My brother was diagnosed with diabetes when he was in his late 20s and at times he struggled to manage his condition. Sadly, our family suffered a devastating loss, when he was just 38 years old, he died of Diabetic Ketoacidosis.

James

James was a very lively and funny character. In his secondary school years, he was a talented all-round sportsman. He captained both Repton and Northern Independent schools at football and won his school colours for hockey, fives and cricket. His football career was cut short by a knee injury, so he later took up golf.

He enjoyed travelling and he visited Barbados, Los Angeles, Australia for the Ashes and many more places. Perhaps his biggest adventure was a road trip where he drove 3000 miles, all over Europe, in 11 days! James loved music and he had his own Sunday afternoon show of Jazz and Blues. A lover of general knowledge quiz shows, James also captained a team for the BBC show "Eggheads".  

James had a real sense of adventure, whether it was scuba diving, hot air ballooning, camel riding or taking his beloved terrier for a walk on the beach in Norfolk. James was up for it all.

Diagnosis

It was a huge shock for him, especially for a sporty person who had been so fit and well. At the time of diagnosis, he had been struggling with his health for a couple of years. When he was diagnosed with type 1 diabetes, even though he finally had the answer, this was the start of a difficult period of self-management and adjustment for him. In particular he struggled to maintain his blood sugar levels.

James used Diabetes UK for dietary support and information to understand his condition. He would always verbalise to friends and family that team Diabetes UK were the people he could ask questions and receive reliable information. He had faith that pioneering research from team DUK would make this condition easier for him to manage in the future.

Daredevil James once jumped out of a plane to fundraise for Diabetes UK, so running and fundraising in his memory seemed like a good way to place my grief.

What would he think?

He would probably think that I have gone crazy. Because of his competitive background in sport, he would possibly be interested in my marathon times and he would likely be encouraging me to push myself harder.

It is my wish that one day nobody will lose a loved one to this disease. For as long as my legs will carry me, I will always run and fundraise in his memory.

James was a fantastic son, brother and uncle, with an infectious energy. He was incredibly adventurous, funny and full of life. Not a day goes by where we don’t think of him and wonder what life would be like today if he was here. We love him, we miss him. I’ll keep on running.

Lucy has a JustGiving page at www.justgiving.com/fundraising/Lucy-Freeman16

SALLY says that often the support needed for young people living with type 1 isn’t available, and the jump from the support you receive as a child to managing diabetes as an adult can be overwhelming.

They said “I was coming to terms with a lifelong diagnosis and didn’t want to be living with diabetes- I just didn’t want to engage with it at all. It was difficult to be given so much responsibility.

“Looking back, I think I had found it hard to come to terms with having diabetes ever since I was diagnosed. I had amazing support from my mum and dad- my dad was also diagnosed with type 1 in his 50’s, but there was so much to take on board, it felt overwhelming. There were lots of similar feelings when I was 18 and told my family and friends, I was gay.

“Telling people I had diabetes, felt a lot like coming out. I just felt like I had this secret, that I was embarrassed to tell people about. I don’t think we talk enough about the stigma and embarrassment that you can experience when you’re living with diabetes.’

SALLY adds: “I just ignored diabetes for quite a long time, it’s difficult because I know now after experiencing some complications, the impact of not managing my diabetes but at the time, it was too much of a struggle. Help and support for young people coming to terms with type 1 is so important.”

I started to struggle with my mental health, and I became really obsessed with my blood sugar readings. It became the only thing I could think of.  

I was the first person at my hospital to be given a funded FreeStyle Libre, and I became overwhelmed. I was doing 100 scans a day. On paper it looked great, but I struggled to communicate how much I was struggling. I was striving for perfection and burning out.  

When I communicated this with my healthcare team, I painted a picture conveying, ‘I don’t know what I’m feeling but this is it’, and that’s where I started a process of how to heal and find something of myself past my blood sugar readings. That was a long process, because I moved to university during this period, with more transitions.  

I had been seeing a paediatric family therapist, but when my mental health challenges became greater, I was offered Cognitive Behavioural Therapy (CBT). I found that difficult because the CBT therapist was not there for diabetes specifically. I was grateful someone was able to do this with me, but the value was reduced. I later saw a different diabetes-related therapist and specialist dietitian which helped more, along with the ongoing support of my adult diabetes team, with whom I have a good relationship.  

