My 13 year old son was diagnosed with type 1 diabetes in July 2023. This came as a huge shock and turned our world upside down. The initial care from the diabetes team was helpful and very supportive.
The majority of the care and advice came from the dietician who was an incredible support at a difficult time. Unfortunately since December 2023 we have felt completely isolated and abandoned as we try to navigate through new challenges with this chronic illness. He is now experiencing erratic blood sugar levels and I have tried on many occasions to get these into range but feel that I am often dismissed. Our last clinic appointment was online which didn't work for him at such a sensitive age. I have since been informed that these appointments can be online or in person, this was never previously mentioned as an option,
My biggest concern is that he has been encouraged to move to pump therapy since about 3 months into his diagnosis, this being mentioned to him as part of every interaction with medical staff. After a difficult few months and challenges with his insulin injections he has come round to the idea after much persuasion, to be informed the waiting list is a year. I have challenged this and have been told it is due to budgets, therefore my son's health and wellbeing is now a postcode lottery!
If this was made aware to us at the start of his diabetes journey we would have joined the waiting list months ago.
I would like to know the criteria for who access pump therapy, who has priority. I would also like information on how to submit a freedom of information request regarding insulin pump allocation.
This has had a significant impact on our family and feel we are back at the start of our T1D journey, I definitely expected better care and support for a child adjusting to living with diabetes.
"I definitely expected better"
About: Diabetes / Diabetes Outpatient Clinics Diabetes Diabetes Outpatient Clinics Dundee DD1 9SY Diabetes / Diabetes Specialist Nurse Service Diabetes Diabetes Specialist Nurse Service Dundee DD1 9SY Ninewells Hospital / Diabetes Ninewells Hospital Diabetes Dundee DD1 9SY
Posted by empathyxq76 (as ),
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