It's about my health, so why can't I be involved?

My frustration is at an all time high and my engagement is at an all time low.

When will I find a GP that actually lets me be involved in my care? Allow me to be involved in the decision making process about me? Allow me to see the information they hold about me and my conditions?

I recently blogged about visiting my new consultant at Sheffield, where a diagnosis of Raynauds was given. A letter explaining the details of this diagnosis and the possible (and recommended) drug therapies available to me was sent to and received by my GP.

I have yet to see this letter and I suspect I never will!

I only know my GP has a copy because I rang on Tuesday to discuss my other constant gripe with them... that of stopping me from ordering a repeat of my insulin, test strips, needles and lancets every three months - you know, those minor things that keep me alive! They "resolved" that issue by setting the system to require a review on, yes you've guessed it, the 18th June 2014!
At the end of the conversation I asked if they'd received the letter from the consultant and, when they said they had, I asked for information on the drug recommendations so I could decide what I wanted to do.

After mulling over the options, speaking with my DSN and an impending visit to Iceland looming (which is currently in the grip of some horrendous snow blizzards) I decided I should consider having the drug as a backup for those days when my hands just hurt that little bit too much.

As I was going to the GP surgery today to pick up my latest prescription, I asked the receptionist if it could be arranged. She looked on the system, pulled up the letter from my consultant, read it all and then suggested the GP should give me a ring next week as they didn't work on Fridays. So it has been agreed the GP will ring me on Tuesday to discuss how I can best make use the drug once it's prescribed. This is good. I will get valuable input from the GP and will have it on my prescription before I travel to Iceland.

What annoys me most is that I'm not allowed to view the recommendations provided by my consultant in the letter to my GP about my condition. The GP and the receptionist are the ones that control this information and they relay what information they chose to me - I feel totally disempowered and, as a result, totally disengaged with the whole process. The end result is I suffer more.

What happened to the "No decision about me, without me" idea?

Surely for that mantra to ring true I should have access to the same information the GP is given?
Wouldn't it be sensible for me to be the recipient of the letter and my GP cc'd on it?
Why can't I be trusted with this information about me? Am I not clever enough to understand it?
Must the only way I access this information be via translation and summary from the GP and their receptionist?

I want to be involved! I want to understand my health and my care! I want to be a part of the decision process! Surely this is a good thing? Better outcomes occur when patients are involved and engaged, so why am I constantly shut out?

Maybe one day things will be different...

The impact of nursing and being truthful

I’ve never shared my diagnosis story. It is something I’ve wanted to do for a long time and eventually it is something I will do. This blog post has come about because I was working on some text for an up-and-coming #ourD tweetchat with the #wenurses community. This post touches on my diagnosis story but only because I want to share a few things about the positive impact nurses have had on my life since dx; how they have contributed hugely to how I manage my diabetes and to whom I could never thank enough for their patience, compassion, kindness and care.

The beginning…

Discharge letter

When I left hospital with a diagnosis of type 2 diabetes, I was handed a clutch of drugs (Metformin and Gliclazide) and a discharge letter. Just before leaving I asked one of the nurses on the diabetes ward “What should I do?” and the answer came back “Eat healthy and you’ll be fine”.

It was dinnertime when I left the ward. I went, with my wife, down to the hospital canteen and looked at the food on offer – I nearly cried.

Before hospitalisation I had been eating a healthy diet, so what did healthy mean? I looked at everything on offer and I didn’t know what healthy meant anymore. I felt that a wrong decision now could mean I'd be going straight back on to the ward before I'd even left the hospital grounds.

After a long time of indecision I chose a lasagne with salad and then tentatively started to eat. It was the hardest meal I’d ever eaten, not because it was horrible – far from it – it was much better than the food I had on the ward! It was the hardest meal to eat because I was eating it in fear.

I left most of it on the plate claiming I was full. I didn’t want my wife to know the real reason… I was scared.

