Very Special Kids provides care and support for children or young people with a life-limiting condition, who are not expected to live into adulthood as a result of their medical condition.
As a child, young person and family centred service, our care and support extends to a child/young person’s whole family, with specific programs designed to support parents, carers, siblings, grandparents, and more. Children and young people most likely to be accepted to our service include those with:
Life-threatening conditions for which curative treatment may be feasible, but can fail. Where access to palliative care services may be necessary when treatment fails e.g. cancer (usually solid tumours), irreversible organ failures of heart, liver and kidneys.
Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in other activities.
Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years.
Irreversible, but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death.
Children or young people being referred under this category should fulfil most of the following
- Total body involvement with poor head control
- Severe scoliosis that compromises respiratory function
- Ongoing need for intervention in order to maintain respiration
- Regular apnoeic episodes
- Poorly controlled seizures despite optimum treatment
- Frequent unplanned hospital admissions
- Underlying complex nutritional condition which, without accurate assessment, would be life-threatening.
Reference: Together For Short Lives: A Core Care Pathway for Children with Life-limiting and Life-threatening conditions; 3rd Edition
As part of our ongoing service delivery process each child/young person is medically reviewed and assessed every two years against the above criteria.