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‘Diabetes is a 24/7 job with no days off’

‘Diabetes is a 24/7 job with no days off’

November 4, 2019
World Diabetes Day is on 14 November each year

It is World Diabetes Day on 14 November and a local group is helping people to cope with the daily challenges of the lifelong – and life-changing – Type 1 version of the condition.

The peer support group was the idea of Maureen McGinn, who works for the NHS and sits on the Ealing CCG diabetes programme board, a partner of Ealing Council. She has lived with Type 1 diabetes for more than 30 years but, for the majority of that time, did not know anyone else in the same situation. The support group is a way to help others in a similar position.

Type 1 diabetes is a serious, lifelong auto-immune condition. Those with Type 1 need to take insulin to live, either by injection or by insulin pump. About 8% of people in the UK with diabetes have Type 1. It is still not known what causes it. It is not related to diet or lifestyle, it just happens.

Diabetes ‘rollercoaster’ has many impacts

“It has all kind of implications on your daily life,” said Maureen. “It’s a 24/7 job with no days off for good behaviour. Blood sugar levels are affected by a wide range of factors including timing, quantities and type of food or drink, exercise or just everyday activity, stress, hormones, alcohol – even the weather. We are constantly trying to keep our blood sugar levels in a healthy range for us, to avoid low blood sugars, or ‘hypos’, and high blood sugar levels.

“This roller-coaster can have an adverse impact on our eyes, kidneys, heart, feet, mental health – the list goes on. However, with the right support and education, people with Type 1 can thrive, in spite of our condition. We can still have a full-time job and do whatever we might otherwise have done, but some support and guidance is needed to achieve that.”

‘It can be quite isolating at times’

“Living with such a long-term condition as Type 1 diabetes can be challenging and can take its toll physically, mentally and emotionally,” continued Maureen. “It can be quite isolating at times.

“For the first 20 years after I found out I had Type 1 diabetes I felt like everyone else attending the hospital was dealing with it so well and I was the only one who wasn’t. During that time, I didn’t ever knowingly meet anyone else with Type 1 and the hospitals didn’t offer to get people together to talk about it.

“But, in 2010, I went on some training organised by the hospital for people with Type 1. It was the first time I was introduced to a group of other people with the same condition and we were able to talk to each other.

‘I can’t explain how profound a difference it made’

“In 2014, I decided I wanted to try an insulin pump, instead of injections, and I had to go to a specialist centre. One of the first things they did was to introduce me to the online diabetic community in the UK – who, in turn, invited me to regular get-togethers in central London for people using insulin pumps. It was life changing – and for the first time I realised we were all facing very similar physical and psychological challenges. I can’t explain how profound a difference it made and how accepted it made me feel. I want others to feel like that – and to not have to wait another 20 years to do so.”

This is where the support group comes in. Maureen wanted to find a way of reaching out to find anyone else with Type 1 diabetes that would like to meet up socially for peer support.

Even though there are more than 1,500 with Type 1 diabetes living in Ealing, according to data, there is no real way of people with Type 1 diabetes contacting each other. “Because of patient confidentiality and everyone having individual hospital appointments, it is not easy for you to meet other people in the same situation,” explained Maureen.

Starting by asking on Facebook and then putting some basic flyers in local hospitals, the group has built up slowly.

Maureen said: “Our group now meets every other month on a weekday evening. Meeting with others in an informal, relaxed environment and sharing our experiences, frustrations, anxieties, tips and ideas can help to manage some of the day-to-day challenges. We would very much welcome anyone else in the area living with Type 1 in Ealing.”

The link to the group’s Facebook page is below.

MORE INFORMATION

  • The Facebook page for the Ealing Type 1 peer support group is open to any adult living with Type 1 Diabetes in or around the Ealing area and the group can be found at: www.facebook.com/groups/388169292133881/
  • Diabetes UK is one of the main charities supporting and advocating for people with all types of diabetes report that Type 1 affects 8% of everyone with diabetes; while Type 2 diabetes affects about 90%. There are a small number of other types.
  • JDRF UK is another useful Type 1 diabetes specific website.
  • In 2018, Ealing CCG had 1,700 people registered with GP practices as living with Type 1 diabetes. Find out more on the NHS website.