Lucy Belk, 24 from Wrexham was first referred to a specialist diabetes psychologist when she was 15. Diagnosed with type 1 diabetes at six, she suffered from ill health, like undiagnosed coeliac disease, in childhood. But the biggest challenge was getting lymphoma when she was 10 years old and having to undergo chemotherapy.
Lucy said: “Diabetes has been a huge part of my life. My mother said that she was less scared of the lymphoma than the diabetes, because diabetes doesn’t go away. When I was a child, I didn’t understand why I was at the hospital or the implications of my health problems. I developed a fear of needles when I had to start doing my own insulin injections as a teenager, because before my parents took control. I also got a fear of hypos and that led to distress and anxiety, with panic attacks.”
Lucy started seeing Dr Rose Stewart, Consultant Clinical Psychologist at Betsi Cadwaladr University Health Board, and has had support on and off for almost 10 years. This has helped her with the transition from paediatric to adult services and to cope with the isolation of living with type 1 diabetes/ “I have never met others with diabetes and although my family has been supportive, I come across people who think diabetes is contagious or are afraid of it," she explained.
Dr Rose Stewart, a Clinical Champion at Diabetes UK has been instrumental in developing an integrated psychological service at her Health Board that helps people manage their confidence with more confidence and less fear.
“This shows that the model works and could be expanded across Wales if there’s commitment, funding, and foresight to realise that diabetes is a complex and demanding condition. People living with diabetes may have a high incidence of psychological distress, suicide intent and also have specific psychological needs relating to having to live with something that permeates every aspect of their life, impacts on eating habits, social habits and is sometimes misunderstood and stigmatised."
Lucy added: “I became very anxious and worried about complications because I was told what could happen if the condition wasn’t managed properly. In my case that worked. It hit home that I had to get on top of it and now, in my twenties, I wear a Libre and feel less afraid of going blind, for instance, because I know what I have to do. I am grateful for the help I continue to receive. Everyone should have access to psychological support, and I feel bad that many are not being seen and get the opportunity to get better. I now go for long spells without panic attacks and even when Covid came and brought more anxiety, I came through the other side, because I know I have that support."
Dr Rose Steward said:
“Diabetes can be unpredictable, and management is not straightforward. It’s also personal, although there’s a shared ground. Young people react in different ways. Some are in denial, and others become disengaged and can feel powerless. Therapies vary and have to be tailored to each person, from talking through their fears to finding ways of coping with challenges, such as having to inject insulin.”
Dr Rose Stewart’s report “From Missing to Mainstream” – A Values-Based Action Plan for Diabetes Psychology in Wales”, which Diabetes UK Cymru endorses, proposes the expansion of this model across Wales.
Earlier this year Diabetes UK Cymru launched the Missing to Mainstream report and campaign to highlight the need for psychological services to be embedded in diabetes teams, specialised, accessible and flexible.
