Keep up to date with regular news items that may be of interest to you, along with notices of meetings and member’s days.
We have been asked to seek member involvement in a health-related consultation for the Scottish Government. I have largely copied the wording we were sent, but have tried to translate the worst bits of government-speak into ordinary language
The charity has contributed significantly to an application to get a new drug treatment approved for use in NHS Scotland. I am delighted to say that this has been successful and Upadacitinib (called Rinvoq by the manufacturer) will be available as an option for treating GCA.
We have been asked to help with an international project aiming to develop guidelines on the
treatment of GCA. The project team is led by Christian Dejaco (Italy/Austria) and Carol Langford
(USA) and UK members are Bhaskar Dasgupta, Sarah Mackie and Rashid Luqmani. In addition, our
own Lorna Neill is the UK patient representative.”
In early March, after months of consultation and waiting, we received the news that NICE, the National Institute for Health and Clinical Excellence, has approved the use of tocilizumab for cases of giant cell arteritis.
Many doctors are still failing to diagnose and treat PMR and GCA properly, causing unnecessary suffering to patients. That was the view expressed by London group members during their summer meeting, when they conducted a survey of attendees experiences to help inform debate about improvements needed.
Between 19th and 25th June, our members and their friends and family across the country were fundraising to help us reach even more people with PMR and GCA.
The first of our research roadshow events turned out to be a bit of a surprise. We had anticipated that there would be a lot of interest in hearing the team from Southend University presenting their research. We were expecting about 60 people, but on the day, people just kept on coming in, and we had an audience of 86. People had come from all over the region, and beyond, to hear more about new knowledge in GCA and PMR.