As the submission is to a cross party interest group, it is essentially public evidence, so I have decided to publish my 2,968 words here. If you are concerned about the variation in care you receive, please take the time to write your own submission and follow the guidance above to get it to the group.
You have until 31st July!
Type 1 Diabetic diagnosed in 1988
Live in South East London
Currently under the care of Guy’s and St Thomas’ Diabetes Unit
Taught to carbohydrate count as an in-patient when first diagnosed
Spent many years taking minimal Diabetes care from the NHS, just getting on with life
Following diabetic retinopathy diagnosis, got involved in online diabetes community
Currently working on open source projects and with NHS team setting up on-line resource
As a Type 1 diabetic diagnosed at the age of 13 in 1988, I don’t remember a large amount about my diagnosis. It was handled by my father mentioning some symptoms to my GP, who gave him some urine testing strips to use when I got home from school. When my urine test showed a glucose level that was off the scale, I went to school the following morning and my parents called the doctor. I was an in-patient at the local hospital before dinner.
I spent around five days in the hospital under observation to bring my levels down. A diet plan was worked out for me and appropriate insulin to go with it. I recall the requirement to check blood glucose levels once a day in a cyclical fashion, so that over the course of a week, one would get a view of how it worked. The strips at the time were all visual. I was taught how to handle hypos, made sure I knew how to inject and then spat out in to the big world, with my parents as guardians.
I believe that we were pointed at the British Diabetic Association and books like Countdown that contained the carbohydrate content found in many shop bought products, and of course, the check-ups, where I would mostly make up the numbers in my diary and hope the “long term” blood tests worked out okay. I remember very little else at the initial diagnosis, other than warnings about what might happen if I was to not look after myself. As a teenage boy, the warnings about my sex life worried me the most. I spent my four years with my parents before heading off to university and taking responsibility for myself. The grounding we were given in 1988 relating to Carbohydrate Counting and how it related to insulin dosing was critical in enabling me to do that effectively.
Engagement with the NHS
If I look at engagement with the NHS throughout my adult life, the story is basically that 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). I felt that the hospital was judging me every time I went in. No-one really seemed to appreciate that the reason I wasn’t playing the game was because I was worried about the result and what the response would be. Fortunately, because I was carbohydrate counting and dosing accordingly, I was maintaining a vaguely reasonable long term average. 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. The checks I was required to get were done at the clinic (feet, blood pressure, eyes, etc).
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. I only re-engaged with the NHS when I discovered issues with Lantus. Random, unexplainable hypoglycemic incidents led me to research how Insulin Glargine worked and its pharmacodynamics. The results were shocking and I decided that I needed to change my basal insulin. I initially took this to my GP who felt it was out of his depth of knowledge and referred me to whichever clinic I chose to attend. This ended up being Guy’s and St Thomas’. It also initiated my interest in digging in to the wealth of research relating to Diabetes, treatments, technologies and the greater understanding of the mechanism that cause the disease. I realized that while I had not missed a lot, there was a fair amount that I’d ignored. On re-engaging, I realized that the care model didn’t seem to have changed dramatically, and that my time spent at St George’s 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 diabetes care coming to the surface again (and as a result I’m thankful for the GBDOC). I documented my frustrations on my blog (http://www.diabettech.com/cgm/diabetes-clinic-appointments-harrumph/ and http://www.diabettech.com/diabetes/close-encounters-of-the-worst-kind-an-everyday-encounter-with-nhsdiabetes/) – let’s just say that frustrating and under-informed is being incredibly polite. Out of date seems much more appropriate in many cases. As a result of being part of the Diabetes Online Community, I’ve since engaged in the NHS in a rather different fashion, participating in research and future enhancements based projects, 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 don’t really need the Healthcare team to help me manage my diabetes. It’s something I understand intimately. I’ve been doing it for years.
I’m not someone that the NHS needs to engage with. I’m “pull” rather than “push”. I don’t really 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). When I need a clinic, I’ll contact them.
I was seen by St George’s hospital in Tooting for the best part of 8 years. In my latter years at St George’s, 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, it being a University hospital. 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. 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 seem to recall). They could give me what I needed from an Hba1C and required checks point of view, plus were prescribing my medication, 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 I felt there was no need for a hospital clinic.
In the meantime I had begun to actively participate in the on-line Diabetes community, where I was picking up information about diabetes technologies and learning about other people’s issues. I hadn’t realized how well managed my diabetes was through my management of it until I took this step. It astounded me that twenty-five or so years after my diagnosis, people were being put on to a “Multiple Daily Injection” regime with little to no information relating to counting carbs. If anything is a recipe for uncontrolled hypoglycemia, this is it. It still continues to this day.
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. 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 be. I knew what my Hba1C should be, what complications were and what I should be doing to avoid them. I’d been given a possibly rather too thorough grounding in them when I was 13. “Your feet will need amputating if you don’t look after yourself”.
Perhaps for the first time in my life I feel that the team at Guy’s Hospital is interested in me from a “How I can help them”. The incredulity when you turn up with a practically normal Hba1C and minimal glycaemic variability is great to be part of and feel like you’ve achieved something. Sitting in the waiting room discussing monitoring technology and Artificial Pancreases is a great education opportunity for many people and fun to do.
