A patient’s perspective: Dancing the dance

If I don’t dance to the tune of the care system I don’t get the care I need to survive. I need medicines and other stuff to live well, in fact to stay alive. You, the nurse or the doctor, are the only ones who can give me those things; so I play your game.

I don’t actually need to come and see you. I have Type 1 Diabetes, I was diagnosed in 1979, so I have 35 years of lived experience. I do need to have some bloods done and to see the results, but I suspect I only need to see you if they are unexpected in any way. I do want to know my HbA1C, as I want to know how I’ve been doing. But to be honest whatever it is I know what to do; I should for goodness sake, I’ve been practising it for 35 years this year.

I learnt the art of the game as I was going along, sort of by trial and error. Keeping my thoughts in my own head are what seems to work best, but I have learnt this through experimentation. If you come across as “cocky” the staff don’t seem to like it, not that I would ever aim to be “cocky,” but what is needed is an appropriate level of neediness and lack of knowledge. I have also learnt who really holds the power and it’s not my GP—it’s you, the lovely specialist with your technical wizardry.

So I will tip up at your clinic because if I don’t, I can’t have my bloods done, and, possibly worse, you might discharge me, and you hold the power to take away my insulin pump. My attendance is about signifying compliance even though for me compliance is driven more by feeling well, living well, and my daily blood glucose results. In the clinic what’s really going on is an access transaction. I sit there wondering what I should say, I just want the tests, and the medicines, and equipment that I need. I don’t think I can say “I don’t think I need to see you” after all turning down help is churlish, bad mannered, and I’m essentially polite. But I can’t exercise any power; I am supposed to need you. The whole transaction is based on you having the answers and me needing to hear them; so I play the game and dance the elaborate dance.

I am not saying I will never need any help. But for a long time I haven’t. I wonder how many appointments are taken up with people like me, who are just playing the complex game?

So I practice and practice, being a worthy and good patient with the appropriate level of respect for your wisdom, but more importantly your power.

I think better care planning could work, a chance to really ask for what I want. Not the limited options you might think I should choose but real choices defined by me. So, for example, what if I was allowed to have a number of bloods done in a year without seeing you and given access to the results? What if I could email you with quick queries? What if I could see you in a clinic or via skype quickly if I was worried, but otherwise I didn’t need to come? It would have to be within a reasonable time not the six months I wait now. What if you sent me some information every now and again via email if new drugs and treatments came along and asked me if I wanted to talk about them?

So could we do this better, could we change the dance?

Competing interests: I have read and understood the BMJ policy on declaration of interests and declare the following interests: I’m an NHS Employee. I support mHealth Habitat in their digital activities on a voluntary basis and I am occasionally paid for time, travel, and accommodation by Pharma companies to give talks from the perspective of a person with lived experience of Diabetes.