Covid-19 Update

Mark Pawsey Excerpts

Monday 19th April 2021 Commons Chamber

[Matt Hancock]

As I said to the right hon. Member for Leicester South (Jonathan Ashworth), my approach was and is that local NHS employers are best placed to decide.

[Mark Pawsey (Rugby) (Con) [V]]

Rugby’s primary care network-led vaccination centre at Locke House has provided over 34,000 first and 11,000 second doses to JCVI groups 1 to 9 through a fantastic team of staff and volunteers. The GPs, however, have chosen not to take part in phase 2 of the programme, and the centre is expected to close in mid-July as a consequence. Our local doctors would prefer to vaccinate groups 10 to 12 in their own surgeries, although that option is not currently available to them. What can the Secretary of State do to facilitate that approach to the important task of vaccinating the under-50s?

[Matt Hancock]

I will look into that question, which has not been raised before. Generally, the use of a primary care network—a group of GP practices—to come together to offer one centre has worked really well. That is the first I have heard of that concern, so I will take it away and ensure that it is looked at properly.

Smoke-free Society by 2030

Mark Pawsey Excerpts

Tuesday 23rd March 2021 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Jo Churchill)]

It is a pleasure to serve under your chairmanship, Mr Rosindell. I thank my right hon. Friend the Member for Clwyd West (Mr Jones) for securing the debate, and I am grateful to the hon. Member for North Antrim (Ian Paisley), my hon. Friend the Member for Dartford (Gareth Johnson) and the hon. Member for Strangford (Jim Shannon) for their comments. What joins us together is the passion shared across the House. Everyone wants to tackle the harms of smoking. Smoking kills.

I agree with my right hon. Friend the Member for Clwyd West that we have a good story to tell and should not be afraid to tell it. As he is aware, some good work has been done over the past couple of decades to drive smoking rates down. Rates are now at their lowest level, at just over 13% in England. It is one of the public health success stories. However, we have to do more. We cannot be complacent. There is wide variation, and smoking rates remain too high in certain areas of the country.

Like my right hon. Friend, I would look specifically at the levelling-up agenda in deprived areas, among the lesbian, gay, bisexual and transgender community, and among pregnant women and people with mental health conditions. Our focus on driving down rates across the country must be relentless. We must ensure that they are levelled where they are lowest and that no community gets left behind. The differential between good and poor areas is almost 10 times greater.

Fantastic work is being done to tackle health inequalities in different areas, including recently through the NHS long-term plan with regard to smoking in pregnancy. Its commitment to the maternity transformation fund has provided additional training to give midwives the knowledge, skills and confidence to offer brief advice to women during antenatal appointments, and upskilled practitioners to deliver stop- smoking interventions to those who need help.

[Mark Pawsey (Rugby) (Con)]

The Minister has spoken about having a good story to tell. Is not the take-up of vaping in this country a good story? She will know that we have a very active all-party parliamentary group on vaping. We are about to send her a report—it is currently in draft form—relating to the WHO conference of the parties in November. We took evidence and I wonder whether she agrees that the WHO’s negative view of vaping has been counterproductive. As my right hon. Friend the Member for Clwyd West (Mr Jones) said in his excellent speech, its attitude is partly responsible for the downturn in the number of people vaping. Given the level of interest in this debate, does the Minister think we ought to have a longer debate in order to consider these issues more fully?

[Jo Churchill]

I thank my hon. Friend for his intervention. Given that this is a 30-minute debate and there is a lot of interest in it, I agree that a longer debate might allow us to explore these things. I will comment on COP and the variety of products. We need to use everything in our armoury to encourage people to quit smoking.

We need to help people give up. We are working to ensure that no communities are left behind, as part of the bold ambition to be smoke-free in England by 2030. I listened carefully to my right hon. Friend the Member for Clwyd West talk about how we pack a punch in this area, but things will need to be evidence led. We will set out how we will deliver this later in the year, when we publish the new tobacco control plan for England in the summer. He asked me to reconfirm that we are on track for doing that, and I agree with him that it is a stretch to reach our target by 2030.

We know that the best thing a smoker can do is quit altogether. Covid-19 has brought into clearer focus the need for us to care for our health. PHE has issued guidance on the impact of covid-19 on vaping and smoking, and we know that if people smoke, they have an increased risk of contracting a respiratory infection. With covid-19, symptoms can be more severe if people smoke, but the evidence base is mixed.

As I have said, the best thing people can do to improve their health is to quit. However, it remains the goal of the Government to maximise the public health opportunities presented by e-cigarettes to reduce smoking. UK-regulated e-cigarettes are far less harmful than smoking, but I reiterate that they are not risk free, which I think plays to the comments made by the hon. Member for Strangford.