Since my initial diagnosis, I’ve not experienced any challenges with my mental health, however since the recent complications with my eyes, I’ve started to feel the weight of having diabetes on my shoulders, especially when the side effects started to have a negative impact on my quality of life. As a result, last year I reached out to my GP to request some support which resulted in me having a few telephone conversations with a mental health charity. The decline in my mental health also initiated me to reach out to a support group for diabetes called The Diabetes Football Community (TDFC) and so access to a community who can relate to the day-to-day challenges faced living with type 1 diabetes. The group provides me with much information and support. 

What has been most frustrating, and problematic is getting financial support for our son. The DLA application form was so complex and incredibly long. We also sent additional information and readings from our son’s monitor, showing when he had his hypos, and that we were providing both daytime and night-time care. 

We applied for DLA in September 2022 and waited about three months for an outcome.As a result, this put a strain on our finances. Even with a letter from our diabetes nurse there was a delay, which meant we had to pay nursery fees for three months, when this should’ve been free.. 

The DLA have three levels of financial support and to be awarded the high rate you have to demonstrate you’re providing night-time care. We submitted our form and supporting information, which clearly showed how often he was up during the night and the care he needed, so we were quite surprised to only be awarded the middle rate. 

Appeal

The DLA gave three reasons why we didn’t qualify for the upper rate but we couldn’t accept their reasoning, so we appealed the decision providing more information to demonstrate why he needed care through the night and we were awarded the higher rate a few days later.

 I heard other parents saying that everyone is awarded the middle amount and when you appeal it’s then raised to the higher rate, but it’s very upsetting and stressful to have to go through all of that.   

We had just welcomed our second child, so had lots going on and needed to spend so much time on something that should have been very straightforward. Luckily, we were able to do the appeal process and formulate a proper response, as there are lots of families out there who haven’t got the time or resources to do that and are missing out on money that they’re entitled to.     

I don’t feel there’s enough understanding around caring for an infant with diabetes. I was told they didn’t feel the care of our son was any different to that of a typical two-year-old, but there aren’t many two-year-olds that have diabetes and require daily injections to keep them alive.

It was so disappointing they don’t understand diabetes, or the care required to look after a toddler with the condition. It’s a 24/7 full time job – you can’t take a break from it and switch off. 

Cost of living 

I’m currently on maternity leave, and even with my husband working, we are feeling the impact of the cost-of-living crisis, especially with the special care needed to support our son. Following the mini budget, our mortgage went up by about £400 a month and our energy bills have doubled.

We went from having a reasonable amount of money to no money at all. We can’t cut back on things like heating as it’s so important with our son’s diabetes to keep the house warm, as that can affect his levels; if it becomes too cold it can take the insulin longer to work. 

With our son being a toddler, his food choices can be very changeable, so one day he might like something and then the next he’s gone off it. Therefore, we have to make sure we have fresh food available in the house at all times, and fresh produce is really expensive. Gauging what he wants to eat can be challenging and if he decides not to eat something then I need to find an alternative that he will eat. Sometimes I can be making three or four meals a night for him until he eats something and that just adds to the stress of spending extra money.

Extra costs

Our son's pump needs adhesive patches and he’s had awful skin reactions over the last month or so, as he’s allergic to plasters. The money I’m spending on different creams and sprays to help with this are all little things that mount up and add to that extra expenditure. 

We want to be able to do things with our children like holidays and days out – just fun things. However, it’s not possible because any spare money is being spent on extra energy bills or the extra money for the mortgage. Even with the DLA money coming through, some of it will need to go towards paying another bill. Obviously the DLA money is to support the care of our son, but that’s getting swallowed up by all the extra costs we have that enable us to do just that. 

Uncertainty

I work for the NHS, which isn’t well paid, but it’s better than nothing. I will need to really consider if I can afford to go back to work. Equally we need to think about who will look after our son when he starts school, as one of us will need to be nearby in case he has a hypo or feels unwell and needs to be picked up early. It’s the challenge of doing this while keeping our heads above water.   

When the DLA accepted our appeal they said they would award the higher rate and then review it when our son turns three, which is in a few months. This means we’ll have to go through all this stress again.  With type 1 diabetes being a long-term condition, its not going away so it just means more worry and stress for us as we’re under the constant threat that his DLA could be taken away.  

Find out more about DLA And how to claim to help you cover the cost of extra care for a child with diabetes.