Understanding the experiences of people with a respiratory condition towards end of life

Leeds Health and Care Partnership colleagues are asking health and social care staff including those working in the third sector to please share your experience so they can learn and improve.

This survey is for team members to fill in:

  • from their own perspective, or,
  • on behalf of a person living with severe frailty or approaching the end-of-life, or,
  • on behalf of a family member / friend / carer of someone living with severe frailty or approaching the end-of-life

Deadline: 2 June 2024

Background

We know that caring for a family member or friend at the end of their life at home, or in a care home, can be difficult.

In Leeds, we want to make sure that people receive the care they need, where they want it, and at the right time. We want to understand if there’s anything we could do differently to help prevent unexpected emergency admissions into hospital, support families and carers better, and keep people safe and well at home wherever possible.

This survey is designed to hear from staff and learn from their experiences. It is also for staff to use to record conversations with people at the end-of-life and their families and carers.

Please can you help by completing this survey: Link to the Leeds Health and Care Partnership survey: https://re-url.uk/W9HU

We want to hear from professionals from across health and social care and the third sector, so if you have colleagues that you think would have an opinion please share this link with them.

When completing the questionnaire think about anyone you are supporting who may be on a palliative care (end of life) pathway or who are severely frail (this is described as people who are housebound or who might find it difficult to get out and about without support) and either have a respiratory disease or suffer respiratory infections.

If you have stories to share from people with these conditions you can fill in the survey on their behalf or use it to have a supported conversation with them (but please don’t share the link as this has not been designed as a survey for the public to complete and some of the language may be quite clunky).

If you want to share your experience/experiences of people you support but would rather do this through a phone call or interview then please get in touch with [email protected] to arrange a time to capture your views.