Diabetic Health Care Professionals get bashed left right and centre and I am sick and tired of it. I’m sick of type one diabetics screaming for all the newest tech that appears to be so easy to get in the United States while failing to realise that is because they work on an insurance system and said diabetics are probably paying an arm and a leg to get stuff. While one is happy with their GCM the diabetic down the block is crying down the phone pleading for more insulin that their insurance company insist they don’t need until date X of the month. Diabetics eat up a huge part of the NHS budget and there is no point denying that. We are big part of the population but still, we munch those numbers. Constant hormone replacement therapy to make up for organ failure is an expensive business and we pay very little in National Insurance for what we get in return. Our Health Care professionals are working damn hard to get the best for us.
I have not always liked my Doctors. In fact as a child there was one I utterly despised. She had a terrible habit of talking to my parents about my diabetes while I sat there thinking ‘…but I’m the diabetic’. When my dawn phenomenon kicked in she accused me of lying about test results because on paper she could not work out why the rise was happening. However, for the most part the Doctors have been awesome. Other than the one they have been very happy to accept that all diabetics are different and just because something is happening to me that they have not seen before does not mean that I am lying about anything or not trying hard enough. If I am particularly struggling I tend to ask to see the same Doctor, as in my clinic you don’t see ‘your’ Endo. Once you are weighed and had your bloods taken your file is placed in a pile and you get whichever Doctor picks it up. However, if you wish for a specific Doctor a sticky note can be put on it and your file put to the side. You have to accept that may mean others behind you in the pile jump you for an appointment. When these appointments take an average of four hours that can be irksome.
As a youngster I loved a South African doctor because he would always listen to me and understood me when I was coming out of my rebel stage of not doing tests or taking injections. I was ten years old and my mum was depressed. She stared at walls for most of the day and didn’t answer my questions about what insulin I should take. I decided I’d do it all myself and got myself into a right faff. He understood when I said that after nearly of year of not following a routine it was hard to remember to do it again and harder still when my results never felt good enough. My parents couldn’t be there every second of the day. Doctors never said that but when you are getting a weight chart put under your nose and seeing you’re still under it and the Doctor wants you to see a nutritionist you can tell they are disappointed you’re not doing better. He listened and made sure that every ‘we still need to do this’ was accompanied with a ‘well done for doing that’. I was gutted when he returned to South Africa. I can still remember his warm smile. I would love to remember his name and send him an email or something to let him know how vital he was for me getting my head back in the game.
As a teen the new team of Doctors were fantastic. They believed me when I said I was trying and set me mini-goals. They didn’t ask me to turn around a HBA1c of 13 to a 7 in 6 months. They hoped for 11. I know I was frustrating. I had protein in my urine before they realised that most teens do and they feared another organ was giving up. I went through test upon test and they shared notes and looked baffled. I was the first teen in my clinic to be put on lantus because they believed in my ability to do it, enter a whole new way of doing MDI. Slowly I turned into a diabetic with the perfect HBA1c and apart from the dawn phenomenon I was content. The DP was not nearly as bad as it is now and the Doctors settled for a number under 13 at breakfast because every other number was fine. That is why I worry when I see diabetics frantically trying to get a number of 4.0 upon waking. That is far too low for my doctors. I was never asked to produce numbers that would occur in a non-diabetic cause my team understand I AM diabetic.
My team always value my opinion. As a fourteen year old I went to them and said ‘I want a different sort of snack at break time and my novorapid isn’t working long enough to cope. Is there something else?’. Humulin appeared and it took a lot of tweaking but nurses were always on the other end of the line. My team are patient and understanding when I used to be terrified at the idea of ‘cut my insulin by HOW MUCH?!’. They reassured me, don’t think of the number. It is a %. We would rather you higher than hypo. Call every day if you need to. My team are always happy when I say ‘yeah I see that pattern. I know what to do. No carb meal/overnight test ect.’ They also trust that I know how much I need to alter my levels in different seasons. They respect the fact the specialist in my diabetes is me in regards to high my body reacts to certain things.
