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Care for terminally ill children in Jersey could be set to improve following new plans unveiled by Family Nursing & Home Care (FNHC) and Health and Social Services.
Called a 'palliative care pathway', FNHC hopes it will enable service providers to coordinate fully and to improve the experience of patients and their families.
Children's palliative care is the name given to every element of care administered to children with life-limiting or life-threatening diseases, with a focus to improve their, and their families', quality of life.
Each child diagnosed with a life-limiting or life-threatening condition will be assigned a key-worker to be a consistent point of contact. This key-worker, alongside nursing staff, will assess the needs of the child and family, co-ordinate services and provide information as well as emotional and practical support.
The ultimate goal is for the child and their whole family to receive the help and support they need by compiling an agreed single plan.
Commenting on the new pathway, FNHC’s Community Children’s Nurse, Polly Axford, said: "During two years of study, I gained huge insight and knowledge into the philosophies that surround children’s palliative care. These skills have enabled me to develop specific assessment tools and care plans, which inform and guide the professional team surrounding the child and family, and offer a tailored and individual support package. To help develop this service and make it unique to the needs of Jersey, I found it beneficial to identify previous gaps within service provision, as this provided focus with how best to positively move forward."
Nedzhibe Metushev, mother of Hari who sadly passed away, aged just nine years old, said: "We were pleased to be able to share Hari’s journey with the team so as to help shape the future of care delivery in Jersey. We wish that the Children’s Palliative Care Pathway had been in place when we were caring for Hari and we hope that it will make a terrible experience a little bit easier for families facing similar situations in the future."
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