Research shows that e-cigarettes are effective in helping some smokers to quit, and therefore we need to support them. We will continue to discourage non-smokers from using them, monitor youth uptake and consider tougher regulatory proposals if we see an increase in youth rates.

There are about 3 million people currently using e-cigarettes in Great Britain. Half of those have quit smoking, which indicates that the other half are using them as part of a strategy. As my right hon. Friend the Member for Clwyd West said, and others have alluded to, it is not a panacea. The UK’s approach to the regulation of e-cigarettes has been, and will remain, pragmatic and evidence based. The current regulatory framework aims to reduce the risk of harm to children, protect against the re-normalisation of tobacco use, provide assurance on safety for users, and provide legal certainty for businesses. We are committed to ensuring that our regulatory framework enables this to continue but does not encourage non-smokers and young people to start taking up the habit.

We made a commitment through the 2017 tobacco control plan to monitor the safety, uptake and impact of the effectiveness of e-cigarettes and other novel nicotine delivery systems—and we have done just that. Public Health England has published a series of evidence reviews which further our understanding of their effectiveness in helping smokers to quit. The latest evidence review was published last month.

In our future tobacco control plan, we will consider further research on other emerging nicotine products that have the potential to help people quit—because there is no such thing as a safe tobacco product and all tobacco is harmful, including smokeless tobacco and other tobacco products that we have discussed today.

No assessment has yet been made of the safety of tobacco-free nicotine pouches. These products are not covered under the tobacco regulatory regulations, but rather the General Product Safety Regulations 2005, and the current numbers are from industry and therefore will need a degree of validation.

There are no plans to go further on snus at the moment because all tobacco products can cause harm. However, we are currently undertaking a post-implementation review on the Tobacco and Related Products Regulations 2016 and this is an opportunity for people to feed in and present new evidence for the Department to consider.

Non-nicotine vapes are regulated under the General Product Safety Regulations 2005, and we will review feedback from the post-implementation review if this area needs to be strengthened, including if the products are a health concern. We have paused a further evidence review due to the impact of covid on resources. However, we are looking for people to come forward, and Public Health England will publish its final evidence review, including a chapter on heated tobacco, later this year. The evidence suggests that these products still pose a risk to users, and, compared with e-cigarettes, we know far less about them. As such, we will be following the principle of ensuring that we have a full evidence base.

Under the Northern Ireland protocol, which the hon. Member for North Antrim referred to, things are in equilibrium at the moment. There is no difference. However, under the protocol, Northern Ireland is required to adhere to the EU’s tobacco products directive. We will work in collaboration with the devolved Administrations on matters that are reserved, and, along with that firm evidence, and in the interests of public health, put that forward.

As part of the regulatory review, the Government are undertaking post-implementation reviews. These will assess whether the regulations are meeting their objectives, and if there are gaps that need to be addressed. We have held a public consultation and we will review the responses.

The UK is a global leader and was very grateful to receive an award from the WHO for being instrumental in helping lower middle-income countries to tackle tobacco use. We are determined to tackle smoking and health inequalities both at home and abroad. We will take targeted action to support communities where rates may remain high. I would like to extend my thanks to hon. Members for debating this important subject.

Question put and agreed to.

Covid-19 Update

Mark Pawsey Excerpts

Tuesday 2nd March 2021 Commons Chamber

[Matt Hancock]

Yes, absolutely. While I am so proud of the work that we have done in this United Kingdom to develop the Oxford-AstraZeneca vaccine and to buy vaccines from around the world that are safe and effective, so that we are able to vaccinate everybody here at home, I am also cognisant of the fact that vaccination around the world will be necessary. I was very pleased to see that COVAX started vaccinating in Ghana last week. It currently looks as if we may have excess vaccines in the future, and we have clearly committed that we will make them available around the world.

We know for sure that we seek to vaccinate with two doses every adult in the UK. There may well be a need for a third vaccination over the autumn against variants, and there is currently a clinical trial considering the vaccination of under-18s. So the exact number of vaccines that we will need for the UK population is not yet known, but we are keen to ensure that we then go on to support, with vaccines and with the money that we have already pledged, the vaccination of the most underdeveloped parts of the world.

[Mark Pawsey (Rugby) (Con) [V]]

The Secretary of State knows how well the vaccination programme is going here in Warwickshire, and his remarks at Friday’s national briefing were greatly appreciated here. Many of the residents being vaccinated at Locke House in Rugby have asked me about the road back to normality, and some have asked about getting some sun on a foreign holiday. Could he say something about any plans the Government are considering for people wishing to travel both at home and abroad to be able to demonstrate that they have received their vaccination through some form of certification?

