Type 2 Diabetes - framework for prevention, early detection and intervention: evaluation

4. Findings: perceptions and experiences of services delivered under the Framework

4.1 Introduction

The Framework forms part of the Scottish Government's Diet and Healthy Weight Delivery Plan and specifically outcome 3: people have access to effective weight management services. The logic model for the Framework's implementation sets out a series of short-, medium- and longer-term outcomes to achieve this. Although assessing the achievement of these outcomes was beyond the scope of this process evaluation, where appropriate, consideration is given to how the changes made to weight management services might contribute to the shorter-term outcomes. These outcomes reflect the Scottish Government's ambition to achieve:

• better identification of pre-diabetes and gestational diabetes
• better access to specialist care and weight management services
• higher quality of care for those at risk of type 2 diabetes, with gestational diabetes (or a history of GDM), and newly diagnosed with type 2 diabetes.

This chapter focuses on the experiences of patients who accessed the programmes implemented as part of the Framework, considering what motivated them to join a programme, how effective they were, what prompted people to drop out and maintenance of support. Their views and experiences provide valuable insight, particularly to the quality of care. As a small sample of those more likely to be positive and committed, the views cannot be considered representative.

4.2 Motivating factors

The interviews with patients and providers explored the factors that motivated patients to take part in weight management programmes and other support services for type 2 diabetes. Figure 4.1 summarises these key motivations.

Figure 4.1 Motivating Factors

• Diagnosis of pre-diabetes
• Recommendation by a professional
• COVID-19
• Pregnancy
• Desire to improve health

A diagnosis of pre-diabetes

For some patients, the diagnosis of pre-diabetes was the motivation to engage with weight management programmes. One patient explained:

"It's a disease I'd like to steer clear of and I was a bit surprised when I was told I was pre-diabetic. I wouldn't have thought my lifestyle would have led me down that road, so I've taken steps to ensure I don't develop [type 2 diabetes]." Patient, Ayrshire & Arran

However, staff interviewees described how, for others, a 'drip feed' approach was needed to ensure the consequences of a pre-diabetes diagnosis were understood and the need to make changes recognised – particularly where an unhealthy relationship with food was well established. Interviewees emphasised the importance of reiterating the message over time:

"Having that consistency of seeing the nursing team, it helps to reiterate key messages. It's about picking away at the surface until you can reach the stage where they want to do more." Health and social care staff, Ayrshire & Arran

Professional recommendation or referral

Referral from a GP can play an important role in providing information to motivate patients to take part, and some health and social care interviewees noted that a referral from a professional could give patients additional motivation to participate.

However, some weight management providers cautioned that patients who felt compelled to attend following a referral might not complete the programme. They noted that the readiness of patients to participate was essential and so self-referral or opt-in would be a more successful approach.

COVID-19

Whilst several staff members in the early adopter areas highlighted that COVID-19 had led to an increase in people's BMIs, as a result of reduced exercise and poorer eating habits during lockdown, others noted that the pandemic had stirred people into action. The fact that underlying health conditions like obesity and diabetes often negatively impacted on the outcomes of those with COVID-19 influenced the decision of some to lose weight:

"[COVID-19] played its part in my journey to where I am today." Patient, Tayside

This patient had breathing problems and, although tested negative for COVID-19, was diagnosed with type 2 diabetes and asthma and was referred to the Oviva support programme.

Other patients noted that COVID-19 created conditions that made it easier to change their lifestyle. A few of those accessing programmes reported that they found it easier to maintain a disciplined routine and eat healthily and exercise whilst the restrictions were in place. Similarly, another patient in Ayrshire & Arran said that lockdown had helped because she was not eating out with friends and went for a walk everyday. This patient felt that maintaining their current diet and exercise as restrictions eased would be a challenge and therefore declined the invitation to take part in Weigh to Go after Let's Prevent Diabetes:

"When COVID ends, life starts to take over again. I'll be out and about doing things that I've not been allowed to for a long time. The walk would disappear. I was fortunate that I got this opportunity at the right time for me and the world situation came at the right time as well. Had it not been for a pandemic and you weren't allowed to leave the house and do things, I might have had a different experience." Patient, Ayrshire & Arran

