Patients, families and carers asked to share their experiences of palliative care

Categories: Research.

The ‘Let’s Talk About’ survey is the first of its kind across Ireland and continues until the end of May.

A drive on responses to the survey is being sought as part of this week’s Dying Matters Awareness Week in Northern Ireland.

The survey is being led by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) with support from the Public Health Agency (PHA) and Health Service Executive (HSE) in the Republic of Ireland.

The survey asks people in Northern Ireland and the Republic of Ireland with illnesses which may not be cured to share their experiences, both good and bad. This includes people living with conditions such as advanced respiratory disease, cancer, chronic kidney disease, heart failure or dementia.

AIIHPC Director Paddie Blaney said: “Each story is valuable, hundreds of stories and more will be powerful.”

The survey can be completed online at Responses are confidential and the survey takes around 15-20 minutes to complete.

Dying Matters Awareness Week

PHA Allied Health Professions Consultant, Corrina Grimes, said she hoped the public focus of Dying Matters Awareness Week would help to drive responses.

“The survey will provide a valuable insight into what improves the quality of life for people with palliative care conditions and help to inform how care and support is delivered.”

Dying Matters Awareness Week is taking place this week across the UK. The theme of the week is ‘You only die once’ or #YODO for short, a focused call to action aimed at encouraging people to take five simple steps to make their end of life experience better, both for them and for their loved ones.

The five steps are:

  • make a will
  • record your funeral wishes
  • plan your future care and support
  • register as an organ donor
  • tell your loved ones your wishes.

More information is available at There has also been extensive coverage of the week on the UK edition of ehospice.

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