Date: 30 August 2016
Long before he was diagnosed with type 2 diabetes, Kirit Mistry had been an experienced community activist. His role as Executive Director of Derby’s Racial Equality Council and the creation of the city’s Community Health Equality Panel was followed by work with the East Midlands Ambulance service to develop the first black and minority ethnic first responder scheme. Kirit now works with Derby Hospitals and Leicester University Hospitals Organ Donation Committee as the community link for BME, faith and diverse communities to raise awareness of organ donation.
“My GP said I should have known better,” Kirit remembers. “After all, I had cared for my mother, who had type 1 diabetes and needed a lot of support. So when I went to the doctor complaining of feeling persistently tired and thirsty, I think he expected me to already know that this was type 2 diabetes.”
Kirit admits that for the first couple of years he was in denial about the condition. “I didn’t want to hear about the disease and how to control it, I just wanted it all to be reversed.” Over time, though, Kirit began to take control. Prescribed two medications, he started to work on controlling his weight. So far he has managed to get his HbA1c down from 13 to a steady 8, and he knows this needs to drop further.
So what was the trigger for change? “I started to worry about the risks to my eyesight and the chances of losing my driving licence, which would have taken away my independence. I had seen insulin-dependent diabetes close up and wanted to avoid that. I didn’t make the best of the weight management programme at the start but got to grips with that later. I do make sure, though, that I get all the regular checks: eyes, feet and kidney function, as it’s vital to monitor these.”
But Kirit didn’t stop at controlling his own condition. He started to volunteer for Diabetes UK and could see the potential of using their support to set up a system of ‘community champions for diabetes’ in Leicester and the surrounding area. Four people (including Kirit) were trained to use a resource toolkit.
“We learned how to run awareness sessions about the nature of diabetes, which was valuable. But it’s hard to maintain a team of people to deliver those kinds of sessions, and – more importantly - I could see that people wanted longer-term support”.
Kirit set up a diabetes support group for people in the South Asian community, of which he is the founder and chair. Eighty people have joined the group and about thirty come to each of the monthly meetings. At these meeting, expert speakers advise the group and respond to their questions and concerns.
“We shape the meetings to what people tell us they want to know. Diabetes specialist nurses, pharmacists, dietitians – they have all helped the group to become better informed and more confident to manage their diabetes.”
But this support group is not just a place where experts instruct patients. “There’s a lot of sharing and support,” says Kirit. “We walk together, and share recipes and information about how best to control the condition. We are going to community festivals and events throughout the year to recruit more members. We’d like more GP practices to encourage their patients to join the group.”
How does self-management education fit into all this? “I went on a DESMOND course soon after my diagnosis,” Kirit recalls “It was fine, though not, in my view, culturally sensitive enough. In my local area a new provider is running shorter education sessions targeted at people diagnosed within the last year.”
Thinking of the needs of local people in the South Asian population who have lived long-term with type 2 diabetes, Kirit has been making contact with doctors and diabetes specialists from India with a view to developing a more targeted self-help education programme.
Kirit would like to see greater representation of diverse communities in all organisations that support the prevention, treatment and control of type 2 diabetes. “Influential policy and NHS bodies need to reach out to local community groups such as ours and individuals from diverse communities need to apply to get involved – that’s how change will happen.”
For more information, download On the Level: Evidence for Action on Type 2 Diabetes.
How community activist Kirit Mistry set about tackling type 2 diabetes in Leicester’s South Asian community.