Genetic Haemochromatosis

Debate between Bob Stewart and Mark Pawsey

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.

--- Later in debate ---

[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.

Cycling

Debate between Bob Stewart and Mark Pawsey

Monday 2nd September 2013 Commons Chamber

[Mark Pawsey (Rugby) (Con)]

One of the objectives of today’s debate is to increase the proportion of journeys that are made by bike, and to persuade people to use their bikes more regularly. That makes me part of the target market. Unlike my hon. Friend the Member for Carlisle (John Stevenson), I am not a regular cyclist. I would describe myself as a fair-weather cyclist who cycles infrequently on country lanes for the purpose of exercise or enjoyment.

[Bob Stewart (Beckenham) (Con)]

Let me make this announcement immediately: I am going to dust off my old bike and get cycling. That will help me to live for two more years.

[Mark Pawsey]

The debate has already achieved part of its objective, Madam Deputy Speaker. We have a new cyclist on our Benches. However, if we are fully to realise the objectives set out in the motion, people such as me must be encouraged to ride their bikes more.

The inspiration that led me to use my bicycle more came during the recess. A couple of weeks ago, on a Thursday, I read an article in The Times by Dame Kelly Holmes, encouraging Members of Parliament to ride our bikes before participating in the debate. I had intended to drive the six miles or so from my home to the constituency office, but that day I decided to cycle. I should add that the weather was very good during August, and that the sunshine made my decision a great deal easier.

I have a number of observations to make following that experience. Travelling down Dunchurch road in Rugby in a cycle lane, I noticed that other cyclists were still on the road. I asked myself why those guys were still on the road when I was going down the cycle lane, which is half on the footpath. Then I realised that there were “Give way” lines on the side roads, and that I was having to give way to the cars that were coming out of them. Had I been on the road, I would not have had that problem. The other cyclists were making much faster progress than I was. Perhaps the Minister will explain why cars coming out of a side road have priority over the cyclists on a cycle way.

Summer Adjournment

Debate between Bob Stewart and Mark Pawsey

Thursday 18th July 2013 Commons Chamber

[Mark Pawsey (Rugby) (Con)]

I rise to draw attention to an issue to which I drew attention in the last debate on matters to be raised before the Adjournment, which took place on 26 March. On that occasion I drew the House’s attention to concerns about the consequence of an EU directive on people’s ability to continue to use what was then, and still is, a relatively new product, namely electronic or e-cigarettes. Members will remember that an e-cigarette is an alternative to a conventional tobacco cigarette and consists of an electronic inhaler that vaporises a liquid into an aerosol mist, enabling the user to enjoy nicotine in a far safer form.

I return to this topic because, in addition to the EU legislation, there is a now a proposal by the UK’s Medicines and Healthcare products Regulatory Agency for e-cigarettes to be considered as medicinal products. The EU directive seeks to lay down a legislative framework for the manufacture, presentation and sale of tobacco products. However, e-cigarettes are not tobacco products. Bringing them into line with their more dangerous counter- parts—standard cigarettes—will see the consumption of e-cigarettes drop. That means that people who currently use them safely will no longer be able to do so. If the MHRA’s proposal goes through, e-cigarettes will have to go through an expensive and time-consuming procedure to be approved as medicines. If that procedure makes them more difficult to obtain, smokers will simply continue to smoke tobacco.

It is important to remember that e-cigarettes were not developed as a medicinal product. Indeed, I heard them described at a seminar the other day as simply an “enjoyable consumer product”. However, their regulation as medicinal products would raise costs, reduce the diversity of products available, slow down innovation and inhibit creativity, and, in doing so, make them less appealing to the very people hoping to switch to them. These are by-products of the law of unintended consequences. More people will revert to tobacco.

Beyond that, the MHRA recommendation is for people “not to use”—that is its advice—the current generation of e-cigarettes available on the market. Its group manager of vigilance and risk management of medicines told a press conference held to announce the MHRA’s recommendations:

“We can’t recommend these products because their safety and quality is not assured, and so we will recommend that people don’t use them”.

However, that was despite the MHRA’s impact assessment giving no evidence of any harm caused by the use of e-cigarettes. In fact, Professor Robert West of University college London says that for current e-cigarettes “the risk is negligible”. Indeed, the NHS’s website states that their toxicity is one thousandth that of tobacco cigarettes.

One consequence of the MHRA’s recommendation has been that a major supermarket chain removed e-cigarettes from its pharmacy shelves, while a survey of 700 pharmacists has shown that 99.5% are declining to stock e-cigarettes because of the announcement. There is an emerging industry manufacturing e-cigarettes, which predicts that the reduction in their use caused by the MHRA’s recommendation will cost the NHS £2.5 billion, owing to fewer people giving up smoking tobacco. E-Lites, the largest producer of e-cigarettes, now forecasts a substantial reduction in the growth of the market. On its figures, 390,000 fewer people will be using e-cigarettes by the end of the year, compared with what would have happened without the MHRA’s recommendation.

[Bob Stewart (Beckenham) (Con)]

Someone has to regulate e-cigarettes, but if they are not regulated as a medicine or cigarettes, who will do it?

