While it is estimated that there is a need for close to 500 beds for children requiring palliative care, a specialist hospice will open in Stockholm at the end of 2010 offering just 8. These 8 places are expected to meet the needs of approximately 100 dying children in Stockholm and it is hoped that they will relieve the work of the palliative care given in the home.

Ursula Belding, whose own son died of a rare form of blood cancer at the age of 14, is critical of the palliative care given in hospitals. She says that the staff were fantastic while there was hope and that the care was of the highest quality, but once all hope was gone there was a lack of knowledge amongst the staff of how to care for and respond to a dying child. She is now campaigning to make palliative care available to children and would like to see a team of palliative carers in each hospital that step in when the time comes.

• Palliative care is to start when a child is diagnosed with a life-threatening illness.
• Lindrande care is to be give at the same time as other medical treatment of a more acute nature.
• A team including a doctor, a nurse, a psychologist, a social worker and a priest should be available year round, 24 hours a day.
• The care should be available wherever the family are; in the home, the hospital or in a hospice. Palliative care is not to be according to where the child is being care for.
• Each child is to have access to a professional pharmacist, physiologist and psychologist for treatment to reduce pain and other symptoms around the clock throughout the year.
• All staff caring for children should be trained in lindrande care in the final phase of life.