Qualitative interview study with people with diabetes and severe mental illness, family members and supporters, and health-care staff (objective 5)

Introduction

The qualitative study aimed to explore the experiences of people living with and managing diabetes alongside SMI. An overarching topic was the extent to which social circumstances (e.g. money for transportation, type of neighbourhood, carer role) enabled or hindered people’s ability to receive effective health care and to action preventative measures for diabetes and mental illness – eliciting both actual experiences of people with diabetes and SMI and the perceptions of the influence of these factors from health-care staff.

Objectives

This study focused on objective 5, to understand the factors that influence access to, and receipt of, diabetes care for people with SMI. We also aimed to explore factors perceived to be associated with variation in diabetes and mental health outcomes (objective 2) and perceived impacts of SMI on diabetes management, and vice versa.

As the quantitative analyses of patient records were limited to investigation of variables recorded in these data, we aimed to use the qualitative study to explore additional factors that may not be available from health-care records. We intended to develop a more in-depth understanding of the reasons for differences in diabetes care provision between people with and people without SMI observed in the observational study and to explore how health services may be supporting diabetes management. We also aimed to understand how people interacted with various health-care interventions for their diabetes and to explore perceived benefits associated with these interventions (objective 7). Insights were expected to also feed back into the quantitative study of health-care interventions (objective 7 analyses).

Methods

Ethics approval

Approval for this element of the study was given by the Greater Manchester West Research Ethics Committee (reference number 18/NW/0005).

Sample

We included people living with both SMI and diabetes; those providing informal care, such as family members and close friends; and health-care staff. Eligibility criteria and the sampling strategy for each of these participant groups were as follows.

People with diabetes and severe mental illness

• Aged ≥ 18 years.
• Recorded diagnosis of SMI (schizophrenia, schizoaffective disorder, bipolar disorder and manic episodes, or non-organic psychoses), excluding those experiencing an acute relapse.
• Diagnosis of diabetes (excluding gestational diabetes).
• Living in the community (including supported housing, but not admitted to acute hospital settings).
• Had the capacity to provide informed consent to participate in the study.

We employed a maximum variation sampling strategy132 to include participants whose experiences were likely to differ, enabling us to explore the range of factors potentially affecting diabetes management, and to capture variations in diabetes care experiences.

From the expert consultation and scoping of the literature (see Chapter 4), we identified the following participant characteristics that were expected to affect diabetes experiences and management:

• demographic (age, sex) and geographical (deprivation, region) characteristics
• family composition and presence of carer/supporter
• mental health and diabetes diagnoses
• diabetes medication
• diabetes control (determined by data obtained from health record)
• presence of other comorbidities
• provider of mental health care (e.g. primary or secondary mental health)
• provider of diabetes health care (e.g. primary care, secondary care).

We initially adopted a convenience sampling strategy in recruitment sites because of recognised challenges to identifying and recruiting this patient population.133 We continuously monitored variations in the sample, and worked with recruiting sites to increase diversity and include particular characteristics that were not represented. For example, we sought to target people with a history of diabetes complications to increase the sample variation. Our sampling strategy could not be informed by preliminary analysis of CPRD data, as originally planned, owing to delays in obtaining CPRD data.

To achieve diversity across the relevant characteristics, we aimed to recruit a minimum of 30 patients. In addition to adding participants who were under-represented in the study (e.g. those with poor diabetes control), we also monitored data saturation in the later stages of recruitment, and continued to recruit patients, with a stopping criteria of two, until we were satisfied that no new distinct ideas relevant to the study objectives were emerging.134

Family members/supporters

We defined ‘family members/supporters’ as adults who were involved in the care of a person with diabetes and SMI taking part in the study. We expected that this would include a spouse/partner, parent or other family member, or close friend. They did not have to live with the person they supported, but they had to be identified by a participating person with diabetes and SMI as providing support for their health.

As people with SMI are more likely than the general diabetes population to have inadequate social support,135 we anticipated that the total sample would be 15–20. To reach these numbers, we aimed to monitor recruitment and adjust purposive sampling of people with diabetes and SMI accordingly (i.e. to include more people with diabetes and SMI living with other adults).

Health-care staff

We defined health-care staff as commissioners, clinicians, nurses and other staff who are involved in health-care services for SMI and diabetes. We used a purposive sampling strategy to ensure a mix of staff roles from differing organisations and services. We aimed to recruit a minimum of 15 staff to achieve this variation and continued to recruit participants, with a stopping criterion of one, until we achieved data saturation or a sufficient mix of staff roles (which we expected would affect perspectives and experiences of supporting this population).

Recruitment

People with diabetes and severe mental illness

We identified and recruited potential participants with diabetes and SMI through three routes:

1. Community mental health teams in NHS mental health trusts, which conducted electronic searches of registers or searched the case loads of psychiatrists and care co-ordinators. Learning from an earlier study,133 we prioritised the second strategy because of limited recording of diabetes diagnoses in patient records.
2. SMI and diabetes QOF registers61 in general practices. Practices identified patients who appeared on both the SMI and diabetes QOF registers using a query in the electronic patient record system.
3. Networks at the University of York, such as participants from another study who had consented to be contacted about taking part in future studies.136

Mental health trusts (n = 7) in two regions of England (North West, and Yorkshire and the Humber) and general practices (n = 10) in Yorkshire and the Humber were chosen to include rural and urban patient populations, areas of wealth and deprivation and areas where minority ethnic groups are well represented. We expected that individual general practices would yield low participant numbers, compared with mental health trusts. However, as previous research indicates that around 20–30% of people with SMI are treated in primary care only and not in specialist mental health services,137 it was important to recruit from both settings as support for diabetes may differ.138

Care co-ordinators and practice staff were asked to check that potential participants met the inclusion criteria for the study. Eligible participants were provided with an information pack about the study, containing an invitation letter from participating sites, a participant information sheet and response form (with prepaid envelope), and were asked to return a completed form to the research team if they were interested in taking part. A researcher telephoned those who were interested to introduce the study and answer any questions. Eligibility and capacity to consent were assessed during the telephone call, and a suitable date and time for an interview was arranged.

Family members/supporters

All participants with diabetes and SMI were asked to identify a family member/supporter during their interview. After the interview, the researcher explained that they would like to invite this person to take part in an interview as well and gave participants an invitation pack to provide to their named family member/supporter. Interested family member/supporter participants were asked to contact the research team or to return a completed response form. This approach was used successfully in the National Audit of Schizophrenia (involving the researcher DS) and avoids additional consent issues for service user participants.139

We aimed to recruit 15 family members/supporters. However, many participants with diabetes and SMI reported not having a family member or friend who provided support for their health, or the family member was unwilling to participate in the study. Recruiting trusts were therefore encouraged to renew recruitment efforts and we promoted the study more widely (including through the McPin Foundation, an organisation dedicated to engaging people experiencing mental health difficulties to participate in research), DIAMONDS VOICE members leveraged their networks, and we contacted family member participants from another study who had consented to be contacted about taking part in future studies.136

Health-care staff

Eligible health-care staff participants were identified through University of York networks, or by asking staff supporting the study in participating sites to identify people involved in diabetes care for people with SMI, and invite them to the study. Potential participants were invited by e-mail and provided with an information sheet about the study and asked to contact the study team if they wished to take part.

