"I’ve really enjoyed meeting, and learning, from others with diabetes. It’s made me realise that everyone manages their diabetes differently and helped me to see the bigger picture and the value the research has to people’s lives."
Meet our Volunteer Spotlight for November 2019, Dr Göher Ayman
Following completing a PhD, Göher has been involved with research for the last 10 years and is currently supporting research projects at the University of Oxford. Göher, who has type 1 diabetes, is a lay member on one of our Clinical Studies Groups (CSGs) and is also on our Grants Advisory Panel (GAP).
First being diagnosed with diabetes
“I was diagnosed with type 1 diabetes quite late on at age 26. I haven’t got a family history so it came as a real surprise to me. At the time, I was training to do a clinical job. It was a difficult time to be diagnosed with a condition as I was on call a lot. I went onto an insulin pump which really helped me and told me that it’s possible to lead a relatively normal life with diabetes.
Without having diabetes in my life before then, I knew the science behind it but not what it’s really like living with it day to day. I was quite insular when I was first diagnosed, I didn’t know anyone with diabetes and I didn’t speak about it apart from to my healthcare team.”
Joining the Clinical Studies Groups
The Diabetes Clinical Studies Groups (CSGs) were formed in 2016 to create a roadmap for future research. The groups identify gaps in research and clinical studies that should be prioritised because more evidence is needed. They bring together people living with diabetes, researchers and healthcare professionals to move care of people with diabetes forward.
“I was looking for opportunities to volunteer and, in March 2016, I saw the call out for CSG lay members at Diabetes UK.
I wanted to do something with the knowledge I’d gained over my years working in research. I relished the chance to get involved, but it was a challenge for me, having been so private about my diabetes. I had spoken about being on a pump to a small group before but that was about it. To suddenly jump into the public eye and talk about it was quite a change.
I was excited to be accepted as a CSG member. The themes that were set up were so interesting to me and all important. I was accepted into the Acute Care group (CSG 4), the group for inpatient and community care. I was surprised to be allocated to this group because my only real experience of being in hospital is when I was first diagnosed.
Although it was daunting at first, I realised that I could bring my clinical experience and knowledge to talking to the clinicians in the group. I have worked in research within the NHS, trying to get funding and set up studies. Through this, I understand the pressures and the different ways that the NHS works and can bridge this with being a patient with diabetes.
The CSG identified nursing homes and community care for the older population as a priority area in research. Getting older is something that we’ll all face, it’s relevant to everybody. In August 2018, the CSG held a discussion on Twitter and a survey with groups on Facebook to ask how people feel about getting older with diabetes and where they think research should go. There were so many themes that came out of this discussion. We set up a working group looking at ageing well. We’ve got our first meeting coming up which I’m very excited about. When the CSG comes up with ideas, you don’t quite realise how far reaching the impact will be.
Another example of a gap in diabetes research is around hormones. Over a lifetime, there are a number of ways that hormones have a huge impact; during puberty, periods, pregnancy, from steroid usage and during the menopause.”
A sub group of the CSG was set up specifically looking at hormones, which Göher is a part of.
“As a group we discussed the different ways that hormones play a part, and decided we would focus particularly on the menopause. This is an untouched area with very little research. As a result, Diabetes UK released a highlight notice for funding applications on the menopause, and the research grant applications were reviewed in the last round of the Grants Advisory Panel. If it weren’t for our work, those submissions wouldn’t have existed. Menopause wasn’t being looked at before. This is one of the biggest successes I’ve been involved in and one of the ones that’s really stuck with me.”
Being part of the Grants Advisory Panel
Göher is also part of the Grants Advisory Panel (GAP) at Diabetes UK. The panel meets twice a year and is made up of 16 people who reflect the collective perspective of people living with diabetes and influence the funding decisions made on research grant applications.
“When the opportunity came up to be on the Grants Advisory Panel, I felt I had the skills to do well because I understand how a project might work. I could bring that to the group to help them look at a grant with a slightly different perspective and consider if it’s feasible and if it achieves its aims.
I’ve really enjoyed meeting, and learning, from others with diabetes. It’s made me realise that everyone manages their diabetes differently and helped me to see the bigger picture and the value the research has to people’s lives. The part that I enjoy the most is when we come to a consensus as a group on a grant.
I’ve considered that there could be a possible conflict of interest with being on both the CSG and GAP, but then I remember that I’m approaching it from a lay perspective. My role is to make sure that the voices of people living and affected by diabetes are heard. It’s been really helpful to be on both the CSG and GAP. For example, with the menopause highlight notice, it was useful for the GAP members for me to be able to explain where the idea came from and why the CSG identified it as a priority area.
It’s worked the other way round too, I can bring my knowledge and perspective of being on the Grants Advisory Panel, round to the CSG and strengthen applications that we support. I’ve been able to explain to my fellow CSG members how people look at grant applications, from my experience on the GAP. If a grant application doesn’t explain clearly what a project is about, it’s difficult to understand its value and support it.
Highlights and achievements
Seeing the outputs of the Clinical Study Groups and being able to move them forward has been a huge thing for me. If we hadn’t done the work we did on the menopause for example, it wouldn’t be considered an important area of research and we’d still be low on information because it wasn’t there at all in the research arena. This is where the CSGs really make an impact, by highlighting where the gaps are and helping researchers fill them. We know from the work we do, that we’re supporting research of value to people living with diabetes and their families.
It’s been an amazing thing to be involved with. I feel lucky to be working with Diabetes UK. I don’t think I’ve never seen a more motivated team than the research team. It’s been a real pleasure to see them pick things up and move things forward and they have supported me all the way through.
My experience of being on the CSG has been challenging and eye opening. I’ve got so much out of it. It’s opened up my world of diabetes. We have a forum twice a year when the lay members and healthcare professionals in the CSGs come together. The meetings are always so motivating and it almost feels like a family coming together.
Looking to the future – what’s next?
I don’t look too far ahead. It’s been tough at times combining volunteering with working full time and I’m sometimes frustrated that I can’t do as much as I’d like to. I’ve started my second term on the CSG and in two years my time will come to a close. I’ll have another few years on top of that on the GAP. I’d like to continue being involved, perhaps joining the Council of People Living with Diabetes if the opportunity is there.”
If you’ve been inspired by Göher’s story, find out how you can get involved.