When we eventually got home I immediately went for a shower. After a week of washing myself in the hospital bed, this was freedom! I was so tired, I went to bed and was asleep before my head hit the pillow!

The following day, still tired and trying to come to terms with a diagnosis I didn’t understand, I rang my local GP surgery and asked if it was possible to see somebody. They must have heard something in my voice: desperation? fear? or maybe I was just lucky? Somehow they sorted me out with an appointment that afternoon with the practice diabetes nurse, Helen.

I turned up and explained my situation. Helen already knew I’d been in hospital; she’d been trying to contact me about my test results (which showed I had diabetes) at the very time I was being admitted to the critical care unit at Doncaster Royal Infirmary. Shocked at the lack of information I’d been given, she spent over an hour explaining everything to me; sorting out my prescriptions; providing me with the tools to manage my condition and setting up my follow up meetings including my quarterly Hba1c checks. In that time Helen managed to turn me from someone who was ignorant about my condition and frightened about the future into someone that knew what they had, understood what they needed to do and (most importantly) knew they could handle it. I might have been given a life changing diagnosis, but Helen had given me a life changing outlook. She will never know how much the time she spent with me that day impacted my life for the better and I will be forever grateful.

The truth…

 

I wonder when insulin treatment started?

It turned out that my diagnosis was incorrect. I actually had Type 1 diabetes. I had managed to last over a year with an incorrect diagnosis. As my blood glucose levels increased, so did the Gliclazide and Metformin doses. Eventually I was on the maximum dose possible with my blood glucose levels continuing to rise. Unlike my initial diagnosis, this time I knew what was happening to me. I knew what the tiredness meant, the thirst, the constant visits to the toilet. I knew from the numbers coming up on my bg meter that if they weren’t resolved soon I would end up back where I started – the hospital.

It was at that point a GAD test was ordered and over a month later the result came back – it confirmed I actually had Type 1 diabetes.

I'm sure I could have obtained a correct diagnosis earlier if I’d been honest about my diabetes management, but I didn’t share everything with my practice nurse. As far as she was aware I was continuing to eat a normal healthy diet – I wasn’t.

I knew carbohydrates increased my blood glucose level.
I knew the Metformin reduced my blood glucoses levels by about 1mmol/L (probably).
I knew the Gliclazide would stimulate my pancreas to produce more insulin.
I knew if I went out exercising I could reduce my blood sugar levels.
I knew... I understood my diabetes!

When I saw the drugs weren’t working, I looked to the other side of the equation and started to remove carbohydrates from my diet. By the time I had a correct diagnosis I was approaching a carb free diet and at times eating under 1200 calories a day. I was a “motivated patient” who wasn’t going to let diabetes beat them, the Hba1c test would show I was in control.

If I had been honest with my healthcare team and told them exactly how I was managing my condition, that GAD test might have been ordered a lot sooner and that would definitely have removed a lot of the pain and anguish suffered leading up to the correct diagnosis.

Why didn’t I share this important fact?

I didn’t think it was important. My main motivation was to have the “perfect” Hba1c, as near to a non-diabetic value as I possibly could. If I achieved that, I would have done everything in my power to minimise any future complications, my healthcare team would be happy, QOF payments would be made and my biggest motivator might occur… I might be able to come off the pills - a win-win situation was on the cards. I was so focused on achieving those results that I failed to appreciate the true impact it was having on my life.

The night before…

I was sat in the room when the practice nurse rang through to the lab to ask if my GAD result was available. It may seem odd, but I had been wishing for a type 1 diagnosis the previous evening, I couldn’t cope with the prospect that I was type 2 and couldn’t do anything more to control it. I knew I couldn’t sustain the lifestyle I was living and I was frightened that if I was type 2 I would fail.

