"Emotional support for Type 1 Diabetes"

Ten months ago, my then 3 year old daughter was diagnosed with Type 1 Diabetes. She was very poorly, but thanks to a urine test kit at home, I spotted her high glucose and ketones, and we managed to receive a diagnosis before she entered Diabetic ketoacidosis.

We were sent to the Royal Aberdeen Childrens Hospital and as it was a Friday, we stayed in over the weekend until the diabetes team returned to work on the following Monday. During this time, similar to all families given a Type 1 diagnosis, we were left to digest all the information about how to care for a child with this condition - including injections, carb counting, hypoglycemia, and the long term complications. All families comment of how steep the learning curve is during the beginning, which sadly is unavoidable, as all the information is necessary and sometimes complex. Families also talk of the stages of a grief a parent or caregiver can experience after such a diagnosis; losing the carefree life of childhood, the pain of having to inject your child potentially against their will, the trauma of serious hypoglycemia or the deep anxiety that comes with potential complications further down the line.

These experiences are, sadly, unavoidable - however, at no point during our admission did I feel emotionally supported during this very difficult time. I was on no occasion offered any psychological help despite the fact I was clearly and deeply upset and overwhelmed. My daughter was often served her hot meal of the evening, and left to watch it go cold because there were no nurses available to administer insulin for quite some time.   This was deeply upsetting for both my child and myself.

When eventually visited by Consultants, we were introduced to all the facts of our diagnosis which was appreciated, but once again, were met with little to no compassion for how deeply traumatizing this experience was for us. This is something which has continued during our 3 monthly diabetic clinic appointments. It seems to me very little training is dedicated to the emotional aspects of living with this condition and the physical consequences of poor mental health. I feel this is particularly worrisome as, being a parent of a Type 1 child and participating in many support groups, I have seen first hand how the initial experience at diagnosis often influences the emotional well-being of the family for many weeks, months or even years afterwards.

Type 1 diabetes is a condition which requires intensive management and can be very difficult to adjust to for both suffers and caregivers alike. At no point did I feel emotionally supported by the team, we were never reassured in any way, my child was never spoken to by anyone except nurses when the time came to inject etc, and I felt lack of staff was largely to blame for the reason my child began her new way of life eating cold meals. The diagnosis itself is traumatizing, and the lack of empathy displayed by staff and complete lack of emotional support resources in place, sets families up for difficulty from the very start.

I know RACH has a large caseload of pediatric diabetic patients, and I also believe that investing more resources into giving caregivers the confidence and support they desperately need from the beginning could ensure that the same patients are not so reliant on the clearly stretched resources afterwards for guidance in managing the condition. Being confident and emotionally well is very important when dealing with a chronic condition which requires intensive management, and the value of emotional support given at diagnosis cannot be underestimated in my opinion.