Background People with learning disabilities (PLD) are approximately 2% of the UK population (Tuffrey-Wijne et al., 2016). Improved health and social care means people live longer, resulting in increased need for palliative care services for all. Current research demonstrates multiple inequalities in palliative care for PLD (Heslop et al., 2013; Tuffrey-Wijne & McLaughlin, 2015). As an experienced Clinical Nurse Specialist in palliative care, whilst reflecting on the needs of PLD, I found knowledge gaps in the hospice workforce and complexity about end-of-life care delivery. Working with learning disability health professionals, there was little knowledge of palliative care services and poor understanding of collaborative support and co-ordination at end of life.
Aim To reduce the knowledge gap of hospice and community nursing staff with reference to palliative care for PLD and facilitate co-ordination and collaboration.
Method Delivered an educational day called ‘Bridging the Gap between Learning Disabilities and Palliative Care’ for hospice and community staff working with PLD. Material used was adapted from the East of England ABC programme and national learning disabilities documents (National End of Life Care Programme, 2011). Advertised through a hospice education programme and supported by a learning-disabilities lead nurse.
The Day Covered Definitions of learning disabilities and inequalities. Communication skills, Advance Care Planning and awareness of easy-read documentation. Complex drug management and symptom control at end of life, including epilepsy and enteral feeding. Collaboration and co-ordination with local programmes to engage hospices in becoming learning-disability-friendly organisations (Hertfordshire County Council, 2013).
14 people attended from the community and three different hospices.
Average satisfaction score for the day was 9.5 out of 10.
Confidence levels, from 1 Low to 5 high, were measured against seven objectives, pre- and post- education. Average confidence rose from 3 pre to 4.7 post.
All hospices are keen to become learning-disabilities-friendly organisations.
Conclusion There are clear gaps in knowledge of both learning disability and hospice staff. Education is vital to filling these gaps and hospices are key to facilitating co-ordinated and collaborative care.
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