Survey of palliative care patient and carer experiences to begin

Patients and carers urged to share experiences of palliative care.

A unique survey of patient and carer experiences of palliative care has been launched. The Let’s Talk About survey is being led by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) with support from the Public Health Agency (PHA).

The survey asks people with illnesses which may not be cured in Northern Ireland and the Republic of Ireland 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 urged people to take part and help to improve experiences of care. “The survey is aimed at people living with a serious or progressive medical condition from which they are unlikely to be cured, someone they know or care for, or someone they knew or cared for in the past two years.”

“We are looking for people to be honest and specific telling both their good and bad experiences of care. Each story is valuable, hundreds of stories and more will be powerful,” she said.

The Let’s Talk About survey is also being supported by the Health Service Executive in the Republic of Ireland.

The survey can be completed online at www.letstalk-about.org or can be provided in hardcopy. Copies of the survey and Freepost envelopes can be obtained from AIIHPC at 00353 (0) 1 491 2948, or email at info@aiihpc.org. All responses are treated confidentially and should take 15-20 minutes to complete.

PHA Allied Health Professions Consultant, Corrina Grimes said: “Palliative care has been proven to improve people’s quality of life, as well as support families through very difficult life events.

“The Public Health Agency is delighted this initiative is now underway and encourages the public to take part in this opportunity to share their experience.

“Along with the Health and Social Care Board we will look carefully at the responses as they will provide a valuable insight to what improves the quality of life for people with palliative care conditions and will help inform how care and support is delivered across Northern Ireland.”

Many people live with a serious or progressive medical condition from which they are unlikely to be cured and which may limit or shorten their life. During this time not only will people need medical care they may need practical, social, emotional and spiritual support. They may need this kind of care for weeks, months and years, up to the end of life.

This type of care is often called palliative care and people can receive this at any stage following diagnosis of a condition. The care and support a person receives during this time should help them to live with their illness and have as good a quality of life as possible.

AIIHPC is comprised of a consortium of Health Agencies and Universities in the North and South of Ireland and is focused on work in four areas – policy & practice, research, education and a Palliative Hub information and education portal.

More information is available at AIIHPC website at http://www.aiihpc.org.