[Mark Pawsey]

E-cigarettes are currently regulated in the same way as standard consumer products, and are subject to local authorities, trade descriptions and so on.

Users are concerned that it will become harder for them to access e-cigarettes in their bid to wean themselves off smoking, as the alternative of e-cigarettes will simply be more expensive. The directive is also of great concern to a number of small businesses, in particular a business based in my constituency called Smoke No Smoke, to which I referred when I last spoke on this issue. Its entrepreneurial owner, Jim Lacey, is facing a threat to the future of the business that he has worked so hard to build up. The feedback from his customers is that they will be unable to access the product. There is a danger that that will force the e-cigarette trade underground. If e-cigarettes were produced in an illegal market, it would be difficult for people to know where they had come from.

This is not the time to introduce these regulations. I urge the Government to look more closely at what they can do to avoid the implementation of the directive.

2nd Battalion the Royal Regiment of Fusiliers

Debate between Bob Stewart and Mark Pawsey

Thursday 18th October 2012 Commons Chamber

[Mark Pawsey (Rugby) (Con)]

It is a great pleasure to follow my hon. Friend the Member for South Dorset (Richard Drax) and to be part of the Warwickshire tail-end to this debate. There is clearly strong support for the motion throughout the House, and I add my congratulations to those that colleagues have paid to my hon. Friend the Member for Basildon and Billericay (Mr Baron) for the diligence that he has shown in the campaign, the way he has brought people together and the convincing case that he has made for reconsidering the decision to disband the battalion.

I wish to speak about two matters. The first is the impact of the decision on my constituency, and the second, which we cannot avoid, is why we are in the position that we face today. Unlike many gallant colleagues who have spoken today, before my arrival in Westminster two and a half years ago I knew little of our armed services. My background had not given me that contact, so I was keen to join the armed forces parliamentary scheme to learn more. I have become attached to the Army. Through briefings on the state of our forces, visits to military establishments and, above all, the opportunity to speak to servicemen of all ranks, I have, thanks to that scheme, come to understand the bonds of loyalty and shared history between servicemen that were mentioned by my hon. Friends the Members for Reigate (Mr Blunt) and for Portsmouth North (Penny Mordaunt). I have also come to understand why these issues are so important to so many of those who are involved in the services.

Of course, these issues are important to my constituents, too, as the regiment was formed when the Royal Warwickshire Regiment joined with others in 1968. Rugby has many connections between the town and the regiment. Rugby is a two-tier local authority and my constituency is covered by two district councils, both of which, along with the county council, have passed motions in full council to call for the decision to be reprieved. I am sure that other local authorities in areas covered by the regiment have done the same.

The mayor of Rugby, Councillor Miss Kathryn Lawrence, wrote to the Defence Secretary on 26 September and advised him that the council had unanimously passed the following notice of motion:

“Rugby Borough Council calls upon the Ministry of Defence to reconsider its proposals to disband the 2nd Battalion of the Royal Regiment of Fusiliers and to continue to support the success and leadership shown by the Regiment in recruiting, training and retaining loyal soldiers in the County of Warwickshire.”

The council stressed the high regard in which the people of Rugby held the regiment. As a former member of the authority, I echo that and endorse those comments.

My constituency includes the village of Bulkington, which has strong connections to the armed forces and falls under Nuneaton and Bedworth borough council. That council passed a resolution on 16 October opposing the abolition of the regiment and calling on MPs in Warwickshire, including myself, to oppose the proposal in the House of Commons, which I know we will do.

Warwickshire county council passed its resolution on 25 September, drawing attention to the signing of the armed forces community covenant in Warwick earlier this year. The connection between my constituency and those of my colleagues and the regiment is strong, as it is in Northumberland, the broader west midlands, London, south Lancashire and greater Manchester. We all have families who are linked to its survival.

[Bob Stewart]

I remind the House that the Royal Warwickshire Fusiliers, the 2nd Battalion the Royal Regiment of Fusiliers, was also the parent regiment of Field Marshal Montgomery. Perhaps he will be spinning in his grave.

[Mark Pawsey]

I thank my hon. Friend for reminding us all of the role of such a distinguished member of the armed forces.

In Warwickshire, we were proud to host the regiment on its homecoming parade when it returned to the UK after its tour of Afghanistan in 2009. It marched through Coventry, Nuneaton, Leamington Spa and Stratford-on-Avon, as well as my constituency and home town of Rugby. On Friday 1 May, I was proud to be in the crowds outside Rugby town hall, applauding its achievements while on active service.

We must not forget why the Government have been faced with difficult decisions. When we came to office, the new Government were confronted with not only a £38 billion black hole in the defence budget but the fact that no review of defence had taken place over the previous 12 years. That delay and the putting off of key decisions for so long has led to a much more severe adjustment than would otherwise have been necessary.

I fully understand that the structural changes necessary within the Army have been made to ensure we continue to have a force admired throughout the world that is properly funded. I believe the long-term future of our armed forces is far safer in the hands of this Government than it was in those of the previous Government.

This is an important debate and for the sake of my constituents and this battalion, I urge the Minister to reconsider this decision and to join colleagues from both sides of the House.