Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers (November 2022)

Summary

For patients living at home with advanced illness, deterioration in health can happen at any time of the day or night. This research report funded by the charity Marie Curie looks at issues faced by people with advanced illness and their informal carers in accessing out-of-hours care.

The report highlights new evidence on out-of-hours care, based on:

• UK data on out-of-hours emergency department attendance among people who are in the last year of life.
• interviews with health professionals about out-of-hours services across the UK.
• a patient and public involvement (PPI) workshop.

Content

Recommendations

1. Out-of-hours palliative and end of life care is currently inadequate and fragmented, and must be better valued, prioritised and strengthened. Services must be developed and provided equitably, irrespective of diagnosis, socio -demographic characteristics (e.g. age, ethnicity) and geographical area.
2. Service development and planning must be actively informed by the voices of patients and informal carers; collaboration with patients and informal carers should be used to drive improvements in out-of-hours care, shape service development and help identify potential solutions for gaps in care.
3. Integrated Care Systems, Health Boards and NHS Trusts, Integration Joint Boards and NHS Health Boards, and Health and Social Care (HSC) Trusts across the UK need to strategically develop, enable and support greater integration and coordination of out-of-hours services.
4. District nurses and community nursing teams play an extensive role in providing hands-on out-of-hours care, but huge pressures on this workforce limit the care they can provide; improved workforce planning, provision, and support for community providers of out-of-hours palliative and end of life care is essential.
5. A designated telephone line for people with palliative and end of life care needs and their informal carers should be available 24/7, in every part of the UK.
6. Availability and use of shared care records should be audited regularly to overcome the challenges identified in using, sharing and implementing these records across the UK. Such records should be based on timely conversations about needs, wishes and preferences for care at the end of life, and include the availability of anticipatory medicines (if appropriate).
7. The questionnaire provided in this report can be used by those with commissioning responsibilities to understand and address gaps in out-of-hours service provision and identify priorities for improvement.
8. Research into out-of-hours care is essential for future service development and needs continued funding.