The highs and lows of being a patient


roller coasterI’ve had a very mixed day today, you know, one of those ones where it’s a bit like a roller coaster, up and down and all around – I’ve been to clinic and it wasn’t all good news. To make it worse the good news came first and then the pricking of the bubble 😦 but I guess on balance it was OK in the end.

For those of you who know little about Diabetes I had a clinic appointment and was waiting for a test result called HbA1c. It’s a test that helps you to understand how well you have managed your diabetes over the previous 2-3 months (you can read more about it here). As I had been trying very hard to improve my diabetes management I was looking forward to seeing how well I had achieved this aim. But it wasn’t good news 😦Diabetes

My result was actually higher than I have ever had before and I just don’t understand why. I also have slightly raised blood pressure which has persisted for a year or so. Regarding my BP my lovely consultant, Dr R, wants me to take more tablets but I want to try losing some weight first but we agreed a middle way; a 24 hour BP recording to see what is really going on.

I was despondent. I need to lose weight – for the BP (and also for me) – but that complicates my overall management and I honestly don’t understand why my HbA1c is so high.

This is where the experience turned around – Dr R, is simply a star. Now you need to understand that I suspect I’m not an easy patient, particularly for the nurses, but probably also for the docs. I try so hard to be a ‘good’ patient but I also know that I’m a Yorkshire lass who has a reputation for calling a spade a shovel at times of pressure and clinic = pressure. I also, of course, can smell patronising behaviour from a long distance and my response isn’t always as gracious as it should be, despite my efforts.superstar

I am pleased to report that Dr R handled me and my need for help with skill and aplomb. We have a plan and, more, we are going to manage it using email and technology. It seems that he has heard my pleas for less ‘clinic’ and more remote help and responded with a positive optimistic and helpful outlook. I certainly didn’t feel patronised or told off, he just made to feel like they were going to help me to get to the bottom of my issue. I feel sure with a bit more effort on my part and with his insight and skill we can sort this out. It was the first time I have ever really come away feeling like I had a clear ‘plan’.

But the other thing that happened also made me very happy indeed. Sometimes, as a patient, when you give feedback it’s really hard to see whether anyone is taking you seriously. The place where I receive my care is a struggling Trust. On the recent staff survey only just over half of the staff said they would recommend it as a place for their friends and family to be cared for and they were in the worst 20% scores for all trusts for some of the measures. The diabetes centre is fairly new, build from charitable monies but when I got there today the reception area was closed, shuttered and unmanned for the second time – I suspect a sign of the underlying cracks in the system.Pressure

I also know they have a problem with workload and they need to think about how they can do things differently but I think they feel like they under siege; torn and burdened.

But I discovered that they do listen; Dr R is a gem. I spoke to him last time in clinic about how difficult it is to get an appointment and how I didn’t think I need to physically be with him in the same room and surely we could use different ways to communicate? I also subsequently pointed him at my blog about a ‘Year of Care’ – see here.

Well, well, well; he was bursting to tell me his news as soon as I walked into the room and he brought a massive smile to my face – they are going to start a service improvement initiative to do exactly what I suggested, finding 20 patients from each of the 3 hospitals who would like to try to work with the team in new ways, using email and technology, to see if it works! I couldn’t have been prouder. I just hope of course that it is better for everyone and that includes saving some money but they are going to do this properly, with proper measures to assess the impact – my little heart swelled with pride.Computer stethescope

I also persuaded him (I hope 🙂 to look at how these patients could connect with each other using social media; I offered to run some sessions for those patients who were interested – you never know it might help them to be better connected as it has done for many of the people with diabetes that I chat to on Twitter, using #DOC and #ourD. It seems I have volunteered myself to help and am delighted to do so.

So, today was a day of highs, too high a HbA1c and a great one of feeling good that I might be helping to support making things better even if it’s in a very small way. Dr R promises me that they will write this all up when they are done and I can’t wait to see the outcome.

Are you a patient who has a good idea? Why don’t you try offering it up to see what people make of it? You never know you might have one of the solutions everyone is looking for!idea

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5 thoughts on “The highs and lows of being a patient

  1. I just love your blogs- great news about using technology/social media for patients, well done you!!! Would love UCLH to start thinking more like this……May point them in your direction at next visit, they do have a fab paeds diabetes website. As for the HbA1c…..as my dear friend Joe Solo says ‘ it’s only a number’. Keep going, you’re doing great Anne x

  2. Another thoughtful blog, thank you for sharing. NHS culture is shifting Anne – slowly, but still positively shifting. Don’t get too excited it’s gonna be a long road……
    I believe we are now seeing staff and patients sharing lateral thinking – dare I say it but we/staff are now ‘allowed’ to think outside the box? Patient engagement events and/or just spending ‘quality’ (as opposed to quantity) clinic time with patients does allow conversations wider than just condition management.
    Positive organisational culture – never thought I’d see or here myself say it!

  3. Annie Cooper: nurse, Type 1 diabetic and social pioneer | mumoActive

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