The isolation and loneliness of diabetes

University of Hull and Hull York Medical School research identifies and addresses negative impact of the condition to drive innovation in healthcare and treatment.

The importance of helping people manage the isolation and loneliness of diabetes has been highlighted in new research by the University of Hull and Hull York Medical School.

The study, which surveyed 3000 people in Hull and the East Riding living with type 2 diabetes – one of the most common chronic diseases in the world, focuses on the views and experiences of those with the condition – and has resulted in a series of recommendations to address their concerns and drive innovation in healthcare.

Professor Una Macleod, Dean of Hull York Medical School, said:

“The identification of issues such as loneliness and the stigma felt by people with type 2 diabetes will enable advances to be made in the support and treatment of the condition. The University of Hull and Hull York Medical School are committed to improving the health of people within our region and this is just one example of how our work is affecting diagnosis, guidance and treatment.”

Feelings of embarrassment, blame and guilt often characterise the experience of living with type 2 diabetes. It is frequently associated with negative perceptions and stigma. Many people with type 2 feel they are perceived by society in general as a burden on the health service.

Susan Hopcroft, who was diagnosed with type 2 diabetes in March 2015, said: “It was hard to accept. Everyone knows that with type 1 diabetes – you are born with it. But if you have type 2 people think it is your fault, that you haven’t looked after yourself properly.” 

At Christmas, the daily necessity of self-monitoring glucose levels and dietary constraints can be especially debilitating for those with diabetes.

“It is difficult to manage my condition on a daily basis and that can really affect what I choose to do – whether to go out or just stay at home. For example, at Christmas or going out for a friend’s birthday it isn’t easy to cope with not being able to eat the same food, the same birthday cake as everyone else. So instead – you just don’t go out.”

In Hull and East Yorkshire, there are more than 29,000 people with type 2 diabetes. Like type 1 diabetes, type 2 diabetes is a lifelong condition that causes a person’s blood glucose level to become too high. Type 2 diabetes occurs when the body doesn’t produce enough insulin or the body’s cells do not react to insulin. In the UK, around 90% of all adults with diabetes have type 2 diabetes.

Liz Walker, Professor of Health and Social Work Research at the University of Hull, said:

 “The physical symptoms and effects of diabetes can also take their toll, meaning that people may find it hard to enjoy everyday family activities, such as playing with children or grandchildren, which can have a negative effect on family relationships.  

“Similarly, mental wellbeing can be affected in many different ways. There is the loneliness and isolation, and the fear of the condition worsening which in complex cases may cause depression. We want to raise awareness of how people with diabetes are feeling and help them receive the best possible health care and support.” 

Thozhukat Sathyapalan, Professor of Endocrinology at Hull York Medical School, said: “The participants in our survey indicated there are a number of areas which health services could develop or improve. ‘A one stop shop’ would be beneficial – providing coordinated and joined-up care.  Better access to research studies, specialist services, such as podiatry and dietetic services and an increase in the use of technology to manage the condition are also suggested. The participants highlighted the need for clear support and guidance at the point of being diagnosed with type 2 diabetes, which could involve the whole family.

“Living with diabetes is about eating healthily, losing weight if you are overweight and exercising regularly.”

“But these kind of lifestyle choices are easier said than done – especially at this time of year.

It can be very isolating to prepare a family meal or go out for a staff night out and feel that you need to eat differently.

“Similarly trying to lose weight also affects mental wellbeing. It is incredibly important that people feel they have support around them in order to make positive changes, and also in the self-management of their condition in general. 

“Patients are, on the whole, asked to self-manage their condition, but they often lack the necessary information or guidance.

“Historically people haven’t been well-supported in staying well. One of the patients in our study said: ‘I never saw anyone, until I became really unwell with my diabetes and then my care was excellent’. 

“This situation needs to change so that we can help people deal with the condition to live the best life they can.” 

This research to help those with type 2 diabetes is just one of the ways that the University of Hull and Hull York Medical School are working towards better outcomes for patients in this region and beyond.