Background Evidence demonstrates that professionals working with people with learning disabilities, report inadequate knowledge of good end of life care (Bekkema et al., 2014; Wiese et al., 2013; Ryan et al., 2011). Specifically, advance discussion about death and individuals’ preferences (Tuffrey-Wijne et al., 2013; Wagemans et al., 2013), breaking significant news (Wagemans et al., 2013) and communicating directly with the person with learning disabilities to make end of life decisions (Ryan et al., 2011) rather than deferring to professionals or carers (MacHale et al., 2009) present challenges for staff. Furthermore, staff highlight difficulties in supporting people with learning disabilities and their families through the end of life process (Todd, 2013) and supporting those around them after the person with learning disabilities has died.
Aim To enhance palliative care knowledge and skills for staff working with people with learning disabilities.
Method A six organisation collaborative completed a funded pilot Palliative Care Education Programme for two supported living homes for adults with learning disabilities. The programme was delivered by two hospice educators with support from Learning Disability community nurses and respective Palliative Care CNSs for the two and a half day face-to-face programme. The focus was to equip staff to deliver end of life care based on the hospice model to service users in their home setting. The programme was completed over three months following a pre-audit and preparation period. The ABC 4 LD programme comprised of six modules from the original EOE ABC education programme and was adapted to incorporate a half day managing complex grief and staff resilience.
Conclusions The outcomes of the training have been positive with 46 staff completing the training which has highlighted the gap of knowledge in terms of palliative care and meeting the needs of those adults with learning disabilities. The intention is to roll out a wider programme of training across Hertfordshire to replicate the learning and increase awareness for both palliative care and learning disability services.
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