Introduction Social welfare (SW) needs, particularly relating to finances, employment and housing, are prevalent towards end of life and can have a profoundly negative impact on patients and carers. A wide range of organisations are involved in supporting these needs but routes to access are ill-defined and variable.
Aims To better understand the lived experience of a system response to SW needs in life-limiting illness and inform discussion with multi-agency stakeholders.
Method We ran two online focus groups with people with lived experience (patients or carers). SW issues were described as problems relating to money, jobs, housing, family/relationship matters, immigration status, discrimination and abuse. Facilitated discussion explored experience of access to SW support, connectedness between services and opinions on an ideal response. Groups were recorded and transcribed; thematic analysis was undertaken.
Results Nine people took part, patients and carers. Most diagnoses were non-malignant. Thematic analysis revealed battles to access the right services, fragmentation of care, the need to self-advocate and deep frustration. The system was described as ‘mind-blowingly difficult’ and participants used emotive phrases, including ‘I’m having to beg’; ‘we fall into the cracks’; ‘carers are people with no faces’. Positive experiences came from engaged professionals, specialist services and unexpected places, including a school. Participants wanted a radical re-think to deliver the care they wanted, offering proactive support at an early stage, self-help, peer support and a single point of contact.
Conclusion SW needs are not currently met by an integrated cross-agency system response. This risks significant additional burden to patients and carers.
Impact A video summary of our findings was the foundation for Human Learning Systems workshops with service providers. We are co-defining an effective system response to SW needs which will put people with lived experience at the heart of the solution.
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