My son was diagnosed with type 1 diabetes at age 4 and had a great paediatric service at NHS Ayrshire and Arran. However, since he left school and turned 16, they told him he now had to attend adult services.
The problem is, my son is going through a real psychological time of it - he is living with severe burnout. He's had type 1 for over 12 years now, and has had to live with myself and his dad separating and divorcing in the last three years also. He struggles mentally to cope with his treatment and his diet, he also has coeliac disease. My son needs extra support mostly everyday. He needs me constantly remind him to change his cannula for his pump, he never tests his blood sugars and all because he doesn't feel confident or in control of it anymore. He's frightened of having another seizure as he had a severe seizure on holiday and nearly died. We've all been living with the trauma of that for two years now. With nightmares during sleep and myself going to a brief six week counselling.
The trouble is, he was told on the phone by an adult diabetes nurse specialist that if he doesn't come to clinic "he'll get his pump taken off him".. This felt like a threat to him, and now he doesn't feel happy to go back there ever again. He told me she spoke to him like he was a child. The person on the phone said to him he hadn't been at a clinic since before Christmas which is not the truth - as I personally took him to Ayr Clinic in February. Whilst at that appt the doctor didn't even know why my son had been sent there in the first place - as his normal clinic is at Crosshouse. They didn't really do anything to help my son, just told him that he would be referred back to Crosshouse.
So you see, this phonecall with my son left him feeling defensive and to protect himself - he told her, "actually I was seen in February". This has now led to my son feeling that he never wants to attend clinic again. He needs the help and support more now than ever. As teenagers move away from parental support - transition is supposed to empower them, support them and encourage them, not threaten them. I'm greatly concerned for my son's health. He struggles so badly. He has severe insomnia most of the time. He's scared to sleep some nights. I tried to take him to the GP but he said it was a waste of time because the GP didn't understand his diabetes. Please help us.
"Left feeling defensive"
About: Crosshouse Hospital / Endocrinology and Diabetes Crosshouse Hospital Endocrinology and Diabetes Kilmarnock KA2 0BE
Posted by deecee22 (as ),
Do you have a similar story to tell?
Tell your story & make a difference ››
Responses
See more responses from Eunice Goodwin