Palliative Care Services supporting people with intellectual disabilities

It is National Palliative Care Week and South Eastern Sydney Local Health District (SESLHD) is leading the way in establishing a palliative care service dedicated to supporting people with intellectual disabilities.

Individuals with intellectual disabilities face significantly higher rates of premature death and life-limiting conditions compared to the general population. Key barriers to accessing equitable health services include a lack of accessible communication resources, staff time constraints, and inadvertent discrimination in adequately assessing healthcare needs.

SESLHD is addressing these challenges via the SESLHD Intellectual Disability Palliative Care Service. Established by Dr. Linda Sheahan, SESLHD Clinical Stream Director for Palliative and End of Life Care, the initiative is led by Maria Heaton, the SESLHD Intellectual Disability Palliative Care Lead Clinical Nurse Consultant (SESLHD ID PC CNC) and Dr Rebecca Strutt, Head of Department Palliative Care, Prince of Wales Hospital.

Together, they have developed the SESLHD Intellectual Disability Palliative Care Model of Care. This model utilises a multidisciplinary approach, embedding the SESLHD ID PC CNC within Palliative Care Community Supportive Care Services across the district. This approach provides direct support for patients with intellectual disabilities while simultaneously strengthening the capacity of palliative care services across the district. Supported by international research, the model effectively addresses the diverse physical, psychological, social, and spiritual needs of individuals with intellectual disabilities.

As a part of this important work, Maria recently presented two workshops for disability provider managers, aimed at boosting confidence in delivering palliative care and supporting their staff in disability homes. The workshops were partnered with disability providers CIVIC and Quality Health Care.

Kate Smyth, Acting Area Manager at Quality Health Care, praised the training: “Capacity building is key in creating change across health and disability services. After the workshops, managers reported increased knowledge, confidence, and a strong sense of support from SESLHD. Attendees left inspired and empowered to support their teams and drive meaningful change.”