SIBF Update from Convener John Rice

Dear Members,

SIBF Convener, John Rice

I’d like to introduce myself, my name is John Rice and my wife has suffered with Hep C for many years. This is how I became involved with the SIBF a number of years ago after a meeting in Thomson Solicitors Glasgow. I am retired having previously worked as a joiner and was self-employed for the last 24 years before retiring.

At the AGM held on 17th December, the Forum’s Management Committee were formally appointed by Members. From the top row, left to right, we have Robert Fraser, myself, (bottom row, left to right) Gillian Hazelton (Secretary), Joyce Donnelly (Treasurer) and Roseleen Kennedy.

The members of SIBF’s Management Committee

At the first meeting of the Management Committee in January, I was appointed as the new Convener for the SIBF and I look forward to helping steer the Forum through the many challenges remaining for those infected with contaminated blood from infected blood or blood products. Although it will be very difficult to follow in the footsteps of previous Conveners, Philip Dolan and Roseleen Kennedy, I will with the help of fellow Trustees and staff promise to do my best for all members and anyone who is unfortunate to have found themselves in this terrible position.

A lot has been going on ‘behind the scenes’, we are now up and running and building up the momentum that has been lost over many months last year.

I’d like to invite all Forum members to a ‘Meet & Greet’ event to be held on Saturday 25th of March. This will be held in central Glasgow, not far from the Mercure Hotel. The new venue will be a more informal and relaxed setting, and is a restaurant that has meeting room space available to host our event and also provide a hearty lunch and complimentary drink to all those attending. The Trustees will provide an update on SIBF activities and we would like all members attending to have their say, spark debate and contribute to discussions as we move forward into the new year. More details will be published here on the website shortly.

Extracted image from NSS’s website

The Forum and Haemophilia Scotland are also looking forward to hosting a joint event for members of both organisations to provide a comprehensive update on events, both past and future, especially centring around the new Scottish financial scheme (Scottish Infected Blood Support Scheme, or SIBSS for short) and the proposed forthcoming Clinical Review Group. The SIBSS is being set up by NHS National Services Scotland (NSS) under Scottish Government direction and they are working on the detail of the new Scottish scheme such as new application forms and guidelines etc. The Clinical Review Group will look at the extrahepatic issues many infected people suffer from, including and especially the lasting side-effects of previous toxic anti-viral treatments.

The SIBSS webpages set up by NSS can be found here: https://nhsnss.org/services/practitioner/medical/scottish-infected-blood-support-scheme/)

The Forum will also be looking at the new treatments for HCV, their side-effects and their success rates. We know some of our members have been anxious about undertaking the new treatments due to the serious and lasting side-effects they endured, and are currently living with, from those previous treatments. We also understand there is some uncertainty around the lasting ‘cures’ which these drugs are espoused to produce. So we’ll be looking closer at these issues for you.

Finally, I would like to thank all members for enduring a very unsettling period last year for the Forum. Myself and my fellow Trustees would like to thank you for your support; we will endeavour to continue to provide a strong and independent voice for those infected by the State through blood transfusions and blood products.

John Rice
SIBF Convener