Adam (known as AJ) was diagnosed with type 1 diabetes in 2005, when he was 14 years old. He always really struggled on multiple daily injections to get good control of his blood glucose. His Hba1c was always 9 and above. The consultant kept changing his ratios, tried Lantus instead of Levemir, then put AJ back on Levemir as the lantus didn’t help. He then prescribed AJ metformin declaring that he must be insulin resistant, then told AJ that he had dawn phenomenon. It was a constant depressing battle. At no point did the hospital mention an insulin pump. I had mentioned insulin pumps several years previously, but the conversation was dismissed and I was told that they were still in their ‘trial phase’. It wasn’t until I joined some support groups on facebook in 2011 that I realised that in some areas insulin pumps seemed to be the preferred method of treatment, it was a complete revelation!
I googled the advantages of insulin pump therapy, and once I was satisfied that AJ could benefit from a pump I phoned the hospital and said I wanted an appointment to discuss AJ being considered for a pump. The DSN literally laughed at me, telling me that ‘it wasn’t that easy’, ‘pumps are very expensive’ and about ‘waiting lists’. I came off the phone very deflated. I then went back on the internet and found INPUT. The advice that Lesley from INPUT gave me over the next few weeks enabled me to secure funding for an insulin pump for AJ. Lesley explained the NICE guidelines and went through the conversations I was having with the DSN, PCT and consultant. AJ was due to start university in a few months, it was really important for him that he had the best blood glucose control possible. Funding for the pump was secured in May 2011. Aj finally got his pump (due to more delays by the hospital) in September 2011, just 10 days before he started uni.
Getting the insulin pump for my son was probably the most worthwhile battle that I have had. His Hba1c has come all the way down to 7.3 (the lowest it has ever been – and we are really hopeful that his next Hba1c will be lower still). AJ has said that he would never give his pump back – he feels that it has given him back some of his freedom. He ‘fits in’ again with his friends, he can be more of a ‘stereotypical student’, getting up and going to bed when he feels like it, eating when he wants to, going to the gym, and yes, even having some alcohol – the pump can cope with life’s ‘challenges’! I can not thank INPUT enough, and in particular Lesley, for the advice and help that she gave to me.
Since AJ has had his pump I have started an online business selling insulin pump accessories. (See Pump Fashion on INPUT’s Organisations, products, books page) A donation is made to JDRF on every order to help them in their research to find a cure. Pumps are wonderful – and definitely worth fighting for, but they are life-support, what we all want is a cure!!