My experience of HEAL-D, a diabetes self-management programme for African and Caribbean communities

Q: How did you find managing your diabetes in the early days?

In the early days I found managing my diabetes extremely difficult. At the time I didn’t even know I had it – I was in hospital because I needed a cyst removed and I found out that I had diabetes from an agency nurse shouting it out across the ward. So that was my first introduction, and I think after that I didn’t really get the support I needed. The GP gave me a leaflet about healthy eating and lifestyle but that was it. There was a lot of scaremongering, I was told that I need to be careful because as a diabetic I could lose fingers and toes or have my leg amputated. At the time I remember just feeling that kind of loneliness and abandonment, and deep depression.

I was diagnosed in 2002 so there wasn’t much information online then. I just got on with life, but my health was bad because I just didn’t understand how to manage it. I didn’t go to many appointments because they were so depressing, it wasn’t until I moved in 2006 that things began to improve. At my new doctor’s surgery I had a diabetic nurse who sat me down and explained things. She said that my HbA1c wasn’t good, and I said, ‘What’s that?’, because it had never been explained to me before.

I was given lots of medication which wasn’t  explained to me. They had put me on a tablet called Metformin, which gave me really bad stomach aches. It was just terrible, and I was on that for a few years before I moved, and then I was told that there is another Metformin which is slow release which was better for me. Things like that didn’t get picked up in the early days.

Q: Did you have any experience of other diabetes self-management or advice programmes?

I got referred to DESMOND, which is a programme for newly diagnosed patients, but I had already been diabetic for six years. I really didn’t find it helpful, I felt uncomfortable because I was the youngest and only black person there.  A lot of the things we were taught didn’t really apply to me, because by that time I was already using the internet, going on forums, and checking things out for myself.

Q: How did you hear about Heal-D? What did you think of the programme when you joined?

I heard about HEAL-D from a diabetic nurse at the GP surgery. My initial thought was ‘Please, not another one!’ because the DESMOND programme had really put me off. I told her it just wasn’t relevant to me, and I don’t think I learnt anything but the nurse was very persuasive, so I said I would try it. After she signed me up, I was contacted a week later by email to set up an appointment and have a chat. That was with Dr Louise Goff; she told me all about the programme and I remember thinking that there was no way I wanted to get involved in it. I told her it sounds nice but I’m not going, and I told her my experience of not receiving proper diabetic care.

She said that I could just come to one session and that she’d appreciate any feedback. So I agreed to that, my intention was just to go for one session. Then a few days later a package came through the door, with a very interesting and brightly coloured manual, and an exercise band, which I had no idea what to do with as I’d never seen one before! I took time to flick through the book and I noticed that it did mention a range of foods. This had been one of my concerns, as Louise had told me that the programme was looking at foods from the African and Caribbean community. Although I am from a West Indian background, I don’t tend to eat a lot of food from my culture, so I was pleased to see that the booklet included things like pasta and other foods from around the word, as well as African and Caribbean.

Q: Tell us about your experience on the programme: how was it different, what aspects did you enjoy and find most useful?

At the first session I was taken aback when the screen came on and there were people who looked like me and there were people my age. I was shocked. I felt at ease, it was like talking to a group of friends, it was really nice. I didn’t feel like I was being talked at, everybody was sharing their experiences and we were asking lots of questions. I thought I knew everything about diabetes, but there were so many aspects that I hadn’t thought about. It was nice to get that peer-to-peer support. It was so different to anything I had ever been on, there seemed to be a real care about our cultural background. The other thing that really surprised me was the exercise – doing exercises online really shocked me. It was really quite exciting; it was amazing to release those happy endorphins. The group was so fantastic and supportive, we were bouncing off each other, and Louise and Sandra were amazing. I remember thinking I have never come across anything like this, this is so unique. I enjoyed it, and when it came to an end, I was quite sad. I can’t believe I almost didn’t go.

