The mother of a teenager who has waited seven years for an insulin pump has said the current situation is “ridiculous”.

There are only 12 insulin pumps available for ‘new starts’ across the entire Western Trust area. Twenty-six pumps are currently available to replace pumps that are going out of warranty.
Type 1 diabetes affects approximately 1,000 adults and 200 children in the Western Trust area but only 88 adults and 75 children are receiving insulin pump therapy.

Before the Assembly term ended in advance of the election on May 5, Health Minister Simon Hamilton announced an investment of £1.7million to support diabetes services in Northern Ireland, including improved access to insulin pumps. However, the details of that investment have not been finalised with all of the Health and Social Care Trusts.

An insulin pump is a small, battery-operated pump which continually gives insulin through a fine tube that is attached to a small needle placed under the skin.

Violet Storey’s daughter Hollie was diagnosed with Type 1 diabetes when she was in first year at the Collegiate. She is now in her final year and is studying for her A Levels. “Her blood sugars are affected by lots of things like the weather and stress. At the moment she is stressed with exams and learning to drive so she is experiencing lots of night time lows,” Ms. Storey explained.
These episodes of low blood glucose occurring at night can result in night sweats, headache, restless sleep, and nightmares. In order to try and prevent them, Hollie must inject a 24-hour insulin dose before bedtime to maintain a normal night-time blood glucose level. If she is low before bed-time, her mother sits up all night checking on her and wakens Hollie if she feels that she should eat a snack to re-adjust her glucose levels. “An insulin pump would give her the correct baseline insulin and would give her more control over her situation,” said Ms. Storey, who is a former nurse.

The Lisbellaw mother is anxious about Hollie starting university without access to the potentially life-saving device. “She really needs an insulin pump before university, with all the dramas it brings. There is noone to check on Hollie during the night. My biggest fear is that Hollie closes the door of her bedroom one night and doesn’t waken up.”
Hollie is currently looked after by children’s services and her mother is concerned that if she is transferred to adult services, she will be moved to the bottom of the insulin pump waiting list.
“We keep getting told that there’s a couple of people being picked off the list and Hollie always misses it by one or two points,” Ms. Storey revealed. “Why? It’s been seven years and we are still waiting; it’s ridiculous and it’s really frustrating.”

Drama enthusiast Hollie continued: “I have had my eyes checked recently and there are changes. That is very concerning for me; do I need to go blind or watch my toe fall off before I am considered eligible for an insulin pump? When you have diabetes it is a full-time job trying to stay alive and to constantly go to appointments only to hear that I don’t meet the criteria, it’s very upsetting and frustrating.”
Hollie was never offered an insulin pump and it was only when she attended a camp organised by Diabetes UK that she saw a girl wearing one. It looked so easy and when mum and I asked the doctor about it, he put me on the waiting list. That was almost seven years ago.”

In January 2016 The Impartial Reporter spoke to Consultant Physician in Endocrinology and Diabetes in the Western Trust, Dr. Neil Black, who warned that funding was needed for insulin pumps, otherwise the Western Trust would run out by the end of 2016. 

After reading that article, Ms. Storey asked for a break-down of the points system which determines how an individual is chosen for an insulin pump. “It’s very vague and the list is more allocated towards children,” she believes. Appealing for action, Ms. Storey said: “The doctors say: ‘If it was my child I would want an insulin pump’. But this is my child, so please give me one.”
She concluded: “I think diabetes is given a rough shot. My child didn’t ask to be a diabetic. Surely being a diabetic is enough criteria?”
Hollie added: “We feel that we are being a nuisance when we keep asking for a pump. They keep telling us that there are younger children who need them more, but who are they to decide that your life is less important than another life?”

A spokeswoman for the WHSCT told The Impartial Reporter: “The details of the £1.7millon investment from the DHSSPS has not been finalised with HSC Trusts. “In the Western Trust recent funding has been provided for paediatric services and 12 insulin pumps have been purchased to support new insulin pump starts for patients this year.
“There are currently 88 adults and 75 children with diabetes on insulin pump therapy. The remaining 26 insulin pumps available are allocated for replacement pumps required for patients. Insulin pumps have a warranty period of four years and then must be replaced.”