[Matt Hancock]

Coventry and Warwickshire have done an amazing job, and I was very pleased to see them top the ranks published on Thursday of the areas of England that have vaccinated the most. I congratulate my hon. Friend and his team.

On foreign holidays, we said in the road map that international holidays will not be allowed before 17 May. We are working with the global travel taskforce, which met this lunchtime, just before I came to the House. It is chaired by my right hon. Friend the Transport Secretary. I am on it, along with Home Office and Foreign Office colleagues and representatives from the travel industry—from the airlines, cruise ships and others. That will report by 12 April. Last year, international travel restrictions were about restricting the number of cases due to high prevalence elsewhere when the prevalence here was low. The challenge now is that we have to take into consideration the risks from variants of concern, which means that more understanding about the impact of vaccines on variants of concern, such as the one first discovered in Manaus in Brazil that we were talking about earlier, is critical to answering the question of when we will be able safely to reopen international travel.

Oral Answers to Questions

Mark Pawsey Excerpts

Tuesday 23rd February 2021 Commons Chamber

[Jo Churchill]

As anybody will know, I have been heavily engaged with the dental profession over recent months, because I agree that a preventive approach to dentistry is certainly one that we need to be moving towards. The activity target is expected to increase availability for patients, who are the important part of the equation. It is important that we support the profession but enable patients to have access and reduce waiting times and backlogs. The target is based on careful modelling—on data—and takes into account guidance on infection prevention and control and social distancing measures. We recognise that there may be exceptional circumstances, which is why there are exceptions to the target level. NHS commissioners have the discretion to deal with exceptions and support dental practices. I have a meeting with everyone again on Thursday.

[Mark Pawsey (Rugby) (Con)]

What steps he is taking to ensure that improvement work on district hospitals is taken forward under the health infrastructure plan.

[The Minister for Health (Edward Argar)]

Alongside our investment in 40 new hospitals, our health infrastructure plan more broadly will deliver a long-term rolling programme of investment in health infrastructure, including our vital district hospitals—I know that my hon. Friend’s constituents are well served by the Hospital of St Cross. Hospitals have benefited from more than £600 million of critical infrastructure risk funding, including for district hospitals, and will shortly receive their capital allocations for the forthcoming financial year.

[Mark Pawsey [V]]

I am grateful to the Minister for his reply. As he says, it is entirely right to be investing in the new hospitals—the 40 new hospitals for our NHS. He referred to our brilliant local district hospital, St Cross. The past year has reminded us of the importance of a well-resourced local health service. How can we ensure that existing district hospitals doing great work, such as St Cross, continue to receive the investment they need?

[Edward Argar]

I am grateful to my hon. Friend for his question. May I join him in paying tribute to his local Hospital of St. Cross and the team who have done an amazing job in very challenging circumstances over the past year? I know that he is a strong champion of it and of his local NHS—I think I can recall him volunteering at the Locke House vaccine centre recently in support of his NHS. Of that critical infrastructure funding to which I referred, £2.2 million was allocated to his trust and local hospital. As I mentioned in my initial answer, we will be making further capital allocations shortly, which will benefit district hospitals, including his own.

Covid-19 Update

Mark Pawsey Excerpts

Tuesday 2nd February 2021 Commons Chamber

[Matt Hancock]

The hon. Gentleman was doing so well: I agreed with all of what he was saying until the last bit. Of course the Prime Minister is going to go around the country and thank people for what they are doing. We just heard from my hon. Friend the Member for Dewsbury (Mark Eastwood) about the very positive impact the Prime Minister had during his visit to Dewsbury. I know that people across Scotland were very enthusiastic to see the Prime Minister visiting Scotland to say thank you to those working in the labs, on the testing and on the vaccinations. Perhaps the Prime Minister will come to Huddersfield and the brilliant vaccination centre there. If he cannot make it, perhaps I should go there, with the hon. Gentleman, to say a great big thanks. Travelling around the country to thank people for their efforts is an important part of keeping the nation going in these difficult times.

[Mark Pawsey (Rugby) (Con) [V]]

There is more positive news because among the half a million vaccinations provided across the country last Saturday were 750 at Locke House in Rugby, where more than 11,000 have already been given and priority groups 1 to 4 will be completed ahead of schedule by this time next week. Will the Secretary of State thank the GPs and everyone involved in this achievement, particularly the 100 or so volunteers at the site, who have turned out for long shifts in all weathers, led by the inspirational centre manager, Gita Natarajan? Could he say a little more about the steps being taken to ensure that the second dose of the vaccine will be of the same variety as the first?

