A Summary of Service Users’ Perspectives on Accessing Type 2 Diabetes Mellitus Services in Hull and the East Riding of Yorkshire.
The Hull and the East Riding of Yorkshire Clinical Commissioning Groups, who are responsible for the planning and commissioning of health care services for your local area, funded the University of Hull in order to find out the experiences and views of people living in Hull and the East Riding of Yorkshire who have type 2 diabetes. We did this by interviewing 10 senior care home staff, 11 groups of service users, a total of 48 people, across the age ranges of 18-39, 40-64; and 65+, and 5 individuals who had been recorded as not attending some appointments. We then used what people with type 2 diabetes had told us to develop a questionnaire. The findings from the questionnaires were combined with the findings from the interviews to create a better understanding of the barriers people with this condition face when accessing services. This research study was sponsored by Hull and East Yorkshire Hospitals NHS Trust and the research team consisted of Professor Sathyapalan, Professor Walker, Janine Keating and Lisa Baldwin. We would like to thank everyone who was involved in this research study and we are pleased to share a summary of the interviews with you.
The Impact of Type 2 Diabetes on Daily Life.
When people were first diagnosed as having type 2 diabetes some were shocked and surprised, or frightened, whilst others talked about their disbelief at first followed by a sense of denial. Some responded with urgency initially, which lessened over time, whilst others did not understand the seriousness of being diagnosed with type 2 diabetes. Some people completely changed their lifestyle; their diet and the amount of exercise they did, as a result of being diagnosed.
People spoke of the symptoms associated with type 2 diabetes that they had experienced, such as mood swings, thirst, tiredness (which often led to sleeping throughout the day), problems with nerves (neuropathy), excessive sweating, difficulties with their mobility and vision, tooth loss, amputation of toes, and an increased need to go to the toilet. These symptoms were sometimes intrusive and disruptive, and impacted negatively on the individuals’ ability to participate in social events and do other activities, such as driving long distances. This often led to feelings of loneliness and isolation:
“. . . but the reason why I don't go out because it's a bit embarrassing that you're always off going to the loo, er.”
Poor mental wellbeing was a significant issue for people living with type 2 diabetes. Depression, anxiety and fear were commonly experienced, for example, as a result of worrying about becoming hypoglycaemic. Low self-esteem, self-consciousness, embarrassment and shame were experienced too, particularly around weight gain, social isolation and tooth loss. Type 2 diabetes was sometimes overwhelming and viewed as burdensome and something which prevented the participant from moving forward in their life.
Not working, which sometimes led to boredom and isolation, was hard for some participants to manage alongside their condition. For some there was a loss of independence due to no longer being able to drive as a result of their type 2 diabetes and sadness was felt at not being able to do things that were once possible, such as playing with children and grandchildren. There was a worry and a fear of what a future living with type 2 diabetes would hold for themselves and their livelihood, such as the loss of a driver’s licence or complications leading to amputation:
“It does worry me, you know, worries me for my family at times as well, you know, we, what, how bad I'm going to get but nobody there seems to have an answer, you know and like I say it's a big worry, especially with a family and I don't want to die young, I want to see my kids grow up.”
In order to protect loved ones, some people with type 2 diabetes did not want to share their anxieties or distress with their partners and other family members.
Some of the participants cared for children, parents and partners, some of who were unwell or had disabilities themselves. Type 2 diabetes made these caring responsibilities more challenging. Those in the groups aged between 18-39 expressed a determination to live differently and make different choices around food, compared to what their parents had done, or still continue to do:
“my parents are both type two diabetics and in their mid-sixties, erm, and they have not made good choices, changes, they’ve not made changes to their diet, they’re still eating high level crappy carbs, big massive meals…. I’m shocked on reflecting that they have not made better choices before now because I didn’t really understand what diabetes was before….. who knows maybe I wouldn’t be sitting here right now…… I’ve got to stop the circle being repeated.”
