Bereaved parents tell of hospice help

Carol and Robert Lynch were amongst the local families who took part in a recent Lights to Remember Service in The Playhouse, which was followed by a candlelit procession in memory of local children and others cared for by staff of the Hospice.

Robert recently said thanks to NICH by growing a beard and raising a stunning £1,046.70 which will support the Hospice’s work in the Western Trust area.

They explained how Ashleigh had to go to the Royal in Belfast in 2007 to have a feeding tube inserted when she was aged 13.

“We met a Social Worker who came to talk to us. She asked us if we had heard of the Northern Ireland Children’s Hospice and if we had considered using the service.

“She also told us about their Hospice at Home Service. The Social Worker then referred us to the Hospice. We were invited up in March to stay for the weekend. Going up to the Hospice was very scary because we did not know what to expect.

“But from the minute we arrived, we were put at ease and treated with great kindness. Ashleigh was given a nurse to work with her and we stayed in a family room,” they explained.

Carol and Robert were taken aback by what they found at the Hospice

“The Hospice was not what we expected. We thought it was going to be full of sick children, which it was, but the children were happy, having fun and being treated so special. On one occasion there was a television reality show final and the nurses had a pyjama party with all the children,” they continued.

“Even the ones in bed were pushed up to the party. In the Hospice everybody was treated the same - ‘special.’ At home we used the Hospice at Home nurses.

“These girls came into our house to care for Ashleigh. They were like an extended family and provided a much appreciated service.

“This enabled us to do things again with our other family members while we knew Ashleigh was being cared for at home.

“In October 2009 Ashleigh passed away, but the Hospice continues to offer support and friendship to our family and this has helped us through a very difficult time.

“To any parents who are apprehensive about using the service, please don’t be scared. The Children’s Hospice is there to help and will be a lifeline to you and your children,” they added.

NICH provides palliative care for children and young people with life-limiting conditions through flexible and practical support at home and in the hospice, often over many years.

This support includes short breaks and care at home, enabling families to get a rest; help with control of pain and distressing symptoms, and providing support to their entire family including brothers and sisters. At present NICH supports approximately 50 families in the Western Trust area.

Children’s Hospice Nurse Specialist, Louise McLaughlin, explained: “It’s sad but inevitable that some of these children will need our support at the end of their lives.

“The Children’s Hospice can provide end-of-life care and bereavement support for the family. We maintain the relationship that we have made with our families, accompanying them on their child’s life journey and continuing alongside them after their child’s death.

“Although Christmas time is a time for celebrating, it can also be a time for remembering those who are no longer with us. The Lights to Remember service enabled people to take part in a tangible act of remembrance at what can be a very difficult time of the year for many people.”