[Matt Hancock]

I have always loved Rugby, and the idea that Rugby is going to deliver on everyone in categories 1 to 4 having an offer of a jab a week early is music to my ears. I am delighted to hear about it. I can absolutely confirm that we have confidence in the supplies of vaccine to ensure that everybody can get a second jab of the vaccination they had the first time, unless there is a specific clinical reason not to; that would happen only in very rare circumstances. The plan is that you get the same jab second time around as you got the first.

Covid-19 Update

Mark Pawsey Excerpts

Tuesday 10th November 2020 Commons Chamber

[Matt Hancock]

That is a very good question from the Chair of the Public Accounts Committee—I would expect nothing less. The critical answer to how long this takes is that it depends on the speed of manufacture in the first instance. My goal, and the goal I have set the NHS, is to be able to roll this out as quickly as it can be manufactured. That manufacturing schedule is uncertain because this is really hard stuff to make. We have got the Major Projects Authority in the Government involved in many of the projects that we have built up in the Department over the past nine months, because I respect its views and its ability to kick the tyres. The roll-out of the vaccine is a huge endeavour, but it builds on the annual roll-out of the flu vaccine—it is just bigger and needs to be done faster.

[Mark Pawsey (Rugby) (Con)]

The past few months have been a rollercoaster ride for families, businesses and public services as they have tried to make plans for the future. The Secretary of State has rightly spoken of the need for caution about the role of the vaccine, but I think what my constituents would like to hear from him, if he is able to say, is when they can safely start to consider family events and holidays and when businesses will be able to get back to something like business as usual.

[Matt Hancock]

I understand the yearning for certainty. All I can say to my hon. Friend, in honesty, is that I want us to get back to normal as quickly as possible, and yesterday’s news is a big step forward, but it is not the only step. There are more steps that are needed. The scientists are now offering views on that sort of timetable, but the Government’s view is that we must make this happen as quickly as possible and be ready to roll out as fast as any safe vaccine can be manufactured, but we will not put safety at risk. That is a lodestar of the programme and therefore we have to await the clinical safety sign-off before we can take this to the next stage.

Covid-19 Update

Mark Pawsey Excerpts

Programme motion
Monday 19th October 2020 Commons Chamber

[Matt Hancock]

The hon. Lady raises a point that is heart-rending and important, as is the protection of care home residents from this disease. The situation is not quite as she said, in that we have different restrictions in different areas according to local circumstances, with a great deal of delegated authority to the local director of public health to make judgments on the extraordinarily difficult balance between allowing visitors—for exactly the sorts of reasons she set out—and protecting people who live in care homes from catching the disease. When the case rate is high in the community, that naturally increases the risk in care homes, not just because of visitors but because the staff working in care homes live in the community. I am sure she will agree that the best thing we can do is to keep the prevalence of coronavirus down, because that will help to protect the people in care homes as well.

[Mark Pawsey (Rugby) (Con)]

This time last week, I think the whole House welcomed the introduction by the Prime Minister of the three covid alert levels to provide some certainty about the levels at which measures would be introduced and what measures would apply in a given area. Rugby is currently on a downward trajectory, with fewer than 100 cases per 100,000, so can my right hon. Friend reassure my constituents that by sticking to the rules, we will remain in tier 1?

[Matt Hancock]

Yes. One of the advantages of the tier system is that it not only involves a clear set of actions that need to be taken if the cases go up, as happened in London last week, but also helps to motivate people in level 1 areas that in order to stay in level 1, the best thing to do is to follow the rules, to respect social distancing and to play their part in the reduction of the spread of the virus. Everybody who is living in a level 1 area can help to do their bit to stay in level 1 by following the rules on hands, face and space and following social distancing. My hon. Friend is absolutely right to point that out for Rugby, but the point applies right across the whole of England in areas covered by level 1.

Covid-19

Mark Pawsey Excerpts

Monday 28th September 2020 Commons Chamber

[Mark Pawsey (Rugby) (Con)]

It is a pleasure to follow the hon. Member for Bradford West (Naz Shah) and to take part in this overdue and heavily subscribed debate. Parliament must have its say on behalf of our constituents.

I want to talk about recent experiences in my constituency through meetings with leadership teams in local councils, regular briefings with health departments and contact with constituents. It is fair to say that since the start of the pandemic six months ago, Rugby residents have done the right thing and followed Government guidance. As a result, statistics for between March and September show Rugby in a positive light. However, as we came out of lockdown and testing increased significantly, the number of cases in Rugby rose sharply. We are currently running at 63 cases per 100,000 of the population compared with a Warwickshire average of 36. That is quite a shock, given where we had been, and a challenge to us to understand what has changed.

