West Yorkshire Insight Report - People's experience of end-of-life care in West Yorkshire - the full report can be found here End of life care in West Yorkshire - Your Healthwatch A summary of the findings for Leeds is below.
1. Findings for Leeds
The Leeds findings represent feedback from 52 respondents, including people receiving end‑of‑life care and relatives of those who had died. The data highlights strong staff performance, good respect for personal circumstances, and high awareness of 24/7 help, alongside concerns about communication clarity, coordination, and speed of response, especially around symptom management and medications.
2. Key Quantitative Findings
Respondents in Leeds reported:
- 44% had spoken to services about their end‑of‑life wishes.
- 50% were consistently told what to expect.
- 73% felt services respected all aspects of their life.
- 67% said staff always checked care met needs.
- 66% felt care met their/their relative’s specific needs.
- 80% knew they could ask for help 24/7.
- 76% felt staff had the necessary skills.
- 80% felt staff were kind and caring.
These results position Leeds above regional averages in several areas, notably responsiveness and staff competency.
3. Key Themes & Issues Identified
3.1 Communication
Communication was the most variable element of experience.
- Several families were not clearly told their loved one was nearing end of life.
- Use of ambiguous language (e.g. “not likely to be around for long”) caused confusion.
- When communication was good, it included clear metaphors, honesty, and preparation.
- Fragmented teams sometimes resulted in mixed or repeated information.
Implication: Leeds needs more consistent, timely, and plain‑English conversations about prognosis and expectations.
3.2 Access to Care
People noted delays and barriers including:
- Slow diagnostic and discharge processes.
- Lengthy waits for equipment or medication.
- Systems not moving fast enough to allow families to make the most of final weeks.
Positive: Services generally respected cultural/religious practices and allowed flexible visiting.
3.3 Comfort and Symptom Management
Experiences were mixed:
- Many praised staff for keeping relatives comfortable.
- However, delays in pain relief, especially over bank holidays or with locum cover, caused significant distress.
- Cases were reported where individuals spent final hours in unsuitable environments (e.g., A&E) due to delays.
Implication: Leeds should address out‑of‑hours and bank‑holiday resilience for pain and symptom management.
3.4 Coordination of Care
Coordination ranged from “seamless” to “family-led and chaotic”:
- Families often felt they were the main coordinators, unsure who was “in charge”.
- Delays in setting up syringe drivers, managing medications, or linking with GPs were common.
- When services were responsive (e.g., proactive calls, punctual visits), experiences improved significantly.
Implication: Introduce or strengthen single‑point‑of‑contact models and inter‑team communication.
3.5 Staff Skills and Compassion
Staff were a major strength in Leeds:
- Frequently described as compassionate, knowledgeable, attentive, and proactive.
- Staff often supported families emotionally and practically.
- Some staff even attended funerals, which families valued highly.
However:
- Variability in continuity of staff impacted rapport.
- Bank/agency staff sometimes lacked end‑of‑life care experience.
3.6 Community & Bereavement Support
Findings show a patchy and insufficient picture:
- Most people relied solely on family, with mixed levels of support.
- Bereavement counselling was offered mostly when hospice was involved.
- Families described long‑term emotional impacts when deaths were traumatic or poorly managed.
- Siblings felt overlooked compared to spouses/parents.
Implication: Leeds could strengthen bereavement pathways, especially proactive follow-up after death.
4. Emerging Priorities for Leeds
Based on the findings, Leeds’ key improvement areas include:
1. Earlier and clearer communication
- Standardise early conversations about prognosis and care options.
- Promote consistent, plain-language communication across all services.
2. Faster response for pain and symptom management
- Strengthen out‑of‑hours cover.
- Improve escalation routes for urgent medication issues.
3. Improve care coordination
- Establish a single point of contact per patient/family.
- Better integration between hospital, community, hospice and GP teams.
4. Support for family carers
- Provide practical guidance early in the pathway.
- Improve information about what caring for a dying relative entails.
5. Strengthen bereavement pathways
- Offer proactive follow‑up, especially where deaths were sudden or distressing.
- Address the needs of overlooked groups (e.g., siblings).
5. Conclusion
Leeds demonstrates strong foundations in end‑of‑life care — particularly in staff skill and compassion, respect for personal circumstances, and awareness of 24/7 support. However, the findings highlight critical areas where timely communication, quicker symptom response, and better coordination could significantly improve experiences for individuals and families.
This briefing note can support planning within end‑of‑life care services, commissioning discussions, and quality improvement initiatives across Leeds.