This site is to bring awareness to paediatric palliative care at home.

We hope the site will encourage other parents facing a paediatric palliative care situation to contact us either for support, advice or just to talk.

All who face life-threatening illness will need some degree of supportive care in addition to treatment for their condition.

The National Institute for Clinical Excellence (NICE) has defined supportive care for people with cancer. With some modification the definition can be used for people with any life-threatening condition.

Supportive Care Defined

Supportive care helps the patient and their family to cope with their condition and treatment of it – from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.

Supportive care should be fully integrated with diagnosis and treatment. It encompasses:

• Self help and support
• User involvement
• Information giving
• Psychological support
• Symptom control
• Social support
• Rehabilitation
• Complementary therapies
• Spiritual support
• End of life and bereavement care

Palliative Care Defined

Palliative care is part of supportive care. It embraces many elements of supportive care. It has been defined by NICE as follows:

Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.

• Palliative care aims to:
• Affirm life and regard dying as a normal process
• Provide relief from pain and other distressing symptoms
• Integrate the psychological and spiritual aspects of patient care
• Offer a support system to help patients live as actively as possible until death
• Offer a support system to help the family cope during the patient’s illness and in their own bereavement