We recognised the change with the reopening of pubs and schools and we have separately identified some other outbreaks. Parents in Rugby desperately wanted their schools to open safely and we should pay tribute to the teachers who enabled that to happen. The significant long-term damage to our children’s life chances if they miss out on education is clear, as are the negative effects of being out of school. To date, transmission among young children in Warwickshire is minimal. There have been only 60 confirmed cases in the nought to nine age group and a further 175 confirmed cases in the 10 to 19 age group. We know that children under the age of 18 make up only about 2% of cases worldwide. Getting children back into school has been important.

I mentioned the increase in cases in Rugby. Our rolling daily average has increased from 1.6 new cases on 20 August to 8.4 on 17 September, with 64 new cases recorded over the last seven days, and 610 cases in Rugby borough out of a population of 108,000. Public health officials have been quick to act and we have been able to identify that the vast majority of cases are in the 17 to 19 age group, with real concerns about the knock-on effect on transmission to older age groups, particularly their parents. As a consequence of test and trace, we have been able to identify the origin of those transmissions as young people congregating in the car park of a local retail park. Youngsters have always done that. It seemed to disappear but has recommenced. They have been isolated; they have not been able to communicate. One of the things they have done is to show off each other’s cars, and they have moved in and out of their cars. Generally, young people have been supportive of the rules, but they have had their freedoms constrained for many months. It was inevitable that when the stricter regulations were lifted, they would look to meet up with their friends and socialise.

What action is Rugby now taking? We are working very hard on social media messaging and targeting the areas of the town where the highest number of cases have been confirmed. Through test and trace, we are able to identify transmission in pubs, particularly where small groups have moved between venues while enjoying a night out. I share the concerns that many Members have raised about the arbitrary nature of the 10 o’clock curfew. Despite the rise in cases in Rugby, it remains important to keep the statistics in perspective, with only 0.6% of the population having confirmed cases of the virus and 0.7% of the population having tragically lost their lives. There has not been any significant increase in hospitalisations. We must do what we can to ensure that we get our town back to the level we were at in March and April, in the early stages of lockdown, with the community coming together. We have set up a weekly multi-agency management team, and we will have a daily walk-in test centre in the town within a number of days. My message to Rugby residents is to be vigilant, follow the guidance, and do all we can to protect and shield the elderly and most vulnerable.

Coronavirus Response

Mark Pawsey Excerpts

Monday 20th July 2020 Commons Chamber

[Matt Hancock]

I am glad to say that the vast majority of people respond positively to the public health messages that we have been putting out throughout, and it is a very important part of the policy.

[Mark Pawsey (Rugby) (Con)]

The Secretary of State reminded us of the importance of a vaccine. I was interested to hear on the radio as I drove into Parliament today a representative of a drug company saying that we might have a vaccine by October and a doctor based at a university telling us that today is a great day. Does the Secretary of State agree?

[Matt Hancock]

I am cautiously optimistic. The team are optimistic. My job is not to speculate on the likelihood of the Oxford vaccine coming off. It is to make sure that, should it come off, we are ready.

Genetic Haemochromatosis

Mark Pawsey Excerpts

Wednesday 3rd July 2019 Westminster Hall

[Mark Pawsey (Rugby) (Con)]

It is a pleasure to serve under your chairmanship, Mr Sharma. It is a great privilege to secure this important debate on genetic haemochromatosis. I chair the all-party parliamentary group for genetic haemochromatosis (iron overload). I want to raise awareness of the condition, within Westminster and beyond. I will explain what genetic haemochromatosis is and its prevalence within the UK. I will also look at how the condition fits into the NHS priorities. I will conclude with three asks to the Minister on behalf of the charity Haemochromatosis UK, which is represented here, and the APPG.

Until recently I knew nothing about the condition. Two or three years ago I visited the charity Haemochromatosis UK, which was based in my constituency, and the condition was explained to me. The lack of awareness of the condition and the importance of early diagnosis were brought to my attention. As a consequence of those discussions with the charity and some other hon. Members, some of whom are here, we formed the APPG earlier this year.

The APPG was based on the report published by Haemochromatosis UK in October 2018, which highlighted the previously underestimated impact of the condition, in terms of the number of people affected and the chronic effect it has on people’s lives. The APPG first met in January and we met again in May to talk about the adoption of clinical guidelines, which I will refer to later.

