Haemochromatosis Screening
Debate between Torcuil Crichton and Jim Shannon(3 days, 5 hours ago)
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Torcuil Crichton (Na h-Eileanan an Iar) (Lab)
I ought to begin with an explanation of what is a very long word. Put simply, haemochromatosis is too much iron in the blood—haemo, blood; chroma, iron; and tosis, too much of it. To save time and the good offices of Hansard, I will refer to it occasionally as HCT in this debate. It is an inherited genetic condition, a disorder often known as the Celtic curse, because it is particularly prevalent in Celtic bloodlines and is common in Wales, Scotland and Northern Ireland. I think it is more probably a Viking phenomenon—an old genetic response to times of famine that we carry into modern times.
Untreated haemochromatosis can lead to several common conditions that we might describe as Scottish diseases of ill health: cirrhosis of the liver, heart disease, arthritis and so on. Once spotted, HCT is easily treated by venesection—another long word—which simply means bloodletting. About 450 ml of blood is taken off the patient at each session to chase down the iron levels in the body to normal levels. Generally haemochromatosis is asymptomatic, and without a test to measure for ferritin levels, it can be easily missed.
I have a bit of knowledge of the bloodletting side of the business, because for the past 17 years, I have been attending the Knutsford ward at the Royal London hospital on a regular basis for venesection. I am grateful to the staff there for the incredible treatment they have given me, including consultants such as Richard Marley. I am also grateful to my younger brother, Donald, who was tested and found he carried the gene in 2008.
Jim Shannon (Strangford) (DUP)
I thank the hon. Gentleman—I am not going to pronounce his constituency, as I would get that all wrong with my Ulster-Scots—for bringing this debate forward. He and I spoke last night about HCT and its prevalence. He is right that it is called the Celtic curse. Some might say that maybe I am a curse on some people. I am sure nobody would come to that conclusion. However, one in 10 people have this disorder, which features strongly among the Northern Irish, the Scots, the Welsh and even Cornish communities —all the Gaelic cousins and people. However, even with that prevalence, screening does not naturally take place and quality of life is impacted for years before someone even goes to their GP. Does the hon. Gentleman not agree that it is unnecessary to live with something that can be easily treated?
Torcuil Crichton
The hon. Gentleman’s interventions are always a blessing, never a curse. I have some information of particular interest to his part of the world later in my speech.
I have declared my interest, as I have haemochromatosis, but it is not just my experience, but that of my constituents and the make-up of my constituency in Na h-Eileanan an Iar that have spurred me to secure this debate. It is not all about me.
A groundbreaking DNA study headed by Professor Jim Flett Wilson of Edinburgh University discovered that the Western Isles are a hotspot for haemochromatosis, this genetic mutation that the body at some stage adopted for survival. People are at risk of developing the condition if both their parents have the faulty gene and they inherit one copy from each of them. They will not get haemochromatosis if only one of their parents carries the gene and they only get one copy, but there is a chance they could pass the gene on to their children. If people inherit two copies—that is, both their parents are carriers—they will not necessarily get haemochromatosis. About half of people with two copies of the faulty gene develop the condition, and it is not known exactly why.
What is known is that the Viking genes DNA study by Professor Jim Flett Wilson took DNA samples from islanders in Orkney, Shetland and the Western Isles, and it threw up some amazing discoveries. People wanted to find out if they had Viking heritage, and many sent in swab samples and filled in the questionnaires in sufficient numbers for the scientists to crunch the numbers. I did not do that myself. Feeling Viking by name and by nature, I did not think it necessary.
Analysis of the data, and cross-examination with other gene studies, showed that in Orkney and Shetland, participants in the study had rare and unique cancer genes, which led to them being alerted to their condition. The study saved lives and is credited with doing so. The good news for the Western Isles—for Na h-Eileanan an Iar—is that no rare cancer genes were found. While the results are still being finalised, it is clear that the Western Isles are a hotspot for haemochromatosis and inherited high cholesterol, which can lead to heart disease.
According to Professor Flett Wilson, the numbers in the Western Isles are sufficiently high to justify population-wide screening. For instance, one in 212 people in the south and east of England carry two copies of the faulty gene, as opposed to one in 62 in the Outer Hebrides.
Torcuil Crichton
I do indeed agree. Haemochromatosis, although widespread, was not widely known about until very recently, but genetic testing, as well as simple ferritin level tests, will inform many more people. Early intervention is vital to preventing people from developing crippling illnesses which might otherwise be wrongly ascribed to a condition other than haemochromatosis.
