Edinburgh Patient Information Day Report

Date Saturday 15th September 2018
Venue Radisson Blu Hotel 80 High Street, The Royal Mile, Edinburgh EH1 1TH

On Saturday 15th September 2018 we held a Patient Information Day (PID) which took place in Edinburgh, which had just over 70 attendees. PIDs are usually filled with talks featuring medical speakers, updates on the activities of Haemochromatosis UK and are an opportunity to meet and share experiences with other people affected by GH.

David Head, Chief Executive of Haemochromatosis UK opened the event by allowing for some icebreakers for attendees and introducing the speakers. He closed the event by talking about all of the exciting plans in the works for the charity, such as The Iron Games, the report launch at the House of Commons on the 31st October and the plans the organisation has for an Education Programme and Officer.

 

 

Our first speaker out of three was Dr Stephen Masson who is a consultant Hepatologist at Newcastle upon Tyne Hospitals NHS Foundation Trust. He gave an introduction to haemochromatosis, talking about how the condition is inherited genetically, the effect on the body’s vital organs if left untreated and the changes in the way that the condition has been identified over the years. The discussion that followed led to Dr Masson answering a question about blood donation. He stated that if venesection is carried out in a clinic, the blood is disposed of and it cannot then be used as a blood donation. However, as long as your health consultant is happy there usually not an issue with donating blood directly at a blood donation centre.

However, the frequencies of donations are far less often than venesections would be, and so Dr Masson suggested that donations and venesections could be alternated. We recommend that you confirm with your healthcare professional and blood donor service before you donate blood.

Another important element that was touched upon is that healthcare professionals should be treating patients on an individual basis, for example, when trying to get ferritin levels down for example the number should be comfortable to you rather than a blanket approach for all.

Oursecond speaker was Mr Graham M Lawson, a consultant Orthopaedic Surgeon who works with Edinburgh Orthopaedic Specialists. Mr Lawson talked about how arthritis and joint pain can occur, how haemochromatosis and joint pain are linked and the way that symptoms can be managed. A key point that Mr Lawson mentioned was the importance of a healthy lifestyle for those with haemochromatosis. Understandably the fatigue makes this difficult, and although it may not halt progression, doing as much exercise as the body can tolerate can help manage symptoms and functions of joint pains.

Our third and final talk was given by Dr Fred T Pender, the lead specialist dietitian at the Spin Edinburgh hospitals, which we also managed to livestream on the day and make available to those following our Facebook page. He re-iterated the information in the ‘Healthy Eating and Haemochromatosis’ handbook, discussing the foods that slow down and speed up iron absorption. Dr Pender also offered a fresh perspective on diet as he stressed the importance of eating a diverse diet and of enjoying food. He made the point that the word diet has many negative connotations attached, but if the focus changes to enjoying food then our relationship with ‘diet’ changes.

Overall, the talks and the event were successful as we had some very positive feedback on the day. As we are first and foremost a patient organisation, it is always a pleasure to receive such great feedback on the events we run.

Our next Patient Information Days are in Bristol and Newcastle, on the 17th November 2018 and the 16th February 2019 respectively. Tickets are now available for the Bristol PID via:

https://www.eventbrite.co.uk/e/bristol-pid-17th-november-2018-tickets-47419212140

We hope to see many of you in Bristol and Newcastle, and do follow our social media to keep up with future events.