Perhaps for the first time, I feel that the professional care team with which I am engaging is actually interested in MYdiabetes rather than considering me a number, and is happy to talk to me on my terms. This is progress, as far as I can see. There is a recognition that all type 1s are not equal and that some of us are more engaged and more bothered about our outcomes and how we get there. Even to the extent of discussing things like OpenAPS – the open source Artificial Pancreas software.
In many ways, I’m very lucky. I can afford to pay for the technologies that make living with Type 1 a lot easier. Accessing the essentials through GPs (insulin, test strips, changing test strips, etc) has never been an issue, and my surgery has been extremely supportive in how I go about doing this. I’m not really a drain on their resources though. I use the GP only when absolutely necessary, when I need things like prescriptions, sign off of Medical Exemption Certificates, access to online records and such like. In that respect, my surgery is excellent, and I find the EMIS Patient Access system very easy to use. I’ve also never been declined for testing strips when I’ve elected to use specific blood glucose monitoring machines, as the surgery has discussed my needs with me, and the reasons for my choice.
I’ve been lucky enough to be in the vanguard of those who adopted the Abbott Freestyle Libre, and found that it made a significant difference to my Hba1C. But it isn’t a cheap technology and for many it requires them to give something up in order to use it. It changed the way that I managed my diabetes, highlighting areas where I needed to modify my insulin timing and revealing dawn phenomenon. I had modified my Multiple Daily injection regime to be something that was almost Pseudo pump like. It’s known as Sugar Surfing, I discovered, and made a huge difference to my long term averages and the swings I was seeing. But it’s not something that I learned about within the NHS, although there are a number of senior clinicians who understand the value of it.
I have written extensively about the Libre on my blog (a list of posts is available here: http://www.diabettech.com/?s=Libre). To this extent, I was able to use the data that it provided to ask for a pump.
I have also built myself the Nightscout platform that has been presented before the APPG previously, and also got involved in some of the Open Source projects to adapt the Libre to use the sensor for CGM and to build xDrip. In order to do these things, I’ve had to make a decision to make Diabetes Technology one of my “hobbies” if you like. None of the items listed are cheap and all require funding, so in order to get involved, I’ve had to decide that I will pay for these things in place of other hobbies that I could have taken up.
When it comes to access to technology via the NHS, it’s been a harder slog. The idea of a pump was first raised to me in early 2015 as a result of hyperlipotrophy that consultants could feel. At the first appointment where I raised it, it was summararily dismissed. At the second, the registrar felt I wasn’t a candidate. I had to spend a 45 minute appointment insisting that he took it further using the data I had presented from the Libre. Fortunately, my persistence paid off and within four months I had been put forward for and received my first NHS funded pump. This wasn’t my first pump. I had got my hands on one outside of the NHS and purchased short use-by date supplies from the US at a reduced cost to get my hands on one early. Many others do something similar as they struggle to get started with the NHS. With this experience I was able to get started in no time as I had undertaken the work needed without any need for NHS intervention.
Technology isn’t just about treatment though. It’s also about how we interact with each other and the NHS. To this end, I’d say it has been eye opening. The GB Diabetes On-Line Community continues to grow, and uses Twitter, Facebook and Internet Forums hugely effectively. The internet has provided a way for 200 people to get together for a “People with Diabetes” conference, where the attendees are entirely as the name suggests. It provides support for people trying to build the open source tools and gives people an outlet where there is expertise in many different forms, from trying to get a pump to titrating insulin and re-assessing insulin dosage. Advice is usually given with links to appropriate guidance, but it provides a safety net for those who are seeking advice and struggle to engage with the healthcare community.
The other area where technology needs to be embraced far more effectively is within the NHS itself. A fair number of younger Diabetes practitioners participate on Twitter. It provides them a public way to interact with us. They adhere to the same standards they would in a clinic meeting, but it gives access to senior managers within the NHS and healthcare research for those of us who have ideas and are trying to help make things better. It could be embraced so much more effectively. Within my clinic, email is used. This is a positive. For many people, Skype to mobile phones from healthcare professionals would provide a real benefit. All this needs is a nationwide policy so that all clinics can use it. These types of progression seem beyond the whit of the NHS.
Technology also provides a medium for massively improving education. The Bournemouth Diabetes and Endocrine Centre online training has been in place for a decade, and provides a great introduction to carbohydrate counting, and more courses like this for both type 1s and type 2s would relieve the burden on the face- to-face courses. They are pull rather than push and, if done correctly, would allow access from smartphones meaning that just about anyone could access them. For too long, the NHS has considered this as a non-evidence based approach, which doesn’t therefore have any merit, whereas for many people, simply having access to some education is far better than none. Whilst the ideas behind DAFNE are great, the restrictions to access mean that it doesn’t reach enough people, and a more open view on education is needed.
Technology could be used as a massive enabler and some people are starting to do this. Unless this process is accelerated, it will be hard to reach the growing numbers of people with diabetes in the UK.