Written or audio-recorded verbal consent for all participants was taken at the time of interview. For telephone interviews and for participants with a limited understanding of written English, the researcher read out the statements contained in the study consent form to obtain verbal consent.

Data collection

We used in-depth semistructured interviews to explore individual experiences and perceptions of the management of diabetes in people with diabetes and SMI. Participants were offered the choice of a face-to-face or telephone interview; the former were conducted at home or another private venue, according to participant preference. For health-care staff, it was expected that interviews would be conducted at their workplace, although they were given the option of another suitable venue if preferred.

A standardised semistructured interview format was used for all participants, tailored in length to reflect the number of topics to be covered and to minimise participant burden. Key topics to explore aligned with study objectives and were guided by a social inequalities framework (see Report Supplementary Material 1). Separate interview guides for the three participant groups were developed in partnership with study co-investigators and DIAMONDS VOICE members (see Chapter 3, Patient and public involvement), following key principles outlined by Arthur and Nazroo.140 Interview guides were also informed by the scoping of the literature and expert consultation process. This process led to the inclusion of new topics to explore (e.g. sleep difficulties), and to the rephrasing of questions to aid understanding and facilitate appropriate responses from participants. The patient topic guide was piloted with a DIAMONDS VOICE member and feedback was used to refine the guide before commencing data collection.

Topic guides were designed so that interviews with people with diabetes and SMI and with family members/supporters would last approximately 45–60 minutes to allow for sufficient exploration while minimising participant burden. This was particularly important for people with diabetes and SMI, some of whom were likely to have cognitive and attention difficulties.2 To enable staff to take part during working hours, interviews were designed to last approximately 30 minutes (fewer topics were included in these). Interview guides were employed flexibly (e.g. ordering of topics and wording of specific questions were tailored to individual participants), but ensured that key topics were covered.

Data were collected by Sue Bellass, an experienced qualitative researcher with experience of working with people with cognitive and attentional difficulties and with people who may have fluctuating mental capacity. Sue Bellass was supported by Najma Siddiqi and Jo Taylor throughout the data collection period.

We planned to audio-record interviews, but allowed participants to consent separately to this. Two participants with diabetes and SMI and four staff members declined audio-recording. Recorded interviews were transcribed (intelligent verbatim) for analysis by a subcontractor with experience in transcribing audio for academic research. For interviews that were not recorded, the researcher made extensive field notes immediately after the interview. We sought to include non-English speakers (our primary research sites include significant South Asian populations, who are at greater risk of diabetes and SMI) and used a translator for one interview with a service user from the South Asian community.

Data analysis

The framework method was used to analyse interview data, to allow for inductive analysis and analysis of a priori themes and to enable us to move iteratively through the different stages in the analytical process to develop explanatory accounts and facilitate mixed-methods integration.141,142

NVivo version 12 was used to manage and code anonymised interview transcripts, to test and apply the coding frameworks, to identify and describe themes, and to explore potential differences between participant groups.

Analysis involved two key stages (incorporating the five steps of framework analysis).141

Stage 1: developing and applying the coding frameworks [framework step 1 (‘conceptual scaffolding’), step 2 (‘indexing’) and step 3 (‘coding’)]

This involved identifying and extracting recurring ideas and concepts from across the data and developing thematic coding frameworks (step 1), which incorporated a priori descriptive themes based on the study objectives (including diabetes care experiences, and diabetes knowledge and education), as well as those identified during analysis. To explore differences between participant groups, we analysed these data separately, starting with people with diabetes and SMI and then applying and refining the coding framework for the analysis of family members and health-care staff.

The coding frameworks were tested and modified as follows (step 2):

• The coding framework for people with diabetes and SMI was tested with eight interview transcripts, chosen to represent a range of participants: two males and two females with bipolar disorder, and two males and two females with schizophrenia.
• For family members, the diabetes and SMI participants’ framework was adapted and tested at the same time because of the small number of participants.
• For staff, the diabetes and SMI participants’ framework was adapted and tested using four interviews, drawn from different staff groups to ensure that the diversity of experiences was accounted for.

Once the frameworks were finalised, all interviews were coded using NVivo (step 3). A record of how each framework was modified during development and testing was logged (manually for people with diabetes and SMI and in NVivo for family members and staff). The final frameworks can be found in Appendix 5, Boxes 1–3.

Stage 2: identifying cross-cutting themes and exploring relationships between themes [framework step 4 (‘descriptive analysis’) and step 5 (‘explanatory analysis’)]

We then explored the coded data (by theme and subtheme) to identify thematic patterns and classify findings into higher-order themes and to describe these with reference to relevant coded data (step 4). Again, we started with the data from participants with diabetes and SMI to develop themes and mapped the findings from family members and supporters onto these to explore similarities and differences and to refine the meaning and descriptions of themes. This was an iterative process involving regular discussion among the qualitative study team, using mind-mapping to explore links between themes (step 5) and continuous checking against the coded data to ensure that themes represented the accounts of all participants. Deviant cases were analysed to understand the variation in managing diabetes in the sample of people with diabetes and SMI, and coding matrix queries were used in NVivo to explore potential differences in diabetes experiences between people with schizophrenia and bipolar disorder.

In a final step, a table with the main themes and subthemes mapped to coded data (see Appendix 6, Tables 33–40) was shared with the wider research team for sense-checking and interpretation, and to explore further the relationships between themes and the meaning of findings in the context of the social inequalities framework that underpinned the study as a whole (step 5).

Ensuring quality of data analysis

To ensure consistency, the key steps of the data analysis were carried out by the same person for each group (participants with diabetes and SMI, and staff data: JL; family member data: Lyndsey Kramer, with guidance from JL). To ensure reliability, coding was regularly discussed with Jo Taylor and Sue Bellass, who also checked random samples of coded transcripts during the initial stages. To ensure credibility and authenticity of findings, preliminary findings were discussed with people with diabetes and SMI, family members and staff at co-design workshops (see Chapter 7, Co-design workshops) and at regular meetings involving John Radford (service user co-investigator).

Results

In total, we interviewed 39 people with diabetes and SMI, nine family members and 30 health-care staff.

