In 2018, Haemochromatosis UK (HUK) held their first ever Venesection Study Day, which was hugely successful and for which we received an award.
On 12 April 2019, HUK ran the day for a second time, which was well attended by nurses from all over the UK, and Ireland.
The day opened by David Head, Chief Executive at Haemochromatosis UK who spoke to attendees about the key drivers for the development of venesection protocols. He introduced the day and set the context from the perspective of HUK, and that our motivations for a study day is that we are a patient organisation representing genetic haemochromatosis (GH) patients and their best interests.
David was followed by Yvonne Francis, who is a Clinical Nurse Specialist (Vensection) at Guys Hospital in London. At last year’s event, Yvonne and her team gathered a huge amount of information about clinical practice across the UK. During the afternoon, delegates had the opportunity to help distil this further, as we reviewed and discussed draft guidelines and protocols for the venesection process. Ultimately the results of the drafting will be submitted to the RCN with a view to securing accreditation as national guidelines, something which was very clearly identified as a serious omission in 2018. These sessions were not only learning opportunities, but a time to reflect on current practices and to think about “what good looks like”.
The third presentation of the day was delivered by Gerri Mortimore, a Senior Lecturer in Health and Social Care at The University of Derby. Gerri has been conducting study into patient’s experiences of the venesection process. In this session she outlined some findings from the study and facilitated discussion about how they could or should impact on clinical practice. With a background and relationship in hepatology, Gerri talked about GH and the liver, and how relevant it is to hepatology departments.
Claire Radford and Helen Batchelor-Regan, supported by Anita Matadeen from Queen Elizabeth Hospital Birmingham, gave attendees a breakdown and understanding of the genetics of haemochromatosis. We know that patients’ concerns about genetics and risks to family member’s leads to numerous questions. Often these are raised in the venesection clinic. This session helped delegates understand the basics around autosomal recessive inheritance, be able to confidently answer questions from patients and their families, and to know when to encourage family genetic screening.
The Fernau Lecture, named after the founder of HUK, Janet Fernau, was delivered by Consultant Haematologist and Associate Professor at The University of Glasgow, Professor Edward Fitzsimons. 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. In the lecture he explained genetics, diagnosis, treatment and summarised key terms associated with GH. He spoke about the new BSH clinical guidelines and what that means for venesection practices.
After the afternoon group working sessions on the best practice protocols, David hosted a fun quiz, testing the knowledge of attendees, reflecting on the day and it was great to see everyone enjoying some friendly competition.
Debs Knight, Events Co-ordinator at HUK stated that, “it was fantastic to see so many committed venesection nurses willing to travel so far to attend the training. The level of enthusiasm for the project is overwhelming”
David Head, Chief Exec at HUK stated that, “positive results only happen from active collaboration. Our venesection nurses are key in patient experience and providing patient care. The Venesection Study Day highlighted the importance in nurses sharing their best practices and the change that the best practice guidelines will bring.”
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.