Commons Sense

House of Commons · Adjournment Debate

Haemochromatosis Screening 2025-06-25

25 June 2025 · 5 other contributors

Opened by Torcuil Crichton Lab Na h-Eileanan an Iar

NHS

Summarised by AI from the official record, so it can contain mistakes.

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.

Key points

  • Haemochromatosis is a genetic condition characterized by excessive iron in the blood, leading to serious health issues if untreated.
  • Population-wide screening for haemochromatosis is recommended in the Western Isles due to a higher prevalence of the condition compared to other regions in the UK.
  • The MP suggested that the cost of DNA testing for haemochromatosis and other genetic conditions should be covered by community payback from planned wind farm developments in the Western Isles.

How the debate unfolded

MPs spoke in turn to share their views and ask questions. Here's what each person said.

Opened the debate

Torcuil Crichton Lab Na h-Eileanan an Iar

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.

Other contributors (5)
  • 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?

  • Patricia Ferguson Lab 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.

  • Patricia Ferguson Con 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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