Educational accomplishment should not be considered the only primary purpose of school or college attendance for a young person with palliative care needs. When it is viewed in this way, there is a risk of isolating the young person and their family from a support system that can often offer what health and social care services cannot.
A number of key issues were discussed in the workshop. These included:
- The importance of maintaining school or college attendance
- Working with young people, families and education services to facilitate access
- Helping the school or college to develop the skills and knowledge to support the young person with palliative care needs, as well as their family (including siblings) and other students
- Facilitating continued inclusion and involvement in the school or college community during periods of absence
- Supporting the school or college to prepare for a death and to support the family, students and staff after a death
The presenters showed how as a result of the development of their programme at Great Ormond Street Hospital in London for supporting schools and colleges, young people receiving palliative care were able to continue to access the social and emotional support of their peers and the adult professionals who work with them.
In a ten minute group discussion, delegates were asked to discuss in groups a case where a 16 year old boy with leukaemia with 2 months left to live had posted his prognosis on Facebook. Each group looked at this scenario from a different perspective i.e. that of the family, the school, the health professionals and the teachers. Feedback was interesting with the general consensus focusing on the critical importance of open and honest communication from all sides.
Supporting a life limited child to maintain school or college attendance where possible provides them with a sense of value, purpose and belonging, with opportunities for personal growth and development. Staff at a school or college is also often far better able to provide the necessary support for the sibling of a patient due to their ongoing presence in the young person’s life for several years.
Ultimately, the failure of health professionals to recognise schools and colleges as key partners in palliative care provision should be viewed as a critical omission and it was recognised that the healthcare providers can play a significant role in facilitating this partnership.
You can find the full workshop abstract on page in the EAPC Scientific Programme, which is available for download from www.eapc2013.org