Chair of the All Party Parliamentary Group for Genetic Haemochromatosis (APPGGH) Mark Pawsey MP has secured a one-hour Westminster Hall debate in parliament next week, in which he will raise issues around diagnosis and management of the condition. Other MPs will also be able to speak on the subject, which is relevant to all MPs because the prevalence of genetic haemochromatosis means that on average there are several hundred people disposed to loading iron in any given parliamentary constituency.
“This is really significant”, said David Head, Operations Executive at the charity and patient organisation Haemochromatosis UK, “We have been working hard to raise awareness of the true prevalence and the harsh impact of haemochromatosis (Iron Overload Disorder), so to have the subject debated at the highest level will really help. The Westminster Hall debate will serve to push GH further up the UK healthcare agenda and give Mark and other members of the APPG an opportunity to ensure that ministers are aware of the importance of tackling the current underdiagnosis problem.”
With an estimated 380,000* people genetically predisposed to iron overload, and at least 45,000 people across the country actually loading iron, the impact on NHS resources is significant – both in primary and secondary healthcare. Described by one MP as a “no-brainer” for the NHS, reducing the time taken to diagnose on average will save suffering, lives and NHS resources. Untreated, iron overload can lead to serious health problems including damage to the heart and liver, as well as multiple chronic issues such as diabetes, joint disease, skin conditions, sexual health problems, depression and much more.
Members of Haemochromatosis UK, and other patients, are asked to encourage their own MPs to attend the debate, and to support Mark in his calls for improvement.
Suggested words for writing to or emailing your MP >> Asking MP to attend debate
Identifying your MP >> https://www.parliament.uk/mps-lords-and-offices/mps/
The debate is to be held in Westminster Hall in Wednesday 03 July at 16:30 – 17:30.
* This figure has been updated 12/07/2019, a previous figure stated 280,000.