Andy's story: I didn't receive the support I needed

It all began around late summer last year. I just wasn’t feeling very well and had lost a fair bit of weight without any intention of doing so, I was also going pretty frequently to the bathroom. Being a man, I always avoided going to the doctors, but I was concerned enough to get checked out and so made an appointment. I was told that with my symptoms they suspected it could be diabetes, as what I was experiencing was very much in line with the condition. So that was on the Friday, and I was asked to do a fasting blood test on the Monday.

Within a couple of days I got a phone call from my GP surgery to say ‘it will come as no surprise to you that you have diabetes and your levels are incredibly high.’ I was given a reading of my HbA1c which was at 130 and was advised to go immediately to the surgery. And whilst in the chemist within the surgery the receptionist came out and told me and everyone else that I had type 2 diabetes. There was no confidentiality in sharing that news with me.

Cancelled appointments

A couple of weeks after my diagnosis I had an appointment to speak to a diabetes nurse at the surgery but then got a phone call on the morning of my appointment to say that she couldn’t see me, and it would be three weeks till the next available appointment. This was totally unacceptable. Another appointment was made for a couple days’ time which was also cancelled. Then I had a telephone consultation with the diabetes nurse, who gave me some generic information about diabetes and directed me to the Diabetes UK website.

I did eventually have a telephone consultation with a doctor and I had more questions at the end of that conversation than I did at the beginning. It was quite complex, and the advice once again was go to the Diabetes UK website and see what the case studies tell me on there and I did find the site really helpful.

At that point I didn’t really have much idea of what to do in terms of dietary requirements. I was prescribed Metformin and my blood pressure wasn’t that high, but they said I would benefit from it being lower. From being diagnosed my diet changed massively, as all our meals were being prepared from scratch, so we knew exactly what we were eating, and I just became more aware of food and nutrition.

I have private healthcare insurance however, it doesn’t cover diabetes. That said, I decided to speak with a private consultant who was incredibly thorough in examining me and spent roughly a good hour with me.

I was given a full physical and he wanted to know everything, and it was just a different level of care. At the end of that examination, he said he was pretty sure it was diabetes but there are different types, and he didn’t feel a urine sample was adequate enough to determine if it was type 1 or type 2. Most worrying, he also said all the symptoms I described were the same for pancreatic cancer especially the weight loss. So he suggested another blood test and a CT scan, to rule out cancer. 

So the scan and blood test were done and fortunately there was no evidence of cancer. But what I found most frustrating was when I told my GP surgery that I was having the CT scan and another blood test – I was told by the practice nurse, ‘oh yes that’s a good idea, because the symptoms are very similar to pancreatic cancer.’ I was disappointed by her response because they hadn’t given any thought to telling me about the possible link to cancer instead they just prescribed Metformin and that was it. 

Moving on from that - my weight continued to drop but not at the same rate it was doing before and weight-wise I’m now probably back to where I should be in the first place. My levels have been up and down, but I’ve managed to get my HbA1c down from 130 to 47 in three months. And in sharing those results with my doctor at the surgery, I had a message back saying, ‘Well done. How have you done it? Whatever you’re doing is working,’ which was nice to hear however there’s still no long-term care plan from that point onwards and no follow-up appointments.

I’ve had to do all the research around managing my diabetes and sign-up for various courses on how to keep up and remain informed about my condition. I’ve had to be proactive and, for example, signed up for a research project in Oxford where they were doing a comparison with people who are living with diabetes and also those without the condition and building up research data. But again that’s come from my initiative and not my GP surgery.  

Since my conversation with the practice nurse about the CT scan and extra blood test I’ve not had any direct contact with my surgery and I’ve still not had a face-to-face appointment with my doctor, they’ve all been telephone consultations. The only people I’ve seen face to face was the private consultant and that one meeting with the practice nurse.

No care plan

Regarding my medication, I’ve not been told how long I’ll need to remain on Metformin. There’s no care plan in place and I’m most disappointed about not being able to meet face to face with a doctor and have a conversation about my diabetes.

My coping has come from being proactive and doing independent research rather than relying on the NHS to do what they should be doing. We’ve used the Diabetes UK website and there are lots of good recipes and tips on food choices. Sadly there are many people who will accept what they’re told and not challenge their situation. It seems as if they just don’t have the time or resources to offer the level of care that is needed. We live in a relatively good area, there’s no poverty as such so services should be better resourced but they’re not. 

Fortunately for me the lack of support with my diabetes hasn’t had an adverse impact on other aspects of my life, but that shouldn’t excuse the inadequate support. So I’ll just carry on with what I’m doing and I’m guessing I’ll get a yearly call to do my blood test. But I’ll be monitoring my diabetes more regularly and at least every three months. There’s been no mention of whether I should be checking my sugar levels on a regular basis not once have they mentioned nutrition and what could be causing the occasional spikes in my levels. So I’ve just been left to get on with it.