How culture and community shape prediabetes management

We are Experts by Experience – listen to our stories

The providers of diabetes healthcare services, and those who design and build the services we use, benefit from listening to how we live with prediabetes and diabetes. When you take our lived experience into account then we:

• Bridge the gap: We act as a link between diabetes healthcare providers and the people with prediabetes and diabetes. We ensure that our patient perspective is included.
• Co-design solutions: Our involvement sees us work together with professionals to design patient focused care models.
• Build trust: By telling the stories of people who have shared or similar experiences, organisations build greater trust with the users of their healthcare services.
• Increase accountability and improvement: We provide a level of quality assurance and scrutiny, ensuring service providers are held accountable and are continuously improving.
• Bring unique perspectives: We share firsthand knowledge of how it feels to use prediabetes and diabetes services, offering insights into the real “but what if…” realities that might be overlooked by professionals.
• Act as a collective voice: We can help other individuals speak out and share their needs and experiences more effectively.

Without including Experts by Experience there can be an impact on diabetes services

If prediabetes and diabetes care is designed by researchers and healthcare professionals without our involvement then there is a possibility of:

• Irrelevant services: Without our input, services may not effectively address the real problems faced by patients, leading to solutions that miss the mark.
• Lack of empathy and trust: Patients are more likely to engage with and trust care providers who demonstrate understanding and empathy, which is enhanced by including our stories.
• Missed opportunities for improvement: We can identify key “touchpoints” in care that are difficult for people living with prediabetes or diabetes and we can provide crucial evidence for service specific improvements.
• Poor funding decisions: We can provide a ‘check and balance’ on proposed research investment. We are the best people to share where we can see the biggest positive impact for patients.

Positive reasons to step forward and get involved

You feel good and make a difference! It can increase your self-esteem and give you an opportunity to develop new skills which you can use elsewhere. You enhance your CV.

Meet new people who are like you, you share stories to understand how similar and how different you are. Being part of a team reduces social isolation and provides a sense of connection and community.

Speak your mind about a subject you are an expert on (YOU, YOUR HEALTH, YOUR DIABETES) and the experts will listen. Ah but…my experience isn’t like anyone else’s. Well maybe it is and you don’t know it or maybe that’s why your experience is really important.

Meet the experts in prediabetes and prediabetes and hear about the future of diabetes healthcare from the people who are making it happen. You may learn new skills that increase your understanding of your diabetes and your treatment options.

Bring focus to your own diabetes and increase your commitment to manage your condition and may provide opportunities to directly improve your condition.

Speak to your healthcare team with more clarity, to use their language and ask for what you would like with more confidence.

Fits around you as you get to choose a time commitment that works for you. This might be a 30 minute phone call, a short term study or a multi year engagement.

Be ‘rewarded’ in the form of a payment, a gift voucher or you get to keep what you test. You will not be out of pocket for any expenses you incur.

How to get involved

There are many different ways to get involved. This is perhaps one of the drawbacks as there isn’t a single place to register your interest.

• Register with Be Part of Research – https://bepartofresearch.nihr.ac.uk/
• Register with Clinical Trials companies
• Contact your local NHS Trust – they have a ‘Get Involved’ process
• Contact the different UK based diabetes charities
• Ask your GP surgery for details of your local Patient Groups
• Use social media – comment on posts and say you are interested

My experience over the last 5 years has been wide ranging from both a topic and time commitment and includes:

• DiabetesUK: Research Steering Group – a 3 year commitment shaping where research funding is spent investigating the causes of diabetes
• Tesu Health: Reviewing an early release of PreDiaWell, a medical smartapp for managing prediabetes
• Kings College London: Foot health: 45 minute phone call to understand my thoughts on developing an app looking at diabetes foot care
• University of Reading: 3 month walking trial to understand impact of daily walking on blood sugar control
• NHS: Participating in a working group looking at how to make diabetes care more sustainable
• DiabetesUK: Reviewing upcoming website content – does this make sense, is it written in a way that people will want to read it

Jo Sellwood

Author

Let me introduce myself as I start sharing my diabetes connected thoughts via a set of blogs for Tesu Health. I’m a relatively newly diagnosed Type 2 diabetic if you’d say that 5 years is newly diagnosed. To me it still feels like I am learning about diabetes, how to manage my own diabetes and how the medical and research community are moving forward to help us all. My diagnosis was only confirmed after I was unwell with a completely unrelated condition. It was a surprise as I thought I was fit and healthy. A vegan marathon runner probably isn’t the first person you’d expect to have T2. Over the last 5 years I’ve moved through different medication regimes and am currently injecting slow acting insulin once a day. For me, this works well in conjunction with my (self-funded) Continuous Glucose Monitor. As a way of better understanding diabetes and my own lived experience, I volunteer with DiabetesUK. I am fortunate to be an Expert by Experience as part of their Diabetes Research Steering Group which is planning the next research into the causes of diabetes. I am a huge advocate of enabling people living with diabetes to have the knowledge, skills and support to take action and thrive. I hope you enjoy reading my blogs. You can read more through my LinkedIn posts.