Participant characteristics

Of the 39 people with diabetes and SMI, 22 (56%) were men and 17 (44%) women (Table 24). Schizophrenia was the most common SMI diagnosis (n = 22, 56%), followed by bipolar disorder (n = 13, 33%), schizoaffective disorder (n = 2, 5%) and depressive psychosis (n = 2, 55%). Most participants (n = 36, 92%) had a diagnosis of T2DM; three (8%) had type 1 diabetes. Twenty-three (59%) participants had received a diagnosis of SMI before their diabetes diagnosis, two (5%) had received the diabetes diagnosis first and two (5%) had received it at the same time; for the remainder, diagnosis order was unknown (n = 12, 31%). The mean age of participants was 53 years (range 28–71 years), with women being older than men (females, mean 55 years; males, mean 52 years). Most participants identified as white (n = 27, 69%), with others identifying as Asian/Asian British (n = 2, 5%), black/African/Caribbean/black British (n = 3, 8%) and mixed/multiple (n = 2, 5%) ethnic groups. Information on ethnicity was missing for five (13%) participants. The highest education level varied, with participants ranging from having no qualifications (n = 9, 23%) to 10 (26%) having qualifications beyond General Certificate of Secondary Education (GCSE) level. Data on education were missing for three (8%) participants. Only two (5%) participants were working, whereas 32 (82%) were unemployed and the remainder (n = 5, 13%) were retired.

As shown in Table 25, among the nine family members in the final sample, six were female; ages ranged from 37 to 73 years (mean 59 years) and all participants who identified an ethnic group were white British (n = 8); one person’s ethnicity information was not recorded. All participants with recorded education data were educated to GCSE level or above, with six educated beyond degree level. Two participants had missing education data. Most family members were married to the person they supported (n = 6); of the remainder, two were parents and one was the adult child of the participant with diabetes and SMI.

As shown in Table 26, the 30 staff members were from a variety of disciplines and had varied training and experience. Twelve (40%) participants in this group had their key training in mental health, 10 (33%) in physical health and five (17%) in a combination of the two. The remaining participants had training in management (n = 2, 7%) and social work (n = 1, 3%). Four (13%) participants were GPs, 11 (37%) were mental health nurses, three (10%) were physical health nurses, two (7%) were dietitians, two (7%) were pharmacists, four (13%) were psychiatrists and the remaining four staff members comprised an NHS commissioner, a diabetologist, a practice manager and a recovery support worker. Two (7%) of the nurse participants also worked as care co-ordinators.

The analysis of interviews identified eight key themes, which are described in the following sections, accompanied by supporting quotations. A supplementary table containing further quotations for each theme and subtheme can be found in Appendix 6, Tables 33–40.

Theme 1: mental illness affects everything

Some of the participant quotations in this section have been reproduced with permission from Bellass et al.143 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

The pervasive effect of severe mental illness

Participants with diabetes and SMI described the pervasive effect of their mental health problems on their daily lives, for example on their ability to make or maintain friendships, retain a driving licence, engage in personal or household care, leave the house or keep appointments. SMI appeared to have a withering effect on social worlds, as one participant described:

I’m just getting worse actually, not going out, putting myself off, not going to the shops or anything like that. I make appointments and then I cancel them, I used to have friends, but I haven’t got any any more, they’ve all deserted me.

In addition, their mental illness affected their ability to work and many participants relied on state benefits for financial support, a system that was perceived to disadvantage them through disregarding the disabling effect of their enduring mental illness. Several staff described time-consuming attempts to support service user applications for benefits, which were not always successful. When asked directly about the impact of their financial situation on their health, however, many participants with diabetes and SMI tended not to highlight their limited resources, perhaps normalising their constrained circumstances. By contrast, the impact of lack of employment and reduced economic resources on healthy dietary choices was discussed by several staff participants:

. . . patients with mental health . . . often are not in employment and are living on very very much reduced resources, and when you are discussing what foods to buy and prepare, often it’s very difficult for them to afford a lot of what you are asking them to [buy].

Foregrounding mental illness

For all three participant groups, the effects of having SMI were perceived to overshadow the experience of diabetes and other physical health conditions. Participants spoke of diabetes self-management as being ‘governed’ by mental health (ES-T2-02, female, aged 63 years, bipolar disorder), or of mental health problems being ‘more all-consuming’ (ES-T5-03, nurse). Similarly, a family member noted that:

I know you’re looking at diabetes and mental health . . . but, from my point of view, the issues are, without a doubt, the mental health issues, not the diabetes.

The foregrounding of SMI and associated overshadowing of physical health was particularly acute when experiencing a SMI relapse, as the following service user explained:

. . . the sort of GP service had tried to do a diagnosis, tried to tell me it [diabetes] was important, which was never going to have any impact, ‘cause when you’re mad as a hatter, you don’t take any notice. They’re just noise in a corner.

Being unwell with mental illness was perceived to be a significant barrier to diabetes self-management, with some staff participants remarking that stable mental health was an important factor in physical health management. One participant suggested that, at times of poor mental health, successful self-management needed to be redefined:

If someone is unwell with their mental health they are just trying to survive . . . they don’t want to hear the advice on smoking and diet, they just need to get through the day, and if they are eating something, it’s a victory, not necessarily eating a healthy meal, it’s just eating a meal.

Persistence and powerlessness

A dominant feature of their mental health problems for many participants was the persisting, unrelenting nature of their condition, which could leave them feeling powerless. One participant reported that their SMI is:

. . . something actually inside of your head all the time, and it’s like you’re carrying around mental illness . . . it’s just like having a cold, you want to get rid of it but you can’t. [. . .] it just keeps going round and re-playing and re-playing . . . and when am I going to get off the circle? And you can’t because it’s mental . . . I mean, it’s not like a diet . . . you can change your diet. You can’t change your mental illness.

Despite feelings of helplessness, participants described efforts to manage their mental illness, including engaging in physical exercise and practising religion. Most participants described taking at least one medication (often many more) for their SMI; for many, this was an unquestioned part of their lives. For some, however, this represented an unpleasant aspect of their daily reality, adding to their feelings of powerlessness as they disliked having to take medication but felt that they had no choice:

I mean, I take around 20 tablets a day . . . and I hate that, I hate that, I hate taking all of them, but it’s got to be done.

. . . you wouldn’t take them if you had the choice. I mean, I am desperate, so I take my medication.

Theme 2: not just two illnesses – multimorbidity and diabetes management

Poor physical health and everyday life

Many participants with diabetes and SMI described living with multiple health conditions and problems, including cardiovascular and respiratory illnesses, such as angina, chronic obstructive pulmonary disease (COPD) and asthma; musculoskeletal problems, such as osteoarthritis or inflammatory arthritis; and other conditions, such as urinary incontinence, difficulties with eyesight, sleep problems or gastrointestinal conditions. Staff participants described the complexity of multimorbidity in terms of risk for the SMI and diabetes population:

I mean, definitely, the rates of the diabetic complications are higher in our group of SMI patients, as they will often have cardiac disease or cardiovascular disease at an earlier onset, I would say, than our non-SMI patients.

This increased risk of multimorbidity could lead to polypharmacy, as one nurse noted:

. . . and normally if they are on diabetes tablets, they are on blood pressure tablets, and if they are on blood pressure tablets, they are on cholesterol tablets, if they are on cholesterol tablets, you know, they’ll be on something else . . .

