Our Children's Voice

 Padraig MacLochlainn; Michelle O'Neill; Gina Grant; Gerry Adams; Aisling Nibbs

Many, many years I heard Father Alec Reid say 'There is no blessing like the blessing of a healthy child'. When I first heard him say this I was under-impressed. It was such a patently obvious observation. Usually when he made this remark we would be in the company of a new baby or some boisterous youngster. Or youngsters. Full of energy and life and potential. 

Then as I got older and met children with life limiting ailments and disabilities and their parents or carers I came to reflect on the Sagart's remarks.  Fr. Alec was right. There is no blessing like the blessing of a healthy child. Imagine having to cope with the heartbreak of a child with a terminal illness?  Or a child with profound disabilities? 

This is the challenge facing many parents. Terminal illness is perhaps the most difficult and emotional crisis to confront families. It is difficult enough if this is an adult. But it is especially demanding when the person who is ill is a child.

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As an activist and particularly as a public representative I have been honoured to meet many carers over a very long time. I'm sure all public representatives have the same experience whether they are TDs, MPs, MLAs or MEPs. Whether they are unionists or the rest of us. It is particularly moving to meet the parents or grandparents of children who are grievously ill. It is also an absolute imperative that we help to shape society to give them the supports they deserve. That means a rights based society. 

During the Stormont negotiations in June, at my request, Ashling Nibbs and Gina Grant of the Donegal based parent-led campaign group “Our Children’s Voice”, made the long journey to Stormont Castle to meet Michelle O’Neill and me.  The two parents were accompanied by Senator Padraig Mac Lochlainn. This was my second meeting with them. 

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.

The two very brave mothers spoke about how they are forced to bring their very sick children to Dublin to access end of life care, palliative care and respite care.  

Ashling told us about the ordeal experienced by her seven year old son, Órán. Órán suffered from Mitochondrial Disease and faced eight hour round trips for surgeries while seriously unwell. Imagine how much these grueling journeys must have drained Órán of the energy he so badly needed in his fight? Sadly, Órán has since passed away. Since 2014, when the campaign group was established, four children 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. Michelle and I heard of the indignity one family endured. They had to transport their child's body for over 4 hours home and then a further ferry trip to the islands.

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The only respite services currently available to these children are accessed via referral to Laura Lynn Children’s Hospice, based in Dublin. 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 healthcare 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 healthcare 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.