Q: What has been the most helpful thing you’ve learnt?

I liked the nerdy bits! I knew that carbohydrates were supposed to be bad, but I could never understand why, as it had never been explained to me. However learning more about the science behind carbohydrates and their impact on your body – I think this is one of the most important things that people with diabetes need to realise. One of the sessions, we were discussing eating a plate of rice and peas, and how much carbohydrate and sugar that contained. I think that was when the penny dropped for a lot of us. Now I am a lot more mindful about carbohydrates, previously I would only focus on sugars and fats. I am now very aware how different foods will affect my blood sugars. Also it was good to learn that you don’t have to stop eating the foods you want to eat – it is about being adaptable. For example now when I’m making spaghetti bolognaise, I’ll use spiralised vegetables instead of pasta. It’s about making little tweaks. I can still eat the foods I enjoy I am just more mindful.

Q: Have you changed the way you live after taking part in the programme? If so, can you tell us how?

Other than being more mindful about my diet, I am also more aware of exercise. In one session we talked about how if you’ve had a heavy meal, it is good to go for a walk or do a bit of dancing afterwards. Louise said that we should check our blood sugars before and afterwards, so I did that, and it was amazing to see the difference. I am really not a gym person, but I knew I had to find something else, and it is amazing the difference it’s made. My diabetic nurse checked my  HbA1c and that had gone down too, while I was on the programme.

Q: How did you find the experience of learning online?  

I was completely fine with learning online. I think because we had been doing it for so long during the pandemic, so I was very used to it. I would say that it probably isn’t for everyone though, as there is always an assumption that people are quite computer savvy, which often isn’t the case for the older community. I don’t think you can assume that everybody has or wants to use that technology, but for me it wasn’t a problem.

Q: Is there anything else you’d like to see incorporated into the HEAL-D programme?    

I know at the time I did the programme it wasn’t possible due to the pandemic but if I were doing it now, I would love there to be some social events, because it’s great seeing people on screen but it’s even better when you see them in person. Having social events would help that feeling of support.  

Q: How did you get involved in the project (NIPP) to scale up HEAL-D to other parts of the country and why do you think this is important?

After the programme was over, we were asked if anyone was interested in doing anything further which we were definitely up for. Like many of us said, the programme was so unique, it’s a programme that’s culturally tailored for us. It looks at you holistically, as a whole person, and that’s not something I’ve seen before. I feel strongly that we must spread the word about this project, it’s so important that it can be scaled up. I would like to see HEAL-D in other parts of the UK, and I would like to see HEAL-D abroad. In Africa and the Caribbean, diabetic rates are just appalling. I know that Jamaica and Barbados have very high rates of amputations, but this can be prevented. If they had access to programmes like HEAL-D, you have no idea how many lives it could save.

Q: How did you find being part of the NIPP lived experience reference group?

I have really enjoyed being involved. Louise invited me to a conference in Leicester that Diabetes UK were hosting about diabetes in the South Asian community. It was so fascinating; the south Asian community are facing the same issues that we have in African and Caribbean communities. What I really liked was that I sat at a table with consultants and GPs and researchers, and when I told them I was a person with lived experience people were really taken with me. I remember just thinking how nice it felt to be giving my point of view and being listened to. I am really interested in, addressing health inequalities and the things that need to be done better.

Q: Do you have any advice for other people, particularly those from black African and Caribbean communities, who have been newly diagnosed with diabetes?

My advice would be to ask questions. Don’t just rely on nurses and doctors, you should also do your own research and find things out for yourself. Never be afraid to ask questions or even challenge people.  I would also say to remember that people with diabetes are all different. You need to make sure you’re doing what is best for your body, and this could be different to others. You also need to make sure you have enough support, and you are speaking to your friends and family. It can really take a toll on your mental health, it did for me. It is something that you are going to have to live with for the rest of your life, but it doesn’t need to take over your life.