Getting stuck into the world of diabetes – by Sheila

I am Type 2, on 4 daily insulin injections and have recently joined the team of Diabetes UK sponsored Patient Leaders (more of this later). In my spare time, I get out and about and am involved in all sorts of different activities, both out in the natural environment as I am particularly interested in nature, walking, although not the distances these days and I also belong to the University of the Third Age (U3A) so exercise my brain.

My husband was diagnosed with Type 2 diabetes when he went to the GP with a painful foot. It was totally unexpected as he was otherwise healthy and not particularly overweight. Having learned about diabetes through him, it was a few years later when I became aware that all was not well and following a family funeral when I spent time chatting to my only remaining aunt who I knew was also Type 2, I returned home and started testing my blood glucose with my husband’s meter. I took the results to my GP a few days later and he agreed that yes, I had Type 2 diabetes despite being only 49, fit and seemingly healthy.

Yes, it was a bit of a shock but there seemed little else to do but just get on with it – no point not to really. I had lots of support from my husband and our wonderful practice nurse who together with the diabetes unit specialists made it all very easy to get used to. I suppose I am the sort of person that just gets on with stuff and is not easily fazed by minor setbacks in whatever field of life they crop up.

That was 16 years ago now and the treatments have progressed from just Metformin and diet control through two injections per day and now on the Basal Bolus system and injecting a minimum of 4 injections of insulin per day.

Having taken early retirement from my job as a publishing editor in the agricultural industry to care for my husband, who is on a similar regime to me but also having other health issues, I am now getting stuck into the world of diabetes in a ‘patient leader role’.

Simply put, I’m one of several patients with diabetes, or living/working with diabetic friends or family, who has volunteered to share our experiences of local NHS care with those in charge of delivering it (so it can help shape future services). They include clinical leads, commissioners and managers, who are part of the NHS Clinical Commissioning Groups across the country.

Care concerns

One of the main points I want to look at as part of this journey is trying to get more joined up working within the NHS. For instance diabetes impinges in so many ways on other illnesses and even simple treatments for warts and verrucas, skin problems and even dentistry but there often seems to be little connection within hospital departments ensuring that clinicians know that you are diabetic and to take that into consideration whilst treating you. Maybe these new Patient Passports which are being discussed at the moment will help that but until something is sorted out we are all at risk.

It’s early days but I am looking forward to getting more involved in coming weeks and months. In the meantime it is back to managing my own diabetes, for instance this afternoon it is down to the eye clinic for my next checkup to see if there is any further diabetic retinopathy changes to cope with. Having had a good level result every 6 months, so far, for my HbA1c checks this does not seem to prevent deterioration in my eyes so it is always a worrying time… but heyho life goes on!

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