Diabetes: why mental well-being is so important for glycaemic control
Depression often goes hand in hand with a diabetes diagnosis, but mental health support is sorely lacking
More than six out of ten people with diabetes sometimes or often feel down due to the long-term condition, according to Diabetes UK.
Around 3.5 million people in the UK have a diagnosis of diabetes. The Diabetes UK survey of 8,500 people in 2017 found that 64% feel diabetes affects their emotional well-being, while one in three say diabetes gets in the way of them or their family members doing things they want to do.
of people with diabetes say it has affected their emotional well-being
Source: Diabetes UK
Depression often goes hand in hand with a diabetes diagnosis, but mental health support is sorely lacking
with diabetes Picture: iStock
More than six out of ten people with diabetes sometimes or often feel down due to the long-term condition, according to Diabetes UK.
Around 3.5 million people in the UK have a diagnosis of diabetes. The Diabetes UK survey of 8,500 people in 2017 found that 64% feel diabetes affects their emotional well-being, while one in three say diabetes gets in the way of them or their family members doing things they want to do.
64%
of people with diabetes say it has affected their emotional well-being
Source: Diabetes UK
The findings chime with those of an independent study by an online mental health support provider earlier this summer involving 500 people, which found that 75% of young adults (aged 16-34) feel their mental health has been harmed by their diabetes.
Lack of mental health support
However Diabetes UK and diabetes specialist nurses say the mental health support that is clearly needed by people with diabetes is scarce.
This lack of help to tackle the higher rates of depression, anxiety and eating disorders experienced by people with diabetes can compromise individuals’ physical health; a key part of managing the long-term condition is having the motivation to monitor it constantly and make the lifestyle changes that are necessary.
‘Mental health is one of the most pressing needs in diabetes. Getting timely support can be as good as adding in a medication’
Nicola Milne, diabetes specialist nurse
Poor emotional and psychological well-being in people with diabetes is associated with reduced quality of life, greater difficulties with self-management and treatment adherence, poorer glycaemic control and increased risk of complications.
People with diabetes are almost 50% more likely to die over a period of two to ten years if they also have depression, according to Diabetes UK.
3.5million
people are diagnosed with diabetes; 9 out of 10 have type 2 diabetes
Source: Diabetes UK
Manchester University NHS Foundation Trust community diabetes specialist nurse Nicola Milne, says: ‘Diabetes has massive mental health implications and is one of the most pressing needs in diabetes.
‘As much as we can do with medications, unless we can sort someone’s motivation or mood, we are not going to achieve anything. I feel very strongly that getting timely mental health support can be as good as adding in a medication.’
New diagnosis can lead to depression
Depression, which affects twice as many people with diabetes as those without, can be triggered by being newly diagnosed with diabetes, the daily responsibility of managing the condition and the fear of complications such as blindness and amputation.
There is also a condition called diabetes distress, which differs from depression, where the individual feels frustrated, defeated or overwhelmed by diabetes. Outwardly, the individual may not seem unhappy but all their feelings are focused on diabetes.
Multinational studies estimate diabetes distress could affect up to 44% of people diagnosed with either type 1 or type 2. It has been consistently linked with higher HbA1c levels, the long-term measure of blood glucose levels.
‘If you are going to look after your diabetes, you have to be motivated and willing to make changes to your life – that can have a huge emotional impact’
Libby Dowling, Diabetes UK senior clinical adviser
‘Diabetes is complex and it can be very demanding,’ says Diabetes UK senior clinical adviser Libby Dowling. ‘It is a condition where pretty much everything you do you have to consider how it is going to affect your diabetes.’
In managing the condition, individuals have a lot to consider on a daily basis, and there can also be the need to change lifestyle, lose weight and increase activity. Those taking insulin need to consider dose calculations, ensure an insulin and testing kit is at hand, monitor blood glucose levels, count carbs in their food, and may worry about having a ‘hypo’.
Psychological assessment missed
‘So if you are going to look after your diabetes well, you have to be really motivated and willing to make changes to your life and that can have a huge emotional impact,’ says Ms Dowling. ‘Our Future of Diabetes report last year really highlighted that emotional and psychological needs are a big thing and something we really feel needs to be improved.’
Being offered emotional and psychological support should be part of the annual review that everyone with diabetes should receive, says Diabetes UK. However, many people with diabetes are not receiving these check-ups. The proportion of people with type 1 diabetes in England and Wales receiving all eight NICE-recommended care processes in 2015-16 was 37%; for people with type 2 diabetes it was 54%, according to NHS Digital.
