Following a discussion on Twitter regarding transition from junior to senior diabetes clinics, how this should work and people worries and thoughts about it, it made me consider my potted history with the NHS and its diabetes care. I realised that I am a really good case study for someone who could engage and didn’t really, until I felt it became necessary.
As I mentioned in My Life Story, I was diagnosed at 13. Now this was an awkward age to be diagnosed as you aren’t quite junior enough for the junior clinics and not really adult enough for the adult clinics. As a result, I guess I attended adult clinics, although I couldn’t say I can guarantee that’s what they were or that’s how the service was split out in the late 1980s. I had four years of doing the clinics with my parents as a teenager, and then went to uni.
One of the things they didn’t make abundantly clear back then was what you should do in terms of referrals and diabetes clinics, and there wasn’t a helpful Google or DOC to ask. I seem to recall that I got myself referred to a clinic in Coventry through being a student as my parents had moved house and continuity of care at my diagnosing hospital wasn’t possible. I don’t really have any recollections of the diabetes clinics I attended in that time. I was a student and I was getting on with living my life. Diabetes was an incidental item that you just got on with. As I’ve said before, if my Hba1C was okay, then as far as I was concerned, so was I. I suppose what I should take from this is that my T1 care didn’t stand out and isn’t memorable. That in its own right either tells you a lot about me or a lot about the care, or maybe both. I didn’t feel I needed it and they probably didn’t feel they needed to see me.
Now I’m not sure whether this is a good thing, but during this period, I spent plenty of time working and living abroad, and I don’t remember once thinking “Oooh, I should discuss this with the clinic”. Call me bloody minded if you want to, but I just didn’t see the point. I suppose I went through the end of childhood and young adulthood as an isolated person with diabetes, more or less on my own. In many ways this has continued throughout my life. NHS Diabetes care services are there to be used when needed, but not something I’ve considered necessary to rely upon in order to survive as a person with diabetes.
If I then look at engagement throughout my adult life, the story doesn’t change very much. If anything, it gets worse. I’d attend the clinic annually, but never with a pre-prepared Hba1C test. I’d always wait till after the clinic appointment, expecting the worst, not wanting to sit in a clinic and be admonished by the diabetes team and ending up with something just about in range (low 7s were in range at this point in time). The clinic didn’t seem interested in seeing me as I’d not got an Hba1C to talk about, my last one was okay, there was nothing abnormal going on with me, and when I asked about what was new, very little ever was. It was dull, unexciting stuff. The occasional upsides included an early offering of DAFNE and BDEC, which was immensely helpful on MDI, but these occasions were few and far between.
Then I was diagnosed with Background Retinopathy, I was seen at Moorfields, not at the diabetes clinic at St Georges, and this triggered six monthly checks, at Moorfields. It was also through Moorfields that I managed to push the retinopathy back. Note, this was not with the support of a diabetes clinic and the staff at Moorfields really seemed interested. They also asked me to engage in some research they were doing with T1D and Retinopathy, which I was only too happy to jump at. Given this, why wouldn’t I remain much more engaged? It’s worth noting that I didn’t think of the care I was receiving from Moorfields as part of my diabetic care. It seemed totally different. I do sometimes wonder what could have been different in my diabetes life that would have stopped me from getting to a point of retinopathy, and the answer comes back to, probably taking better care of myself and being more moderate in some of the things I’ve done.
In my latter years at St Georges in Tooting, I ended up cancelling appointments regularly and just not bothering. I hardly ever saw a consultant in the clinics and the registrars I saw were often doing this as part of a rotation. Not only was lack of interest visible on my part, it was being demonstrated back to me by those who were supposed to be bothered, or so I felt. As a result of this I ended up out of the secondary care system completely and working with my local GP for a number of years (four I think). They could give me what I needed from an Hba1C and prescribing point of view, so why bother attending a clinic that showed no interest and had nothing additional to offer me? They also referred me to St Thomas’ Hospital for Retinal Screening following the discharge from Moorfields, so no real need to worry from my perspective.
In fact, I only re-engaged with the NHS when I discovered issues with Lantus and decided I needed to change my basal insulin. Throughout this period, I wasn’t looking for support from the clinics, I was happy getting on with my life. It was an inconvenience that I had to go to the clinic and sit around waiting for three hours while seeing somebody for 15 minutes. I had a life to get on with and plenty to do in it. Diabetes wasn’t getting in the way, so engaging with the NHS seemed unnecessary, protracted and a very long way from the kind of professional experience it should have been.
On re-engaging, I realised that the care model didn’t seem to have changed dramatically, and that my time spent at St Georges may have meant that I missed out on a lot of things. Insulin pumps for starters. Re-engaging with Guy’s and St Thomas’ has led to some of the same frustrations I always had with D care coming to the surface again (and as a result I’m thankful for the GBDOC) but at least this time I’m engaging with somewhere that recognises the newer technologies that can help with living with Diabetes. As that’s just what I do. I live with it. Not in spite of it.
As a result of the DOC, I’ve since engaged in the NHS in a rather different fashion, participating in research and future enhancements based stuff, and it has opened my eyes to the variety inherent in T1 patients. I just got on with it. Many don’t or feel they can’t. What the NHS needs to provide to different people varies widely depending on personal circumstances. That makes it incredibly difficult to do effectively.
Given this background, it was interesting for me to discuss patient engagement with someone in diabetes care recently. I now consider myself a fully engaged individual, who uses available technologies to manage my condition to the best of my abilities and will go outside the NHS to find alternatives if I feel they are worth investigating.
