Saturday 13th April, Haemochromatosis UK (HUK) held their Annual Patients Conference in the city of Coventry.
This year, HUK also organised a pre-conference dinner, which was hosted by the Lord Mayor of Coventry and haemochromatosis patient, Cllr John Blundell. As well as an amazing meal and evening entertainment, the dinner offered attendees the chance to speak to other haemochromatosis patients, medical speakers and trustees at Haemochromatosis UK.
The conference dinner was also a chance for us to thank and award some of our amazing volunteers and supporters, without whom we would not be able to help those with genetic haemochromatosis (GH).
The conference day itself, was a packed event and included a whole host of speakers. The day started with a welcome and introduction by Corrina Towers, Chair of Trustees at HUK and David Head, Chief Executive at HUK.
This followed by an overview of genetic haemochromatosis by Professor Edward Fitzsimons. Professor Fitzsimons is a Consultant Haematologist and honorary professor at the University of Glasgow. He co-authored the new clinical guidelines for the treatment of iron overload and is a medical adviser to the All Party Parliamentary Group for Genetic Haemochromatosis. His presentation was on the future for haemochromatosis patient pathways in which he presented an overview of haemochromatosis and discussed how the new clinical guidelines are being adopted and will improve patient pathways and outcomes.
Our second speaker was, Dr Patrick Kiely, a Consultant Rheumatologist at St George’s Healthcare Trust. His presentation was on Haemochromatosis Arthropathy and what current conundrums mean for future research. Dr Kiely is a leading expert on haemochromatosis joint pain and has recently published a research paper entitled “Haemochromatosis arthropathy – a conundrum of the Celtic curse” He discussed the specific form of arthritis that affects haemochromatosis patients and what research can tell us about the future of diagnosis and treatment. He talked about his experiences of seeing GH patients and shared really valuable understanding of haemochromatosis, arthritis, and pain. He also spoke about the work of the HARI group.
Our third speaker was Professor David Melzer, Professor of Epidemiology and Public Health at University of Exeter Medical School. He spoke about the new research which links haemochromatosis to more disease than previously thought. The UK Biobank study of 500,000 volunteers provided a world leading opportunity to study ageing. Linking volunteers’ anonymised genetic data to NHS hospital records provided a unique opportunity for health research. His presentation raised questions about GH and screening, and whether that is the direction the UK should be headed in.
The three morning speakers, Professor Edward Fitzsimons, Dr Patrick Kiely and Professor David Melzer were then all able to answer some questions from the audience, about their work, and their vision of its impact on future clinical practice. The panel welcomed some great questions from delegates about later diagnosis in women and why that might be; gene silencing and their thoughts on what that could mean for GH and how patients can change attitudes of healthcare professionals.
After lunch we held The GH Show, hosted by David Head. On the show, the guests were: Neil McClements, Haemochromatosis UK Trustee and Patient Safety Advocate; Yvonne Francis, Clinical Nurse Specialist and Venesection Expert from Guys and St Thomas’s NHS foundation Trust and Gerri Mortimore, Lecturer at The University of Derby, School of Nursing and Professional Practice. The panel covered the process of creating the venesection best practice project and where the treatment of haemochromatosis is headed in the future.
Delegates heard a very interesting presentation by John Connell from Perspectum Diagnostics. He spoke about how an MRI scan can be a really useful way in recognising people that may have iron overload. There was discussion on the future of artificial intelligence being such that it would be a replacement for biopsy.
David Head, Chief Executive of Haemochromatosis UK in his presentation, reported to conference delegates on the results of the recent patient survey and the work being done on the basis of the results.
In October 2018, when the Survey Report was launched at the House of Commons. HUK also launched the Calls to Action document. One of the calls to action was to create an All Party Parliamentary Group for genetic haemochromatosis. This has now been achieved and at the conference Mark Pawsey, MP for Rugby and Chair of the APPG for GH spoke about the impact of the APPG and how it will improve outcomes for haemochromatosis patients. Mark urged conference delegates to go and speak to their MPs: “you’ll be surprised as to how much can be done” he stated.
This was followed by a presentation by Dr Roseanna Brady, Health Psychologist and Haemochromatosis UK Trustee. Roseanna talked about health psychology and specifically health behaviour, a take-away comment from the talk was that “medicine can only work for patients when we engage with it”.
In the final presentation of the day, Corrina Towers, Chair of Haemochromatosis UK, discussed the ongoing work of HUK and what’s next for the organisation. She talked about all of the goals of the organisation and the future of the charity, and commented on the changes taking place within the organisation such as the new GH Education Programme, The Iron Games, and bringing in a new Chief Executive.
The day ended with discussion of the 2018 Trustees’ Report & Accounts. The report and accounts are available to view here.
Each year we try to make our conferences better than the last, and this year delegates stated it was the “best one yet.” In the feedback, people commented that it was an “excellent event, very informative and well organised”. They also commented on the speakers, and that there was “an excellent cross-section of expertise”.
Debs Knight, Events Coordinator at Haemochromatosis UK stated, “as always the conference was extremely well attended and it was great to get to see members again and meet new ones. The conference dinner was a great addition this year and once again took the conference up a notch”.
David Head, Chief Executive at Haemochromatosis UK stated, “the conference is always the highlight event of the year, and this year was no exception. The conference dinner the night before made the whole affair exciting and allowed us to celebrate our members and their work. Being able to bring the conference to Coventry, especially with HUK being the Lord Mayor’s Charity of the Year and being based down the road in Rugby was a “coming home” of sorts. I am also pleased to announce that the next conference will be held in Manchester. I look forward to next year.”
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.