Our first of two Patient Days this year took place in Glasgow on Sunday September 20 at the Golden Jubilee Conference Hotel. This was the first Patient Day that we’d organised and carried out independently as an organisation. It was even the first time some of our trustees and staff members had actually met in person since we’re spread out all over the UK.
The day was all about bringing together and connecting our community of amyloidosis patients, carers and healthcare professionals while also empowering patients and carers to better manage living with their conditions. The need for additional support within this community is substantial and that was made even clearer by those who came and shared their experiences, more than sixty in total.
The day began with registration. We’d prepared packs and name badges with optional stickers in several colours coded to indicate which type of amyloidosis people have. We found that wearing these helped to facilitate conversations as people were able to easily recognise others with the same condition and not have to spend as much time explaining things.
We then had presentations on the state of the amyloidosis community and our charity work from our trustee David Gregory and our CEO Kate Taylor, followed by a comprehensive overview of amyloidosis by Dr Kathryn Brennan.
In between presentations and workshops we built in as much time as we could to allow people both to connect with each other and also to visit the marketplace where several organisations—including ourselves—had stands set up with people to answer questions and chat. In addition to us there were representatives from Patient First Research, the Patient Information Forum (PIF), FutureMeds UK, Myeloma UK and the British Society for Heart Failure. The PIF team brought along a few preview samples of our upcoming Patient Information Leaflets that we’re particularly excited about, as were many patients based on the feedback we had.
The final and longest part of the day consisted of three forty-five minute breakout sessions that ran three times each so that everyone had a chance to experience all of them. Personal Trainer Alan Levi delivered his Movement is Medicine program providing a range of strength training exercises and techniques tailored specifically for people living with amyloidosis. Dr Kathryn Brennan’s workshop was called Meet your Amyloidosis Service, focussing on how amyloidosis care works within our medical system. Sophie Randall’s dealt specifically with Getting the best from your medical appointments providing loads of practical advice and tips.
Rather than having a closing remarks presentation, we decided it was more important to just have a coffee break instead providing more time and space for people to talk and give feedback. We’re very happy to report that the feedback we had was overwhelmingly positive. People found the day helpful, informative and encouraging. Many reported that it was particularly good to meet others living with similar conditions.
People also gave us some excellent, constructive suggestions about how to improve future events and we’re already working to put many of those in place. On that note, our next Patient Day is in Liverpool on Sunday November 15. Please come and join us!
