Palliative Care Steering Group
Roles and Responsibilities
The Scottish Government has made a commitment to deliver cancer services for children and young people as a single and sustainable service across Scotland. National multi-disciplinary team (MDT) working is pivotal to delivering this. Services should be seen to be equitable and delivered across the whole nation.
Responsibilities of the Board Chair
• To ensure that designated specialists work effectively together in teams.
• To support clinical governance/audit.
• Ensure attendance levels of members are monitored.
• Link to the MSN Board by attending meetings or by nominating the Clinical Lead to attend.
• Ensure mechanisms are in place to drive service improvement.
• Ensure that the outcomes of meetings are clearly recorded.
• Agree the core and extended membership and responsibilities of these members.
Any diagnosis of cancer in a child or young person is a Life Threatening Illness (LTI). Fortunately medical advances over the last 50 years now mean that 70% of children and young people are cured. However, this still means that 30% of children and young people in Scotland who are diagnosed with cancer will die of this disease or a second cancer. The requirement for palliative care may therefore be identified at the point of diagnosis or may become apparent as the health of an individual patient deteriorates, or the care requirements and symptom control increases.
Palliative and end of life care are integral aspects of the care delivered by any health or social care professional to those living with and dying from any advanced, progressive or incurable condition. Palliative care is not just about care in the last months, days and hours of a person’s life, but about ensuring quality of life for both the child or young person and their families/carers at every stage of the disease process from diagnosis onwards.
Palliative care focuses on the person, not the disease, and applies a holistic approach to meeting the physical, practical, functional, social, emotional and spiritual needs of the child or young person and their parent or carers facing progressive illness and bereavement.
Furthermore, the child or young person can move in and out of palliative care because of successful medical interventions. This applies very well to the child or young person with cancer where the main intent of treatment is cure but where we have to ensure in every case that treatment of distressing symptoms caused by the cancer or the treatment are managed appropriately.
It is important that palliative care for children and young people with cancer is seen as part of an overall cancer treatment. By joining forces with other subspecialties common needs will be more likely to be met.