularly timely, given today’s launch of the report by the APPG on blood cancer, “The ‘Hidden’ Cancer: The need to improve blood cancer care”. I was happy to be a small part of that. The report makes significant recommendations, all of which I, as a member of the APPG, fully endorse, about improving care for blood cancer patients on their journey from diagnosis to treatment and through to recovery.

I shall focus my comments today on the commissioning of stem cell transplantation and the inconsistencies in post-transplant care. There is a common misconception that if a blood cancer patient finds a matching donor and undergoes a stem cell transplant, they are out of danger—that that is the beginning of the end of their journey, the point from which they get better. In reality, nothing could be further from the truth. Although a stem cell transplant is a potentially curative treatment for blood cancer patients, recovery can be a long and difficult journey. Many of those living post transplant will experience severe and debilitating physiological and psychological side effects from their treatment, not only in the first few days, weeks and months after the transplant, but many years down the line. Indeed, a transplant patient is often described as “a patient for life”.

The side effects include physiological problems, such as graft versus host disease and a higher risk of second cancers, infections, infertility, premature menopause and fatigue, as well as psychological effects, including isolation, depression, anxiety and post-traumatic stress disorder. Patients dealing with the impact of a stem cell transplant, and particularly those receiving an allogeneic transplant, therefore require ongoing support from appropriately qualified health professionals.

The problem is that the provision of high-quality post-transplant care varies significantly across the country, leaving vulnerable patients at the mercy of the often fragmented and inequitable postcode lottery NHS, in which some get very good support but others get very little.

Recent research by the charity Anthony Nolan reveals that many patients are struggling to access the services that they need post transplant. It is particularly concerning that only half those who need psychological support, such as counselling or group therapy, receive it. The same is true for practical support, such as help at home or with getting back to work; and one in five is not offered any specialist care to help with elements of their physiological recovery, which includes access to physio- therapists, dieticians and fertility experts.

To address the areas of unmet need, we must reform the commissioning of post-transplant care. Currently, responsibility for commissioning services transfers from NHS England to CCGs after only 100 days. There is evidence that that arbitrary cut-off leads to gaps and variation in the care and support that hospitals are able to provide, despite their best efforts. That increases the burden on patients and their families, making their recovery much more difficult. As recommended by both the APPG report and Anthony Nolan, it is essential that NHS England reviews the 100-day cut-off in order to eliminate the inconsistencies and fragmentation in post-transplant care across the country. I hope that the Minister addresses that point in winding up the debate.

As part of the process, we should consider the creation of a national care pathway for patients for at least five years post transplant. That pathway should ensure that patients have access not only to the full range of physiological, psychological and practical support services after their transplant as well as before and during, but to a clinical nurse specialist—or equivalent model of support—who can help them through their recovery journey, managing their care and plugging some of the gaps that would otherwise exist.

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

The hon. Lady is talking about the system required in a post-transplant period. Does she agree that every individual is obviously significantly different and there may well be a significant difference in the amount of time required immediately after the transplant and subsequently for a period of years, and that that needs to be taken into account as we go forward?

[Colleen Fletcher]

I thank the hon. Gentleman for that intervention. Yes, I agree. People are totally different. Some, I know, have sailed through with few problems, and others have had many problems occur after the 100 days.

People may know that my husband, Ian, had a stem cell transplant more than three years ago, just after being diagnosed with acute myeloid leukaemia. What I have said today reflects his journey. He has been a beneficiary of cutting-edge research, which has allowed his cure, but we have also experienced some of the inconsistencies along a journey that has been too long to narrate today. It is from that experience, and from my heart, that I ask the Minister to look at a fully funded care pathway for at least five years post transplant, with the specialist care needed to allow people the chance to live their lives again as fully as they can.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Crawley (Henry Smith) on securing this debate and on the hard work that he has done to promote this issue in the House and further afield. I am happy to be a member of the APPG along with others in this Chamber today and to support him in the role that he plays.

As the Democratic Unionist party spokesperson for health, I felt it necessary to make a contribution, even though the onus of where we are is probably England-based. We need to highlight some issues with regard to the NHS and blood cancer care. My father, who is dead and gone almost three years, had cancer—not blood cancer—on three occasions, but he survived those three occasions owing to the skill of the surgeon’s knife, the care of the nurses and the prayers of God’s people. Clearly, we have made great advances—some magnificent advances—in cancer care over the past few years.

