Children’s Palliative Care Services

2018 is an exciting year as we extend our services to children and young people

What is Children’s Palliative Care?

Children’s palliative care 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 the enhancement of quality of life for the child or young person and support for the family.

It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.

What is the difference between children’s and adult’s palliative care?

Children experience a variety of rare conditions specific to childhood. It is acknowledged that the child may survive to early adulthood. Children are also growing and developing as they go through illness. Therefore, all specialised medical care, including palliative care, must be tailored to meet the changing needs of infants, children and young people.

Palliative care can be helpful to all patients with a serious illness and at any stage of their disease. The timeframe differs for children, as it may vary from a few days to a number of years. It also embraces the whole family who may be vulnerable at this time.

Provision of education and play when a child is seriously ill is essential. This introduces an additional dimension, which adds to the complexity of care provision.

The story so far

In 2016, in consultation with our Board of Trustees, we made the decision to extend our services to offer specialist palliative care services to children, young people and their families. The expansion to our services will mean that we will be able to care for anyone in Jersey with a life shortening condition, irrespective of diagnosis or age.

We started our journey this year within our Emotional Support team, appointing a Trainee Counsellor with extensive experience working with children and young people. The new service will provide a range of emotional support to children, young people and their families, from diagnosis, through treatment and beyond.

We have also appointed a Paediatric Doctor with a specialist interest in paediatric palliative care. Dr Natalie Kemp is developing our strategy for Children’s Palliative Care, working closing with the Wessex Deanery, under the leadership of Dr Michelle Koh, Special Paediatric Palliative Care Consultant. Dr Kemp is undertaking further studies in Paediatric Palliative Medicine, providing Jersey with its first specialist in this area.

Next steps

We want to start making a difference to children, young people and their families as early as possible. Children and young people don’t always need to be in a hospice to receive palliative care. They can receive palliative care wherever they receive care; in the hospital, during clinic visits, or at home and at any time during a serious illness.

With this in mind, we will be introducing an out-reach service and day hospice provision for children, young people and their families.

We will also be appointing a Project Delivery team, who will be responsible for the design and construction of a specialist purpose-built facility for children and young people, with family accommodation, at Jersey Hospice Care. We will launch our fundraising campaign once further elements of the build facility are agreed.

We are committed to improving the experience of every child and young person with a life shortening or life threatening condition and that of their families. Throughout our journey, we will continue to work closely with other agencies and healthcare providers in this field.

The numbers

There are currently 44 children in Jersey living with a life threatening or life shortening condition

Five new paediatric cancer diagnoses per year

Between 2012 and 2016 :

  • 24 children aged between 0 and 16 died in Jersey
  • 19 young people aged between 16 and 24 died in Jersey

Our philosophy

  • Promoting the best possible quality of life and care, for every infant, child or young person, with a life shortening or life threatening condition and their family.
  • Giving families real choice is key to this approach, with a choice of
    • place of care
    • place of death
    • emotional and bereavement support.
  • Putting the child, young person and family at the centre of decision making will enable them to have the best quality of life and death possible.

 (Adapted from Together for Short Lives)