76%
of people with diabetes who want professional mental health support are not offered it
Source: Diabetes UK
The National Institute for Health and Care Excellence (NICE) recommends that all adults with diabetes are assessed for psychological problems and sets out a stepped care model for managing depressive symptoms in adults with chronic physical health problems.
Many diabetes teams struggle for access to psychologists and those who are available have long waiting lists – a year is not unusual, Ms Milne says. A Diabetes UK survey in 2015 found that 76% of people with diabetes who needed emotional or psychological support from a specialist were not offered it.
The shortage of psychologists means mental health support frequently falls to diabetes specialist nurses and practice nurses. But these roles are feeling severe strain due to lack of resources.
A joint position statement from the RCN, Diabetes UK and diabetes nursing group TREND-UK in 2014 said that despite being a cost-effective resource that could improve care, diabetes specialist nurse posts were being downbanded or lost amid recruitment freezes. People with less experience were being recruited to save money.
Ms Dowling says improving emotional care should be part of everyone’s job. Nurses should also feel that discussing someone’s mood or emotional state, as opposed to discussing blood pressure or another aspect of care, can be the best use of their limited time, she says.
‘Practice nurses are often concerned about talking about the emotional side of things. But we can give patients a lot by starting this conversation’
Libby Dowling
The Mood Information Prescription from Diabetes UK is well embedded in primary care, and can be used by any nurse who wants to have a structured conversation about a patient’s emotional well-being. It provides practical advice and tips and signposts to further support.
Diabetes UK resources
It’s everyone’s business
‘It is very easy to say it is a removed part of treatment but actually it is an integral part of diabetes management,’ Ms Dowling says.
‘A practice or community nurse is likely to be the person who someone with diabetes sees most often and trusts. Practice nurses are often concerned about talking about the emotional side of things and feel they are not trained if someone opens up about their feelings, that they may not have time and may not know who to refer them to.
‘But we can give patients a lot by starting this conversation. Often people just want to say how they feel, and they can feel enormously better for having it acknowledged that they are struggling, and hearing that many other patients may have the same feelings.’
Referrals to psychological therapies can be very helpful, and Diabetes UK has a telephone support line and local support groups that nurses may want to tell patients about, Ms Dowling says.
RELATED: Flash glucose monitoring: how to access ‘life-changing’ diabetes technology
Nurses are also exploring social prescribing – a way of linking patients in primary care with sources of support within the community – to bring people together, tackle isolation and improve well-being. ‘In the absence of formalised support there is a knit and natter group, gardening groups and some GPs have allotments,’ Ms Milne says. ‘There are a lot of these types of groups.’
Ultimately, the mental health of individuals with diabetes should be considered by all nurses who care for them. Supporting these patients' psychological well-being is inextricably linked to their self-management.
‘It is very easy to say it is a removed part of treatment but actually it is an integral part of diabetes management,’ says Ms Dowling.
How to talk to patients about diabetes distress
Nurses and other healthcare professionals should avoid judgemental, undermining and stigmatising language when speaking to people with diabetes.
NHS England published guidance in June 2018 that says terms such as ‘non-compliant’ or words that suggest clinicians are reprimanding patients or attributing complications to previous ‘poor control’ should not be used.
The language used by staff should seek to be empowering, respectful, empathetic and collaborative, it says:
- When people say something like ‘I hate diabetes’, recognise and acknowledge diabetes distress and its effect on well-being and diabetes management. Say something such as: ‘Thank you for sharing how you feel with me, it’s common to feel this way’ or ‘Diabetes isn’t just medical – your feelings about it are important’.
- Don’t focus on the ‘good’ or ‘bad’, or on ‘failing to’ carry out certain self-management activities, which can imply that following instructions will result in perfect glucose levels – the tools to manage diabetes are far from perfect.
- Try to avoid words such as ‘should’ or ‘can’t’ or ‘must’ or ‘must not’. This suggests that instructions must be followed, otherwise the individual may not achieve ‘perfect’ self-management. Instead, use words such as ‘could’ or ‘consider’ or ‘you could choose’.
- Avoid ‘disease’, ‘suffering with’ and ‘burden’ because of the negative implications. Don’t call people ‘a diabetic’, instead say a person ‘who has diabetes’ or ‘is living with diabetes’.
- Be sure to respond to words or behaviours that imply shame or embarrassment. For example: ‘There is no such thing as ‘good’ or ‘bad’ diabetes’. Or, ‘You’re not the sum of your diabetes numbers, it’s your efforts that matter most’.
Read NHS England’s guidance Language Matters: Language and diabetes
Erin Dean is a freelance health journalist
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