We care for any child under the age of 18 living in Bedfordshire, Hertfordshire and Milton Keynes who has a life-limiting condition.
Life-limiting conditions are those for which there is no reasonable hope of cure and from which children will die. They can be divided into four groups:
- 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. Children in long term remission or following successful curative treatment are not included. (E.g. cancer, irreversible organ failures of heart, liver, kidney.)
- Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. (E.g. cystic fibrosis.)
- Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years (E.g. Batten’s disease, mucopolysaccharidosis, muscular dystrophy.)
- Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood or premature death. (E.g. severe cerebral palsy, multiple disabilities such as following brain or spinal cord injuries.)
(ACT/RCPCH, 2003)
Over 18s
Support won't be automatically withdrawn when a child reaches 18 years. After the child's 16th birthday the care team will support the family in looking for appropriate alternative services. This is done in conjunction with the transitions coordinators in Beds, Herts and Milton Keynes.
Referrals for young people over the age of 18 may be considered if their condition is in the terminal phase and if adult hospice care is inappropriate due to their developmental age. However, the final decision rests with the Registration Board.
Outside the area
Referrals may be considered for in-house hospice support only and do rely on funding from the family's Primary Care Trust.
