Ninjabetic – me before my illness

My local commissioner has just asked me a question that made me well up…but before anyone thinks the worst, I’m happy about this. You see, she was the first person (in the 13 years I’ve lived with type 1 diabetes) to ever ask me why I didn’t attend my appointments in the past.

Being asked that simple question has made me realise that for the past three years I’ve been telling people the reasons for why I did not attend (DNA), but no one has actually asked me. That realisation has come as a shock to me, especially with recent discussions about the importance of providing patient-centred care. There is still so much to do.

This week’s hot topics on social media have been about patient-centred care and also about whether or not patients who DNA their appointments should be charged, so I wanted to share my experiences, not because I’ve been asked to, but because I haven’t. I know that a lot of change has taken place in my own diabetes clinic based on me telling the reasons for why I used to DNA, so there’s a chance this might reach a few more people who can address the issues their patients face.

My biggest reason for not attending was the location – the waiting room set-up in particular. I was 16 years old and had been recently diagnosed with a chronic condition. I had never been ill in my life, nor had I ever spent much time inside a hospital, a GP surgery, a retinal screening clinic etc. As I sat in one waiting room and looked around I saw people much older than me, elderly patients who had amputations and used wheel chairs, patients who were blind and were being assisted by friends/family and clinic staff. One patient sat with cannulas in both hands, wearing his pyjamas. I didn’t know where to look and I didn’t know what to think. Will this be me in a few years’ time, I thought to myself. Is this what my future looks like? I used to fight back tears through fear and worry about the present and the future. Now when I attend I see younger people, people with families, people who laugh and chat to one another and I see a brighter future for myself.

Then there were times when I did attend my appointments and I would see a different health care professional each time. The quick 15 minute appointment would mostly be spent telling the doctor or nurse about my history, which insulin I took, how many units, when I last had my feet checked… This used to frustrate me more than anything. To get to my appointment I used to have to take a whole day off work, unpaid, and from start to finish (travelling, waiting and being seen) it took around 3 hours out of my day. This was a less than fun way to spend my annual leave or my day off. When I was younger and regularly admitted to hospital, I was always seen by a diabetes consultant who was kind and caring. He had a big smile and always spoke to me, not at me. I rarely saw him in follow-up appointments though and I was passed from face to face, feeling more and more lost each time. Now, however, I see the same consultant or nurse each time, they know me, they remember the details of our previous appointments, they don’t need to repeat the same questions and we can get on with what’s important here and now, rather than trawling through notes and getting nowhere.

It seemed that I had longed for someone to ask me that simple question so that I could let it all out

I don’t want to go into too many reasons (there are a few more) but I want to talk about the biggest change for me – feeling like I mattered. When I met my current consultant the first thing he asked me wasn’t how are your blood sugars, how many hypos have you had, what was your last HbA1c…it was “how does diabetes make you feel?” In all the years I’ve had diabetes no one had asked me that question before. I didn’t just well up but I burst into tears as I began to tell him everything. It seemed that I had longed for someone to ask me that simple question so that I could let it all out. It was as if I had always waited for permission to tell someone and that time had finally come. After that appointment I knew that he would be the person that I would always see for my diabetes because he wanted to know about me before my illness.

As for charging patients who DNA…what will that achieve? As someone who skipped appointments on and off for many years, if I had been charged my response would have been to not book future appointments. At the time I wasn’t benefitting from them, I didn’t feel that I achieved any success when I did attend, but what would have helped is if someone had asked “why?”

It is true that at the time I didn’t realise the cost of my actions on the NHS. It is also true that the lack of investigation into why I didn’t attend has had a significant cost on my health and possibly my future. So when I think about what patient-centred care means to me, I don’t see charges for DNA, that’s the furthest from patient centred you can get. I see patients being asked “why?” and I see the issues being addressed based on their feedback and for me that is the step in the right direction that is needed.