What is genetic haemochromatosis? It is a genetic condition in which the body fails to control the absorption of iron. Some hon. Members may have heard it described as iron overload or iron overload disorder. Iron builds up within the body and reaches a highly toxic level. That can lead to a multitude of different health problems. Iron builds up particularly in the liver and the damage is progressive. At its worst, iron overload can kill through liver and heart failure.

[Bob Stewart (Beckenham) (Con)]

I stand as an ignoramus on this matter, but I want to support my hon. Friend who is leading the debate, and I want to know more about the matter. Is this something that is in a baby from birth, and if not, what is the normal age at which it develops?

[Mark Pawsey]

This is a genetic condition that becomes apparent in some people who possess the gene. People are affected to a variable degree. I will come on to some of the debilitating consequences of genetic haemochromatosis, which include arthritis, joint pain, diabetes, fatigue, psychological or cognitive difficulties, skin conditions, menstrual problems in women, impotence, breathing and heart problems, abdominal pain, liver problems and hair loss.

Just because the condition is not widely spoken about, in either medical or public life, that does not mean that it is not prevalent in the UK. The white UK population of north-European extraction, particularly people of Celtic extraction, gives the UK the highest prevalence anywhere in the world. The condition is found around the world wherever the Irish and Celtic population has migrated to, including Australia, the Americas and South Africa.

One in eight people in the UK carry a faulty copy of the GH gene. That faulty gene is known as HFE. One in 200 people carry two faulty copies of the HFE gene. Those are the people at risk of iron toxicity. In layman’s terms, people must have two copies of the gene in order to be affected by the condition. It is estimated that around 380,000 people worldwide have the genetic haemochromatosis mutation. Of those 380,000 people, 200,000 are under 40 years old, which is why early diagnosis is important. If we can diagnose the condition early, people will not be overlooked and can attend to their symptoms.

[Rachel Maclean (Redditch) (Con)]

I congratulate my hon. Friend on securing the debate. I thank him for outlining, for those of us who do not have as much knowledge, how prevalent the disease actually is and how important it is that we get services and treatment right. I thank my constituent Roger Keyte, who is a trustee of Haemochromatosis UK. He has done a good job educating me. I thank him and others who are working hard to help the many people who are affected.

[Mark Pawsey]

My hon. Friend is exactly right. That charity, which serves to raise awareness, has done a fantastic job, and that includes her constituent. I should point out that this is a condition rather than a disease, because a disease may be considered to be contagious.

I mentioned that the prevalence is higher in Ireland. According to the Irish Haemochromatosis Association, in Northern Ireland one in five people are carriers. The incidence among people of Celtic origin leads to some people referring to genetic haemochromatosis as the Celtic curse, a term that is not looked on favourably, but does underline the prevalence among Irish, Scottish and Welsh people, and the need for them and their doctors to be aware of the condition. I am delighted to see hon. Members representing Welsh and Scottish constituencies here, some of whom I know will contribute to the debate.

I have already mentioned that the condition is poorly diagnosed. Recent research shows that at least 45,000 people affected in the UK are loading iron as their bodies fail to control the absorption. Only 10% to 13% of these cases are diagnosed. For every patient diagnosed, between eight and 10 have the symptoms but have not been diagnosed. They are suffering unaware of what is happening to them.

Dr Ted Fitzsimons of the University of Glasgow has done a great deal of work in this area. He highlights that 80% to 90% of individuals who have this condition are unaware that they have it. They do not know what it is. They know the symptoms, which affect them, but they do not have an explanation for them.

Professor David Melzer, from Exeter University, and the Haemochromatosis Research Group have conducted a UK Biobank study of half a million patients, which was published in January 2019. They found that people with the double haemochromatosis mutation had four times the risk of liver disease, twice the risk of arthritis and frailty among older age groups, and a 50% higher risk of pneumonia and diabetes compared with those who do not suffer from the condition. In the UK, there are currently 136,000 people with the condition aged 40-plus. The study found that of that generation of 136,000, approximately 12,200 will have had a hip replacement, which they would not have needed if they had been diagnosed earlier and treated for iron overload. However, the study has a caveat, as there is uncertainty about whether all those operations would have been avoided by early diagnosis. But as with any condition, we know that early diagnosis is crucial.

[Liz Twist (Blaydon) (Lab)]

Two of my constituents, Jane and Andrew, have haemochromatosis and have contacted me about this debate, stressing the importance of early diagnosis. Does the hon. Gentleman agree that it can be difficult sometimes for people to be clear about the symptoms, therefore making it can be difficult to get a diagnosis, and that we must work on that?