Health and social care staff also acknowledged the likely role of the pandemic and challenges with restrictions lifting and habits changing:

"I get the feeling, and we haven't done an audit, after initial lockdown, it affected people pretty well, it was seen as opportunity for people with pre-diabetes to exercise more or eat differently but now it's gone on too long. Now we're seeing people with pre-diabetes having tipped into diabetes." Health and social care staff, Ayrshire & Arran

Pregnancy

Pregnancy was also identified as providing a platform to engage and educate women at a time when their motivation to change their behaviour was high:

"They are fed up with hearing about their weight. Sometimes we need to turn it around and not focus on their weight but on the changes to baby and protecting them… If they can make changes, they're more likely to continue after the baby is born." Health and social care staff, Ayrshire & Arran

One woman supported by the midwifery service after a GDM diagnosis reinforced this view:

"Being pregnant, you don't want to put baby at risk… The long-term health implications you don't normally think about... [the information] gives you the jolt that you need. Also the eating advice given, it's really easy to follow. So I'd say I've done numerous diets before, e.g. Slimming World. It's not maintainable longer term, the information I've been given during pregnancy is more sustainable really." Patient, Ayrshire & Arran

Patients in Tayside echoed the importance of issues related to pregnancy. One in particular said she was motivated to take part in Counterweight Plus to lose weight in order to be eligible for IVF.

Desire to improve health

A patient in East Region noted that she was motivated to take part in total diet replacement in an attempt to eliminate the need for type 2 diabetes medication which was having unpleasant side effects for her. Others in the East Region and Tayside said that they wanted to improve their health so they could "be around" for their children and grandchildren.

4.3 Effectiveness of the programmes

In general, the patients were very positive about the programmes they had taken part in and felt they had met their needs. Their feedback is summarised below.

Pre-diabetes education

The five patients in Ayrshire & Arran who took part in Let's Prevent Diabetes valued the information and support provided towards reaching their own health goals:

"I've been happy with information and support I've been given; my weight loss has slowed down but I'm still losing. That's the main target." Patient, Ayrshire & Arran

"It wasn't new to me but it kind of spelt out what I [was] doing wrong." Patient, Ayrshire & Arran

Weight management

Participants in the Oviva support programme in Tayside were also positive about their experience. In particular, the tailored support and advice from dietitians and psychologists had helped them to make more informed choices about their eating habits:

"They have made a terrific difference – I am seriously thinking about what I eat." Patient, Tayside

GDM specialist care

Two of the patients in Ayrshire & Arran had been diagnosed with GDM and both had high praise for the specialist care they received. One interviewee recognised that they might not have been diagnosed if the BMI criteria for a glucose test had not been lowered and were grateful that they had the opportunity to make positive changes. Both interviewees felt the midwifery team provided reassurance and support throughout pregnancy:

"It's probably exceeded my expectations. Because of COVID, you kind of assume you're going to get less to it because of the way things are, but I felt very supported on phone or in person. Always encouraged to bring partner so he had info as well. I definitely didn't think I'd be as supported or as encouraged as I was. They're really positive about the changes that I've made, really encouraging." Patient, Ayrshire and Arran

Supporting the perception that pregnancy provides an opportune platform to bring about sustainable change, one also commented that it:

"[Got] the message across that it's not just about pregnancy but lifetime change." Patient, Ayrshire & Arran

Total diet replacement

Three of the people taking part in the total diet replacement programme in the East Region and two in Tayside took part in the evaluation. Interviewees were very positive about the support provided, with regular meetings with a dietitian taking place online throughout the programme, and additional text and email support in between meeting:

"[Dietitian] was always there to answer. Never at any point in the whole process have I felt lost or abandoned or unsure of anything. There's always been an answer to any question that I might have." Patient, East Region

Interviewees compared the programme favourably to others they had been involved with and reported outcomes including sustained weight loss and reduced blood glucose levels:

"[The programme is] structured, really easy to follow… I lost 25kg." Patient, Tayside

Another patient in Tayside noted that her polycystic ovary syndrome (PCOS) symptoms had reduced as a result of taking part.

