Hello, and welcome to this NHS England podcast about innovative ways of working with people and communities. Today we’ll hear about how GP surgeries in Nottingham used an engagement process to learn how they could improve their support for patients with Type 2 Diabetes

You’ll hear from Jo, a GP, Helen, a practice manager and Liv, a trainee practice manager who are all based in surgeries in an area of high social deprivation in inner city Nottingham.

Jo
Hello. My name’s Jo and I’m a GP in an inner city GP surgery in Nottingham.

Liv
I’m Liv, the GPA and trainee practice manager in an inner city GP practice.

Helen
And I’m Helen, I’m the practice manager in inner city General Practice in Nottingham.

Jo
We are part of something called a Deep End group, which is a group of practices in Nottinghamshire that are in very deprived populations. And we’ve had a lot of discussions amongst ourselves, within our PCNs, about how the services don’t really fit our patients and also how patient engagement at practice level, at PCN level, at CCG/ICB level, whatever it was at the time. How that doesn’t really, our patients don’t seem to be involved in that. We don’t really seem to be able to get the patient involvement. We have this bit of money and we just thinking, for quite a while because it was really busy, it was during COVID and it was all very stressful. So we had a few conversations about how best to use this.

And in the end I think it really made sense to do something, to choose an area where we knew our patient outcomes were poor so our patients weren’t getting particularly good care, weren’t necessarily engaging that well in their care, and to actually really sort of have a sort of a slightly different approach to how we engage the patients and just to see how it went, really.

Helen
We’re all based in the same building. I think it sort of happened a bit by accident. It was a bit of discussion about health inequalities and sort of led to funding from NHS England to do some work on patient engagement and to be a bit more innovative about patient engagement and to go through an engagement cycle with, to have our hand held with a company that we’re working with, so we work with co-create. And it was really to ensure that the voices are heard from our patient population where we’ve always struggled to have engagement—well over the years and particularly post-COVID—struggled with engagement for patient population, and particularly because we’re so diverse as a sort of representative engagement. And so we went on this Co-create co-production journey.

Liv
So the project involved different members of the team from a few different practices and our local PCN. Doing the project and involving people who were affected was really important to us. We didn’t want to just make decisions not knowing what people wanted, how they felt, how they had experienced things in the past. It was really important to us that we involve them in decisions that affect their lives and their health.

We formulated a couple of questions to ask them about their experience with diabetes, type-two diabetes specifically, so we can learn a bit more about their experience with diagnosis and how they’d come to terms with how they might have to change their life and what they felt would improve their own knowledge and experience, and health care.

Jo
There’s definitely a bit of a a curiosity bit there. And that was helped by using Co-Create, but also by discussions with people from NHS England, that you almost had to be really curious about what was going to happen. So it was trying not to think about what we wanted to achieve, but more being, thinking about what the problem was. So it was it was really interesting process actually.

But yeah, I think we were more how can we look at this in a different way. And by choosing diabetes, which we knew we had really poor outcomes, it gave us a way of sort of looking at that group of patients and thinking about how we could do it slightly differently.

Helen
We have this a bit of funding and decided to do a project and as Jo said it took us a little while to sort of work out how to go forward. It was during COVID and then we engaged Co-Create and then we worked on a 20 week cycle with them and they walked us through the whole thing.

Actually it was really good just learning the process. So now we feel we’ve got this a different way of engaging with patients and it’s a process. And we chose type-two diabetic patients, our hand was held through that process, but I think we feel we could repeat it for other groups of patients and it’s just how we would choose to engage going forwards rather than rely on traditional and PPG.

Liv
We started first by creating the questions that we would ask the patients. Our group was slightly different to Jo’s group, and we did two slightly different approaches just to kind of test and see what the outcomes might be. We decided we wanted to go with a really broad question to begin with so that we could get any information that the patients wanted to share with us, wanted to tell us.

So the first question we asked was, tell me about your experience with diabetes. And we followed that up with how would you improve your diabetic care and knowledge? So we ask these questions to some of our patients. We had four non-clinical members of our team use a random sample of five patients each, so we had a total of 20 patients, 20 type-two diabetic patients, and each member of our team rang five.

