A new integrated nurse for diabetes will start working in the community in the coming weeks. However this Clinical Nurse Specialist post will focus on adults with type 2 diabetes.
The current nurse working in Paediatric diabetes care is moving to a joint post that is shared with adult care.
Donegal parents of children with type 1 diabetes now fear that this will reduce the nurses availability for Paediatric care. They called for a dedicated Paediatric Diabetes Clinical Nurse Specialist at a public meeting yesterday.
The Diabetes Parents Support Group have recently undertaken a campaign to highlight their demand. An online petition has gathered over 1,200 signatures and, to date, over 7,000 written signatures have been gathered. These will be presented to Dáil Eireann in coming weeks.
Campaigners say 144 children in Donegal are diagnosed with type 1 diabetes. It is an auto-immune disease that destroys the cells in the pancreas, leading to multiple injections of insulin being required every day. An intense readjustment is needed to the daily lives of families with children diagnosed with diabetes. The CNS is a vital contact for parents who must learn to monitor and care for their children.
Letterkenny General Hospital currently has two diabetes CNSs. One of those has a Paediatric focus but is not entirely dedicated to Paediatric care. Parents worry that demands on her time for adult care will dilute the time available for children.
A 2008 Diabetes Expert Advisory Report recommended that 1 dedicated Paediatric CNS should exist per 100 children with type 1 diabetes. According to these figures, Letterkenny should have 1.5 nurses for the children.
The HSE have responded to say that they are currently recruiting a Consultant Paediatrician with a special interest in diabetes. However parents at yesterday’s meeting said that their enquiries revealed that this recruitment could take six to nine months.
Last year, the Diabetes Parents Support Group met with Health Minister James Reilly to ask for a dedicated Paediatric CNS. They left that meeting with confidence that a nurse would be appointed. This hope was never fulfilled.
Fine Gael TD Joe McHugh said that the HSE’s emphasis on enhancing future services for type 2 diabetes care in Letterkenny has pushed type 1 care into the shadows. He proposed a meeting with Minister Reilly who, he said, is on the parents’ side.
“It’s disgraceful that we are here,” he said. “There is something wrong with this process. At a political level, one thing is being said. At management level, another thing is being said.”
Diabetes Parents Support Group members shared their experiences of having children with diabetes.
Mother of three Karen McGee spoke of how her world was turned upside-down when her eldest child was diagnosed with diabetes. She recalled waiting for her daughter to be seen in the hospital and leaving for a moment to use the bathroom. When Karen returned, her daughter’s condition had become so severe that she had been rushed off to ICU to have her heart monitored and to ensure that no severe damage was done to her organs.
Karen’s second child was diagnosed with diabetes one year later. She said that teachers, bus drivers, and others who work with her children all go out of their way to monitor and support them.
“They have a duty of care to look after the child in front of them,” she said, “the most important duty of care we need is from our hospital, and we’re not getting it.”
Mrs. McGee paid tribute to the strength of the 144 children in Donegal with type 1 diabetes. “They deserve the best chance at life,” she said, “what we want is fair and equal care.”
Diabetes Parents Support Group member Paul Gillespie spoke of the severity of type 1 diabetes. “This is a chronic condition,” he said, “every report says that type 1 needs proper care, and we’re just not getting it.”
Mr Gillespie said that he is unhappy to have to attend further meetings with hospital management in the coming weeks. “We need good news, we need urgent action,” he said.
Independent Cllr Frank McBrearty spoke about his personal experiences living with diabetes. “Diabetes takes me on every day,” he said.
Cllr McBrearty said that people with diabetes in Donegal should not have to share a diluted service of care. “We’re entitled to the same rights as people in Dublin,” he said.
Sinn Fein TD Pádraig Mac Lochlainn called for a delegation of political representatives and Donegal-based Diabetes Ireland members to meet with the management of LGH this week.
“Something has gone very badly wrong here,” he said, referring to the lack of a Paediatric Centre of Excellence in Ireland located anywhere north of Dublin.
Sinn Fein TD and party Finance spokesperson Pearse Doherty said that he was shocked that the parent’s repeated requests for a dedicated Paediatric CNS has not been met. “It’s absolutely appalling that, for at least four years, this issue hasn’t been resolved.”
The parent’s unfulfilled request that one CNS would exist for every 100 children with Type 1 diabetes was nonsensical, Minister Doherty said. “It is not only life-saving, but it saves money for the state eventually,” he said.
10% of the HSE’s healthcare budget is spent on treating complications arising from diabetes.
Deputies Pearse Doherty and Pádraig Mac Lochlainn have tabled a motion of interest to have the topic debated at Dáil Eireann today. They called for all elected Donegal deputies to support this motion.
The parents welcomed the strong cross-party support for their cause. “We want this to be a Donegal issue and not a party support issue,” they said.
by Rachel McLaughlin
Tags: