Thursday 18 December 2014

Patients asked to share their stories

Patients are being asked to share their experiences in a new survey
Patients are being asked to share their experiences in a new survey

People with illnesses that may not be cured, in the Republic of Ireland and Northern Ireland, are being asked to share their experiences, both good and bad, in a new survey.

This includes people living with conditions such as advanced respiratory disease, cancer, chronic kidney disease, heart failure or dementia.

The 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 HSE.

The qualitative survey is expected to generate a significant number of responses to help improve policy and services across the island.

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." The survey can be completed online at http://www.letstalk-about.org and will remain available for completion from now until May 31.

Hard copies of the survey and Freepost envelopes can be obtained from AIIHPC at (01) 491 2948, or email info@aiihpc.org. It is confidential and takes 15-20 minutes to complete.

Palliative care refers to the medical, social, emotional, spiritual and practical support provided to people with serious or progressive medical conditions. People can benefit from this kind of care for weeks, months and years, up to the end of life.

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

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