Palliative Care

What is palliative care?

Palliative care is the active and total care for a child or young person at a time when their illness or disease is no longer responding to treatment that might result in a cure. Children can have a shortened life expectancy, and many of these children receive care and support from the Palliative Care team to help manage their symptoms to live life.

The Palliative Care team based at RHCYP in Edinburgh is a specialist service that looks after babies, children and young people and their families who are facing difficult decisions. Paediatric (children’s) palliative care is different to adult palliative care. The team can be involved with families in lots of different circumstances and in every case our aim is find a way through.

The Palliative Care team will support families when:

• children and young people are very sick and there is uncertainty about their survival.
• children have a shortened life expectancy and are becoming more unstable, to help prioritise what is important to them and their family.
• death is expected in the coming days, weeks or months, to help make end-of-life care as meaningful and as family-centred as possible.

We understand that these can be very difficult circumstances for a family to think about. The palliative care team can bring a number of organisations and specialists together to work for the benefit of children and young people and their families.

Palliative care aims to:

1. Offer specialist symptom management.
2. Support decision-making (also known as anticipatory care planning or parallel planning).
3. Guide end-of-life care planning and bereavement support.

Each child’s needs are different and the palliative care team understands that those needs can change with time and the nature of a child or young person’s illness. The care offered to children and their families is tailored to each individual set of circumstances, taking into consideration a child’s wishes and those of their family. Children can become stable and no longer need the help of the palliative care and are discharged from our team.

Meet the Team

Dr Jill - Consultant in Palliative Medicine I work closely with Katrina and Ruth, our specialist nurses. My role in the team is planning and reviewing the palliative medical needs of children and young people who are unwell. Although very difficult to think about, an important part of my role is to work with children and young people and their families to make difficult decisions where they can, as well as planning end-of-life care. Katrina and Ruth – Specialist Nurses We work closely with Dr Jill and the specialist teams looking after children. Our role is to provide advice and support for children and families. Like Dr Jill, we work alongside children and young people and their families in the planning and reviewing of care and providing support in making difficult decisions around end of life care. Our team’s ultimate goal is to support children and young people to have a good quality of life for as long as possible while always listening to what is important to them. If asked to define the difference the palliative care team can make in a sentence, we believe that we are here to support children and young people to ‘live well, and if death is inevitable, to die peacefully and with dignity’. Nicola Robertson – Service Coordinator I am the service coordinator and I work alongside the team, covering a variety of administrative work for the department. When calling the department, it is likely that I will be your first point of contact.

How to get in touch

Families already in contact with Palliative Care can reach the team on 0131 3120604. For families that would find it helpful to speak with the Palliative Care team for the first time, please talk to your child’s doctor or nurse who can contact us on your behalf and start to bring the right people together.