Coordinated approach improves palliative care for people with disability

The Ipswich Hospice Persons Living with Disability (IPLD) Pilot Program has shown the importance of coordinated and individualised care for people living with disability who face barriers to accessing palliative care.

Funded by the PHN, the pilot program was delivered in partnership between Ipswich Hospice Care, Ipswich Nurses and West Moreton Health’s palliative care service. The program trialled a new coordination-focused model of care, facilitated by a nurse practitioner who addresses immediate needs and coordinates meetings with the person’s GP, family and support providers.

“Navigation through complex landscapes of regulations, funding models and restrictions, community and government health provider systems involving many different professional streams of service providers can negatively impact on outcomes for people living with disability,” said Ipswich Hospice CEO, Rene Adams.

The program supported 27 participants and had wide-ranging positive impacts:

• Carers and care workers felt relieved by the additional support.
• Families felt assured that the right expertise was in place.
• GPs appreciated being kept in the loop.
• Upon arrival, only five of the 27 participants had an AHD in place. The program supported the creation of 16 AHDs – the remainder were not possible due to late referral.

“More research is required to further build on the findings of this study, in order to provide large scale empirical data of the experiences and outcomes for people with life limiting disabilities approaching end-of-life to inform Australian policy and strategy decision makers,” said Ms Adams.

For the families of people living with disability in palliative care, the relief of a professional coordinating all the required stakeholders was immense.

“I can’t begin to explain just the huge level of reassurance I experienced when the team took a lot of stress and anxiety away from me,” said one family member.

The PHN continues to undertake further analysis and identify ways to improve the experiences and support for people with disability who are accessing palliative care across region.

More information on palliative care support and referrals can be found here.