Rather than describing their health conditions in terms of associated risk, participants with diabetes and SMI tended to illustrate how their health problems created limitations in their everyday lives. For one person, the combination of their conditions placed significant restrictions on their freedom:

My COPD only allows me to go to the bottom there, and I’m coughing and weeing myself and everything [. . .] I wear nappies now, I daren’t go out. I only go somewhere, where my scooter will take me.

The constraints placed on people with diabetes and SMI by their poor physical health often affected their ability to exercise, and hence manage their diabetes, even when motivated to do so, as one person explained:

I’m waiting for a knee operation, I can’t get about as well as I used to [. . .] they won’t do the operation unless the leg muscle is strong. That is why I try and swim to keep the strength in the leg muscles. I walk as well. But unfortunately, I can’t do as much as I would like.

Precedence-taking in the context of multimorbidity

One of the key challenges for participants managing SMI and diabetes alongside other chronic conditions was deciding which to prioritise. Some staff described their patients as taking a ‘fire-fighting’ approach by attending to the problem that was causing the most difficulty at that moment:

The condition that’s causing the most immediate difficulty is going to be the one that gets the attention, so somebody has daily pain, that pain is going to take more attention than the diabetes, which isn’t causing any immediate pain but is a long-term complication and consequence. It’s a silent killer.

Some participants described how they did not see immediate consequences when they did not manage their diabetes well. One participant, for example, did not feel the need to improve their diabetes management because they had ‘not had to hit that point yet’ (ES-G2-01, male, aged 45 years, bipolar disorder), and another emphasised the lack of feedback from the condition:

It’s a funny one, diabetes, I mean, you just don’t know until it’s too late how it’s affecting you.

This lack of visibility of diabetes may explain why physical and mental health conditions that are having a more salient effect on everyday life are prioritised.

Alternatively, having multiple health conditions may become so overwhelming that it feels easier not to manage any of them, as one family member observed:

I also think she gets quite confused, because she’s got things going on, not just the diabetes but she’s got other ailments, you know, [. . .] I think sometimes it will come as a bit overwhelming because she thinks, ‘well, there’s too many things that I’ve got to think about what I can and can’t eat. I’m just going to ignore it’, if you know what I mean.

Theme 3: interacting conditions, overlapping symptoms

Some of the participant quotations in this section have been reproduced with permission from Bellass et al.143 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

Many participants had noticed an overlap in their conditions. People described struggling to identify whether their diabetes or their mental health was causing symptoms such as low mood, anxiety or fatigue, and some suggested that it could be a combination of the two:

. . . if I go on a high, sometimes, they’ve got to check my blood sugars, because they don’t know if it’s the blood sugars, that are causing me to go a bit loopy. Or it’s my mental illness.

Many participants also stated that their conditions could affect each other, with one person describing a ‘direct correlation between the two’ (ES-G2-01 male, aged 45 years, bipolar disorder). This close link meant that poor diabetes control had a direct impact on participants’ mental health and vice versa:

Oh yeah, definitely, because you need to be careful what you eat, being overweight. I mean, that makes me anxious. That does upset me. And knowing that I’m diabetic, knowing I’m overweight, I am. That upsets me and that makes my anxiety worse and that makes the hallucinations worse. There’s definitely a connection.

One participant who had access to blood sugar monitoring equipment described seeing their blood sugars increase as a result of anxiety:

When I’m hyper, I’m, like, showing the meter to my partner, and stuff, and he’s like, ‘well why is that high?’ But it’s how my body reacts. It’s like as if the anxiety makes it go up as well.

Not all participants with diabetes and SMI agreed that there was a link between their conditions; those who felt that there was no overlap or interaction mostly had a diagnosis of schizophrenia or psychosis. One participant described being uncertain if a link existed:

I don’t know. If my blood sugar’s dodgy, I do feel ill. But I’m not quite sure if there’s a link to my mental illness and diabetes really.

Staff participants had also noticed the interaction and overlap between diabetes and SMI, and suggested that symptoms such as irritability or manic episodes could also be linked to poor diabetes control, as one psychiatrist described:

And, on the other hand, if people are diabetic and they’re not maintaining their blood sugars right, it can give rise to symptoms which are synonymous with anxiety and low mood, so there is a big interface between diabetes and mental illness.

A nurse also noted that behavioural symptoms could be interpreted by staff as a warning sign for poor diabetes control:

When it’s not managed well, when they’re not taking their insulin or taking their metformin when they should, when the blood sugars are high, they become more aggressive, argumentative, that’s often a sign that they’re not managing it properly and it might not just be a sign of their mental health deteriorating, because it could be a physical cause like diabetes.

This suggests that people with diabetes and SMI may be facing an additional barrier to effectively managing their diabetes, in that they need to understand the underlying cause of their symptoms before they are able to manage them, but this may be difficult or confusing. Most participants in our sample did not have access to blood sugar monitoring equipment, which could help to distinguish between symptoms of diabetes and SMI. If this group interpret symptoms as being linked to mental illness when they are actually physical, and vice versa, this could lead to conditions not being managed appropriately and exacerbating each other in a vicious cycle.

Mental health medication and diabetes management

As outlined in theme 1 (see Theme 1: mental illness affects everything), many participants in this study discussed the side effects of their antipsychotics and the impact that these had on their physical health and diabetes management. Participants, especially those with schizophrenia and psychosis, described extreme and rapid weight gain, as well as a constant hunger, as a consequence of their medication, which caused difficulties in diabetes management. Some participants felt that medication had caused their diabetes in the first place:

I got the schizophrenia and then I got the Clozaril [^®; Mylan Products Ltd, Potters Bar, UK] and then I got the weight gain and then I got the diabetes.

Participants also emphasised the lethargy caused by SMI medication, which could affect people’s ability to manage diabetes:

It is and the medication that I’m taking. It makes me hungry and it makes me tired. Quite normal for me to have a couple hours’ sleep during the day, but if I didn’t take the tablets, I wouldn’t be snoozing like that.

Staff participants and family members also highlighted the issue of mental health medication and its effects on physical health and well-being. As one nurse explained:

. . . the medication is a big thing, they might feel slowed down, the less they do, so that adds to the weight gain.

A parent also described the extreme weight gain and ‘slowing down’ experienced by their son as a result of his medication:

. . . [son] weighed 79 kg; at his largest he went up to 180 kg from being on the mental health drugs, which is as a result of the type of medicine they give you. Because, you understand, the medicine slows down your mind. But it slows down all parts of your body.

Theme 4: the effect of mood on diabetes management

Some of the participant quotations in this section have been reproduced with permission from Bellass et al.143 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

Fluctuating moods, fluctuating management

Participants described experiencing fluctuating moods that differed from SMI relapses, and were often part of their daily life. Low mood could lead to poor motivation, low self-esteem and pessimism, which, as participants explained, could derail their efforts to manage their diabetes and their health generally:

. . . it’s mostly the exercise, but it’s also diet as well. You just eat more poorly and put weight on, and it’s just all those things that you associate with depression, are actually also associated with poor physical health.

