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Spalding and the Deepings MP Sir John Hayes: Working together we can save lives

There are ailments which few know of, but affect many. Frequently, they are hard to recognise and so go undiagnosed for years. Haemochromatosis is such an affliction. Awareness of the UK’s most common genetic condition is remarkably limited. Which is why, once a constituent drew this challenge to my attention, I resolved to do everything I could to champion the cause of the 300,000 people directly affected, including hundreds here in South Holland and the Deepings.

The disorder causes the body to absorb too much iron from the diet, with those living with haemochromatosis at increased risk from a number of other health conditions including liver disease, diabetes, pneumonia and arthritis.

Thankfully, diagnosed early, treatment is simple and highly effective, enabling those with the condition to live full, active lives. Through controlled blood letting or donation, most are able gradually to increase the intervals between treatment, with many visiting their local hospital or blood donation centre just once every 3-6 months. What’s more, much of the blood donated can be re-used to treat medical emergencies, saving other lives in the process.

Sir John Hayes CBE and Neil McClements, Chief Executive of Haemochromatosis UK at the opening of the charity’s new national offices on Enterprise Way (25062045)
Sir John Hayes CBE and Neil McClements, Chief Executive of Haemochromatosis UK at the opening of the charity’s new national offices on Enterprise Way (25062045)


Despite this, levels of diagnosis remain disappointingly low, with just 14,000 people identified and undergoing treatment. Given that the accumulation of excess iron is extremely toxic, it is vital that we help ensure as many people as possible are able to recognise the symptoms, which can include: lethargy, weight loss, joint pain (usually in the joints of the second and middle fingers), abdominal pains, liver and sexual dysfunctions.

Central to recognition is the dedicated team at Haemochromatosis UK, a national, patient-run charity founded in 1991. Meeting Neil McClements and Vicki Lunn, when opening the organisation’s new national headquarters locally, I was impressed by the diverse range of programmes launched from the heart of our area, designed to help and support people throughout the nation. We are fortunate that the charity has decided to make its home here in South Holland.

As diagnosis can be a confusing time, Haemochromatosis UK fund a specialist advice line staffed by fully-trained volunteers able to provide information and offer reassurance on a range of topics. In addition to this, the clinical education programme is designed to improve healthcare professionals’ understanding of genetic haemochromatosis across primary and secondary care, striving to ensure that the UK’s 50,000 General Practitioners and Practice Nurses are trained in diagnosis and management; to which end the newly formed partnership with the Royal College of General Practitioners will enable the delivery of accredited eLearning courses to 9000 primary care givers.

Inspired by the pioneering work of Haemochromatosis UK, I was delighted to accept their invitation to Chair the All Party Parliamentary Group (APPG) on Haemochromatosis. Having been Chairman of four other APPG’s on issue ranging from brain injury to craft skills, I have first-hand experience of their effectiveness as bipartisan catalysts for change. Working with MPs from all parties, I am confident we can drive Haemochromatosis up the agenda, striving to achieve our ultimate aim – the implementation of a nationwide genetic screening programme, that will identify affected people early.

As portrayed in the most recent episode of television drama Call The Midwife, Improved diagnosis can save lives. Working together in Parliament and here in Lincolnshire, we will fight to do just that.

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