On the 24th-25thth October Neil, Sam and Howard attended the RCGP Conference. The Royal College of General Practitioners is a network of more than 53,000 family doctors working to improve care for patients. They act as a voice for GPs on education, training, research and clinical standards. The first day of the conference saw over 2000 GPs and the HUK stand was pleased to attract many delegates to hear about the prevalence of GH and how GPs can diagnose it.
We had the added bonus of Gerri Mortimer, who was exhibiting and presenting her latest research on GH – A Qualitative Exploration of Patients’ Experience of Diagnosis in primary Care. This enabled us to converse with different audiences and signpost GPs to and from the two exhibitions, enabling us to convey in depth conversations around GH.
While it was good to hear all GPs were aware of GH, many were shocked by the latest figure of 380,000 people in the UK affected and 80-90% being undiagnosed. There was a lot of discussion with GPs about how many patients they were aware that they had registered at their practice with GH and how many on average the latest data suggested they should have.
Again all conversations we had were with GPs genuinely interesting in GH and how they can work to diagnose more patients, successfully finding the patients they could have, potentially undiagnosed with GH. It was reassuring to speak with a selection of GPs that knew exactly what symptoms to look out for, what tests to do and to follow the BSH Guidelines. Some of which had already been to one of HUKs training sessions. HUK leaflets and booklets rapidly disappeared and information regarding Our Education Programme was increasingly popular, which gives us great hope for the future of the programme.
We even learnt of GP practices in remote areas that carry out venesection procedures themselves, rather than referring people to hospital or the blood donation service.
The team also learnt of the genetic testing inconsistencies across the UK. Recent changes in advice from Health Education England’s Genomics Programme, should make it easier for GP’s to request genetic testing. However, most GPs we spoke with were not so sure and grateful of the ongoing support Haemochromatosis UK provide to clinicians and patients via the telephone and email helplines.