Paediatric Palliative Care

Our aim is to give children the best quality of life possible, even though their lives may be shortened. We will support them and those who care for them whether the children are in hospital or at home.

It is often difficult to know how long or short a young person’s life may be. But our service recognises this uncertainty and works alongside families to provide the best care possible.

This care may be required from the point of diagnosis or recognition that a baby's, child's or young person's life may be shortened .

Many professionals work together to provide our palliative care service and this includes colleagues from education and social services as well as hospice care. We take a holistic approach, which means we aim to cater for all needs, not just physical.  We support and improve emotional, social and spiritual services for families.

We also provide bereavement care.

Our team

Our team works alongside colleagues from across the health board.

Our work includes supporting young people with palliative care needs through transition into adult palliative care services.

Who we are

• Dr Jo Griffiths - Consultant and Medical Lead
• Sharon Jones - Clinical Nurse Specialist

The team works closely with the All Wales Paediatric Palliative Care Managed Clinical Network. Out of hours advice for professionals supporting patients of the team is available through the Network (Via UHW switchboard).

We aim to

• foster physical, emotional, social and spiritual well-being for children, young people and their families
• liaise with all professionals involved in the child’s and young person’s care to ensure continuity of care
• support symptom control through outpatients clinics and home visits,
• provide direct care in relation to controlling symptoms
• assist young people and their families in transition from children’s to adult palliative care services
• establish advanced care plans with children, young people and their family to record their wishes for end of life care
• promote bereavement care for parents, siblings and other family members at appropriate time for the individuals
• inform and support professionals from all agencies to understand the differences between palliative care for children, young people and adults

Who can be referred to us?

Any infants, children or young people who have a diagnosis of a life-limiting illness or suspected life-shortening symptoms up to the age of 19.

This includes unborn infants and neonates with anticipated short lives or difficult symptoms.

Young people can be supported by the Clinical Nurse Specialist through a transitional period into adult palliative care services until the age of 25.

The following four groups described by Together for Short Lives (formerly known as ACT) are some examples of the types of illnesses that children and young people may have who can be referred to the team:

• Group 1 - Life-threatening condition for which curative treatment may be feasible but can fail. Where access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services. Examples: cancer, irreversible organ failures of heart, liver kidney.
• Group 2 - Conditions when premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. Examples: Duchene Muscular Dystrophy, Cystic Fibrosis.
• Group 3 - Progressive conditions without curative treatment options where treatment is exclusively palliative and may commonly extend over many years. Example: Batten Disease, Mucopolysaccharidoses.
• Group 4 - Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death.  Example: severe Cerebral Palsy, multiple disabilities such as following brain or spinal cord injury, complex health care needs and a high risk of an unpredictable life-threatening event or episode.  

Useful links

These organisations provide support for seriously ill children, families with disabled children and those experiencing bereavement:

Go to the website of Together for Short Lives (formerly Association for Children's Palliative Care)

Together for Short Lives Helpline: 0808 8088 100

Contact a Family Cymru Helpline: 0808 808 3555