National AGM Reports for the West Midlands Support Group

Haemochromatosis Society UK AGM (Saturday 19th June 2010)
Details in brief, my report on the AGM by Kieran Lynch.

 After the short business meeting that dealt with the Society accounts and election of directors and other items of this nature (please see agenda) the following issues were mentioned in the meeting:

• Choice TV Company is looking for a patient and consultant for a programme that they are hoping to make on Haemochromatosis to be shown on their website;
• There will be a meeting on Haemochromaotosis for consultants in October (ask Janet Fernau at the UK Society for details);
• Rugby balls are going to made with a Haemochromatosis logo on them and they will then be sent to medical schools in the hope that this will raise awareness;
• Suggestions were asked for on how the Society could further the cause of early diagnosis;
• It was mentioned that there are people around the country willing to start support groups but they don’t know how to go about it, nothing more was said about this apart from a gentleman from Suffolk who said that he would like to start a support group in his area but needed guidance and help;
• The Scottish support group is going to become a registered charity in its own right under Scottish regulations;
• Next year’s AGM will be held a little earlier on Saturday 11^th June 2011 an endocrinologist will be giving a talk on his specialism;
• Anthony Waddington a consultant Podiatric surgeon from Hereford gave a very interesting talk about joint problems in general and specifically in the foot. He totched on the processes of pain in joints and was very honest in his admission that medics do not understand many of these process or why pain happens. He mentioned that pain and its limiting factors do not always need to be matched by visual signs of disability to be very real and limiting. Rheumatoid Arthritis and Pseudo-gout were discussed alongside methods of identifying areas where problems exist, such as x-rays and other systems of scanning. It was particularly interesting to hear about how pain fluctuates due to the motions of sinual fluid in the body and the differences in pain people experience between being at rest and in motion because of this chemical reaction going on in the body.
• Marion Bartlett, a genetic councillor for families from Northwick Park spoke about the implications for family members due to a diagnosis of Haemochromatosis. She indicated that testing only need to go so far and ideally only among members of the immediate family. She also stated that children should not be tested until they are of an age when they can give consent or better still decide for themselves. Marion’s presentation was very interesting and I feel more people should receive genetic advice than currently do when diagnosed. However, I imagine some people may take issue with Marion’s  assertions that awareness and testing should stop at members of the immediate family and also that children should not be tested therefore running the risk that they will not be told about their potential to suffer and maybe only find out, like most of us, when it’s too late. More information on genetics can be found at the Association of Genetic Counsellors ;
• Alan Mannering’s new book, in which he tells his personal story and his journey through life while suffering with Haemochromatosis, was mentioned by Janet Fernau. The book can be purchased at Alan’s website at, www.mysilentillness.co.uk ;
• Desley White a dietician gave a presentation based on her work studying iron in the body and elements from the Bath Conference on errant iron in the body. Much of the presentation was very scientific and from a purely personal point it lost me a little. Of course there needs to be a breadth of presentations at events like the AGM but I am not sure how much use most of the audience will have made of the scientific details that we heard. As I say that is a purely a personal opinion and I am sure that others in attendance on the day found the content helpful.
• Dr Adrian Bomford gave a short and interesting talk on how useful Proton Pump Inhibitor drugs such as Omeprazole are at controlling acid and therefore reducing the uptake of ion in the body and by implication, for some, reducing the requirement of venesections. The side affects of these drugs were mentioned including some talk of increased cancer risk but it was said that in the main the side affects were minimal. It was also expressed that current guidelines do not allow for the prescription of these drugs for Haemochromatosis patients directly to reduce iron and therefore venesections. Maybe in the future this might become the case. Mention was also made of Milk Thistle extract doing something similar to PPIs but you will have to look that one up for yourself as not much detail was given. Some discussion also took place as to whether taking PPIs could reduce the level of pain suffered by some Haemochromatosis sufferers because of the potential for reductions of acid and iron;
• Finally Dr James Dooley spoke about work that had been done to set new clinical practice guidelines on the level of iron that should be reacted to in cases of Haemochromatosis. He stated that the American and European outlooks on this are different with the American view being that iron levels could be maintained at higher levels than thought proper in Europe which would be closer to ferritin levels of about 100. Dr Dooley also sensible suggested that such levels should be tailored to each individual patient as required and that the guidelines should be viewed in the correct way as guidelines only. Lastly there was a brief discussion on the use of Ferri scan machines and the high cost of using them and limited usefulness for those with Haemochromatosis.

That just about completes my observations on this year’s AGM. No doubt I have missed some of the details but most of the main items are covered to a degree that the reader can at least  know what was discussed.

Before I conclude I would like to say that I was disappointed that no time could be found for the regional groups to report as had been listed on the agenda. It is a shame that we could not get to hear about the work they are doing and how they are getting on. From a West Midlands point of view I would like to have let others know what we are doing so that we could swap notes and learn from each other. Certainly the gentleman for Suffolk, who is thinking of setting up a support group, would have benefited and I believe all in attendance would have gained from a discussion on how to develop the Society across the nation over the coming year.

 Kieran Lynch (Co-ordinator / vice chair West Midland group) 20th June 2010