Type 2 diabetes, as well as having to monitor the condition, often became central to people’s lives and thoughts, sometimes even dominating and controlling:
“And it has took over my life and you do become obsessed but you become obsessed to the point that you can cope with it easier, because at first it is upsetting that you're not going to eat stuff like you used to eat, you know, I mean even now, I can walk past a baker's and think God, I could die for a piece of that bread with butter but do you want to live healthy or do you want the bit of bread?”
“There's a point where diabetes takes control of you. I think once you get to know that, and you have your blood machine as well. That controls me, my blood machine controls me. Tells me what to do.”
However, participants also spoke of trying to remain positive and not to let diabetes dominate their lives:
“My life is my, diabetes is mine, I don't allow it to own me, that's the big thing with my opinion and I try to look for the positive sides on everything, even if that water was to fall, fall over and go over there the positive side, it didn't get me. Don't, life, I don't let the diabetes rule my life.”
Career and work was often disrupted and often challenging to manage alongside type 2 diabetes. In some cases, certain types of occupations were seen to contribute to the condition, for example, gaining weight whilst doing a non-active job or missing meals, not eating at set or regular times, or eating in a hurry, whilst doing shift work or doing jobs which involved driving:
“I used to drive taxis for a long time and weight creeped on, eating junk food and, and stuff like that, snacking, sat down for long periods, no exercise.”
Management and Maintenance of Type 2 Diabetes:
‘We are coming more and more our own doctors’
Participants spoke about relying on their own intuition and what their bodies were telling them, alongside weight watching and monitoring themselves;
“every single day I do my blood sugar first thing in the morning, I do my blood pressure first thing in the morning, I then always have my breakfast and I know in my own feeling whether I'm, whether I'm okay or not.”
Self-management required hard work, commitment, and a knowledge of, not just of type 2 diabetes, but of the self, their own body and how to navigate through the healthcare system. Some felt confident and supported to do this, whilst others were left feeling bewildered, confused and wanting more information and support. For example, despite receiving a blood glucose monitoring machine from their GP practice, some participants had not been shown how to use it or knew what the numbers meant:
“I was given a blood monitoring machine. But the nurse was too busy to show me how to use it, so they told me to go to the chemist, that the pharmacy would teach me but the pharmacist had to Google it to get it on YouTube to see how to do it, so the.. Then she, a young girl just told me to go away and I still don’t know the numbers. So I don’t use it. Because I don’t know what number my blood is supposed to be.”
All the groups who were interviewed discussed not receiving, or not understanding, the results from their blood tests. Self-monitoring however was seen as important to many participants and a way they could maintain control of their condition:
“It's been really empowering because it puts me in control of my blood sugars and I get a reading every single morning and they're stabilising now…”
The inconsistency in services, particularly in primary care, for example GP practices, created obstacles when it came to people effectively managing their type 2 diabetes. There is a need for people with the condition, their families and relevant health services to work well together, to listen, value and support each other in order to better help the individual to effectively manage their condition. There was a need for more information and access to a structured education program about type 2 diabetes, especially when someone was first diagnosed, because for some this was missing;
“They called me in, says you're diabetic, that was it, finish, other than that, say the courses the, I've had none of those, none whatsoever. I had to find out myself for the, what you could have and what you couldn't have.”
When there was no or little professional advice and information, some participants supported themselves, for example, by finding information online:
“See all the information I’ve got I got myself though, I haven’t been told by the NHS. I was left to struggle, to learn alone”.
Coordinating and organising medication was central to managing type 2 diabetes well, but other conditions that also required medication, such as high blood pressure and arthritis, made this more complicated. Taking lots of medication, the pain experienced whilst injecting insulin, side effects and fitting medication around daily life was sometimes challenging and at times awkward:
“Because I just don't want to hulk this bloody great bag about if I'm honest, I just don't want to cart it about, you know. Yeah, well it, it's just awkward isn't it?”
However, for others taking medication gave them a sense of control, and was something that made them feel they were helping themselves:
“It makes you feel better don't you? You feel as though you're helping yourself.”
