Life with diabetes – what could be improved, by William Maxwell
I had received good information from Jessica on how to find the venue – 67 Union Street Glasgow. Living on the outskirts of Glasgow it was only a forty-five minute bus ride to get to Union Street opposite Glasgow Central Train Station. The day was cool and grey – an unusual summer day for Glasgow in that it was not raining!
The gleaming face of 67 Union Street towered towards the clouds. I was so taken by this façade that I walked past the entrance and had to retrace my steps toward the door held open by the distinguished commissionaire. “Diabetes Conversation” I said and he said “Ninth Floor”. I knew I was about 45 minutes early – but as a pensioner one is at the mercy of First Bus and the next bus, in an hour’s time, would have made me late.
I came out of the lift into the venue. In front of me was a long desk with four or five young ladies clad in fetching blue Diabetes T-shirts. I said, “Hello, I am William Maxwell” and I was quickly handed a named neck badge. “Go and help yourself to a tea or coffee” said Jessica in her fetching mid-West accent. I wandered over to one of several tea servers, puzzled over the range of tea types available, and finally it was a toss-up between an English Breakfast or Earl Grey tea bag.
Adjacent to the reception area was a large room laid out with six large round tables at several of which about ten people had already randomly seated themselves. I wandered over to one table at which were already seated William and Bill. We introduced ourselves and soon became involved in animated conversation about engineering, travel around the world and the current state of the NHS in western Scotland. Over the next 30 minutes we were joined by Ian, Ruth, Frazer and Jessica who soon established herself as our facilitator.
David Jones, the organiser of this meeting introduced himself. This Big Conversation was the sixth of seven that the staff had organised this week in major cities all over the UK. It is now estimated that there are 4.5 million people suffering from diabetes in Britain. David said that the concept of these conversations was to determine how Diabetes UK might work to reduce the incidence of type 2 diabetes, which is reaching pandemic proportions, and investigating local views upon five questions about the effect of diabetes upon the population.
Each table of eight or ten people discussed the following questions at some length guided by their respective facilitator. We discussed, in turn:
1) How diabetes affected something that each of us did during the last week
Topics of concern were the incidence of secondary complications, how exercise affects control of blood sugars, does increased stress influence diabetic control?.
2) How many of use took medication and how conscientious were we about taking it
Most seemed conscientious but recently diagnosed Type 1 diabetics struggled to balance exercise, insulin dose and carbohydrate intake, they felt support from the NHS, especially in GPs surgeries, is poor and psychological input was notable in its absence.
3) If one could change one thing about the healthcare one receives for treatment of diabetes, what would we change?
Some felt that the service provided by some GPs lacked any personal communication and was rather dogmatic. Others stated that they feared a lack of consistency of which GP they saw or were unhappy about how quickly the frequency of meetings with their GP fell away after initial diagnosis, or that different GPs had different clinical approaches which caused confusion or anxiety on the part of patients. It was suggested that GPs should be obliged to attend a refresher course on changes in clinical therapeutics for diabetes, say every ten years or so, to keep them up to date with the rapidly evolving clinical literature.
4) How does diabetes affect your day-to-day activities?
Comments focused largely upon relationships with a patient’s place of work, a lack of appreciation of legal obligations on the part of employers toward their diabetic employees. Where companies were small, say less than 10 employees, tolerance and appreciation of treatment was often poor. Companies or employers large enough to have human resources officers tended to have a better relationship, while large organisations like universities provided an excellent level of care. In small and intermediate sized companies an improved awareness of obligations on the part of senior management needs to be achieved.
5) What is the most frustrating thing for you about diabetes?
The most frustrating aspect of having diabetes was the fact that one has been diagnosed as having diabetes. Sometimes the diagnosis happens as the result of tests related to another clinical condition so that diabetes “is diagnosed by accident”. A lack of awareness by the general public as how to treat an acute diabetic situation, both in terms of acute hypoglycaemia or the types of damage to one’s body may be induced by persistent hyperglycaemia was recognised and a need for better education sought. Lastly there was concern raised about the lack of funding to provide diabetics with technology that would allow them to become more self-reliant or able to improve their level of self-care.
By now it was time for luncheon. A delicious butternut squash soup, for which the carbohydrate content was clearly indicated, and a wide choice of sandwiches was provided. For those of us who had requested a low carbohydrate meal, a large bowl of salad and fish was enjoyed. This was followed by an excellent fresh fruit salad and a choice of teas or coffee.
We returned to the meeting room well satisfied. Three discussion venues had been set up. These were:
1) prevention of type 2 diabetes
2) Hopes and fears for the future and
3) What do we want Diabetes UK to provide to us over the next five to ten years.
Each venue had a facilitator to write ideas or comments on flip charts. At least five pages of comments, ideas, or questions were generated at each venue. The facilitators were later to summarise and correlate the content at each discussion site. Diabetes UK would use that information to define their objectives within the near future as to how it may best serve the diabetic community. We look forward to this with deep anticipation and faith because such a good consultative scheme had been organised.
The thirty of so attendees stated that they had found the day stimulating and rewarding, liking the feeling that they are actively contributing to the development and aims of Diabetes UK. We thanked all of the organisers and facilitators, said our goodbyes to the new friends we had made and left for home. Remarkably, the weather was still dry!
William was taking part in one of our Big Conversation events. Have you say in the Big Conversation.