I’m not one of those that the NHS needs to engage with. I’m a “pull”
patient rather than a “push” patient. And I don’t consider myself a patient. The reality is that clinic appointments are for the benefit of the NHS to track me and for me to try and get things out of the NHS (pump funding being a prime example). I don’t really need the clinic at this point in time. And when I do, I’ll happily contact them…
I was told that there is a stratification of the diabetes patients in the NHS, and I realised that for many years I wasn’t in this “top level of engagement” band. I was in the “Taking care of myself and not engaging with @NHSDiabetes” stratum.
When you’re at this level, you feel you don’t need what the NHS has to offer, but you may not be wholly engaged with Diabetes in the wider world, the DOC, the charities, or how you manage it. You just get on with living and keep your D in check. I spent much of my life in this position. It’s not that you don’t or won’t care, it’s just not that big a priority and there doesn’t really seem to be a need to do anything.
Many people in this position are perfectly capable and need limited interaction with the NHS, but due to the way it engages with them, it somehow doesn’t quite work. They also could do with some encouragement to get to the better glucose targets and better optimised diabetes management. But it shouldn’t take that much to move a reasonable proportion of them into the upper engagement tier and to provide appropriate, targeted assistance to help them progress with their condition in a safe and straightforward manner.
This group has a varying set of levels of dealing with D ability in their midst, they know what SMBG is for and how to use it, but motivating themselves can be difficult. They may suffer a reasonable level of Diabetes Distress in managing and living with the condition. The key thing is that they are capable of dealing with it with the appropriate, targeted, help.
Then we have the last quartile. These are the ones that need help. For many, they just don’t see why they should do any of the above. They may not have the maths skills to carb count and adjust insulin. They almost certainly don’t undertake SMBG with any regularity, if at all and often don’t bother with taking insulin. Many don’t comprehend the damage they do to themselves. Equally, many do, but as it’s not prevalent and obvious, it is ignored. This group needs to take up the time in the clinics. They need it much more than I do.
Sadly, I’m probably more typical of those in the Diabetes On-line Community than the Diabetes Community. Most of us are engaged and more importantly motivated. And we manage to keep ourselves motivated through the DOC. We probably amount to less than 5% of the Diabetes Community as a whole. That’s why one of the focuses that’s currently ongoing is how to engage these less engaged and motivated groups more effectively.
If my experience is anything to go by, it’s something changing that makes that difference. Life, your condition or your medication. The question is how you effect a change that has a personal impact on someone of such amplitude that they change their behaviour significantly, and that’s a question that’s open to anyone to have a pop at answering. I’m sure that there is no single answer…
Hallo Tim! I was diagnosed as T1 last week. Since I discovered your blog two days ago I have been reading and rereading. You write really well and I the content is fascinating to me both intellectually and personally. Since youexplain the different stages of your relationships to diabetes management and to NHS resources over the past 3 decades, I wondered if you have any ‘first steps’ or tips for a newby to the system, who ultimately hopes to actively manage D in order to maintain as close to normal bg as possible.
By way of background, I am an historian of science, technology, and medicine. I grew up in the New Forest and now live in Oxford. I have 6 months’ previous experience with gestational diabetes. I had gd in both of my pregnancies, despite having none of the risk factors (except in the second pregnancy, when a previous gd pregnancy was the risk factor.) I’m 34, have a bmi of 19-20, do a lot of walking and cycling, so my diabetes is the monogenic kind- the equivalent of a diabetes lightning strike. At some point between April (when my gd was picked up) and October (when I gave birth) this flipped to T1. I managed my bg levels immaculately during both pregnancies by ignoring NHS eatwell guidelines and following a lchf diet, using food combining and aggressive exercise (15km speed walking per day) to keep my levels within a 4-7 mmol/L range. I independent minded and have a high capacity for focus and discipline (which is key to being a sucessful academic, but hard on my spouse!!)
I have had one encounter with a dsn and D registrar so far. This was emotional for me as the diagnosis is a lot to take in; both of them were kind, but even so it was clear that I was supposed to be taking on a ‘sick role’, as the dsn got quite huffy when I departed from her script.
Obviously I have a lot to learn about everything to do with T1d. However, moving forward, I hope to be treated as an intellectual peer and to able to ask questions and explore thought experiments, not to be dictated to. For example, I’m breastfeeding at the moment so eating more carbs than I would usually, but ultimately plan to go back to a lchf diet, and can already tell that I will run into issues with this.
There is so much I have to learn, and I will continue to read this blog avidly amd to read and post widrly in the DCUK forum. But in the meantime, I’d be very grateful for any ideas, however basic, on how to get started on the right foot.
Thanks, and be well.
I think you’ve already started down the right tack. Being inquisitive and trying to understand what you can do to take responsibility and manage T1 is by far the best route to getting results that will give you the best benefits. What I’d suggest is that you engage with the online community and also engage with the healthcare professionals you interact with. Most are far happier to deal with someone who knows themselves and what they want to talk about in interactions in clinic. As Simon Heller said, “No condition demands more of the individual than Type 1 Diabetes” and it’s very true. By grasping it with both hands you will make sure that T1 lives with you rather than takes over.
The only other comment I’d have is that you should be aware of burnout and not be afraid to give yourself time to focus away from it, as it can become all encompassing. That’s not good either.
To sum up, I think you’ve started off down the right path, and being aware and engaged is the most important thing. Good luck, and welcome (even if it isn’t welcome) to the T1D family!
Dear Tim, thank you so much for your message. It was really good to receive your encouragement and the gentle warning about burnout–I’m only a couple of weeks in but I can see how that happens. I’ve been putting off writing on Diabetes UK because of not knowing how to begin, but I’m going to do that now. Thank you again, be well. H