I’m on the Janssen vaccine trial (Johnson  & Johnson) where you have two jabs. I’m in ENSEMBLE2, a phase 3 trial, which involves thousands of people and starts when the vaccine has already been tested on hundreds of people.   

I wanted to join a vaccine trial because it is important for people with diabetes to take part so the results can be shown to be relevant to us. And I wanted to give myself the benefits of a vaccine before I was likely to get any NHS-issued vaccine. 

I had registered for vaccine trials on the NHS website. I’ve been involved in other research trials, so I know how high the standards of care and research methods are. 

I think some people are frightened of research. They don’t realise clinical trials are carried out by hospitals. Some of the money they get will go into improving patient care. They’re known as research hospitals. They attract up and coming medics and research adds to the hospital’s prestige.

A lot of research trials are nothing to do with medicines or injections. For some trials, you might just give blood samples, or have things measured, such as the sensitivity in your feet. 

Getting the vaccine

On trials, half of you are given the real treatment and the other half are given a ‘fake’ treatment. (placebo). When I was called up for my actual NHS vaccine, I rang the hospital and found out I’d had the real Janssen vaccine. As I’d had a vaccine, I was told I couldn’t have the NHS one. It was a bit of a worry as I couldn’t be sure that the Janssen vaccine had worked but it looks now as if the vaccine will be approved which is reassuring.

When I went for the first jab on the trial (December 2020). I was so busy talking to the research nurse, whom I knew from my previous diabetes research trial, that the injection had already been done without me realising it.

I was interested in the 15 minutes afterwards to see if it affects my blood glucose, but it didn’t. About 10 days later, my arm was sore - but apparently your body’s reaction can be anytime up to the first three weeks. When I had the second vaccination in January, I just felt a bit achy for a day.
 

I decided I wanted to try and raise some money for Diabetes UK, so signed up for a 10k in Sheffield. I received my fundraising pack containing my t-shirt and banner, which also included a leaflet about the charity. The leaflet made me realise that I had never really looked into any resources, even though I was probably in need of some help. From there, I discovered Diabetes UK’s Learning Zone and their Helpline, which my parents actually called when they were struggling to understand my diagnosis.

I found Diabetes UK’s website really helpful, and still do. You can find anything on there that you need to know, which is what’s so great about it. It’s also been helpful to have a reputable source of information during the pandemic and I’ve found the social media pages particularly helpful for updates.

Being based in Sheffield for my studies, I have close links with the North of England team who send me lots of information and invites to Zoom meet ups. I started volunteering with Diabetes UK in Barnsley, as part of a community project for my studies, which involved raising awareness of type 2. Gradually I began doing talks, helping on the kids’ camps, and working with the local diabetes teams. I found that once I looked for help, I started giving back to Diabetes UK. I owe them a lot; without their help I wouldn’t be in the position I am now.

Feeling inspired to continue raising awareness, I’ve now started an Instagram account called @LearnDiabetes, with a few other NHS doctors. One thing that had really struck me when I was first diagnosed was the stigma and misconceptions that surround all types of diabetes. My hope is that we can dispel certain myths and educate people about all things diabetes.

I wish I'd been given more information when I was first diagnosed, as opposed to being told you have diabetes and someone will see you in six months’ time.

So in addition to running the Newport support group, I'm currently volunteering with the health board and the expert coordinator for structured diabetes education. The aim is to get more bums on seats at the courses, so I rings patients and ask if they want to do these courses, explain what's involved and that I've done it myself and can vouch for how good they are. As a result, they seem to be getting more uptake. I think that a lot of people don’t realise there is structured education out there so working on the promotion of these courses is essential. 

I'm also on the reference panel for the Diabetes Research Unit at Swansea University and reviewed new Pocket Medic videos before they were made public. They show sensible ways to shop and what to look for on food labels. When I was diagnosed, what I was going to feed my family was a real panic. I think these videos should be compulsory viewing for everyone at their diagnosis appointment.

When I was first diagnosed, I was in a bit of a rut and felt really sorry for myself because I was unwell. But I now feel that my diagnosis has given me a purpose – to spread my knowledge and raise awareness with as many people as I can.

I saw an advert to get involved in helping the DRUC on their Patient Reference Panel with research applications, lending my opinion as someone with that real life experience of diabetes. Through that I heard about the USTEKID trial and became a Patient and Public Involvement volunteer for them.

I go to meetings with the researchers and trial managers and use my unique perspective to advise them about what a parent or child taking part in the trial would need to know, or any challenges that could arise.

Research is so crucial to help understand why and how type 1 diabetes happens and to get to the point where we can prevent it. It was a no brainer to get involved. I wanted to help my daughters and everyone else with type 1.

I love seeing live music and I first met Tris when he was playing drums at a local gig. As well as being an office volunteer for Diabetes UK, I write music blogs. Tris asked me if I’d write a review of his band for a music blog which I was delighted to do. 

Through this we became friends and not long after we met, he asked me to write another review for a new band he was in. The night he was due to play, he called me to say he was really sorry but he couldn’t perform because he’d just left hospital after being diagnosed with type 1 diabetes.
 
Because of my volunteer work at Diabetes UK, I have a great affinity with young people affected by diabetes, and I feel it’s really important to get information to this hard-to-reach group. 

When Tris told me he’d been diagnosed with diabetes, I wanted to help him in every way I could. Not long after he was diagnosed, Tris wrote a song about how to handle a hypo called ‘Completely on Your Own’.

The headlining performer was Felix Hagan and I asked Tris to support him. He sang ‘Completely on Your Own’ and it was a fantastic success. It’s a beautiful soulful song and when Tris sings it, people really connect with it and start to understand what it’s really like to have diabetes and experience a hypo. Through his song, young people at the group including Tris’s friends from university have learnt to understand diabetes and do everything they can to support him.