For many people, self-management was the most effective, and for some, the only way to successfully manage their condition. But by patients, health professionals and clinical systems working together in partnership with one another, this would further help to achieve both the person with type 2 diabetes’ and the health services’ desired outcomes.
There was a number of barriers to the management of type 2 diabetes. Participants spoke of conflicting and inconsistent advice, information (especially around food choices), guidance and care, especially in primary care, which led to frustration:
“It’s like God, all I want is a bit of advice.”
GP and other services, such as dieticians, physiotherapists and podiatrists, were hard to access and difficulties were encountered when those with type 2 diabetes tried to getting an appointment with a GP, for example, having to wait a long time, or managing the receptionist to get one. There were also inconsistencies in how often people with type 2 diabetes received check-ups, how long their appointment lasted, and where they received foot checks;
“Once a year, and it's supposed to be everything, you know, that she discusses everything supposedly with you, so that, she's too busy with one, she decides on one condition that you're in with, each, each time, it seems, she does the basics with the diabetes,… … and then she'll sort of rush you, because she's always so busy,..”
The general information about type 2 diabetes was often seen as negative, threatening, restrictive and mostly about what ‘can’t be eaten or done’. Public perception of those with type 2 diabetes was sometimes judgemental and stigmatising:
“but new people who meet you and they, and you discover that first of all [you have diabetes], they have that same kind of recoiling action.”
“And I think there is this kind of blame as well of sort of, you know, you've brought this on yourself, so what do you expect, you know?”
There were many participants who experienced very good services, which help to control and manage type 2 diabetes. These included weight loss programs, getting repeat prescriptions and appointments online, and working in close partnership, sharing results, and making decisions jointly with their GP and diabetes / practice nurse. The group interviews that took place in this research study highlighted how valuable it was for those with type 2 diabetes to talk to others who shared the same condition. They were able to offer and receive peer support by sharing information, particularly on food, giving advice and using their own experiences to help, support and reassure others.
Suggestions for Service Development and Improvement
Participants highlighted a number of areas services could develop or improve. These included the need for;
· Clear support and guidance at the point of being diagnosed with type 2 diabetes, which could involve the individual’s family.
· Consistent and up to date information on self-care, screening checks needed, food choices, healthy weight management, medication and the services that are available to someone with type 2 diabetes.
· Easily available support and informed advice.
· Better access to specialist services, such as podiatry and dietetic services.
· More regular and frequent, more than once a year, checks and monitoring.
· Automatic feedback on blood tests and a clear explanation of the results.
· The use of technology, for example, making appointments online and the use of emails rather than letters.
· Coordinated and joined up care; a one stop shop, especially for those who have more than one health condition.
· A focus on people with type 2 diabetes who are aged between 30 to 40, as they tended to pay the least attention to their health.
An improvement in all of these areas could help to maintain people’s overall health now and in the future. Participants identified a number of other areas which could help them maintain or improve their overall health:
· Group / social peer support, and the choice to have this support face to face and / or online.
· Organised exercise groups, such as a walking group, which would have both a physical and social benefit.
· Reduce priced gym memberships.
· Services and support for emotional and social wellbeing, for example, a mindfulness course.
· Supported self-learning and ‘understanding yourself’ to help manage type 2 diabetes.
Good self-management and taking responsibility helps to control type 2 diabetes, but this can be a potential burden on the individual with this condition. A lack of coordinated health and social care can further increase this burden. With better structured and coordinated services, along with the support of the individual’s family and their communities, those with type 2 diabetes can be supported to successfully manage this condition. Those we spoke to identified new areas which could better meet their needs and which took into account their own individual lives, including their work, and how this affected their own management of type 2 diabetes
Listening to those who do did not access services, it was clear that many had complications with their health and faced challenges in their lives, such as difficulties with their mobility, managing their weight and mental wellbeing. This meant they found it difficult to access services, which resulted in a negative effect on their own health and the healthcare they received, which then lead to additional complications. This cycle was both complicated and had many sides to it, highlighting the complex nature of living with type 2 diabetes.