Background The project arose from personal experience/reflection resulting from caring for someone with a learning disability [LD] at the hospice. Lack of support and knowledge from the involved services contributed to an outcome in not meeting the person’s wishes to be cared for at ‘home’, which should have been possible.
Reports and enquiries indicate the inequity in health and need for end of life care: health care is not equitable (Confidential Inquiry into Premature Deaths of People with Learning Disabilities, 2013); staff caring for people with LD require development of end of life care knowledge and skills (Palliative Care for People with Learning Disabilities Network, 2017/18; Care Quality Commission, 2016; NHS National End of Life Care Programme, 2011).
Aim The project aimed to improve awareness and knowledge of end of life care needs for people with LD; increase confidence and skills of staff providing end of life care for people with LD.
Methods A partnership group met to make a funding bid; development and delivery of an education project across sectors and professionals, successfully submitted to HEE regionally. Held consensus curriculum development workshops to inform the training programme. Literature review and evaluation commissioned from university (report due September 2018). A two- day training programme with support materials, e.g. resource book. Programme delivered by utilising both specialist LD and end of life care knowledge and practice. 6×two-day courses were delivered between October 2017 and April 2018.
Results The delivery of the project has been beset with personnel issues such as staff sickness and changes in roles which was a challenge for project management. Training day evaluations were positive about the learning, presentation and gaining knowledge for practice. Practitioners provided examples of learning use in practice as feedback illustrating their increased confidence. Collaboration between specialist LD practitioners and the hospice Education Team has been a positive experience.
Conclusions De-brief project meeting recommended further development of advance care planning and skills and confidence in end of life care for people with LD locally. A multi-professional attendance was achieved. Collaborative hospice/LD team working contributed to the overall experience.
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