Participants linked low mood and anxiety to lethargy, not wanting to exercise or engage in self-care, and a reluctance to leave the house, all of which affected diabetes management. Eating habits were prominent in participants’ accounts, with many people describing ‘comfort eating’ foods that they knew could negatively affect their diabetes when they felt anxious or had low mood:

I think definitely there is a link there, in if your blood sugar is low and you feel depressed or fat or you’re anxious or feeling paranoid, then you want comfort and I find that in naughty foods like crisps and chocolate.

Family member participants had also noticed the effects of low mood on diabetes management, as the daughter of one participant with diabetes and SMI explained:

If she’s stressed or frustrated or angry or just not feeling 100%, she won’t be disciplined, especially with diet and what [she] should be doing to help, I suppose, control the diabetes.

Staff also acknowledged these links, and described low mood leading to diabetes taking a ‘back seat’, as one GP described:

I’ve seen patients who so, when their mental health deteriorates their eating deteriorates, so they may start to comfort eat, make the wrong food choices and so they lose their diabetic control. I’ve got a patient who, when her mother died, you know you can date things back, she said ‘I’ve got dreadful glycaemic control’ and this dates back to the death of her mother and she is still in a bereavement phase and the diabetes is just not important for her.

More extreme drops in mood were also described, which could cause suicidal feelings and a sense of total hopelessness. At these times, participants did not look after their physical health at all:

. . . when I’m depressed, there’s nothing that you could say that would, ‘cause you stop caring, it’s like, if you stop caring about yourself, or what happens to you, it’s very difficult then, for someone to say, ‘well you need to stop eating these, these and these’. It’s very, very difficult.

. . . so a lack of motivation, you know. ‘I don’t want to be here; therefore, why should I bother about this because I don’t care’. I forget the complications because I might not be here long enough to get them.

A psychiatrist also outlined the ongoing difficulties that this link between low mood and poor diabetes management could cause further down the line:

They’re relapsing but they’re not risky. They’re like, well . . . just see your GP, would be the answer. In the meantime, they’re not eating or they’re eating chocolate for five meals a day, because it’s easy and they’re not sleeping any more. Their weight is ballooning or shrinking, they’re getting more physically unwell, their blood sugars are raging. That person is 6 months down the line and they’re acutely psychotic. At that point, they’ve got retinopathy, their blood sugars are all over the place, then you’ve given yourself two big problems to manage, what would have been one small problem.

Worries about diabetes

Despite the foregrounding of SMI previously described, many participants with diabetes and SMI were aware of the severity of diabetes, and some reported that this caused them anxiety and stress, affecting their mental health more generally:

It does affect me badly because I worry. I worry about going to bed. I worry about sleeping because I think, ‘am I going to wake up or am I not going to wake up?’

The accumulation of these worries could have a negative effect on participants’ mental state. A family member participant described the effect that the additional burden of diabetes had on the mental health of the person they supported:

. . . being diagnosed with diabetes and it’s another thing that she’s got to think about and, you know, sort of contend with. So, I do think it has affected her mental health in that it’s an additional thing for her to worry about.

Theme 5: ‘the most critical person in my care’ – the role of informal support networks

The importance of family, friends and others

Many people with diabetes and SMI highlighted the role of family, friends and other informal supporters in helping them to manage their lives, emotionally and practically. Participants explained how these supporters provided essential emotional support as well as helping with everyday activities such as shopping, personal care and finances:

I go to church on a Sunday. My partner drives me to church and drops me and my daughter off while I’m at church and then picks me up. On a Monday, my mam and sister take me to Asda and then we go and have a coffee and then go and do our shopping. And then on a Tuesday and a Thursday, my mam’s now started taking me to the gym.

This type of support affected participants in a variety of ways. For example, one person described how their daughter could detect worsening mental health problems in their regular conversations and could ‘tell by my voice when I’m not right’ (ES-T3-04, female, aged 67 years, bipolar disorder), which would prompt her to arrange for professional support. Another participant described how sharing their difficulties helped them through a period of anxiety:

That’s what helped me through the anxiety a couple of years ago, was a girl at work who I was real close friends with, had said that she used to suffer from depression and anxiety [. . .] And she’d had the same thing, and talking to her, and I said, ‘how did you get through it?’

Participants also described how their informal supporters were able to step in and support them with their self-management. One participant described how their parent was able to ensure that they had a ‘dosette box’ (a medication container with multiple compartments) to organise their medications:

I have a dosette box because, the second time being in hospital, they put me on all these tablets, I’m not on as many now, but I couldn’t cope with the . . . and my dad was really good, he sorted that out for me.

The emotional support provided by family and friends was key for many people with diabetes and SMI. One person described how visiting the mosque with friends gave them ‘another motivation, [to] carry on’ (ES-G9-01, male, aged 38 years, schizophrenia). In extreme circumstances, this support could make the difference to participants deciding whether or not to continue living. One person summed up the huge impact and importance of this type of support:

Who helps me the most in continuing to be here at all? ‘Cause there’ve been occasions when that’s definitely been a possibility not to be true. My wife. So my unpaid carer, a 24-hour-a-day, unpaid carer, is the most critical person in my care.

Family history of diabetes was also discussed by some participants, and family members with diabetes were sometimes able to provide additional support and knowledge based on their own experiences, as this participant described:

. . . my relatives are important as well because people with diabetes in my family, we discuss issues and medication and the best way forward to manage it, so they are important connections.

Health-care staff too highlighted the ongoing and permanent nature of family support, compared with staff who ‘may think we’re very important but actually we may spend a couple of hours a week with the service user’ (ES-T6-01, mental health nurse). The different nature of peer relationships, compared with service user/staff relationships, was also acknowledged, with one staff member suggesting:

. . . they’re most probably more likely to listen to them [peers], than they would a professional.

Although many participants with diabetes and SMI highlighted the importance of informal support, some also discussed a lack or loss of support and the impact this could have. Several participants had relied on their parents for many years, for example, but, as their parents aged, they were now losing that support as a result of illness or death, leaving them isolated:

I’ve got family, although my mum’s passed away and my dad’s getting on a bit and he’s had heart surgery, so they can’t look after . . . they can’t help me any more, I’m on my own.

Participants also discussed losing support for other reasons, including the nature of their mental illness making social relationships difficult, poor physical health being a barrier to socialising outside the house and the loss of services they used to rely on such as day centres. One psychiatrist explained how a lack of support can make life more difficult for people with diabetes and SMI:

If they are lacking in the understanding, both from the physical perspective, but also from the emotional perspective, it makes it so much harder for the patient because the people immediately around them don’t get it.

Although staff members acknowledged the vital role informal support plays in the lives of people with diabetes and SMI, they also discussed the potentially negative effects that family and friends can have on diabetes management. Staff participants highlighted examples of family members bringing unhealthy foods to hospital when visiting inpatients, or using food as a means of pacification when people became difficult. Staff and family member participants also identified the negative effect that a close supporter can have on motivation to manage diabetes:

If you’ve got somebody who is dismissive of the attempt or knocks it down constantly, then that can be very unhelpful. And if you’ve got somebody who’s encouraging them to get the takeaway or, ‘don’t bother with that, it’s raining outside’. If your own motivation is a bit shaky to begin with, that’s probably not going to help.

. . . it’s easier having both of us having to watch our diet. If I munch away at huge bits of cake and he’d have to watch me – that would be awful.

The effects of being a supporter

Although the family members in our study made it clear that they loved the people they were supporting, and relationships were usually seen as reciprocal (with the label of ‘carer’ being forcibly rejected by two participants), interviews also demonstrated the toll that supporting someone with SMI and diabetes can take.

Family member participants explained how their supporter role had negatively affected their education, ability to work and their relationship with the person they supported. Some felt unable to have a break from their role, as they were reluctant to leave the person with diabetes and SMI for long periods. They also described times of crisis that had caused immense stress and upset:

I was waiting and waiting for a phone call back trying to calm him down, trying to stop him going out and, sort of, trying to meet his attackers or whatever, you know, with a knife in hand or whatever. You just don’t know what to do and you’re absolutely terrified for hours. And that shouldn’t happen, really.

Theme 6: diabetes health care

Some of the participant quotations in this section have been reproduced with permission from Bellass et al.143 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

Diabetes health care was an a priori theme identified as being of interest at the beginning of this study. Although nearly all participants reported receiving diabetes care, they tended to talk about it in simple and descriptive terms and were much less concerned with discussing their diabetes care than their mental health care. Most participants, when asked about diabetes care, talked about diabetes checks, which were most commonly carried out every 6–12 months, although some participants described having more regular appointments when necessary:

They’re 3 months at the moment, yeah. Three months at the moment, normally 6 months. [. . .] I do tend to go for the eye tests every year, and I do all the things that they ask me to do, and I do all the blood tests. And, if it’s more frequent, because they’re more worried, then I will go in.

For participants in this study, diabetes care was predominantly carried out in primary care, with people reporting attending their diabetes checks with diabetes nurses or doctors at their GP’s surgery. These appointments were described as including a blood test, along with health checks such as weight and height measurements. Some participants reported being asked questions about their health more generally, and being given advice about diet, weight and exercise in these appointments, but not all received this. One participant described their experience of a typical appointment:

I have a blood test every 3 months, approximately, for the diabetes, specifically to look at my blood sugar levels, and I also have my feet checked and a chat with the nurse about the results, about a couple of weeks after the blood test, where we discuss the results and any changes that need doing vis-à-vis diet, medication or exercise.

Despite the limited discussion around diabetes care, participants with diabetes and SMI did highlight a desire for more intensive diabetes management support, and explained how a lack of ongoing support and large gaps between diabetes checks could negatively affect their diabetes management:

. . . in diabetes, what you’re missing is the physiological feedback, and a consultation can, to a degree, give you some of the feedback that you lack on a minute-to-minute basis; even if it’s only three times a year. [. . .] Because you can lose the plot over the course of a year, whereas I think if you have an horizon of 4 months, that gives you an end point in sight.

Another participant with diabetes and SMI described his desire for more support for people with diabetes for financial budgeting and dietary planning to help with self-management:

It should be a lot more help. Not just from GPs and nurses, but there should be teams going out into communities, and people what are really overweight and really obese, they should be sitting them down and going over a budget plan and a plan to lose weight.

One GP described how this type of more intensive, ongoing support could lead to great successes in diabetes management for people with SMI:

I think most of it, the credit will probably have to go to the health-care assistants that we’ve got who often see these patients almost week in, week out, monitoring weight and blood pressures and that type of thing, and just able to develop some really really nice relationships of, kind of, trust and really plugging away at the health understanding behind, kind of, some of the lifestyle management with diabetes, and we’ve had some really good successes in terms of really impressive weight loss.

Theme 7: diabetes knowledge and education

Knowledge of diabetes

Knowledge of diabetes and diabetes management among participants with diabetes and SMI varied widely; some were very knowledgeable, whereas others gave incorrect information or simply said that they did not know about it:

I don’t know nowt about diabetes, and understand it.

Staff participants also identified the variation in knowledge among the people with diabetes and SMI that they worked with:

I think there is a huge variation, some people are very engaged in their health and will often know more than you do about, you know, diet [. . .] but you always have this big group that know what they should be doing, but just don’t do it for whatever reason, and, some people, they have so many other problems that it is just a last thing on their minds.

Staff members highlighted a lack of knowledge about healthy diets among people with diabetes and SMI whom they encountered, especially in relation to diabetes, for example those who ‘think that they can eat as much fruit as they want’ (ES-T5-02, mental health nurse). Staff participants’ expectations of knowledge among their patients also varied, with one nurse suggesting that:

. . . even with the people with mental health issues [. . .] People know what they should be eating and what they shouldn’t be eating these days.

Another, however, acknowledged that these kinds of expectations may be too high for people with SMI, and identified barriers to what may usually be considered general knowledge:

I thought [it] was general knowledge, but perhaps isn’t, perhaps, actually, it’s a lot to do with educational opportunities, having family that eat healthily, whatever.

Sources of information

Participants with diabetes and SMI reported that the information they had received about diabetes came from various sources, both formal (e.g. from health-care professionals, NHS leaflets or education courses) and informal (e.g. family members):

I’ve done my own research on YouTube and asking people who’s had diabetes, or people who know what good food are [. . .].

[At diabetes appointments] They give me booklets about sugar diabetes and things like that. They tell me what to eat.

Family members also provided participants with diabetes and SMI with information. Some participants, for example, had family members with diabetes who shared their own tips on management, whereas other family member participants reported educating themselves on diabetes to provide better support.

Although many participants with diabetes and SMI reported receiving information about their diabetes, the varying quality of this information was identified as a concern by staff participants:

I mean one of my clients does use an online forum where she can kind of go for support, but the problem, as I say, in some ways with online is who is monitoring that? Who is providing the information, you know? How accurate is it?, and so forth.

Several participants reported receiving information about healthy diets and achieving weight loss from commercial programmes such as Slimming World (Alfreton, UK):

I’ve done all sorts of diets in the past and if you’re on your own, you don’t lose well. So yes, they took me [to Slimming World]. And I’ve lost nearly two stone.

One nurse participant, however, highlighted how the dietary information given in these groups may be misleading for people with diabetes:

. . . even, like, being at Slimming World, you know, you’ll get people that come in and they’ll say, they have, like, a great big bowl of pasta with cheese on and it’s just like, ‘yeah you can have as much pasta as you like’, no you can’t. There’s only certain amounts of pasta you should actually be eating.

