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5 Managing social welfare needs in life-limiting illness: is there a system response?
  1. Colette Hawkins1,
  2. Anne Benson2,
  3. David Black2,
  4. Lesley Haley2,
  5. Hameed Khan2 and
  6. Hannah Hesselgreaves3
  1. 1South Tees Hospitals NHS Foundation Trust, UK
  2. 2Member of the Public, UK
  3. 3Northumbria University, UK


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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