I’d come home from work that night, shattered and hungry. I tested my blood glucose level and found it was over 20mmol/L. I sat in the kitchen wondering what to do knowing that I was close to how I felt when I was admitted to the critical care unit. On the verge of tears I ate a piece of cheese believing if I ate any more carbohydrates there was a good chance I'd be going to hospital. I went to bed hungry and upset.

The news I was type one was a huge relief, yet a daunting one at the same time.

The Gliclazade was stopped immediately and I was introduced to insulin.

Once again Helen spent time to talk about the different types of insulin, the different types of pen delivery and asked me what insulin and delivery method I wanted to use. She taught me everything I needed to know to inject and how (and when) to change the dosage. It wasn’t until I’d injected my first basal insulin and I was comfortable with what I was doing that I was allowed to leave.

All change

Alas I moved out of the area and needed to find a new GP and therefore a new practice nurse. It was a sad day for me. I knew Helen was applying for a role working with Diabetes UK and I kept an eye out to see if she was successful. I was very pleased to see that she was. Alas my new practice nurse isn't a patch on Helen. Yes, she does all the tests etc but there is a fundamental difference. Helen dealt with me as a person, not my condition.

I'm pleased to say that my Diabetes Specialst Nurse team at the hospital in Sheffield also deal with me as a person.

In my first visit we talked about chinese takeaways, the second fish and chips from the chip shop and the third our favourite Ben and Jerrys icecream flavour! What has all that got to do with having "good numbers"? Everything! Feeling normal, feeling I have a friend I can turn too, feeling I can talk about my successes AND my challenges is important. So I'm learning to be more honest, when I'm asked "How are you doing?" I don't have to say what I always say ("I'm ok thanks"), I can open up and talk about what matters to me. It means I have the right motivation and get the right support. I no longer go to these meetings wanting to "pass the test". I go to these meetings to see how together we can improve my quality of life. If that means the numbers get better too... well we have a win-win on our hands :)

So my new years resolution? It's to make those few hours a year count by being honest, that way we can work together as a true team.

It's all in my mind - a change in perspective

The past few days I've been trying to bury some feelings, to ignore them, but I suspect the best way to really deal with them is to acknowledge them and face them head on.

This is my attempt at doing just that.

So what are the thoughts that keep asserting themselves in my mind? The thoughts I've been trying to ignore? It's something very simple...

It's the feeling of loss

You see I'm recently diagnosed (by most people's standards). I managed to evade my type 1 diagnosis until I was in my 40s. I consider myself to be very lucky in this regard - don't get me wrong, adjusting to diagnosis later in life has its difficulties, but I'm well aware I've missed out on a lot of struggles others have had to deal with.

I've gone through life not having to think about food.

If I wanted to eat something, I just ate it.

If I walked past a Mr Whippy ice-cream van, I could decide to purchase a ice-cream without a second thought. Single cone? Double cone? Flake? Extras? It didn't matter.

If I changed my mind and decided not to eat it, so what? It was a waste, but that's all it was.

If I was at a buffet, I could have a second helping (or more!) and all I'd need to worry about is an ever expanding waistline.

What I'm trying to show is that I could be spontaneous with food - no thinking required.

Monkey see, monkey eat!

Now things are different.

Carbs are king!

King of my thoughts

Before every meal (and sometimes even when I want a drink) it requires a series of mathematical calculations to be executed.

An estimation of carbohydrates, consideration of the time of day to determine what ratio to apply, a bg test to see if any correction dose needs to be included.

I also need to log everything in my diary, do an insulin injection and then, finally, do the one thing I wanted to do in the first place - eat or drink.

Hardly spontaneous!

...and if I wanted that extra sandwich from the buffet, well that would require some more maths, some more logging and another injection...

...and if I've injected insulin for food or drink and then decide I don't want it - tough! Once that injection goes in, I'm committed - it doesn't matter if I'm feeling full or sick, the need to eat is set in motion.

So at the moment I'm grieving.

Grieving for the loss of spontaneity around food.