This World Diabetes Day we need to talk about the psychological and emotional impact of type 1 diabetes. Primarily there needs to be a discussion about how the current NHS care system doesn’t offer enough support for struggling diabetics and about how and why this drastically needs to change.
Type 1 diabetes is an autoimmune disease and occurs when the body’s immune system attacks and destroys the cells in the pancreas that produce the hormone insulin. Insulin breaks down glucose in the blood and allows them to enter cells and create energy. This means those suffering from type 1 diabetes need to inject insulin in order to regulate their blood sugar levels. Currently, in the UK, over 400,000 people have been diagnosed with type 1 diabetes; this includes 29,000 children. The physical effects that the condition has on the body is common in the diabetes discussion but the mental strains people can suffer from are still infrequent in the conversation.
A study conducted by the charity Diabetes UK in 2017, showed that people with type 1 diabetes are at a heightened risk of psychological distress brought on by their condition, with three out of five diabetics experiencing emotional or psychological problems. The report also stated that those with diabetes are twice as likely to suffer from depression than the general population. As a result, only three in ten felt in control of their condition.
“It does have the ability to completely consume you, the stress of it all” Jack Wood says. The 24-year-old Audio Engineer from The Wirral was diagnosed with type 1 diabetes at fifteen months and has experienced severe psychological distress brought on through his condition. He explains:
“Diabetes is solely managed by you, and you have to do it every single day. It’s hard. It’s exhausting and it’s frustrating. I haven’t had a day off from diabetes in over twenty years”.
At 5-years-old Jack started to take charge of his own diabetes care. Heavily supported by his diabetic care team Jack was taught how to check his blood sugar and inject his insulin by himself which Jack believes as passing the responsibility of his diabetes solely onto him. Jack says “this meant I was the one in charge of my health and what happened to it and that is a lot of pressure to put on a five-year-old”. Around this time Jack was also made aware of the complications that can be caused by mismanagement of his diabetes. Prolonged high blood sugars over time can cause long-term damage such as blindness, heart disease, amputation, and kidney failure. “It’s quite the bombshell to drop on a child that the condition they have could kill them one day if they don’t take care of themselves properly.”
At the age of 11, he began to experience negative mental health brought on through his diabetes. Jack explained: “it was then I realised I wasn’t going to get any better, something switched in my brain” with this alongside other teenage stresses, Jack’s mental health deteriorated over the next decade.
Jack struggled to balance his diabetes with other aspects of his life, he says: “I was embarrassed and self-conscious, I didn’t want to be different. I didn’t want people to know about my diabetes so I just stopped doing it.” Jack clarified that he did have a brilliant support network around him but the problems he was facing were about his personal motivation; “It’s all down to you. No one else will do it for you”.
Jack believed that he was constantly letting people down with his management; “my blood sugars always ran high, but when I spoke to my doctors all they said was that I had to try harder and I did try sometimes, I did try incredibly hard. But I have never had a run of more than two days with good blood sugar control. You could do everything right, everything by the book but anything can affect it and when you lose that control you feel like a failure”.
Throughout this period Jack was hospitalised multiple times suffering from the complication diabetic ketoacidosis (DKA). Ketoacidosis occurs when the body has insufficient insulin to allow enough glucose to enter the cells and then produces acidic ketone bodies, which are released into the blood. When the blood gets too acidic, the body starts to shut down. DKA is a serious short-term complication which can result in death if not treated quickly.
Good mental health is crucial to properly self-manage diabetes. “There’s a really clear link between psychological distress and diabetes management,” says Dr Rose Stewart, who is a Principal Clinical Psychologist working in diabetes psychology. She provides therapy support at diabetic clinics and works in developing guided self-help resources for people living with type 1 diabetes in Wales. She says:
”The more distress a person feels, the harder it is for them to manage their diabetes. This creates more distress and patients can get stuck in a vicious cycle. As well as having a big effect on mood, relationships and quality of life, people can get acutely ill when they’re not managing their diabetes”
Dr Stewart believes that psychological support is a vital part of diabetic care; “type 1 diabetes is particularly difficult because the hassle of managing it and so few people with diabetes can access specialist diabetes psychology support. And if they do talk about psychological distress it’s often disregarded as just being part of living with diabetes.” Jack has experienced this with a previous care team saying “I needed someone to listen to me when I said I wasn’t able to manage my diabetes and I wasn’t coping and I really didn’t need to be told to just work harder”
The NHS has recently taken innovative steps in its diabetes care by introducing and increasing access to new technologies such as flash glucose monitors and improved insulin pumps which are proven to help diabetes management. Dr Rose Stewart believes that these technologies can take the burden out of managing diabetes and benefit diabetics but psychological support still needs to be a priority. She says: “current tech is a long way off being 100% reliable and still requires a huge amount of work on the part of the person with diabetes. Tech can give people a false impression that they should be able to achieve perfect diabetes outcomes and this isn’t realistic and can lead to a sense of failure that can trigger further psychological distress”.
Jack agrees with Dr Rose Stewart saying “It’s only part of the solution. Solely focusing on the tech of diabetes and the physical aspects just feels like a pointless endeavour. My mental health needs to be supported for me to be able to support my physical health”.
So what is the future for diabetes care in the UK?
“I think that diabetes care should be tailored to the person who lives with it” concluded Dr Stewart. “Diabetics should be able to access all the technology, education, and support they need in a way that suits them. Every interaction a person with diabetes has with a care team should be about supporting them to reach their own goals not telling them what to do”
Dr Stewart understands the high costs of training specialist diabetes psychologists but with 80% of the NHS Diabetes budget spent on diabetes complications, Dr Stewart believes something drastically needs to be done stating:
“It’s essential that the future of diabetic care focusses on preventative strategies, that is getting people the tools and psychological support they need early on before big problems develop”
People living with type 1 diabetes have to make on average 180 additional decisions every day related to their condition and it’s obvious that diabetic care needs to change. Jack says: “Diabetes can make you feel frustrated, isolated and incredibly lonely and for me, I had some really difficult times in my life because of it.” Jack currently has access to psychological support for his diabetes that has positively impacted his diabetes management. “I think there is so much scope to improve the way that services currently work and there’s a real opportunity within diabetes care to improve the level of support that people get,” says Dr Stewart.
The number of people living with type 1 diabetes is increasing every single day and it’s obvious something about the current NHS diabetes care needs to change with the evidence pointing to psychological support. By introducing this support, the cost of diabetes complications and the number of people suffering these complications will likely decrease with the assurance that help can be given to people to manage their diabetes effectively and live long healthy lives.
You can join the campaign and sign the petition from Diabetes UK calling on health services in the UK to create national standards for diabetes emotional and mental health support.
Words by Ruby Flanagan
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