It is not just people such as my hon. Friend’s constituent who are affected. In Northern Ireland—or the north of Ireland, depending on how we view our maps—the situation is even more stark than it is in the Western Isles. Among the population of “Ulster Scots”, if I can call them that, there is a one in 123 occurrence of two faulty copies of the gene, which is similar to the incidence in mainland Scotland. The Catholic community in the north-west of Ireland have the highest concentration in the British Isles: one in 54 carry two faulty copies. On the basis of Professor Flett Wilson’s work, we can predict that one in 94 men in the Western Isles will develop HCT, and one in 80 men of north-west Irish ancestry—and the Irish diaspora is present in constituencies in Scotland, in London and across the United Kingdom—may have the condition, perhaps undetected and perhaps mis-diagnosed, and are possibly suffering from the long list of illnesses associated with an iron overload.
In Orkney and Shetland, analysis of the Viking genes study uncovered rare cancers and lives were saved. In my constituency, people who were found to have the HCT gene have been alerted by letter. The figures for the Western Isles do not include people who did not take part in the study, but they constitute a timely warning about the advisability of screening, a procedure that is not expensive. In the Hebrides, it looks as though we should act on the spike in iron overload. Professor Flett Wilson has recommended islands-wide screening for this common blood condition, but I want to go further: I think that everyone in the Western Isles, or Na h-Eileanan an Iar, should be screened for too much iron in their blood, but I think they should also be offered DNA tests across the board to show what other inherited conditions they might have.
Jim Shannon
I will be brief, Mr Deputy Speaker. I am descended from the Stewarts of the lowlands of Scotland, and I am probably the hon. Gentleman’s Gaelic cousin. This screening needs to be carried out in Northern Ireland as well as Scotland.
Torcuil Crichton
I do not disagree with that. Screening would be revolutionary. It would save money for the NHS in the short term and the long term, and, more important, it would save lives and put us two decades ahead of the rest of the world in preventive medicine. It would be transformative for my constituency. It would be radical, but only as radical as plans to offer every baby in the UK whole genome sequencing within a decade, a plan backed by the Health Secretary. Genomics, like these tests, would put us on the front foot in preventive medicine, as the Minister well knows. Of course it would cost money—£650 million is earmarked for the boost to genomics by the Department of Health and Social Care—but a smaller and more defined pilot scheme to lead the way in preventive medicine is to hand with the samples of high levels of HCT in the Western Isles. Given the given the cost per head of screening, it is logical that starting in the places with the highest rate of faulty genes would be the most cost-effective option.
Initially at least, the Bill ought not to go to the national health service. The bill for gene testing in the Western Isles should be part of the community payback for the large-scale wind farm developments that are planned for the islands. There are already negotiations for community benefits, community funds and community shares in the many planned wind farm developments in rural Scotland. The renewables revolution is about saving the planet, but right now the consumer offer is simply to reduce bills. By properly harnessing the wealth of wind, we can not only make communities better off but transform the life chances and health chances of people and their children.
The Viking genes results are not limited to haemochromatosis; they also showed high levels of hypercholesterolaemia in the Western Isles. That is simply inherited high cholesterol —a gene fault—that leaves many islanders, and many of my constituents, with high cholesterol and many with heart conditions, which again could be avoided with predictive medicine and early lifestyle and diet changes.
Scotland’s Architectural Heritage
Debate between Torcuil Crichton and Jim Shannon(7 months, 3 weeks ago)
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Jim Shannon (Strangford) (DUP)
The issue means a lot to my constituency, because the plantation brought my brothers and sisters from Scotland to Northern Ireland, and they brought their architecture, culture, history, poetry and music with them.
In Newtownards, the main town in my constituency, the market cross is architecturally similar to those in Edinburgh and Glasgow. The local council spent some money on it. Has the local council spent money on the project that the hon. Gentleman is discussing? Does he agree with the hon. Member for North East Fife (Wendy Chamberlain) and I that these pieces of history in Glasgow and Edinburgh—and indeed everywhere—should be preserved for future generations, and that national UK-wide funding is needed to do that?
Torcuil Crichton
I heartily agree: the links across the Irish sea between Scotland and Northern Ireland are well known, and the influence of Scottish architecture, as I will go on to demonstrate, is worldwide.
Hon. Members have talked about other stories, but above Sauchiehall Street, wrapped in a white plastic shroud, is the burnt-out shell of the Mack. The site is sealed, like a sarcophagus, against the elements. The art school board, the engineers, the architects and the firefighters have all done their utmost and the walls are still standing, but there is no sign of a phoenix rising from these ashes.
The architectural value of Charles Rennie Mackintosh’s masterpiece is recognised all over the world. It was built in two phases, from 1897 to 1899 and again from 1907 to 1909. There has never been a building like it, whether in Scotland, the UK or the world. It is the inspired design of Charles Rennie Mackintosh. He was only 29 when he started work on it, which is quite humbling. Of course he did not do it on his own and he did not spring from nowhere. Not far from here, in west Kensington, the inspiration for a young Mackintosh can be found in the work of another Scottish architect, James M MacLaren. His towers and delicate spires find an echo in the masterpiece on Garnethill, which contains strands of Japanese design, modernism, art nouveau and sheer genius.
