Public Engagement on the Wiltshire End of Life Care for Adults Strategy 2017-2020

This report summarises public engagement carried out by Healthwatch Wiltshire to inform the development of Wiltshire’s End of Life Care for Adults Strategy 2017–2020. NHS Wiltshire Clinical Commissioning Group and Wiltshire Council commissioned the work to understand what local people believe is important in end-of-life care and to help shape future services. Around 4,000 people die in Wiltshire each year, and care is provided by a wide range of health, social care, voluntary and community services, as well as unpaid carers. 

Healthwatch gathered views through public engagement events, an online questionnaire, reviews by voluntary groups, and feedback from its wider monitoring work. In total, 91 people contributed, including members of the public, carers, professionals, and representatives from organisations involved in end-of-life care. 

Participants provided mixed feedback on the format of the draft strategy. Some found it clear and helpful, while others felt it was too long, overly technical, and written primarily for professionals rather than the public. Many people wanted a much shorter, easier-to-read public version that explained available services, key contacts, and sources of support. Concerns were also raised about the use of jargon, unexplained acronyms, and inaccessible presentation of some information. 

Feedback on the content of the strategy was generally positive, but participants felt it lacked sufficient detail about how priorities would be implemented, who would be accountable for delivering improvements, and how success would be measured. Many people wanted clearer actions, targets, and timescales rather than broad statements of intent. There was also concern that the strategy did not place enough emphasis on the role and needs of unpaid carers and gave insufficient attention to different cultural, religious, and personal preferences at the end of life. 

Participants broadly supported the strategy’s goals but emphasised that success should be measured by people’s experiences and outcomes rather than simply by increasing the number of documents, plans, or assessments completed. People stressed that advance care plans are only valuable if they are actively used to ensure that patients’ wishes are respected and followed. Suggestions were also made to monitor complaints and service quality as indicators of success. 

When discussing what matters most at the end of life, participants consistently highlighted the importance of effective symptom and pain management, being treated with dignity and respect, having genuine choice about care and where it is delivered, receiving clear and accessible information, and ensuring that care reflects personal wishes and values. People also emphasised the importance of early conversations about future care, advance planning, and legal arrangements such as powers of attorney.

Support for unpaid carers emerged as a major theme throughout the engagement. Participants wanted carers to have access to practical, emotional, and informational support. Many felt there should be a named coordinator or key worker to help families navigate services, coordinate professionals, and provide advice. People also highlighted the need for better local support groups and training opportunities for carers who wish to be involved in providing care at home. 

A recurring concern was the need for better communication and coordination between organisations involved in end-of-life care. Participants reported experiences of duplication, poor information sharing, and delays in accessing services and support. They wanted greater collaboration between health, social care, voluntary organisations, and other community services involved in supporting people at the end of life.

Participants also identified specific issues that needed improvement, including earlier recognition of people approaching the end of life, greater availability of domiciliary care, better access to community services, improved continuity of care, easier access to medications and equipment, and more consistent services across Wiltshire. Concerns were also raised about waiting lists for bereavement support and the availability of specialist dementia and end-of-life services. 

Many people believed society needs to become more open about death and dying. Participants encouraged earlier discussions within families and communities about end-of-life wishes and suggested that local communities could play a stronger role in supporting people through the end of life. 

The report noted positive feedback about hospice services, particularly outreach and hospice-at-home support, and many participants valued the opportunity to learn more about services during the engagement events. 

Healthwatch Wiltshire concluded that commissioners should use the feedback to inform the final implementation plan for the strategy. The report recommended producing a short, accessible public version of the strategy with information on available services and ensuring that future engagement exercises provide people with sufficient time and opportunity to review consultation documents in advance.