Parent group Our Children's Voice are trying to break down the barriers preventing their most fragile children receiving care close to home.
Our Children’s Voice, a Donegal-based parent group, visited Stormont Castle last week to explore cross-border options for Donegal families with children who have life-limiting conditions or high medical/physical needs.
The group’s representatives, Gina Grant and Ashling Nibbs, were invited to Belfast on Friday 23rd July to meet with Sinn Féin President Gerry Adams, leader of Sinn Féin in Northern Ireland Michelle O’Neill and Donegal Senator Pádraig Mac Lochlainn.
Gina and Ashling spoke with the leaders to express the need for paediatric palliative and respite care and oncology services for children across Ireland. They sought to explore options for shared services across the border.
Gina told Donegal Daily how Our Children’s Voice aims to get Ireland’s leaders to pay heed to the current plight of parents in Donegal.
“We had been trying over the past three years, through meeting with LUH, the HSE and the HSE forum, but we need the leaders to lead if we can get any change.”
The parents highlighted how Donegal was “geographically orphaned” to the rest of Ireland, which impacts on the care of the most fragile children.
“We’re travelling from three to five hours to Dublin for appointments. In some cases, the children have had to be admitted to hospital because the journeys were too much for them.
“One child had to be resuscitated at the side of the road and rushed to hospital in the North for treatment. I’ve known families who have had to have a two week hospital stay after a journey to Dublin has taken so much out of them.”
Our Children’s Voice has been calling for doctors to hold clinics in Letterkenny to provide neurology, respiratory, genetic, gastro care for children. Now, they are focusing their efforts on shared services with Northern Ireland.
Gina said the group had promising news last December when former Taoiseach Enda Kenny and Health Minister Simon Harris told them the availability of cross-border services should not be a problem, but nothing has happened since.
A series of cross-party meetings at Leinster House in May led the parents to arrange another discussion in Stormont this week.
“We were very pleased to be invited to meet Michelle because she has passion for children’s palliative care. She was very keen on what she could do to benefit children on both sides of the border. She understands the difficulty of bringing children to Dublin,” Gina said.
Our Children’s Voice represents 30 families in Donegal, while no database exists to show how many children have high complex needs or require palliative care.
“We wanted to get best quality of life that our children can have in their local community and with the family that they are reared in.
“We want to be the best parents to all our children, and that can only be accessible through cross border care at this point.”
“One of our families look out from their home to Altnagelvin Hospital. They could be there in 20 minutes but they have to travel five hours to Dublin.
“Some parents have not attended appointments because their child has been having a ‘good week’ and they know if they do this trip their children would have to regress.
“There is a beautiful oncology in Altnagelvin but it is not open to paediatrics. We need to start affording the children with the same services we’re affording the adults,” Gina said.
Our Children’s Voice spoke to Adams, MacLochlainn and O’Neill about the possibility of getting training services in Altnagelvin for nurses in the hope that full respite could be provided in homes in Donegal. They also asked how local families could benefit from clinics in Northern Ireland and what communities could do together for respite care and hospices.
“We need to see if we could break down our barriers and not have to pass Altnagelvin and go to Dublin.
“We need all parties working together and all politicians on both sides of the border to fight for our cause.”
“We also want other parents to get in contact with us. The more we know what’s needed the more we can get,” Gina said.
Parents can contact Our Children’s Voice on Facebook: www.facebook.com/OCVDonegal