A few interviewees described how the impact of the programme had gone beyond physical health benefits and included positive impact in terms of improved wellbeing, self-esteem and lifestyle:

"I feel better about myself… it has totally changed my lifestyle… it has made me feel my age rather than an old wifey." Patient, Tayside

"It's life-changing… My whole attitude to food has changed… I'm not wasting money on junk food [any more]." Patient, Tayside

Similarly, one patient in the East Region reported that the programme had enabled them to re-evaluate their lives:

"It made me realise the last 10-15 years how badly things had slipped, it's made me realise how I'd got there." Patient, East Region

4.4 Reasons for drop-out

There were multiple factors that service users identified as deterring the take-up and completion of weight management programmes. These included:

• work and care commitments that reduced the time available to attend services
• life-long established relationships with food – as one patient said, "food is my go-to comfort" and others described turning to food during stressful times
• a preference for self-management
• lack of awareness of services
• discomfort with a group setting (which was perceived to be related to body image for some)
• poor mental health.

During COVID-19, a dislike or inability among some to access online groups also emerged as a deterrent, although others enjoyed the online provision.

4.5 Support mechanisms at maintenance phase

At the stage of the evaluation, when the data was collected, many patients had not yet entered the maintenance phase so this report is limited on information about patients' experience of support at maintenance phase. However, there were some examples of activity to help patients during this phase.

Staff in Ayrshire & Arran reported that participants in Let's Prevent Diabetes received three, six, nine and 12 monthly follow up appointments with a dietitian. Referrals to a weight management programme were discussed at each of these intervals (where a referral was not made upon completion of Let's Prevent Diabetes) to help maintain their progress.

As Weigh to Go is a three month programme (with six, nine and 12 monthly follow ups), there was the potential for a further extension to support. Following this, it would be expected that GP practices would invite all those patients with a pre-diabetes diagnosis to attend an annual review so that there is a "continuum" of support available to them. In addition, weight management providers reported offering other exercise classes to those completing Weigh to Go.

In East Region, one weight management provider felt that support was required beyond the 12 weeks and developed a physical activity class specifically for those patients completing Get Moving with Counterweight (for a fee of £3.60 a week). The intention was to run the class in the gym and introduce participants to staff so that they would be confident to come into the gym in the future. However, only a few sessions were delivered before the pandemic. For patients on the TDR programme, a 12 week food re-introduction period followed the 12 weeks of diet replacement and interviewees noted that it was expected that support would be available for up to two years afterwards, and overall, patients reported that they were receiving all the support they needed.

In Tayside, Oviva Diabetes Support programme participants commented that the subscription was only funded for one year, although access to basic aspects of the app continued after that for free. However, these patients were happy with this arrangement – they felt that they had learned enough during their engagement with the paid-for aspects of the programme to continue at their own pace once the subscription finished.

4.6 Learning

From the experience of patients and deliverers, there was some key learning about the weight management programmes, identified during the evaluation:

• The importance of considering a wide range of evidence-based programmes for managing type 2 diabetes. Interviewees felt that TDR was not the only way to achieve remission and not for everyone so increasing the choice of other routes to remission should be considered.
• The need to recognise the established culture of unhealthy eating and the importance of an increased public health focus to promote healthy choices at a younger age to help establish good eating habits.
• The important role of psychological support, both for patients and staff in the programmes and ensuring that there is more balance between psychology and dietitians. Interviewees explained the value of understanding when best to use that input and gave examples of critical points on the TDR programme, like food reintroduction, when people often struggled and issues around food came up. In response to this, one area had introduced a support group that focused on emotional eating and by doing so, expected to streamline much of the 1:1 work that was carried out.
• More general support groups to increase motivation to continue with a programme. A few providers reported setting up WhatsApp groups to encourage participants to communicate regularly out with the group. These groups were also being used to set up Strava walking challenges to encourage people to increase their daily exercise.

Consideration: ensure more options are available for evidence-based programmes for managing type 2 diabetes to cater for different needs and preferences