Introducing SWAN UK member and Parent Rep for Bristol, Louise James.
As well as being a SWAN UK member and Parent Rep for Bristol, Louise James is Public Contributor for the Rare Diseases Clinical Oversight group, West of England Genomic medicine Centre (WEGMC). We asked Louise about her role, its importance and what she gets out of it.
I help provide feedback from public information and make sure that the design and implementation of the services meet families’ needs. For instance I might be asked for my feedback on a sample of a letter to be sent out to families. I give feedback on what could improve it, and different ways of communication.
I help think about how can we reach families and make sure all information is correct and that one family isn’t being told one thing and another something else. I am helping to make people aware of the impact of rare and undiagnosed conditions and making professionals aware about how to refer onto the 100,000 Genomes Project. I’ve also been talking to professionals involved about SWAN UK so that they can also signpost families who need support.
So far I have had an induction and training and met with others from the Clinical Oversight Group and steering groups. I attended a launch event at Southmead Hospital where I met a wide range of people including surgeons, paediatricians, support groups, pharmacists and scientists.
At the event I led a workshop with the Patient and Public involvement Lead called ‘Going forward together and where we want to go next’. I spoke about my family and the impact genetics has had on us. I also spoke about the importance of working with the charity sector, SWAN UK and the importance of communicating well.
I went to the first planning meeting they had last January with Miriam from SWAN UK, where they got to know me and find out about SWAN UK. I kept in touch after the meeting and then applied!
No, never. Sometimes I feel out of my comfort zone and get really nervous about my role but it’s really exciting and there are lots of people around to help. It’s amazing how much knowledge we have as families without realising it! The more I do in my role the more I will learn and it’s going to get really busy soon!
The role is for three years, the length of the 100,000 Genomes Project and it may link into other roles so there may be future opportunities to get involved in.
I’ve got lots to say! It really interests me and it’s amazing to be a part of.
When I joined SWAN UK meeting families for coffee I didn’t know what went on behind the scenes.
The more I see the more I want to learn and I wouldn’t have known about this role if it hadn’t been for SWAN UK.
Visit our website to find out more about Louise’s son Scott: undiagnosed.org.uk/news-events/news/scotts-story
Click here to find out more about the 100,000 Genomes Project: undiagnosed.org.uk/support-information/genetic-research-studies