The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)
I thank my hon. Friend the Member for Na h-Eileanan an Iar (Torcuil Crichton) for securing this debate and for sharing his personal connection as someone who has haemochromatosis. In honour of World Haemochromatosis Week earlier this month, from 1 to 7 June, I pay tribute to the important work that my hon. Friend and our colleagues on the all-party parliamentary group are doing to raise awareness of genetic haemochromatosis.
As we have heard, genetic haemochromatosis can have debilitating consequences, including arthritis, joint pain, diabetes, fatigue, psychological or cognitive difficulties, skin conditions, menstrual problems, impotence, breathing and heart problems, abdominal pain, liver problems and hair loss. This genetic condition, which allows iron levels to build up in the body, particularly affects people of white northern European backgrounds.
It is estimated that as many as one in 150 people in England and Wales, one in 113 people in Scotland and one in 10 people in Northern Ireland are affected. Health is a devolved matter, and I am delighted to see Members from the devolved nations represented in this debate. I note the interventions from the hon. Member for Strangford (Jim Shannon), and from my hon. Friend the Member for Glasgow West (Patricia Ferguson), who is the Chair of the Scottish Affairs Committee.
All four nations in the UK are advised on screening matters by the same independent scientific advisory committee. The UK National Screening Committee is an independent scientific advisory committee that advises Ministers and the NHS in all four countries on all aspects of population and targeted screening, and supports implementation. Using research evidence, pilot programmes, economic evaluation, expert stakeholders and consultation, the UK NSC assesses the evidence for national screening programmes against a set of internationally recognised criteria. These cover the condition, the test, the treatment options, the effectiveness, the ethics and the acceptability of the screening programme. It is only where the offer to screen provides more good than harm that a screening programme is recommended.
The UK National Screening Committee reviewed the case for screening for genetic haemochromatosis in adults in 2021. After consideration, it recommended on balance against a national screening programme at that time. That was because although a faulty hereditary hemochromatosis protein gene—the HFE gene—is known to cause iron to build up, that does not happen to every person with the faulty gene. Screening could therefore result in people being told that they have a condition that would not go on to impact their lives, which may cause undue worry. Screening would identify people who may never experience symptoms.
A screening programme would be most relevant for this condition if pre-symptomatic treatment showed significant improvements in an individual’s prognosis. However, there is limited evidence on whether treatment is more effective in individuals without symptoms compared with those who have symptoms. Currently, there is no evidence that a screening programme is the best way of helping people with the condition.
However, the UK National Screening Committee keeps its decisions under review. It welcomes any new published peer-reviewed evidence that suggests the case for a new or modified screening programme via its annual call. Any individual or organisation can submit a topic to the UK NSC to consider a new screening programme or modification to an existing programme.
Haemochromatosis is one of the most common genetic diseases, and genetic testing is available. For patients in England who show unexplained iron overload suggestive of hereditary haemochromatosis, genetic testing is available at one of the seven genomic laboratories. Any healthcare professional who suspects their patient may have haemochromatosis can refer their patient for testing via their local NHS clinical genomic service.
As we have heard, the main way to treat the condition is venesection, which is a procedure to remove some of an individual’s blood. This may need to happen every week at first, but only two to four times a year once the condition is stable. For those who cannot have blood removed, chelation therapy is an option. This medicine reduces the amount of iron in a patient’s body. I know that the NHS Blood and Transplant service works with many patients who have genetic haemochromatosis. While some genetic haemochromatosis sufferers will not be well enough, many of these individuals are well enough, and like Lorraine, the constituent of my hon. Friend the Member for North Warwickshire and Bedworth (Rachel Taylor), offer to give blood as an alternative to venesection. Turning a life-altering condition into a lifesaving opportunity is to be commended. I take this opportunity to thank each and every patient who is able to do so and has opted for that route.
To conclude, I once again thank my hon. Friend the Member for Na h-Eileanan an Iar for bringing forward this important debate and every Member who has contributed. Let this be the beginning of a conversation about how we can best support people with haemochromatosis. The condition affects many in our constituencies, and this has been an important opportunity to highlight how we must support their diagnosis and treatment in the future.
Question put and agreed to.