September 7, 2026
The Northern Health and Social Care Trust is calling on patients, carers, bereaved relatives and community representatives to help shape the future of palliative and end of life care by joining a new Service User Involvement Network.
The network aims to bring together people with lived experience to help inform and improve services for patients and families. We want to hear from people who have experience of receiving care and support in a community setting or in hospital. Whether their experience has been positive or less positive, their feedback is valuable and will help us understand what we can do better.
The appeal comes as Pauline O’Neill from Ballymena has spoken about her family’s experience of the care her mother received in the Macmillan Unit at Antrim Area Hospital.
Pauline’s story, which she has shared during Palliative Care Week, highlights the vital role palliative care played in supporting her mum and family, showing how compassionate, person-centred care can make a meaningful difference.
Reflecting on this, Pauline said: “Mum found peace, which is what she wanted. As soon as we got into the Macmillan unit, she was very settled, very calm. She was happy to be here.
“It meant everything to know that mum was receiving the level of care she got here.
“There wasn’t any need of mum’s that was unmet, from the nurses, doctors, the healthcare assistants, the domestics who used to come in and talk to mum in the morning; everybody who works here was absolutely amazing, and you couldn’t ask or want for more.”
The Trust hopes that others, like Pauline, will consider sharing their perspectives through the new Involvement Network, helping to ensure other families benefit from the same compassionate, high-quality care.
Encouraging people to get involved, Fiona Gilmour, Macmillan Palliative Care Service Improvement Lead, within the Northern Trust, said: “The insight and experience that members bring is invaluable. By involving patients, families and carers in shaping our work, we can ensure our services and resources are responsive to people’s needs, helping us to continuously improve care and achieve the best possible outcomes for those we support.
“We know that some of the most meaningful improvements come from listening to people with lived experience. Their feedback helps us better understand what is working well, where changes may be needed and how we can continue to provide compassionate, person-centred care for patients and families across the Northern Trust area.”
Sharon Stewart, from Co. Antrim, who takes part in the Involvement Network shares her experience and the difference being involved has made: “I was very nervous going into the first meeting, not knowing what to expect and wondering how welcome I would be or how useful my contribution could be. I shouldn’t have worried about anything because from the first conversation it was clear this team were eager to make each family’s experience with their service as positive as possible. I felt heard and valued not only by how inclusive the meetings were but by the insightful questions they asked and the time they were ready to give to get it right. The time working with the team has been very productive and positive. They heard me and wanted to understand a service user’s point of view.
“I have gained so much from volunteering as a service user. It was such a relief to have the opportunity to voice my experiences and just feel heard. Caring for my husband was my privilege but also the hardest thing I have ever done. I know becoming a service user volunteer has been a positive part of my recovery from the trauma of caring for my loved one as he reached the end of his life. I have also made some amazing new friends.”
Recent projects have included updating information booklets for patients and families, developing online resources for people living with advanced cancer, supporting public events focused on palliative care and grief, and creating resources to help schools support young people affected by serious illness and bereavement.
Anyone interested in becoming part of the network, or who would like to find out more, can contact the Palliative Care Service Improvement Team by emailing: palliativecare.events@northerntrust.hscni.net
Pictured is Pauline O’Neill with her mum, Emer McBride and family