Genetic Haemochromatosis

Liz Twist Excerpts

Wednesday 3rd July 2019 Westminster Hall

[Mark Pawsey]

My hon. Friend is exactly right. That charity, which serves to raise awareness, has done a fantastic job, and that includes her constituent. I should point out that this is a condition rather than a disease, because a disease may be considered to be contagious.

I mentioned that the prevalence is higher in Ireland. According to the Irish Haemochromatosis Association, in Northern Ireland one in five people are carriers. The incidence among people of Celtic origin leads to some people referring to genetic haemochromatosis as the Celtic curse, a term that is not looked on favourably, but does underline the prevalence among Irish, Scottish and Welsh people, and the need for them and their doctors to be aware of the condition. I am delighted to see hon. Members representing Welsh and Scottish constituencies here, some of whom I know will contribute to the debate.

I have already mentioned that the condition is poorly diagnosed. Recent research shows that at least 45,000 people affected in the UK are loading iron as their bodies fail to control the absorption. Only 10% to 13% of these cases are diagnosed. For every patient diagnosed, between eight and 10 have the symptoms but have not been diagnosed. They are suffering unaware of what is happening to them.

Dr Ted Fitzsimons of the University of Glasgow has done a great deal of work in this area. He highlights that 80% to 90% of individuals who have this condition are unaware that they have it. They do not know what it is. They know the symptoms, which affect them, but they do not have an explanation for them.

Professor David Melzer, from Exeter University, and the Haemochromatosis Research Group have conducted a UK Biobank study of half a million patients, which was published in January 2019. They found that people with the double haemochromatosis mutation had four times the risk of liver disease, twice the risk of arthritis and frailty among older age groups, and a 50% higher risk of pneumonia and diabetes compared with those who do not suffer from the condition. In the UK, there are currently 136,000 people with the condition aged 40-plus. The study found that of that generation of 136,000, approximately 12,200 will have had a hip replacement, which they would not have needed if they had been diagnosed earlier and treated for iron overload. However, the study has a caveat, as there is uncertainty about whether all those operations would have been avoided by early diagnosis. But as with any condition, we know that early diagnosis is crucial.

[Liz Twist (Blaydon) (Lab)]

Two of my constituents, Jane and Andrew, have haemochromatosis and have contacted me about this debate, stressing the importance of early diagnosis. Does the hon. Gentleman agree that it can be difficult sometimes for people to be clear about the symptoms, therefore making it can be difficult to get a diagnosis, and that we must work on that?

[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.