Children’s specialist palliative care

Palliative care for children and young people with life-limiting conditions is…

“…an active and total approach to care, from the point of diagnosis or recognition throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on enhancement of quality of life for the child/young person and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.”

The team provides:

• Nursing care and short breaks in the child’s own home or community setting for children or young people with a progressive life limiting condition that is not expected to live into adulthood, or a child or young person who is palliative and likely to die within a year.
• Symptom control care for those children requiring end of life care.
• Specialist and supportive care during end of life care.
• End of life care planning.

We work closely with other members of the team and other agencies such as children’s services, Lincolnshire Safeguarding Children Board and Continuing Health Care.

The aim of the service is to provide high quality short break care/palliative care to children whilst enhancing the quality of life for the whole family.

The service is intended primarily for those children needing end of life care and/or with recognised palliative care needs. Priority is always given to children requiring end of life care at home when additional support is given in accordance with family wishes. The referral form and criteria for the service will be provided for completion to professionals considering making a referral.

Each child is assessed against the criteria and according to their individual care needs, medical status and depending on other services already being accessed.

The palliative care specialist nurse will visit the family once a referral has been received to assess the child’s needs. From the information obtained, along with additional information from the child’s parents/carers, medical/nursing records, the child’s eligibility for the service will be determined and the time to be allocated will be discussed and negotiated with the family. The time allocated can be used flexibly within existing resources and service demands to meet the child and family’s needs and wishes.

Staff are matched to work with individual children and receive training in moving and handling, basic life support, first aid and any other areas that are identified as necessary to meet the individual child’s care needs.

The children’s specialist palliative care nurse facilitates individualised competency based training and assesses the care team until they are familiar with each child’s needs and their specific nursing needs. Examples include:

• Naso-gastric feeding
• Gastrostomy care
• Ventilator care
• Seizure management
• Airway management including tracheostomy care

The service can be delivered once the following has taken place:

• Carers are familiar with the child and family
• Carers are competent to deliver all the agreed aspects of the individual child’s care
• The child’s parents feel happy for their child to be left in their care

All carers are experienced in child care and will always consider every child’s special communication needs and their ability to enjoy pleasurable activities and so in addition to providing clinical care will explore appropriate activities such as sensory and play. In good weather and if feasible children can be taken out for walks.