In the first few weeks our diabetic nurse specialist – Miss L mentioned that we were now entitled to DLA. For those that don’t know DLA is Disability Living Allowance. Because of Arlo’s diagnosis we were eligible to apply. At the time miss L mentioned it I remember saying to xrss that I was confused, we have just had a week of experts telling us that Arlo will be able to carry on as normal and other than a whole heap of organisation he will be able to continue as he has always done. So why now have we been told we can apply for DLA he isn’t disabled!
Miss L said we didn’t have to worry about it now as we couldn’t apply until three months after diagnosis so I put it to the back of my mind and didn’t think much more about it.
It was Miss L who kept asking me “How you getting on with your form? You won’t get it until three months post diagnosis but you will need to make a start”
I had yet to print off the form and knew Miss L was heading over for a home visit so thought better get it printed quickly complete our part and then hand it over to Miss L .
Eighty four pages later I had a book in my hand! Looking at it I thought WTF! I honestly thought it would be a case of sending a medical letter confirming diagnosis and job done. I totally under estimated the level of content that was required.
Miss L was doing a home visit and whilst completing her section kept saying you need to give dates, you need to give times, DWP like examples they like time lines otherwise they will decline Arlo’s application. I couldn’t believe what I was hearing so the government had said that all children (under twelve!) with type 1 are entitled to DLA but it’s up to the local authority and how you complete the form as to whether you will be awarded the DLA!
When I finally got round to looking at the form about two months after diagnosis l began to realise why one might need the DLA. In the NHS all of Arlo diabetic equipment insulin pens / needles / blood glucose machine are all free on prescription and will be for the rest of his life. This is standard NICE recommended equipment that is used to manage type 1 diabetes. Anything above the standard such as injection ports, diabetic kit bags, hypo juice bottles (post to follow) we will have to pay for by ourselves. I get that, I don’t begrudge the NHS for not letting us have injection ports or sweets on prescription. Two months down the line it was getting quite expensive. Injection ports alone were £78 per month! I could now see the importance of the DLA. It took the best part of two evenings to complete the form ensuring I had placed every minute detail in and documented times of hypos – management of these and what level of care was needed as well as hyper detailing the worst case scenario in all scenarios. Feeling pleased that I had completed the form off it went.
Two weeks later Arlo had a bit of a cold, I say a bit of a cold because really that was all it was a dose of calpol and he would be pretty picture of health. Except he wasn’t that week he had three evenings dangerously high blood glucose levels. We had to do two blood tests for glucose and ketones through the night every 1-2 hours. At one point during the middle of the night we wondered if would need to go to hospital because they were so high. We were pretty broken that week. It was an awful reminder that scenarios like this would be part and parcel of our life now, they were not going to go away. This was our new normal.
Speaking to Miss L about how week, mentioning that he had wet the bed she immediately said “He was high, that will happen if he has high sugar levels.” I hadn’t registered the bed wetting to high levels but of course how could I have forgotten the period before he was diagnosed where he had high levels and was constantly wetting the bed.
I was starting to understand the need for DLA. Arlo needed care, he needed constant supervision until he was old enough to manage his diabetes on his own. The form had already been submitted and even though every child with type 1 diabetes is entitled to DLA it is so dependent on your area, who is reading your form and more importantly the information that is submitted. In other words your child may be entitled to DLA but your child may not get awarded any DLA. I have had past liaisons with the DWP (Department of works and pensions) through my job as a nurse working with vulnerable people. Not all of it was positive, in fact most of it was negative. I wasn’t expecting much when I contacted them. I was pleasantly surprised when I finally got through to them they were helpful, supportive and reassured me the new information would be added to Arlo’s application.
Three months later the letter arrived we had been awarded the middle rate of DLA, we had been awarded the DLA because Arlo did not have control of his bodily functions at certain times. Seeing it there in black and white was really hard, it made me angry, upset and very protective of Arlo, Our lives really had changed and whilst we were dealing with it and adjusting to it time wasn’t making it any easier. Unless you have a child with type 1 diabetes you cannot understand the complexity of this condition how it affects you as a family, as a parent and of course for Arlo who has to live with this condition for the rest of his life.
Arlo has been awarded DLA until he is aged 12. This is the age that the Department of Works and Pension deem Arlo or any other child mature and old enough to manage his own type 1 diabetes. I don’t know where we will be in 6 years. I can’t tell you now what kind of 12 year old Arlo will be. If Arlo aged 6 is anything to go by on Arlo aged 12 is going to be a pretty amazing boy. I have no doubt that he will be mature enough but as with all 12 year olds his priority is going to be playing with his mates, making music and playing football & not type 1 diabetes.