Genetic Haemochromatosis

Part of the debate – in Westminster Hall at 5:12 pm on 3rd July 2019.

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Photo of Gavin Newlands Gavin Newlands Shadow SNP Spokesperson (Sport), Shadow SNP Spokesperson (Northern Ireland), Shadow SNP Spokesperson (Wales) 5:12 pm, 3rd July 2019

Thank you, Mr Sharma; it is a pleasure to see you in the Chair. I will start, as is customary, by congratulating Mark Pawsey, who chairs the all-party parliamentary group on genetic haemochromatosis, not only on securing today’s important and historic debate, but on setting out in such detail the nature of the condition, its prevalence, the symptoms and the available treatments, such as they are.

The hon. Gentleman spoke of the great work of Professor Ted Fitzsimons at the University of Glasgow, and of the fact that not only do the majority of people with the condition not know they have it, but thousands of hip replacements may not have been required, as my hon. Friend Ben Lake also mentioned. I wholeheartedly endorse the three asks that the hon. Member for Rugby made of the Minister, and I look to forward to hearing her response.

Liz McInnes spoke of research involving nearly 3,000 individuals and the possibility of screening for GH, as I will call it from here on in to avoid tripping over it. She concurred with the hon. Member for Rugby that, given the symptoms, without screening the condition will remain difficult to diagnose.

My hon. Friend Martin Docherty-Hughes spoke of his fair skin and freckles, and of being a ginger. He also spoke of the Celtic curse. I am not sure about the Celtic curse, but he is certainly known for his Celtic verse, as we heard during his contribution. He also spoke of his constituent, David McAleer, and his GH story, and of Scotland’s relationship with alcohol, and what we are doing to tackle that.

My hon. Friend the Member for Ceredigion—I never pronounce his constituency correctly—spoke of how, for every person diagnosed, around eight to 10 go undiagnosed. He also mentioned the serious impact that iron toxicity has on health and wellbeing.

I, too, am a member of the all-party parliamentary group. The reason I am a member is because my dad has genetic haemochromatosis. I have not been tested myself yet, but I should, and will, endeavour to do so at some point in the near future. My dad was unaware of his condition; it turned up in a routine blood screening. He felt fine and had no symptoms that he was aware of at that point. My dad had further checks, including several ultrasounds, an endoscopy and a liver biopsy. When he was diagnosed, he did some digging around on the internet and found that he absolutely should not touch oysters. Google says lots of things, but apparently oysters could prove fatal. He told me and I had a look, and it also said that he should regulate his alcohol intake. When I pointed that out to him, he did not want to know that fact, but he was quite happy to accept the point about oysters—that is my dad for you.

My dad was not put on medication. We have already heard that the treatment is venesection. I am told that the normal ferritin level is around 50 to 60, or thereabouts, but when my dad was diagnosed his level was around 2,400, so it was quite high. He still did not have any symptoms at the time. He went on a weekly course of bloodletting for some time, and his levels are now normal. All he does now is go for a venesection every few months and watch his diet, particularly breakfast cereals, most of which are fortified with iron. Most concerning for him is the fact that he cannot eat Stornoway black pudding any more.

As we know from everyone who has spoken so far, early diagnosis is key. The Scottish National party welcomes the debate, as it offers an opportunity to raise awareness about GH and its symptoms for the first time in the history of the House of Commons. We also welcomed the “Living with the Impact of Iron Overload” report released last year.

Early diagnosis would reduce the demand on primary care services from tens of thousands of chronically affected patients, for whom the underlying cause of GH remains unidentified. Some Members have already outlined the substantial economic benefit of early diagnosis on top of the health benefits to the individual. The cost of a blood test to detect iron overload at an early stage is a few pounds at most. The cost to the NHS of a liver transplant, arising as a result of the lack of early diagnosis, could be close to £50,000.

The Scottish Intercollegiate Guidelines NetworkSIGN—collaborates with clinicians and health and social care professionals to develop evidence-based guidelines. Were SIGN to publish guidelines regarding GH, we would welcome that. Introducing guidelines would have the potential to increase diagnosis as much as tenfold.

I thank the hon. Member for Rugby again for introducing this important debate and for bringing this condition to the attention of the House. I look forward to working with him and the rest of the APPG in keeping the pressure on the Minister, the Government and the NHS.