In contrast to many comments from staff participants about the types of information they provided about diabetes, and the varying ways in which they attempted to educate people on diabetes management, many participants with diabetes and SMI in our study reported receiving only perfunctory information such as leaflets or links to websites that they had to navigate themselves, rather than explanations that helped them understand their condition:

He [GP] never really sat me down and explained. I got all the leaflets and things, but I’m not one to read such things.

This discrepancy between staff and service user reports on the provision and usefulness of different sources of information may indicate a need for a more considered approach to providing diabetes management information.

Diabetes education courses

Participants with diabetes and SMI described a range of experiences of formal diabetes education: some had attended formal courses; some had been offered a place on a course but were unable to attend; and some reported that this had not been discussed, or offered to them. Participants who had attended courses gave positive feedback, mentioning the valuable information they had gained about diabetes and its effects, as well as how to better manage the condition, for example through diet and exercise:

And that was by far and away the best thing and the most useful thing, in terms of management. [. . .] it was the intervention of the community trust, with their education, that was provided by a dietitian, that really, really, made a difference.

[From interviewer notes] She reported having ‘zero knowledge’ before the course, it opened her eyes to diabetes, what it is, what it can do, and how it can be controlled. It was really interesting, and was successful because it was a friendly atmosphere where everyone wanted to join in.

Despite this positive feedback, some specific barriers to attending education courses were identified by staff participants, although very few participants with diabetes and SMI discussed these. One GP suggested that the group-work element of diabetes education courses could cause difficulties for people with SMI, for example:

. . . often, I think, a barrier to the structured education is the group work, so I don’t know if it would help if the group was people with similar other comorbidity, so other mental health problems, or whether a bit more one to one.

This was echoed by a participant with diabetes and SMI, who explained that ‘the actual getting out of the house and mixing, is a bit nerve-wracking’ and who had found they were ‘scared to death’ and ‘a shaking mess’ (ES-T3-09, female, aged 37 years, schizophrenia) when they did attend an education class. One participant with diabetes and SMI also discussed the fact that he had been offered an education course and was prevented from attending by his SMI symptoms:

Now, I was offered that by the GP service, and I went, ‘no thanks, I’m too busy being mad’.

Staff participants suggested that the duration of sessions or complexity of content may be difficult for some people with SMI as a result of literacy issues or problems with concentration, and one GP highlighted a lack of tolerance a person with diabetes and SMI had experienced at an education class:

And our services users classically tell us that some of them have problems with literacy, so they go along, they can’t read the information. The information is information overload. If you think that a lot of our service users have problems with cognition, with attention, with cognitive deficit. They can’t take on board the information; they don’t understand the information.

I sent a chap on a DESMOND [Diabetes Education and Self Management for Ongoing and Newly Diagnosed] course [T2DM education programmes provided by the NHS] recently, you know the diabetes education course, and he got kicked off because they didn’t like his behaviour, well you know he’s a chap with schizophrenia and actually even getting him there was massive.

These findings suggest that there is a need for a more tailored approach to diabetes education for this group, both for the provision of information and in structured education classes.

Getting everyone on board

Staff participants discussed the importance of diabetes management education for supporters and family members of people with diabetes and SMI. Participants gave examples of family members who were not aware of aspects of diabetes management, such as blood glucose monitoring or dietary requirements, for example. One staff member highlighted a parent who said they ‘know nothing about diabetes really’ (ES-T3-02, community mental health nurse), despite having diabetes themselves.

A GP participant highlighted the important role that informal supporters play in helping people with diabetes and SMI to manage their diet, medication and lifestyle, and emphasised the need for this group to be educated on the topic:

I think that it is important that they have the awareness and understanding of diabetes as well, for the importance of it. The education as well, they might be the ones cooking, so just make the health choices, understand if they are blood glucose testing you know the values, when to be worried, when to react, sometimes teaching the family member to give insulin. They need as much education as the patient.

Theme 8: person-centred care

Some of the participant quotations in this section have been reproduced with permission from Bellass et al.143 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

The value of person-centred care

Participants with diabetes and SMI identified many different health-care professionals whom they saw for their health conditions and expressed the most positivity when talking about professionals who focused on them as a whole person, understood their life circumstances as well as their multiple conditions and responded to emotional and social difficulties that fell outside their diagnosed condition management. This type of care is referred to as ‘person-centred care’ in the findings that follow, although it encompasses wider concepts such as continuity of care and relationships with staff who know people’s histories and the multiple challenges they face, and have the time and knowledge to help navigate complex systems.

To illustrate the person-centred care they valued, participants tended to focus on the informal conversations and relaxed interactions with these care providers, rather than the more practical or health-related aspects of their care. This emphasised the value they placed on having a relationship with their health-care provider(s):

My care co-ordinator’s brilliant, she comes every fortnight and we’ll just out for a cup of coffee and walk around the garden centre.

[About community psychiatric nurse (CPN)] We have a chat, see how I’m doing, she’s very supportive, sometimes she tells us about her family to give us a bit of amusing gossip.

Continuity of care was also described as important by participants, as it allowed them to build these relationships with health-care staff:

[About nurse] Yeah, she was great. [. . .] She was absolutely fantastic. She could tell . . . When we said hello to each other, she could tell my mood straight away. [. . .] She asked me in depth about the problems, the real problems and what was at the back of them. Sometimes she would recommend some medication to the psychiatrist. And that was a big help. I knew she cared. I knew she was listening, because there was a follow-up, so to speak.

A family member participant described the difficulties they had experienced when there was a lack of continuity of care:

We’ve got a whole team of doctors down here – you never get to see the same one twice, but you used to just have one face, GP you knew really well [. . .] There is a lot of difference between somebody knowing you and just seeing different people each time.

Participants with diabetes and SMI described the powerful impact that person-centred care, focused around positive relationships, could have on their mental and physical health, as well as the support they received from valued care providers for wider issues such as navigating the financial benefits system:

Most people over the years have always been supportive [. . .] And all these services are very good because, without these people, we would be a lot worse than what I am now. [. . .] Without these people, people wouldn’t be sane.

When it first came out, when they were first looking at benefit, it was looking like I would have to go for interview. And whoever was my consultant psychiatrist at the time intervened, so I never went for an interview.

Although the importance of building relationships between health-care providers and people with diabetes and SMI was emphasised by participants, the lack of time available to build these relationships was also identified as a barrier to this type of person-centred care. Participants acknowledged the time pressures health-care staff face and the limitations this puts on care, while expressing their disappointment that this was the case:

Because when you go to your doctor you’ve got 10 minutes, and that’s what the problem is. Many of the guys [people with SMI], by the time they’re reaching the stage, like, you’re talking, guys with diabetes, they’ve got lots of things going on with them. And they’re trying to tell the doctor and it becomes like . . . So the doctor doesn’t give them . . . he just says ‘come for your annual diabetes check, come for your tablet, we have to check your liver and your kidneys. We’ll do that once a year’.

