Laura's story: Getting financial assistance for my young son with type 1 diabetes

My son was diagnosed with type 1 diabetes just before his second birthday in June last year. Looking back, some of the common symptoms were there, but it was so hot at the time that we put his excess drinking down to the weather, and thought he was getting through lots of nappies because he was drinking so much. He was also having the most awful tantrums, especially crying over his food and when he was thirsty, which we assumed was the ‘terrible twos’ and nothing to worry about.  

At the time, I was six months pregnant with our second child, so at one of my midwife appointments I mentioned my concerns and how I thought it could be diabetes.

I wondered if I was overreacting but decided to use one of the glucose strips they use to test pregnant women’s urine, and dipped this in his nappy. It immediately showed a high glucose reading, so we sent a urine sample to the doctor. When the results came back, we were told to take him to the hospital straight away. 

By the time we got there he was very poorly, with sugars around 45mmol/L and a really high ketone level. The doctors said we were lucky that we got him there when we did and had we delayed for a couple more days, or even that evening, it could have been a very different outcome. 

I had a vague knowledge about diabetes, but I just didn’t want to believe it and because we didn’t have anyone in the family with the condition, I didn’t think it was possible. However, our son may have had diabetes for two or three months before his diagnosis. 
 

We stayed in hospital for about four days and were taught so much about how to manage his diabetes. Things like carb counting and how to give him insulin. We started off on insulin pen injections and the finger pricking for a couple of weeks. Not long after this we were given a continuous glucose monitor (CGM) and a few months later an insulin pump. He’s doing really well now – the tech has made such a difference to our lives.

We were given amazing support from our hospital. We have a specialist diabetes nurse in paediatrics, and we can contact her anytime with any queries we might have. I probably speak to her on average every week and if there’s an issue we speak more often. We also have open access to the children’s ward, and I can ring them anytime.

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.