- All patients have a Paediatric Oncology Outreach Nurse Specialist (POONS) Key Worker who is contactable via their centre – please contact them with any queries.
- They are always offered the choice of care at home, in their centre, or at a Children’s Hospice or a combination of all three.
- The specialist centre will take the lead, and stay involved, during palliative care as appropriate, regardless of the child or young person’s whereabouts.
- The details of the home care package vary regionally – the child or young person’s centre will always contact the GP and multi-disciplinary team (MDT) of a palliative care patient. If you have any queries please contact the POONS
- Children and young people with a terminal prognosis may have an extended period of latency when the disease is inactive, occasionally this may last for a few years.
- They should not receive any vaccines, with the exception of the (inactivated) flu vaccine.
- Children and young people require (and tolerate) far higher doses of opiates than adults. Contact the specialist centre for symptom management and medicines advice.
- As far as is possible the children’s cancer community has an open communication policy with all the children and young people. If they ask about death you should respond to their questions appropriately and honestly. If you hide information they may be more scared by what might be in their imagination about death.
- Whilst they are well we encourage a “normal” as possible life, discipline, school attendance, etc.