The relationship between diabetes and mental health is complex and significant. In 2017, we consulted with over 9,000 people living with or affected by with diabetes, a broad and far-reaching piece of work which resulted in our Future of Diabetes Report.
Through this consultation, we found that 63% of people often or sometimes feel down because of diabetes, with parents of children with Type 1 most likely to be affected. One respondent told us:
“The worst thing is the sheer isolation, I’m left to work it all out on my own with no help or support.”
A third told us they would be keen to have support from a trained professional:
“It’s hard for friends and family to really understand and they misinterpret your mood.”
People with diabetes experience disproportionately high rates of mental health problems such as depression, anxiety and eating disorders. Living with diabetes is a ‘mind game’. The prospect of complications, and for many (e.g. those with Type 1 diabetes, those with Type 2 on variable insulin doses, and those with complications), the constant hour-by-hour management of the condition make it an incredible emotional burden.
People living with diabetes tell us that the biggest issue is that they don’t feel their emotional health is looked after. They tell us that healthcare professionals can be preoccupied with numbers, and reducing the risk of physical complications – stroke, amputation, blindness – while avoiding the issue of mental or emotional health. They also tell us they don’t think their diabetes team can help, and that they feel ashamed for not coping.
But second to this, and perhaps more insidiously, people with diabetes of whatever type, are the target of widespread stigma. This stigma has two main elements: There are strong widely held beliefs that people with Type 2 diabetes have no one to blame but themselves for having diabetes, and that their lifestyle choices have led to the condition; ‘fat’, ‘lazy’, ‘brought it on himself’, are the kinder phrases.
In our services we know that people with Type 2 diabetes will rarely be involved in social media networks. They get too much of a hammering if they out themselves as having Type 2 diabetes. Instead they tend to contact us anonymously through our Online Forum. Conversely, this stigma reaches across to those with Type 1 diabetes, who have to constantly remind people that theirs is an autoimmune condition.
The other strong source of stigma is the pressure to meet the ‘ideal’ of good diabetes management. Management of diabetes can therefore become a numbers game; there’s so much data – blood glucose, HbA1c, blood pressure – surrounding management of diabetes, and people with diabetes have a vision for what ‘good control’ of diabetes looks like, so failure if they fall short of what they feel amounts to good, ‘ideal’ control, they can feel like a failure.
So why is poor mental health an issue? Simply put, the issue is that poor emotional health can affect diabetes management, and in turn the daily grind of diabetes management can affect emotional health.
The Diabetes UK report Minding the Gap (2008) showed that 85% of people with diabetes in the UK have either no defined access to psychological support and care, or only local generic services where knowledge of diabetes may be very limited. Our experience tells us that not much has changed in that respect. The report of the Diabetes All Party Parliamentary Group last year (2018) found that diabetes consultations provide limited opportunities to talk about emotional wellbeing; that national policy focus does not fully cater for all levels of need; that some access to psychological support in diabetes teams is patchy ; and that there are widespread challenges in rising demand allied to financial pressures – meaning waiting times for specialist services (including those for children and young people) were high.
Yet, the APPG report also found excellent practice and support in place in some areas. While this is a problem that’s been around for a long time, I have hope that now, as the health system moves to bridge the divide between physical and mental health, and as a society we are talking about mental health issues the time is right to find solutions.
What can we change? Well, small changes can make a big difference. One gentleman said to us:
“I would like to be asked “how are you”? Not how is your diabetes? How are your sugars? How’s your sight, feet, kidney function… I am not a computer screen of test results, and even a nod to that would improve matters so much for me.”
Assessment and support for mental health issues should be a routine part of diabetes care. There are great examples of best practice, which shows that it can be done. Increased training of diabetes healthcare professionals in mental health can help them recognise symptoms and provide support themselves. Dedicated time from a mental health professional to a diabetes service, can help to advise the team and provide care and treatment themselves if necessary for cases that require psychological/psychiatric input. We need to ensure that this is consistently provided everywhere and that everyone with diabetes has access to appropriate support for their mental health when they need it.
A broader understanding of the benefits of integrating physical and mental health will mean that there is more support across the NHS for setting up these services. Support is not always expensive. More options for peer support, mentoring both online and face to face can make a big difference. There is more research needed on diabetes and mental health, which has been highlighted by the Clinical Studies Groups we have been supporting.
We at Diabetes UK can help too. We have recently launched the ‘Diabetes and emotional health’ guide to help healthcare professionals to support the emotional needs of adults with diabetes. We will also be running an emotional health ChangeLab where healthcare professionals, people living with diabetes and their families and carers will look at ways to make emotional wellbeing a routine part of diabetes care.
We can also offer support to people with the condition. We have a Helpline, an online community Forum who give wise and sage advice, and we also have 360 local groups who can provide peer support and a sense of community. Our Helpline number is 0345 123 2399 and you can find out more about the support we offer on our website www.diabetes.org.uk