Haemochromatosis UK is proud to have organised the first venesection study day specifically focusing on Genetic Haemochromatosis.
As diagnosis improves the numbers of haemochromatosis patients being venesected rises year on year. As the scale of the condition becomes ever more apparent, so does the importance of work to ensure consistent and effective treatment. We know from our members that the treatment they receive differs wildly by geographic location and even from ward to ward in the same hospital, so we began a process of consultation with venesection teams to determine how the situation could be improved. It soon became apparent that there is no nationally recognised guidelines or best practice available and that the level of training venesection nurses receive is inconsistent. We began to work with Yvonne Francis a specialist nurse based in Guys Hospital London, to deliver a training day for all nursing staff involved in the venesection process. We designed the programme to be full and varied. Delegates heard from a wide range of speakers and took part in group activities all with the aim of giving a good working knowledge of haemochromatosis and the specific challenges GH patients face.
Attendees also had plenty of chance to speak to members of venesection teams from around the country, which formed an integral part of the learning experience. Importantly the delegates are able to follow up the learning from the study day with further discussion in our online forum ‘Ghandi’.
If members of your venesection team were not able to attend on the day, please encourage them to join the Ghandi online community at ghandi.org.uk
We really do see the study day as the first step in a wider ranging programme of education and development. We hope to form a working group to take the knowledge gained and develop it further, leading to the formulation of a best practice guide which can be nationally circulated.
The commitment of the nurses who were able to attend was immediately apparent, all the feedback received shows a real desire to develop, learn and share knowledge to enable them to provide consistently excellent care. One delegate said “In 25 years of working in the NHS, this is the best training day I have ever attended” We are really proud to be able to provide high quality and effective training and are already planning a follow up event for 2019.
The day opened with the Fernau Lecture, an explanation of Haemochromatosis from Professor John Porter. The Fernau Lecture is an annual presentation given by an expert in the field of Haemochromatosis to members of the medical profession. Named after our founder Janet Fernau, the lecture is based on the latest medical knowledge and aims to educate and inform the future of the treatment of haemochromatosis.
Professor Porter is a Professor of Haematology and Consultant Haematologist at the University College London Hospitals and head of the joint Red Cell Unit for UCLH and Whittington Hospitals.
Professor Porter’s presentation was followed by a talk on the subject of Diet and Haemochromatosis Many people affected by haemochromatosis have concerns about the amount of iron in their food. This presentation gave the delegates the relevant knowledge to be able to reassure patients that have worries or questions about what they should and should not eat
The presentation about diet and haemochromatosis was given by Evelyn Dorkel (RD) who also spoke at the patient conference. Evelyn is a registered dietitian specialising in digestive diseases, heart health and ill health prevention. She is a member of the British Dietetic Association (BDA) and has a personal interest in haemochromatosis as she has inherited the genetic predisposition for the disease.
This talk was complimented by the ‘Healthy eating and haemochromatosis’ leaflet that was given to all the nurses to take back to their hospital with them.
There was a presentation from Neil McClements, focusing on the patient experience to finish off the morning session.
The event was then handed over to Yvonne Francis to lead the group work in the afternoon sessions.
The group sessions were an opportunity to share knowledge and learn from colleagues. The work done in the groups was fed back to the larger group at the end of the session so even if individuals were not involved in the group work on a specific subject they had the opportunity to participate in the wider discussion.
The group discussions were wide ranging and broadly covered the following areas;
The Process of Requesting a Venesection, Pre Venesection Assessment, Competencies and protocols, Techniques and Equipment, Environment and Troubleshooting, Ongoing Monitoring, Testing and Reporting.
As part of the afternoon rotation, each delegate also got the chance to hear from our trustee Dr Roseanna Brady CPsychol, BSc MA MSc DPsych MBPsS on The Impact of the clinical environment on patient health which aimed to help nurses consider the overall wellbeing of their patients.
At the end of the day every nurse was given our ‘hospital pack’ which contains venesection diaries, information booklets, posters and healthy eating guides. They were also encouraged to join ‘Ghandi’ in order to follow up and keep up to date with future events.
We are delighted with the success of the event. All of the delegates that have given us feedback have said they found the day valuable and that they would recommend the event to other professionals involved in treatment of GH. We have already received news from members of changes to their venesection procedure as a direct result of the study day.
The study day marks the start of an ongoing process of collaboration between Haemochromatosis UK, Yvonne Francis CNS at Guys Hospital and the nursing community.