May I say to the Minister, the shadow Minister and the proposer of the debate that I, along with others, have a meeting with the Prime Minister at half past three, so I need to get away for that occasion?

I was delighted to receive information on blood cancer and I take this opportunity to thank all of those who are working so hard to highlight the issue and bring about change, and who supply such enlightening and helpful information. There are almost 250,000 people living with blood cancer in the UK today. Although many forms of blood cancer are rare, as a group blood cancer is Britain’s fifth most common cancer and third biggest cancer killer, claiming more lives each year than breast or prostate cancer. Those figures surprised me. We are all grateful for the advertising that highlights breast and prostate cancer, which affects us men. Unfortunately, we are probably loth to see the doctor, but the Minister’s Department encourages us to be more active and forthcoming about the problems that we have. Advertising keeps these things fresh in our minds and educates us as to the symptoms to be aware of, but the fact is that blood cancer kills more people and we need to be mindful of that when finding additional funding. The Minister always responds in a positive fashion to the debates in Westminster Hall and tries to help.

Northern Ireland has an average of 123 cases of leukaemia diagnosed annually. That may not seem much, but when we take into account the small size of Northern Ireland it is clearly something that is taking its toll. It is also clear that the aftercare of those cases is essential. Although we are discussing NHS England, there is a need for devolved bodies to work together to ensure that we do not have a UK postcode lottery for the treatment of blood cancers and that an equal level of treatment is available UK-wide. Can the Minister outline whether he has had any co-operation with the Department of Health in Northern Ireland? If not, is he willing to undertake to do that?

[Mr Gregory Campbell]

On the issue of co-operation, does my hon. Friend agree with me that the excellent news of the opening in the past year of the North West Cancer Centre in Londonderry, which offers opportunities and the skills of many in the nursing profession both in Northern Ireland and in the Irish Republic, is a perfect example of that co-operation and is widely welcomed in the community? Does he agree that that is an exceptionally good development?

[Jim Shannon]

My hon. Friend has mentioned a supreme example. That is something that we all welcome in Northern Ireland, and indeed across the whole of the United Kingdom of Great Britain and Northern Ireland.

I have been contacted by Myeloma UK, which asked me to highlight its cause and needs. I am happy to do so in Westminster Hall and for the Hansard record. Some 5,500 new cases of myeloma are diagnosed in the UK every year, which equates to 15 people a day. Although myeloma is a rare cancer, it is the second most prevalent blood cancer, which has no cure as such. It is important to highlight that in Westminster Hall today and with the Minister.

In the past 10 years, with improvements in treatment and care, survival rates are increasing faster than in most other cancers, so there is some good progress, but there is a long way to go. Myeloma remains a very challenging cancer to live with and to treat. To truly get to grips with that cancer means dedicating funding to finding the cure, but also providing a quality of life for those who suffer from it.

In our debates on cancer the one thing that always comes up is early diagnosis. Whether it is prostate cancer, breast cancer, myeloma or bowel cancer, getting it early is the secret. I mentioned us menfolk earlier and how we respond to things. Maybe we need to be a bit more eager to tell our doctor when things are wrong with us. I commend the many charities and groups such as Marie Curie and Macmillan. Along with those charities we also have many church groups and organisations that help and give succour and support to families at a time when one of their loved ones is very ill.

Another issue is that of the 100-day care by NHS England after treatment, which must be reconsidered to ensure that there are no gaps in service, as has been highlighted by the Anthony Nolan trust. The Minister is nodding; I know that he and others in this Chamber are aware of that. The briefing that was provided made it clear that the steps taken by the Government have been welcome, and yet more leeway is needed to allow complete care packages to be in place. If that means going over the magic number of 100 days, there needs to be a mechanism that allows that to take place. Will the Minister fully consider that request—I know he will—and provide a detailed response outlining his decision as to whether the extension of care before transfer to local CCGs can be achieved?

I believe we can make decisions in this place, in this House, in Westminster Hall, in the House of Commons and across the whole of the United Kingdom of Great Britain and Northern Ireland that will allow blood cancer sufferers to have a better prognosis and a better treatment plan. We must do all that we can to bring that about.