Newcastle Patient Information Day Report

Haemochromatosis UK’s (HUK) latest patient information day on Saturday 16 February 2019. Patient information days (PIDs) are a way for genetic haemochromatosis (GH) patients to speak to each other about the condition but also to learn from healthcare and medical professionals.

The first speaker, Dr Steven Masson, a Consultant Hepatologist from The Freeman Hospital in Newcastle, gave an easy to understand overview of haemochromatosis and about the implications of iron overload. Dr Masson also answered lots of questions about GH.  For newly diagnosed patients, PIDs are often a great source of information and relief, as often patients have not had the chance to ask questions about the condition, especially from a consultant with a special interest into GH such as Dr Masson.

Registered dietitian April Haithwaite spoke about GH and food. One of the most important things she stated was, “Eat a balanced diet first and foremost, if you worry too much about the iron in your food it will be at the detriment of other nutrients”. Following a healthy diet is important and changes in diet cannot reduce levels of stored iron but small changes may help slow the absorption of iron. You can read more about healthy eating and haemochromatosis in the HUK diet booklet.

Mr Helen Bethell, Genetic Counselor from Teeside NHS Genetics Service explained how haemochromatosis is inherited, which family members should be tested and overall she gave a good overview of recessive inheritance. HUK would like to add that some carriers will load iron and exhibit symptoms. Though the inheritance pattern and the mutations involved in GH are well researched, there are evidently other factors at play which are not fully understood. (HUK FAQs) If you would like to know more about genetics, please visit HUK’s page on GH and genetics.

One of the HUK trustees Neil McClements spoke about Haemochromatosis UK’s work on the award winning “Venesection Best Practice Project” and how it came about. The project, which is in conjunction with nursing teams, is to create evidence-based, safe, clinically effective venesection protocol. These protocols will be discussed at HUK’s upcoming venesection study day. If you would like to find out more about the upcoming venesection study day this April, click here.

David Head, Chief Executive at Haemochromatosis UK closed the PID by speaking about all of the work that the charity is currently undertaking, in addition to speaking about the results of the patient survey and the formation and first meeting of the Iron Overload APPG.

Commenting on the PID, David stated, “Once again the value of the HUK patient information days was clearly demonstrated, especially for those patients who have not had the opportunity in the past to talk to others. Sharing experiences is an important part of the day as well as hearing from our recognised experts. I look forward to events in Wales and South-East England later in the year”.

Alma Morse, a PID attendee said: “Just back from Patient Information Day in Newcastle…Lovely to meet others and put faces to names. Really informative day, lovely lunch and lots of exciting news from Haemochromatosis UK of projects underway. Keep up the good work and thank you for great day… If you get opportunity to attend Patient Information Day, I highly recommend you go.”

HUK’s next PIDs will be held in the South-East of England and then Wales, keep an eye on the events page of the website for details.

The event was kindly supported with grants from Barbour Foundation and Rothley Trust.


Notes

Haemochromatosis/GH is a genetic disorder causing the body to absorb excessive iron from the diet. Characterised by joint pain and disease, chronic fatigue and weakness, cognitive and psychological difficulties, sexual health issues, skin problems, abnormal liver function, diabetes, and cardiomyopathy. Iron overload can be fatal. It is usually easily treated if diagnosed early.

If you believe you have haemochromatosis or any other condition, please talk to your GP.