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Palliative Care for Children
Palliative care for children and young people is an active and total approach to care, embracing physical, emotional, social and spiritual elements.
It focuses on enhancements of quality of life for the child, and support for the family. This includes the management of distressing symptoms and provision of respite care through death and bereavement.
Palliative care also includes elements such as schooling and days out, facilitating happy memories and enabling children and young people to enjoy stimulating, rewarding experiences. Teams look to provide support throughout the difficult times, while stepping back during periods of stability. Palliative care is complex and multifaceted, requiring coordination between key workers from a broad range of specialities.
Caring for a child with a life limiting condition can be challenging, often with complex health needs. Palliative care support includes working with teams and families, helping with decision making and symptom management. In many cases, patients, families and professionals work together to produce an Advance Care Plan (ACP) or to support discussions around symptom control, resuscitation and other individual needs to create a personalised plan.
Specialist palliative and end of life care services for Children and Young People in West Yorkshire
Caring for a child with a life threatening and life limiting health condition can be challenging at any time of day. But when a crisis occurs in the middle of the night, it can be terrifying.
The national 'Ambitions for Palliative and End of Life Care: A national framework for local action', state that: “Every person at the end of life should have access to 24/7 services as needed as a matter of course. The distress of uncontrolled pain and symptoms cannot wait for ‘opening hours’. This is a necessary system wide expectation and good end of life care cannot be achieved without it.”
In West Yorkshire, 24/7 Palliative End of Life Care (PEoLC) is available through a specialist nursing and medical advice line offer. The service is independently run by Martin House and Forget Me Not Children’s Hospice but currently only serves those supported by these hospices.
To understand the degree of unmet need in families that are not receiving hospice care, and make provision for it, the West Yorkshire Health and Care Partnership is working with the hospices to deliver a six month pilot of an out of hours advice line for families and professionals caring for a child with a life threatening and life limiting health condition.
Manned by specialist paediatric palliative care nurses and doctors based at Forget Me Not Children’s Hospice and Martin House, the advice line is available from 6pm to 8am weeknights and all weekend so families always have someone they can call on for advice, reassurance or signposting to appropriate services.
CYP Palliative and End of Life Care Poster
CYP Palliative and End of Life Care Flyer
We hope this increases patient choice about where they can access care and reduce avoidable hospital admissions.
The above information has been provided by Martin House Children's Hospice and Forget Me Not Children's Hospice to promote the Children's Palliative Care Support and Advice Line.
Further Resources
Together for Short Lives is the UK’s leading charity for Children’s Palliative Care. They seek to make sure that children with life limiting and life threatening conditions and their families can make the most of every moment they have together, whether that’s for years, months or only hours. Through their family support team and helpline, they provide families of seriously ill children with emotional, financial and practical support and advice. They champion and support palliative care professionals with training and resources, and work to influence policy making and government to secure more investment in children’s palliative care.
Child Bereavement UK helps families to rebuild their lives when a child grieves or when a child dies. We support children and young people (up to the age of 25) when someone important to them has died or is not expected to live, and parents and the wider family when a baby or child of any age dies or is dying. We provide training to professionals in health and social care, education, the emergency services and the voluntary and corporate sectors, equipping them to provide the best possible care to bereaved families.
Hospices
Forget Me Not Childrens Hospice Telephone: 01484 411 040 Email: contact
Martin House Telephone: 01937 845045 Care email: care