I think GPs and practice nurse haven’t got the time to give that support, and it’s nothing against them, they just . . . their workload is so under pressure, do you know what I mean?

These findings illustrated a difficult dichotomy in care for this group. People want and value person-centred care from the professionals who treat them and the trust that this brings, but this may not always be possible within the restrictions of the current health-care system.

Separation of mental and physical health care

Despite valuing person-centred health care, participants with diabetes and SMI often viewed health-care professionals as having defined roles based in either physical or mental health and described seeking help on this basis. Some participants chose to keep these areas separate, despite acknowledging the links between the conditions. One participant, for example, felt that she would be wasting her GP’s time discussing mental health:

I’m seeing my GP this Wednesday with physical things. And the two will interact, but I can’t go and sit in a GP’s surgery and go on about my paranoia because it would take up an hour of a GP’s time and that’s not fair, not fair on the GP, not fair on the other patients. So I don’t do that.

Other participants felt that mental health teams did not have the knowledge or understanding of their physical conditions and vice versa, and that health-care professionals focused on their own areas:

Their focus is on diabetes, yeah. Whenever I do anything that’s specifically for diabetes, obviously, on the blood tests through the GP, and the results go through the diabetic nurse at the GP’s surgery, but when I go for the eye test and things like that, they never ask me about mental health problems, it’s never considered.

I don’t think the mental health side of things are necessarily that clued on diabetes.

Many staff member participants also recognised the separate nature of mental and physical health services and the lack of joined-up care that they saw in their practice:

I suppose it’s everybody is managing a certain part of that person’s either physical or mental, you know, needs but not really coming together to discuss it in a more holistic approach.

I mean, we’re aware of the impacts of the comorbid conditions, but we don’t tend to actually deal with those, other than via the GP.

Some participants, however, did feel that there was crossover in their care. One participant, for example, suggested that, although her doctor was just trying to find out the ‘one thing that’s wrong with you’, her mental health team understood that ‘it is a big picture, that it is the diabetes and everything’ (ES-T3-03, female, aged 34 years, bipolar disorder). Several people also suggested that their GP had knowledge and understanding of their mental health conditions.

It was clear from many comments from staff and participants with diabetes and SMI that physical and mental health-care systems were viewed and functioned, in the main, as separate entities.

Co-ordinating care

All participant groups talked about poor co-ordination of care and limited information-sharing between services as contributing to the separation of care for mental health and diabetes. Staff discussed experiencing time delays in getting health information about people with diabetes and SMI, and the difficulties of having to get access to information through GPs as they could not access it directly:

. . . if we are sending the bloods from our site, then they come to us, so can see blood sugars and we’ll have access to that. But the diabetic plan, as such, we don’t have access to it and it goes to the GP.

One community mental health nurse also highlighted how people with diabetes and SMI were often the only source of information available on their own physical health treatments:

No, you just find out from the patient, you don’t get any information passed back to you. It’s when you say to them ‘how comes you’ve come on metformin? When did this happen?’ that you find things out.

The lack of co-ordination between mental and physical health care was particularly highlighted by staff participants, despite their awareness of the links between SMI and physical health. One member of staff described the risk of health-care professionals becoming ‘blinkered’ by remaining ‘within their own branch’ (ES-T1-05, nurse/care co-ordinator) and identified the importance of taking in all available information to provide the best possible care. Another staff member described health providers’ responsibility to understand the nature of difficulties experienced by people with SMI and diabetes:

Everyone who’s involved with that has responsibility to understand both sides. The psychiatrist needs to understand the physical impact of both the condition and the treatment. The GP needs to understand the interactions between the two. Any physician, medical professional, acute hospital needs to understand that having the two together is going to make things more complicated. There isn’t a uniform answer, that one-size-fits-all approach.

Family member participants also described experiencing difficulties during their involvement in the care of people with diabetes and SMI and their frustrations at dealing with a system that they felt did not always understand the links between the conditions:

And I’m saying why if psychiatry caused the diabetes, why must be the GP be doing it? Why is mental health not interested enough to see what’s going on with the guys? Because very seldom does your GP talk to your psychiatrist. Maybe once in a while. They don’t even share the same computer system.

Now I remember saying to the hospital, ‘look, my wife has mental health issues. Please make sure there is provision’. And you get the impression that . . . just in one ear and out of the other. No mental health provision. No-one came to see her with regards to that issue.

These findings suggest that the lack of co-ordination in health care for people with diabetes and SMI may often occur at a systemic level, with many staff participants being aware of and frustrated by the inability to deliver the person-centred care that was identified as being the most valued by all parties.

Training needs

Many staff member participants identified their own lack of knowledge as a barrier to delivering person-centred care. Physical and mental health-care staff participants identified gaps in their training that would help them deliver care that accounted for the way conditions interacted and affected each other.

Several mental health support staff in our sample, for example, suggested that they would benefit from an improved understanding of diabetes care to better help people with diabetes and SMI to manage their conditions:

A better understanding of the types of diabetes, how to look for sign and symptoms of diabetes because it’s a bit ad hoc, what I remember and just generally managing it [. . .] So, it would be beneficial to all of us to have some education on it even if they’re not nurses, anybody.

It was also suggested by some staff participants that physical health staff could benefit from having a better understanding of mental health to improve care:

I think it’s very easy to focus on physical side of things, but the mental health is just a massive side of it and [. . .] I think if we were more trained and more aware of the mental health of a patient, I think it could probably alleviate a lot of the problems for both patients and the staff.

Examples of diagnostic overshadowing, whereby physical symptoms are attributed to a mental disorder rather than a somatic one, were given by participants with diabetes and SMI and staff member participants. These accounts highlight the consequences of diagnostic overshadowing and further illustrated the need for an understanding of both mental and physical health among health-care staff:

I’ve had patients on the wards who have complained endlessly about abdominal pain and it’s put down as delusional. When they actually collapse with a perforated bowel or ruptured appendix [. . .] or worse, then it’s like ‘oops, we didn’t look at that’.

I don’t know, he [GP], probably thinks, because I’ve got a mental illness, I’m just making everything up. Because I’ve faced that a lot over the years.

Finally, several staff participants noted the importance of any training that they did receive being mandatory and encouraged by management, or it would be unlikely to be attended because of time pressures.

Summary of findings

Themes from the qualitative enquiry, which were taken forward to the mixed synthesis (see Chapter 7) can be summarised as follows:

• Mental illness affects everything.
• Managing mental illness and diabetes is not just about coping with two illnesses – there are additional problems for diabetes management in multimorbidity.
• The conditions interact and have overlapping symptoms.
• Mood influences diabetes management.
• Informal support networks are important, and often lacking.
• There are gaps in diabetes health-care provision (a priori theme).
• Diabetes knowledge and education vary (a priori theme).
• Person-centred care and continuity of care are valued.