How can we improve end of life care for people with ID?

Aim: Two former studies undertaken in Kent exploring the attitudes and involvement of palliative care services with ID care teams showed limited awareness of each other’s service. Specialist palliative care services were involved in the care of few people with ID and ID teams had limited contact with palliative care. Moreover both had limited understanding of each other’s roles and there was evidence of negative attitudes including ‘patronising sympathy’. Conclusions recommended the development of increased collaboration between services. This study aimed to explore the ’next step’ of how to link both types of service together so as to improve the experience of end-of-life care for people with ID.

Method: Case studies of the establishment of ‘link team’ members were analyzed to explore positive and negative experiences of collaboration. Results: ‘Link team’ members proved helpful for collaboration between specialists in palliative care and ID carers, allowing care to be provided within individuals’ homes.

Conclusion: Extra support and expertise available can be developed as a result of this collaborative approach, improving end of life care for people with ID.