[Mark Pawsey]

The hon. Lady is exactly right. Very often, people suffer from the symptoms and persevere. They feel tired and just generally unwell, but they do not know why they are affected, so awareness of the condition among the medical profession when people present with those symptoms is vital in identifying those affected.

In terms of the additional demands placed on the NHS, we can estimate an extra 564 patients diagnosed with liver disease and 125 new liver cancer patients every year from among those with the condition. If we can diagnose it, enable patients to be aware of it and deal with it earlier, we can prevent it from making such a substantial demand on the NHS.

[Bob Stewart]

I congratulate my hon. Friend on securing this debate. As I am half-Scottish, have had my hip replaced and feel tired most of the time, I am worried, but not as worried as doctors must be, because it seems to me that if someone goes to a general practitioner with normal symptoms like that, it must be bloody difficult for them to diagnose the condition. Everyone here is nodding, so I presume that is right.

[Mark Pawsey]

My hon. Friend makes a valuable point. Next time he visits his GP, he can ask, armed with the knowledge that he has as a consequence of this debate, whether the condition might be something to consider.

Let me turn to the cost saving to the NHS. The basic test for iron levels in blood would cost only £1 per patient if routinely done at the same time as other blood tests. The test is not commonly done; perhaps it should be. Iron testing could be added to the NHS health check, which people receive at the age of 50. That might provide a pointer to some of the symptoms that my hon. Friend has referred to.

The UK Biobank study also indicates that the HFE gene is associated with significant morbidity, in particular associated arthritis and liver disease. Of course, because of the influence of the liver, there is a highly increased risk of liver cancer compared with the general population. There are approximately 6,000 cases of liver cancer per annum nationally, and the outlook for those with liver cancer is particularly poor. The survival rate for liver cancer is among the lowest of all cancers. Professor Ted Fitzsimmons of Glasgow University estimates the cost of a liver transplant at around £100,000. That is a broadbrush estimate, which excludes personal costs such as loss of employment and the need for family members to help with caring. Again, we know that early diagnosis could not only improve the lives of those affected but result in significant savings for the NHS.

Since my involvement with genetic haemochromatosis began, one thing that has had an impact on me is the stories of patients affected by it. I will read out a couple of patient testimonies. One comes from another trustee of Haemochromatosis UK, Michelle Weerasekera. This is her account:

“I was diagnosed with genetic haemochromatosis after suffering from chronic fatigue for some time. I had visited my GP and been told to take folic acid and wouldn’t have returned had I not had a routine blood test carried out for an insurance policy that I was taking out.”

She therefore became aware of her condition accidentally. She continues:

“I returned to my GP, who, thinking that I may be anaemic, ran a ferritin test. This showed that my results were elevated and I was referred to a Haematologist. I had a FerriScan carried out which showed some stored iron in my liver but luckily with regular venesections”—

the taking of blood—

“over the last eighteen months I have managed to reduce my ferritin levels and am now in what is called the ‘maintenance phase’. I hope to soon become a regular blood donor”—

an issue that I will raise with the Minister later on—

“so that my blood can be put to good use. I know how lucky I have been by being diagnosed when I was. Having talked to my GP since diagnosis, I know that Haemochromatosis was not on his radar and this is why raising awareness is so important. Had I not returned to the GP, my body would have carried on storing iron and the outcome and my future health may have not have looked so positive.”

The second piece of testimony comes from another patient with genetic haemochromatosis, a young woman. Katharine Hough is only 27 and has had to fight to be taken seriously by the medical profession, largely because genetic haemochromatosis generally affects older people. The key point about Katharine’s concerns is that she is relatively young. She says:

“Despite the advantage of being diagnosed young, I have often had to fight to be taken seriously by the medical profession. Doctors seem to think it will not affect me as I am young and they are accustomed to solving health issues rather than helping to maintain good health and prevent problems.

I have had many cases where specialists think that, as I am a young woman and my symptoms are not as severe as those suffered by older people, I am healthy and have nothing to worry about. But I am only 27...If they stop and think for a moment to consider it, I should not have joint pains, and my knees should not hurt when I walk. I want to prevent further damage and not wait until my symptoms are very bad…It is my health and only I can fight for it.”

Both these stories highlight the importance of early diagnosis and increased awareness of the condition among GPs and other medical professionals.

The frustrating thing is that in a large number of cases treatment will alleviate many of the symptoms. The earliest intervention prevents many of the problems that I have described, including the build-up of iron in the liver and heart. In the vast majority of cases, treatment is venesection, which is essentially giving blood. Done intensively, this removes excess iron from the body effectively. Done regularly, it will maintain iron levels. In simple terms, the body uses some of the stored excess iron to make red blood cells to replace those that have been removed.