We phoned them with a scripted introduction. So we called them and we introduced ourselves. We said that we were calling on behalf of the research team and that we’re looking to find out how we can improve our services for our patients living with diabetes. And we asked them if they’re happy to answer two questions and said that it shouldn’t take more than 10 minutes or so.

Following that, we asked them the questions and we just let them talk and we wrote down everything they said word-for- word for us to be able to analyse it later. We ended up with 247 pieces of data to be analysed, which we analysed arithmetic analysis. So we sorted by theme before we summarized it. When we were analysing the data, it became clear to us, and obviously with a bit of a hint from the Co-create team that it was really important for us to use the patient’s own words to name each of our themes.

So we ended up with a few themes. The ones that stood out to us, patients saying they knew very little about their diabetic diagnosis. They were embarrassed to ask for help. They felt that there were a lot of leaflets, they were given this information written down. They went home to read it. But actually what happened was they put a leaflet down somewhere.

One patient actually said ‘I was given a leaflet, which I found recently in a box in the attic room from ten years ago, but that was it’, which shocked us a little bit. Yeah, we found out that some patients felt that type-two diabetes runs in their family, so they actually they knew all the information they already needed, but actually they didn’t know what they didn’t know.

Some patients felt the experience was daunting and disheartening and they didn’t actually want to come to us and ask for help when they might need it.

Jo
I think the biggest thing that came, or the two things I think came out was the first one is that people wanted to talk, so we didn’t have a problem getting people to talk about their diabetes. So that wasn’t an issue at all. People got phoned up and they were very happy to talk about their diabetes. And I think the second thing was that the patients that we talked to, these people with diabetes, they actually they wanted to know more about their diabetes, they wanted to have more education, they wanted to engage more with their healthcare.

And I suppose it’s like, well, you have to question your preconceptions. So there’s definitely a preconception that I probably had myself; that people actually weren’t that interested in their diabetes and they didn’t really want to be educated more. But actually the information we got from patients was definitely that they want to engage more and they actually, they do want to do more about their diabetes and about their health.

Liv
One of the biggest surprises for me was how much patients did want to engage. That really, really shocked me, in a really nice and pleasant way. I think, especially in GP practice, you’re used to patients phoning us with a problem. They’re not well, they need help. They might be stressed or whatever it might be. So the conversation can often be difficult because you’re trying to help somebody.

But I think in this particular case, doing this research, it was really nice because you were ringing them and they were relaxed, they weren’t stressed about anything and they really opened up.

Helen
I guess we’ve learned a process and we’ve changed our mindset, I think, and we’re trying to explore a lot more about engagement and making sure that our patients are represented. So that sense of headline thing about changing. But we know the process now. But then kind of related to diabetes, we’ve tried to engage with the local diabetes team.

We’ve got one of the structured education plans being delivered from the centre now. We’re still building those relationships. So we did also engage the community diabetic team and wider members in the process. So that was also really useful as well, and interesting working with different parts of the NHS.

Jo
It’s on two levels, which I think what Helen was saying is that there was some changes within our own practices in the diabetes. Because the feedback we’re getting is people wanted more education and the feedback from the diabetes teams was that our patients weren’t joining the structured education programmes. So actually you’ve got services that deliver what our patients wanted, but somehow the two weren’t meeting and there’s lots of reasons for that.

So I think there was a definite move to try and get our patients to engage more with the structured education programmes and get the people doing the structured education programmes to change the way they did it so that they could engage our patients. So there was a definitely a bit of work about that. We did have a social prescribing team at the time and I think they did a bit of work around trying to get people on the diabetes education program.

So I think that’s the first thing. Second thing is, as Helen said, it really has changed. People like not just us, but everyone in the patients outlook about how to engage patient groups. So we’re very much now, if we wanted to do bits of work around certain things, we know actually, okay, So if you want to do something around why our patients aren’t having cervical smears, there’s no point just putting on a few extra nurse clinics, which is I think what’s the local services wanted us to do?

