Stepping Back: What a difference five years makes!

I have been deeply involved in the field of diabetes since my daughter was diagnosed in severe DKA on April's Fool Day 2012 of all days. The very first night in the hospital, I had a bemused nurse fumbling in a cupboard for leaflets. Working as I do in a field (primarily Autism) where there is no cure, but rather management, I knew instantly that navigating this new world successfully would be utterly dependent on that fact and the best way to do so would be both to understand it better and seek out those living with the condition. I also knew that all significant changes in the field of autism and intellectual impairment have been parent driven and that, as a former healthcare professional with the National Health Service (NHS HCP), no major changes ever occur in a professional field without external pressures demanding better.   

The next ten years saw us a family heavily involved in all manner of DUK and JDRF events and outings and activities instigated by our community of parents - information days, residential trips, support groups, nights out (adults not kids!), sponsored walks, lobbying of the health board with the invaluable support of DUK Cymru/Wales and the indefatigable director, Dai Williams and for me, volunteering on specific school related DUK projects.  It was tremendous to have the unfailing support of someone like Dai who knew the Welsh health system inside out and who was able to advise me on what I needed to communicate and who I needed to meet for maximum impact.

“Not just for our family, but for all the other families we knew and those who would follow in our footsteps.”

Stepping Back 

As my daughter got older, I knew I had to step back more and let her find her own way, and I had to make a conscious effort not to try to keep abreast of every development in the field.  

She also found her 'tribe' with the wonderful Together Type One community. I do not pry into what they do, both in person and online, but I do know it makes an enormous difference to her sense of worth and belonging and keeps her spirits high through tough times. I know that she can raise issues in the community that she may not want to with me. When I see the smile on her face after a meet is over, I know what a boost she has had, knowing she is never alone.  

In 2025 I was successful in my application to attend the DUK Professional Conference in Glasgow as a #dedocº voice I had attended this conference before about 8 years ago as an invited speaker and ever since, had tried to work out how to do so again. I even toyed briefly with the idea of signing up with one of the catering companies and ear wigging furiously as I gave out sandwiches! 

I had no concerns at all about attending with #dedocº. The meticulous preparation by the team and efforts to keep us all thoroughly informed and connected before we even arrived left me in no doubt as to the efficacy of the charity. My only slight concern was that as a parent, rather than someone living with diabetes, I might have been viewed as an imposter. Nothing could have been further from the truth! I was warmly welcomed by all and informed I am a TF (friends and family), an epithet I like very much.  

The importance of psychological management  

During the conference I felt listened to and respected by the professional community. It was clear that professionals recognise that psychological management of the condition is as important as the biological mechanics and that by being there, a powerful statement to that effect was being projected to all delegates.  

The progress in technology 

I was also given a deep dive into where technology is going, in a way it would not be possible to communicate effectively or responsibly to a wider audience of services users all with different levels of understanding of the condition and at different stages on the wider diabetes journey. I recall crying after a very bad night several years ago and saying to my husband 'I just wish she had her BG running across her forehead. Then I could rest.' It is still scarcely believable to me that this wish has come true and that a BG reading is now instantly available.   

Seeing pumps and CGMs getting smaller and more powerful and the pace of change and progress is dazzling. I was one of the first people to buy a Freestyle Libre when it came out and I carried out numerous experiments on myself, posting the graphs online and making the pleasing discovery that very few people without T1D have a perfect horizontal line. I recall laughing out loud when the suggestion was first mooted regarding roll out in the NHS. As a jaded veteran of the NHS, I refused to believe that those in charge would ever be able to bring off such a seismic intervention. But it happened. I am still staggered that it ever did.  

One of the outstanding learning points for me with regards to technology was the likelihood that the next generation of pumps will mean no longer having to bolus for meals. It is truly incredible to think that in just over 10 years, my daughter has gone from laborious manualised processes, such as calculating carbs and correction doses, writing out every BG in a little notebook, and physically injecting, to a situation where it is hard to remember the last time she did a finger prick and most mornings she wakes comfortably in range, thanks to a closed loop system.     

Stand out moments for me include the following: 

The entire experience has filled me with energy, enthusiasm and hope for the future and reminded me how many truly wonderful people there are in the world. As #dedocº voices we all instantly made friends, recognising that what unites us transcends our ages, backgrounds and geographical locations.  I would not wish diabetes on anyone, but in our case, it has led to so many extraordinary experiences and people who have enriched our lives in so many ways.  

Written by Bethan Mair Williams 

#dedoc° voices #learningtogether #timeinhappiness #facingthe future