New website is ‘go-to’ point for children needing palliative care in Ireland

Parents of children with life-limiting illnesses have spoken out about a lack of awareness of palliative care options for families.

Brian and Sharon Thompson, who suffered the tragic loss of their nine-month-old daughter Victoria, said more needed to be done to support and inform families in need.

“Victoria had an incurable, untreatable rare condition which left her in constant and severe pain,” said Sharon. “Her nerve endings were un-insulated. She also had horrendous symptoms. Our first question was ‘how do you fix it?’ Then we were told — ‘it can’t be fixed’.”

Living in Donegal, they found it difficult to access information and services locally.

In a majority of cases, seriously sick children are cared for at home but Victoria’s condition was so severe she had to be cared for at the LauraLynn Children’s Hospice.

For the Thompsons, the palliative care approach provided at the hospice was a very positive experience.

Sharon said: “Every professional had time to talk to us, to sit with us. We were allowed to be Victoria’s parents. We could relax a little knowing her needs were being met. Children’s palliative care needs strong voices. Parents should be able to give children the best, especially children at the end of life.”

It was through this experience Sharon recognised the lack of information, generally, for families with children in need of palliative care.

She said: “When you google, you don’t know if the information you read is accurate or if it’s right for you. You need to know what you’re reading applies to the Irish system, applies to your child.”

As a result, Sharon helped to set up a new website, developed by the All Ireland Institute of Hospice and Palliative Care (AIIHPC), to assist parents, guardians, carers and the wider public in understanding children’s palliative care.

RTÉ presenter Miriam O’Callaghan launched the website yesterday and commended Sharon and other families for being brave enough to share their stories.

Also speaking at the event were Martin and Siobhán Murphy whose daughter Caoimhe was born with a very rare disease called Joubert’s Syndrome. The couple had been told they would be lucky if their daughter lived for three years. Caoimhe is now 12 and the family have faced enormous emotional challenges.

Siobhán said: “I was approached by the palliative nurse, asking us how would we would feel about receiving a palliative care approach as part of her care, including occasional respite at a hospice.

“For me, a hospice was a place to die. We got a tour of the whole place and it was beautiful and colourful with a place for families to stay. And we now have a different attitude — we have hope. Our heroes are the people there, those who work there as well as the families and children. The palliative approach in Caoimhe’s care is good for everyone.”

AIIHPC director Paddie Blaney said: “The palliative care community, both in the Republic of Ireland and in Northern Ireland, recognised the need for a ‘go to’ point that parents, carers and the general public could access to get independent information on a topic which is difficult to talk about or gather information on.”

The website includes photos, stories and quotes about real children and parents who are or have availed of palliative care services in Northern Ireland or the Republic.

www.cypph.com