Managing Your Haemochromatosis
The 2018 Genetic Haemochromatosis Patient’s Conference, Managing Your Haemochromatosis was held in London on Saturday 14 April and was a great success, bringing together over 140 people and once again becoming the largest gathering of GH patients.
Delegates heard from a number of fascinating speakers and also took the opportunity to talk to each other across several breaks during the day, as well as over lunch. Several stands added to the atmosphere and information. Delegates also had plenty of chance to “buttonhole” speakers, staff and trustees to discuss a wide range of issues and share their experiences.
A report from the event follows and audio and video clips will be made available to members as soon as possible.
Dr Jeremy Shearman
Our first speaker was Dr Jeremy Shearman, Consultant Gastroentrologist with a special interest in haemochromatosis based at Warwick Hospital. Jeremy specialises as a hepatologist and is also helping Haemochromatosis UK with plans to develop a Scientific and Medical Advisory Board.
Dr Shearman spoke about the fundamentals of GH, with emphasis on the testing and on patient pathways through our healthcare system. He also took many questions from the audience following his presentation, in the knowledge that he was not going to be present for the afternoon panel session.
An excellent and entertaining speaker, Dr Shearman was able to cover the basics for those in the audience who were recently diagnosed, but still add to the knowledge of delegates who had attended similar events in the past.
Neil is one of the charity’s trustees and this was the first time he had spoken at one of our conferences. He relayed his own personal story and experience of the venesection process, which had been very poor and resulted in him taking action against the hospital concerned.
Neil is now part of a project developing best practice guidelines for the venesection process, which had started the day before the patient conference at a Venesection Nurses Study Day organised by Haemochromatosis UK. During his presentation we learned about inconsistencies across the various trusts and hospitals, and varying levels of training and assessment of venesection competency.
David Head is Chief Executive at Haemochromatosis UK and presented a session entitled News From The Charity.
During the session he described how the charity needed to become a more assertive patient advocacy and patient campaigning organisation, as well as providing the individual support needed by members and their families. After a three year period of growth we are now becoming more credible and more influential, and developing the ability to have an impact on patients pathways.
David described how the complexity of GH patient pathways through our healthcare system, together with the fact that we have not been as effective as other organisations in the past at “fighting our corner”, meant that there was a lot of work to do. He said that the organisation needs to grow in many ways, but this must be done carefully and in a financially sustainable way.
David also made new announcements about World Haemochromatosis Week, the adoption of a new working name by the society, and the charity becoming the Lord Mayor of Coventry’s chosen charity in May. These stories can now be found under the news section of this website.
Afternoon speakers and panel
After a very “buzzy” lunch break the afternoon session comprised presentations from three speakers on topic relating to GH patients managing various aspects of their condition. This was followed by a lengthy and engaging Q&A session with all three speakers fielding questions, alongside a gust panelist Dr David Das.
Evelyn Dorkel is a dietitian with a very special interest in haemochromatosis – it is in her family.
Evelyn spoke about the importance of eating a healthy, balanced diet and the dangers of inadvertently cutting out other essential nutrients if foods containing iron are avoided completely. She also highlighted how diet cannot be used to reduce storage iron, only to moderate its intake, and that venesection was the treatment and diet could only help a little in maintenance.
She also fully endorsed our own publication Healthy Eating and Haemochromatosis and encouraged all patients to heed its advice.
Yvonne Francis is a Venesection Clinical Nurse Specialist based at Guy’s Hospital, London. Yvonne is highly respected as a clinic leader and is working with Haemochromatosis UK to develop best practice guidelines for the treatment of GH patients.
During her presentation we heard about the formation of a working group as a result of a Study Day organised by the charity. Yvonne also told us a little about the history of the bloodletting process and of her own experiences in clinic.
Professor James Elander is Head of Centre for Psychological Research at Derby University and a health psychologist with a special interest in how people live and cope with chronic painful illnesses. In his talk Professor Elander discussed the psychology of living with chronic pain, especially chronic joint pain, and reviewed research evidence from people with haemophilia and other chronic pain conditions. The emphasis was on how research with other chronic pain conditions might be applied to help people with hemochromatosis self-manage their chronic pain better.
“I was very much looking forward to attending this conference, to tell delegates about psychological approaches to chronic pain but also to learn more about hemochromatosis and how people like myself can get more involved in supporting patients and developing better models of care”, said Professor Elander.
After the three presentation the speakers were joined by Dr Dave Das, Consultant Gastroenterologist (ret’d) for a 45 minutes Q&A session. Questions from the audience were wide ranging, covering subjects as diverse as genetics, turmeric, analgesia, venesection problems, exercise, cancer, brain conditions, alternative therapies and vitamin supplements.
Annual General Meeting
After the afternoon tea break the final session of the day was given over to the formal business of the charity, including the approval of the 2017 Trustees’ Report & Accounts, and transfer of the role of chair of the charity from Howard Don, who was retiring, to Corrina Towers, who has taken up the post for an initial 6 month period on an interim basis. Minutes of the formal AGM will be forwarded to members of the charity.
The Genetic Haemochromatosis Patients’ Conference is an Annual Event
For details of the next annual Genetic Haemochromatosis Patients’ Conference visit http://haemochromatosis.org.uk/support/conference/