Linda JM Oostendorp

Learn More
BACKGROUND Epilepsy is the most common neurological problem that affects people with learning disabilities. The high seizure frequency, resistance to treatments, associated skills deficit and co-morbidities make the management of epilepsy particularly challenging for people with learning disabilities. The Books Beyond Words booklet for epilepsy uses images(More)
BACKGROUND Widespread implementation of patient engagement by organisations and clinical teams is not a reality yet. The aim of this study is to develop a measure of organisational readiness for patient engagement designed to monitor and facilitate a healthcare organisation's willingness and ability to effectively implement patient engagement in healthcare.(More)
BACKGROUND There is a continuing debate on the desirability of informing patients with cancer and thereby involving them in treatment decisions. On the one hand, information uptake may be hampered, and additional stress could be inflicted by involving these patients. On the other hand, even patients with advanced cancer desire information on risks and(More)
The evidence base underpinning paediatric palliative care (PPC) needs to be expanded and be made robust if advances in practice and reduction in suffering are to be achieved. While current guidance 1 emphasises the need to include children and young people (CYP), both those with good health and those with life-limiting conditions (LLCs) or life-threatening(More)
  • 1