Venesection is a safe and proven procedure. It is similar to donating blood, as those of us who donate blood will realise. The blood taken from a haemochromatosis patient is perfectly useable and would go some way to addressing NHS blood demand. However, blood taken in a venesection clinic is discarded, which does not seem to make sense. I will come back to that in my final remarks and asks of the Minister.

Why is this condition not higher on the UK health agenda? There are many and varied reasons, but one key reason is the lack of consistent clinical guidelines. What protocols exist are often non-mandatory, related to an individual trust, inconsistent and poorly adopted. The University of Exeter has conducted some research into the impact of iron overload, which shows wide inconsistencies in the experience of patients, and the prevalence of chronic symptoms arising from non-diagnosis is much higher in the UK than was previously thought. I am looking for the Minister to respond to the point about introducing guidelines. If there were guidelines, that could increase diagnosis perhaps as much as tenfold. That would prevent many people from developing the follow-on conditions, such as cancer, heart failure and diabetes, that I have referred to.

A consultant rheumatologist at St George’s Hospital in London, Dr Kiely, says that the cost of a typically large joint replacement is in the order of £10,000—which may be of interest to my hon. Friend the Member for Beckenham (Bob Stewart). Dr Kiely has also said that the big impact on healthcare costs would be in primary care, from delays in diagnosis. Those who suffer from genetic haemochromatosis suffer from less productivity when they are at work. They often have to take time off work, but also often want to continue at work. That leads to presenteeism, where people turn up for work but are ineffective because of the debilitating conditions that they suffer from. All those are costs to society, and are burdens that patients have to deal with.

A January 2019 editorial in The Lancet on gastroenterology and hepatology said:

“We wholeheartedly support the need to increase education and awareness of genetic haemochromatosis among clinicians to improve early diagnosis. The necessary tools are in hand, the guidelines are clear, and”—

very significantly—

“their implementation would be…cost-free. It is difficult to imagine a clinical problem that represents lower-hanging fruit for the…NHS. As such, there is no time like the present to elevate the priority of genetic haemochromatosis on the UK healthcare agenda.”

Professor Ted Fitzsimmons of the University of Glasgow, who attended the most recent meeting of the all-party parliamentary group for genetic haemochromatosis, has produced a set of guidelines for this condition. Those guidelines have been endorsed by a number of professional medical bodies, and the APPG would like them to be adopted and expanded on by the National Institute for Health and Care Excellence in order to improve and increase diagnosis, and to improve and, importantly, standardise care after diagnosis. We believe that doing so would put genetic haemochromatosis higher on the NHS agenda.

This condition fits into two of the priorities of the NHS long-term plan. First, the plan talks about prevention. Prevention of genetic haemochromatosis affecting patients means effective diagnosis before the damage is done. If we can identify it, we can save the NHS money and ensure that patients’ health is protected early. The Secretary of State for Health and Social Care drew attention to that in November last year, when he said that

“if we get prevention right, it holds the key to longer, healthier, happier lives and a sustainable, high quality health and care system… It’s why…I made it one of my big three priorities”.

There is no easier win than adopting prevention for this condition.

Another NHS priority is supporting people to age well. The University of Exeter report highlighted the impact of genetic haemochromatosis on our ageing population, and we know that the condition affects arthritis and frailty in older age groups and increases the risks of diabetes and chronic pain. It is an issue that we need to address.

My three asks of the Minister, which I hope she will respond to in her remarks, are as follows. First, what steps can she take to ensure that those who are affected are promptly and correctly identified, regardless of where they live? We have already heard that early diagnosis saves lives, yet so frequently people with genetic haemochromatosis suffer needlessly as a consequence of late diagnosis. Secondly, what steps can she take to encourage the NHS to adopt, share and embed the best practice we have referred to, both through screening and associated therapies, to ensure that venesection is available? We know from Haemochromatosis UK’s 1,800 members that NHS standards vary widely across the country. With a single system, we could offer a consistent, world-class approach.

That brings me on my third point. How can the Minister encourage different areas of the NHS system to collaborate more effectively to realise the economic benefits of joined-up care, and also the benefits to the patient? One example would be making use of the blood taken during venesection, incentivising NHS Blood and Transplant to make greater use of genetic haemochromatosis patient blood to meet ongoing needs. It is astounding that the blood collected is wasted. That distresses many of the people affected by genetic haemochromatosis, who take the view that if they are going to have their blood taken, they would love for it to be used productively to support other patients.

Mr Sharma, I know that other Members wish to contribute. I look forward to the Minister’s response to our asks at the conclusion of the debate.