Tyrone family in anguish over Dublin care suggestion

THE local mother of a 13-year-old boy with complex needs, who was told her son can only be cared for in Dublin or Scotland, believes the health service is failing in its duty of care.

Ciara Gilliland, from Victoria Bridge, this week admitted that she is physically and emotionally drained with the ongoing battle to have her son Ben O’Neill cared for on a local basis.

Currently, Ben, who has Kabuki Syndrome, a rare genetic disorder and who has learning as well as physical disabilities, remains in short-term care in Avalon House in Omagh.

However, according to mum, Ciara, the family has been told this facility cannot accommodate Ben indefinitely and that he could be relocated to a more permanent facility, over 100 miles away.

“Obviously this wouldn’t work, for us, or for Ben,” Ciara explained. “It’s absolutely heartbreaking and I can’t let it happen.

“Ben has a lot of needs. He has Kabuki syndrome, so he has a 45 degree curve in his spine. He is incontinent, non-verbal, and he has lots of behavioural issues.

“But we’re not alone either. There are other families in the same situation. Children have been sent to Scotland before and I just find it unbelievable that there isn’t one unit in the North of Ireland for children like ours. I would even go to Belfast if there was one there, but Dublin is a joke.”

Ultimately, Ciara wants the Health Minister, Robin Swann and the Western Trust to provide a suitable local, long-term facility for Ben and other children like him, where they can live close to their families.

She continued, “Every week I go to see him at Avalon House and there have been loads of meetings with social workers to figure out where to place him long-term. It’s been so tough; I have had breakdowns over this and it’s just so stressful.

“I’m emotionally and physically drained but I have to keep fighting for Ben. If I don’t fight for him, then who will?”

She added, “There is nowhere in Northern Ireland at all for special needs children to live. That’s what we need to change.”

Speaking out on behalf of the family this week, local politicians have remained outraged.

“What’s happening to this family is absolutely shocking,” SDLP councillor, Steven Edwards admitted. “Ben is a young vulnerable child who is in need of care locally. It’s absolutely scandalous that the Trust would even propose to relocate him in the South which is hundreds of miles from his family, his school and his support network. I’ve written to the Western Trust on behalf of his family to object to this, and my colleague, Daniel McCrossan MLA, has raised it in Stormont with the Health Minister. If we can’t look after the most vulnerable in society, then there’s something majorly wrong. I hope the Trust and department come to their senses.”

Similarly, Sinn Féin MP, Órfhlaith Begley added, “It is unacceptable that the current care options being made available would mean that Ben would be wrenched far away from his family, school friends and wider support network.

“I have appealed to Minister Swann and the Western Trust in correspondence to prioritise finding a better solution than what is currently being offered, and ensure that Ben can receive the adequate care and support he needs much closer to home.”

When approached this week for information, both the Trust and the Department of Heath said they could not comment on individual cases.