A Parent’s Perspective
“Being with Everol was a master class in how to live ” Gary, Lives Worth Living.
Aims of the Session:
Our aim is to support people working with families and children with a life limiting condition by giving them an opportunity to enter our world and journey with us and our children from the day of diagnosis through quality of living, end of life and beyond, using examples from the book Lives Worth Living and our own experiences. You can download the leaflet here.
What to expect:
- Examples from the families’ stories.
- Presentation and exploration of key concerns.
- Opportunities for interactive contributions and group work.
Areas covered:
- Diagnosis-the day life changes and how this affects all concerned.
- Home coming:
- Adapting to the ‘new now’ by the family, friends and siblings, including those with the same condition and those without a condition.
- Involvement of services and professional support teams.
- Hospital experiences.
- Transition from child to adult services.
- Quality of living and dying : palliative care/hospices.
- End of Life.
- Supporting Bereaved Families.
This workshop will be of interest and value to practising or training professionals with an interest in, or already working with profoundly disabled/life limited children.