It’s like, well, there’s no point actually. We’ve got to get through those barriers and actually work out why people aren’t attending for their smears and maybe talk to a few patients and work out why they’re not, not just try to to do what we do in the same way and carry on doing it is actually you have to think about how to do things differently so you can engage patients better.

It’s all very limited because I think resources are so much so at the moment. As practices, we are really sort of firefighting. I think one of the really sort of slightly upsetting things I find is we work in a really deprived area. We have lots of diversity. We’ve got high levels of health inequity, and yet at practices we are at the lowest amount of resources we have been for sort of ten, 15 years.

And so we’ve got all this information. We know all that is how we could develop services. This is how we can engage patients better. It’s very difficult to do that when you know, you don’t necessarily have the resources to do anything about it. But saying that it’s like, I think we’ll go forward now and think about doing things like this in the future.

Liv
Knowing patients want to talk to us would make this a lot easier to do. Repeat again on something different, as Joe said, maybe over Christmas or something, because we know patients want to talk to us. They want to tell us about what’s going on. So my group in particular, the participants, our patients were very open and honest with us and we wanted maybe it was because none of the clinicians there was no pressure for the patients to downplay or hide how they really felt, whether it was good or bad.

I think communication is really key. I think Helen would agree communication is really important between ourselves and the patients.

Helen
I think we probably hadn’t really appreciated the relationship that we have with patients and that how trusted that is and how willing they were to talk to cold callers.

Jo
I tried to do a couple conversations. I didn’t get as much information as the non clinicians in my group got from patients, I’ll be honest, and that might be me or it could be the relationship. I don’t know. But it’s like those open questions are really important. So letting not trying to coerce or direct patients in a certain direction, but actually just allowing them to speak and when they’re speaking, you can then get that that’s a richness of information from them of how they’re really, really thinking and they relax as well, don’t they?

So they become more comfortable about about discussing things. And I think it really helped having people who knew what they were doing to help us on the journey. So if you do have and it doesn’t necessarily need to be a company like CO-create, but certainly I think there’s probably people who know about patient engagement. Certainly now I’ve finished the project, I know this patient engagement managers locally who would support us through a patient engagement project if we wanted to go through.

So it’s just sort of making sure you actually get some support with people who actually understand patient engagement to help you through the process. You did need to have enough time to do it because we had some funding, we were able to set aside time to do it. Yeah. So it’s really important to have enough time to be able to go through it so you can actually do it properly.

I think starting small is really key. So I think the bit I’ve learned about patient engagement is be very specific about what area you want to engage in, but be very unspecific about what how you get the information from the patient. So you said, okay so we chose diabetes. We could have been more specific than that if we wanted to.

If we drilled into the data, are certain populations within diabetes, within our PCN that we could have drilled down into even further into if we wanted to. But then when you’re trying to get information, it’s the qualitative stuff you want.

Helen
So my other thought just picking up, which is that it’s time. And actually we spoke to 2020 patients. It’s but the amount of data that came from that. So it took a long time to do that thematic analysis and just the headspace as well. It’s often just feels like firefighting, working in private in a city really diverse population.

It was really enjoyable to have time to do something else and to work together as well. We’ve made progress in lots of ways, I think. Haven’t we kind of built relationships amongst the practices, but just to have that bit of headspace as well was just really valued.

Jo
As a really important point, isn’t it? It’s quite difficult at the moment and if you’ve got something like this, a positive project to focus on, it can really help with morale. So it’s not just about changing how we develop services, being more open about patients views, but also sort of having something positive that you can focus on to take you away from all the other stuff that’s happening and also that building of relationships.

So we’re in different practices and five years ago we hardly knew each other. I know it’s nice to work together sometimes, but sort of just going through these sorts of projects together has really means that now we know each other as colleagues working in the same building, whereas before we didn’t. And that creates opportunities and also work with the diabetes services.

So it’s sort of builds relationships as well, not just with our patients, but also within the different practices there as well. So that’s been really helpful.

Liv
We did a presentation for the study at the end and we put what we really felt was important and we said, Let’s utilize the voices of our patients and let them be at the heart of what we do.