It was by combining three elements—imagination, engineering and art; as good a definition of good architecture as one can get—that the Mack was created. Unlike many of our other monumental buildings, it actually worked. For over a century, the Mackintosh building performed the purpose for which it was designed, combining exquisite craftmanship and design while producing an incredible production line of talent.
I never attended art school, but I was a citizen of Glasgow for many years and I did live next door to the Mack for a time. The second city was my second home, and I have many lifelong friends who are graduates of Glasgow School of Art. As the song goes,
“the art school dance goes on forever”.
The Mack runs through our personal lives as much as it does through the life of the nation.
In my constituency, I have many friends who are alumni of the Mack, such as my good friend Calum Angus Mackay, a photographer, painter and TV producer, who only recently produced a retrospective of 40 years of work since he left the Mack; Roddy Murray, the director of An Lanntair art gallery, ex-Dreamboy, local hero, actor and writer; his cousin, Ishbel Murray, and her brother Kenneth, who are both teachers and fine artists; Maggie Smith, a Harris tweed designer; Kenneth Burns, a landscape painter who has chronicled Glasgow and his native islands; Christine Davidson; and many others. Outwith the islands, there is Andy Scott, the internationally renowned figurative sculpture of the Kelpies, and my friend David Pratt, a photojournalist and war correspondent, who turned his unflinching lens on the flames of the art school as it was consumed a second time.
The impact and influence of the art school has been profound on all our lives—not just on those who were lucky enough to pass through its doors. Its structure is integral to Scotland’s identity and central to the image of brand Scotland we want to portray, and an asset to the UK on the world stage.
Points of Order
Debate between Torcuil Crichton and Jim Shannon(8 months, 2 weeks ago)
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Jim Shannon (Strangford) (DUP)
Further to those points of order, Mr Speaker. On behalf of the Democratic Unionist party, I would like to join right hon. and hon. Members in expressing our sincere condolences on the death of Alex Salmond. I would like to begin by assuring Alex’s family, his wife Moira and all those who loved him that our thoughts and prayers are with them all at this time, after the sudden shock of losing Alex. We are all the poorer for his passing.
Over the years, I did a number of interviews with him in the job that he had for a certain station. Interviews with him were always enjoyable. He always had a chat beforehand about the questions he was going to ask, so that I was able to prepare the answers. He always did it with humour and it was always a delight.
I sat behind him on these Benches during the time that he and I were in this place at the same time. I had seen him only on TV and was not quite sure what sort of a person he was, so it was a pleasure to get to know him—he was most disarming. He was a colossus of nationalism, but he always asked me about the colossus of Unionism, Dr Ian Paisley—they were diametrically opposed in their politics, but in many ways they were similar. Alex’s questions were always about those he had served with and those he had the pleasure to be with. That made him much more human, perhaps, and brought the person to life more than the TV did.
As has been said, Alex was a man of great passion and a wonderful speaker. We were diametrically opposed in terms of our Unionist and nationalist views, but Alex’s passion was the stuff of Scottish folklore, and reminiscent of the rich culture of Scots in the past who gave their all for their ideal. This was a quality that I could admire, although I could never agree—but that was OK, because Alex was enough of a politician to give respect to my firmly held views on Unionism.
Alex was a man of sincere beliefs and a consummate politician, and he was also a man of great pride: he was proud of his culture, proud of his roots, and proud of what he believed Scotland had the potential to be. Today in the House, with his passing, we recognise and respect the memory of a proud, passionate politician who opposed, who led, and who inspired us all in turn.
Torcuil Crichton (Na h-Eileanan an Iar) (Lab)
Further to those points of order, Mr Speaker. May I pass on my condolences to Alex Salmond’s family, friends and former colleagues, and may I also do so on behalf of many of my constituents who would have known him and supported his cause?
As a journalist, I landed very few blows—very few journalists landed any blows—on Alex Salmond. As the right hon. Member for Orkney and Shetland (Mr Carmichael) mentioned, there was one quarrel about fishing in 1992, which was forgiven eventually in, I think, 2006, by which time Alex Salmond had transformed himself and his movement; he had stopped being thrown out of his party and thrown out of this place, and had replaced that complaint with a message of optimism, hope and self-confidence, often based on his own hope, self-confidence and optimism, and nothing more. But that great communication skill, and that ability to forgive, if not forget, and to have political opponents but not political enemies, was one of his great legacies to his party, to all of us in this Chamber and to Scotland.