From left, Sen. Padraig MacLochlainn; Michelle O'Neill, MLA; Gina Grant; Gerry Adams, TD; and Ashling Nibbs.
This week in his blog, Sinn Féin President Gerry Adams, TD, wrote about the work and bravery of the Donegal mothers of Our Children's Voice, the advocacy group campaigning for services for children with life-limiting conditions or high medical/physical needs.
In his Leargas blog, Deputy Adams wrote that in June, at his request, Ashling Nibbs and Gina Grant of Our Children’s Voice came to Stormont to meet him and Michelle O’Neill, MLA. The Donegal mothers were accompanied by Sen. Pádraig MacLochlainn.
Deputy Adams wrote:
“Michelle and I had agreed to meet them to explore how an all-Ireland/cross-border solution could be put in place to ease the distressing trauma faced by desperately ill children in Donegal who urgently need palliative care and treatment for life-limiting conditions. They and their families must travel approximately 140 miles to access treatment and care.
“Ashling and Gina explained to us how they have been campaigning for over three years for the level of care that their children need and deserve. Their very personal and harrowing accounts of the distress they and their children have had to endure was upsetting."
He said Ashling had told them of the ordeal experienced by her son Órán, who had mitochondrial disease. Órán faced eight-hour round trips to access medical treatment in Dublin.
“Imagine how much these gruelling journeys must have drained Órán of the energy he so badly needed in his fight for life,” Deputy Adams wrote.
Órán Nibbs died in January of this year at age 7. Since 2014, when Our Children’s Voice was established, four Donegal children whose parents are part of Our Children's Voice have died.
“The parents expressed their anger at the lack of facilities closer to their homes and the physical and emotional strain that the long journey create for them and their children,” Deputy Adams wrote in his blog. “Michelle and I heard of the indignity one family endured. They had to transport their child's body for over four hours home and then a further ferry trip to the islands.”
He wrote that the only respite services currently available to children are accessed through referral to the Dublin-based Laura Lynn Children’s Hospice. “Families may be offered fifteen nights per year, in blocks of two or three-night stays. In many cases, the travel outweighs the benefit of respite for children and families. So they go without.
“The absence of such services closer to Donegal is an injustice. It is unacceptable that extremely sick children must undertake such lengthy and tiring trips to access vital care and treatment. Children's palliative and end-of-life care should not be determined by geography. Not in a modern wealthy society. Not anywhere.
“The reality is that the parents of ‘Our Children’s Voice’ shouldn’t have to protest, lobby or fight to secure the right of their children to have proper access to the required standard of care. But they have to. They have to become activists and campaigners because they have been failed by the state. They have been punished by the marginalising policies implemented by successive governments.
“A central objective of Our Children's Voice campaign is for children in Donegal to have access to necessary respite/palliative /hospice care closer to home. That includes the possibility of services within the North as an alternative to having to travel to Dublin. There is obvious potential for an all-island approach to this problem.
“When Michelle O’Neill was Minister for Health in the North, she launched a ten-year strategy for children’s palliative and end-of-life care (2016-2026). This strategy provides for extending paediatric networks outside of the North to explore access to specialised services on an all-island basis.
“Sinn Féin has consistently advocated for health care to be developed on an all-island basis. In fairness other parties have acted on this imperative as well, including the DUP's Edwin Poots. They recognise the mutual benefits of such a policy. The provision of cancer services at Altnagelvin Hospital in Derry for the whole of the north west of the island is a model that works. It makes sense. There are health care benefits for all. And ultimately and potentially for the children represented by ‘Our Children’ Voice.’
“The courage and bravery of Ashling and Gina and the other parents is amazing. Their tenacity in the face of governmental failure to provide a necessary service is astonishing and uplifting. I believe all public representatives can and should support them. Since our meeting in June we have engaged with the Irish government, the HSE, and even in the absence of Northern Assembly, with the departments and bodies in the North. There is an urgent need to put in place a system of care that is compassionate and effective and meets the needs of terminally ill children and their families. A severely ill child should not be forced to travel such distances to receive the care they need.
“Not if we are really serious about cherishing all our children. Equally,” Deputy Adams wrote.