Jo
Looking at live and how how they did it. As I feel that, that you are more open to what the patient views were and you didn’t have so much preconceptions. So that if you’ve been working in this area for years, we obviously feel we know our populations badly. You almost need people to have those conversations is to drop your preconceptions.

And I feel that. And so what you group in your presentation, what you done is you didn’t have those preconceived ideas of the patients were engaging, that they weren’t interested. You just went out and said, Right, okay, what, what are your views? And got this really rich information back about what their actual views were. So I thought that was really interesting to me that you got all this information.

And actually with our group, it came through the same those bits of information that you were saying about really wanting to engage in their health and really wanting more knowledge was just a sort of a bit of an eye opener for me.

Liv
Yeah, I think it helped. I’ve not been working at the practice very long or I hadn’t been working at the practice very long when we started this. I think it really helped that actually when we had the random sample of patients, I actually didn’t know any of the patients and it really helped because they obviously I didn’t know them and they didn’t know me.

So when I rang and said who I was, they didn’t know me from being a receptionist or GP or someone that they come to when they need a specific thing. I was just a random person and that definitely helped with them. It’s kind of like a buffer. They didn’t know me. It didn’t matter what they said to me, they didn’t know who I was.

They just knew that I was asking the question. Help helped them feel they could answer really openly, really honestly.

Helen
It was amazing the piece of work you did. But we were hand-held, weren’t we? CO-create were very good to work with, and you were very receptive to their directions as and didn’t have any preconceived ideas about how to do it. And I think that was very positive as well.

Jo
It felt like a really positive project. I think the problem is it took a lot of time and the outcomes, although probably were some positive outcomes, they seemed quite small. But I know from doing that that have a lot of positive outcomes for both the individuals in there and how we view the importance of patient engagement. Yeah, but to do it in a way where you genuinely are being inclusive just takes so much effort and it’s almost like to do it like that takes a lot of effort.

It’s very meaningful, but it doing it on a small scale as we are. So the actual outcomes, as it were, if you had put quantitative outcomes on it, they might not seem that great. But we know that it worked really well. We know it’s changed our attitude towards patients with diabetes in our PCN, but we haven’t got that visible proof of improved HbA1c‘s or things like that. So that makes it quite difficult to then sell this type of engagement cycle to sort of a system where actually what they want is quantitative evidence of patient outcomes. And I think I find really difficult because the populations we work in, because of the problems, both with poor engagement with health care, poor health care outcomes, is when you look at how do we improve.

Those were one way we could improve that is by improving patient engagement when we develop services, and that’s based from a practice level to a PCN level to a system level. But to do that, we’ve not done it. We think it’s great, but we recognize it takes a lot of time. I suppose I worry a little bit that actually people won’t do it because they think actually it’s too time consuming and then you have to revert back to the old type of patient engagement processes, tick box exercises, engaging people who want to be engaged as opposed to engaging the people who need to be engaged.

And that isn’t necessarily a very effective form of patient engagement if you actually truly want to involve the patients who really need to be involved. So those who are not engaging in service, those with the worst health outcomes. So I do hope that people do we carry on with these sorts of patient engagement processes. But I think on the one hand we need to recognize the fact that they are time consuming and they take a lot more effort than maybe some of the more traditional ways of or easier ways of of engaging patients.

Helen
It’s definitely made me think differently about engagement. We historic early had to put that sort of this waned over time and it sort of I guess it completely stalled through COVID and has never picked up. But this feels like a much more positive, inclusive, representative way of engagement and definitely what we would do going forwards instead of a traditional meeting of patients once a year or every quarter.

Thanks for listening to this episode of the NHS England podcast. Our guests today Jo, a GP, Helen, a practice manager and Liv, a trainee practice manager who are all based in surgeries in a area of high social deprivation in inner city Nottingham.

Links related to the project are available in the notes accompanying this podcast.

If you’ve enjoyed this podcast, please listen to further episodes, available by searching NHS England on Spotify, Apple Podcasts and SoundCloud. Also available from www.england.nhs.uk/podcasts.