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Haemochromatosis Screening 2025-06-25
25 June 2025
Lead MP
Torcuil Crichton
Debate Type
Adjournment Debate
Tags
NHSEmploymentClimate
Other Contributors: 5
At a Glance
Torcuil Crichton raised concerns about haemochromatosis screening 2025-06-25 in the House of Commons. A government minister responded. Other MPs also contributed.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
Opened the debate
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... 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... 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... 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... 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... 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. 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... The Viking genes results are not limited to haemochromatosis; they also showed high levels of hypercholesterolaemia in the Western Isles.
Jim Shannon
DUP
Strangford
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... Does the hon. Gentleman not agree that it is unnecessary to live with something that can be easily treated?
Rachel Taylor
Lab
North Warwickshire and Bedworth
My constituent Lorraine asked me to attend the debate. She suffers from the disease, and has found a way to manage it by donating blood regularly... Does my hon. Friend agree that genetic testing for those who are more likely to be diagnosed is essential if we are to help people lead healthy lives without the need for medical intervention?
Glasgow West
My hon. Friend makes an excellent point about the need to test in the Western Isles, and his solution of using the community payback from wind farms is an excellent idea... It is much more prevalent than any of us ever imagined, and I had never heard of it until my own brother was diagnosed.
Glasgow West
The MP supported the lead MP's call for a pilot screening programme, noting that such an approach could be beneficial given the discrete population of the Western Isles.
Jim Shannon
UUP
Strangford
The MP added support for raising awareness and implementing measures to address haemochromatosis in his constituency, reinforcing the need for better screening programmes.
Government Response
The Minister acknowledged the debate on World Haemochromatosis Week and thanked the MP for raising awareness. He explained that the UK National Screening Committee assesses evidence for national screening programmes based on internationally recognised criteria, including the condition's impact and treatment options. The committee reviewed genetic haemochromatosis in 2021 but recommended against a national screening programme due to limited evidence of its effectiveness in pre-symptomatic patients. However, new evidence can be submitted annually for review. Genetic testing is available for unexplained iron overload through genomic laboratories and venesection or chelation therapy are treatment options. The Minister commended those who donate blood as an alternative to venesection and thanked everyone involved in supporting the diagnosis and treatment of haemochromatosis.
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About House of Commons Debates
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