P08.09.A Improving support for family carers: Creating a cross-sector collaborative working group

Abstract

Abstract Background Family carers of people with brain tumours and other progressive neurological conditions have unique but overlapping support needs. This is because caring can be particularly challenging due to patients’ cognitive issues, behavioural changes, and neuropsychiatric symptoms. We undertook stakeholder engagement work to bring together family carers, academics, service providers and policy makers to form a working group and highlight opportunities for improvement of family carer (FC) support. Material and Methods Sixteen stakeholders (academics, carers, charity representatives, clinicians and policy makers) participated in two one-hour online workshops (N=8 in each). Workshops started with introductions, an outline of meeting objectives, and a specially created animated video introducing the topic. A structured discussion followed, focusing on current FC support and barriers in accessing support. Finally, we covered blue-sky thinking exercises, with attendees describing their ideal vision of FC support in the future; and how the group can work together to improve support. Workshop findings were integrated into a position statement. Results The position statement covers five pillars for joint action. 1) Collaboration, coordination, and co-design - current support is fragmented. Better collaboration is needed between the social care sector, the third sector, and healthcare systems, to stop struggling FCs falling through the net. 2) Valuing carers - there is a need to acknowledge and enhance the awareness of FC contributions, e.g. through co-producing research publications highlighting the value FCs bring. 3) Redefine personalised medicine- carer support needs are varied and no one size fits all. Personalised care is key to identify specific needs of carers arising from aspects of diversity, such as ethnicity and age. 4) Flexible evidence-based support- we need to build a better evidence-base for FC support; and prioritise evidence-based support. This is especially important given the scarcity of funds and resources for FCs. 5) Promotion of current support services- many FCs do not know where to get support locally. More research can help to identify barriers and facilitators to support carers’ access to formal support. Conclusion: To improve support for FCs, we need to move away from fragmented approaches and move towards a more collaborative approach with carers at the centre. Our collective vision is that future support is based on what matters to them as individuals and what is effective in meeting their needs. We strive to provide flexible, accessible, responsive and inclusive support for FCs, and invite other carers, service providers, academics and policymakers to join our effort.