Getting a diagnosis of the dawn phenomenon and hypothyroidism was hard and difficult and if there was any moment I would have turned on my team it was then. They had no answers and I was bursting with questions. I am glad they were honest and said ‘I don’t know’ when the tests came back negative for problems, when my THS levels were still lower to be diagnosed, when lantus by the bucket load wasn’t pinning my dawn phenomenon back anymore. They wrote letters to help me leave university and to get benefits. Nurse answered emails after emails if only to reassure me that I was doing the best that I could. I had Doctors say to phone back in two days. They were going to gather all the Doctors together to look at my notes. Finally they said insulin pump and then they said 2 years. I was devastated.
My team went to the parliament and demanded my hospital get more funding. They threw their toys out of the pram in the most professional way and cut my wait to 18 months. They had the money but they needed the nurses. They sat and carefully weighed up whether to pull the nurses from more day to day care to run pump clinics and if the nurses could even cope with that many new pumpers asking questions and decided the diabetics were more important.
My team always look worn out and exhausted and more often than not they face diabetics demanding they ‘fix’ them while the diabetic does very little to help themselves. Those hard working diabetics on twitter and on forums are not the majority. They must be so damn frustrated with the diabetics that don’t test, don’t carb count, don’t try. But they tell the Doctors it is their fault when the pain starts in their finger tips and toes. I salute the nurses who are on call for 24 hours a day in those first days of pumping. I salute the Drs who rush to A&E and Intensive Care to try and save a diabetic’s life. I salute the Drs who are part of the teen clinic in Livingstone so drive from Sick Kid’s in Edinburgh once a week to hold clinics alongside the adult Drs. I salute every member of staff that can see that they are slowly but surely losing a patient and fight tooth and nail to bring them back while the paper pushers tell them no no no no and no when they need new life saving tech.
My test results did not say hypothyroidism. My body did. It was my endo that I went to see, out of clinic hours, making them leave their offices in the hospital to come down to the clinic area. They diagnosed me after looking at my blood’s and symptoms and despite it not being diabetics they wrote the letter to my GP telling him that you WILL give this patient levothyroxin and test their levels in 6 weeks. I don’t think Endo’s write many prescriptions. Leaving with one was odd but it turned my life around. I know that if I need them I can speak to an Endo within 24 hours, not just a nurse. That is so reassuring.
I really salute those in diabetic care brave enough to appear on social media. Social media tends to be dominated by diabetics who are trying their very best. Many are frustrated at the lack of care they receive and that is understandable. We need more people getting into diabetic care. Seriously, feet checkers. They are always missing. Yet, five minutes on twitter and I would never ever want to do such a job. It doesn’t look rewarding. It looks like you will always be told you are not doing good enough, even if you prescribe the insulin that changes a life around or sign off on equipment that will change everything. ‘but you didn’t’ is a shadow that seems to loom over the profession and it needs to stop.
Sure, say ‘there was no nurse to do X’, I was frustrated my Dr said ‘Y’. But does it really take that long to say ‘Dr said I did a good job!’, ‘got through clinic quicker this time yaaas!’ or ‘so glad i got signed up for a pump by dr x’. Everything is politics. Drs are held back by rules but never for a second think they don’t do their hardest every damn day. People talk of lost limbs and shooting nerve pain. They don’t talk about healthy babies and bright cheeks on previously ill babies or happy children finally having their classmates understand because their nurse went into their school and explained. Our Drs and nurses are still students. Things change every day. They go on courses to learn what a new insulin does or how to work a new pump. They try their best to keep up. They try their best to save us.
Let’s try our best to remember that.
Karen. Emma. Eilidh. James. Anna. Maureen. Liz. Susan. The Doctors I can’t remember the names of and the girls who draw the blood.
Thanks. I am me because of you.