A public engagement programme is underway inviting patients, carers and families to share their experiences of care to help improve services for people with non-curable and serious illnesses.
The ‘Let’s Talk About’ care programme is calling on people across Northern Ireland to share their experiences by completing an open survey at www.caresurvey.org
The survey is being led by All Ireland Institute of Hospice and Palliative Care (AIIHPC) with support from the Public Health Agency (PHA) and the Health Service Executive (HSE) in the Republic of Ireland.
It is open to people – or their carers or families on their behalf – with serious conditions such as advanced respiratory disease, chronic kidney disease, motor neuron disease, cancer, heart failure, dementia among others.
Corrina Grimes, PHA Allied Health Professions Consultant, said, “We really want to hear from people who have stories to tell about their good, as well as their not so good experiences. This helps deepen our understanding of what makes for good care and what needs to improve.”AIIHPC Director Paddie Blaney said: “For people with conditions that cannot be cured the goal of care is the best possible quality of life. They may need help with pain and other symptoms but also practical, social, emotional and spiritual support and they may need that care for weeks, months and years up to the end of life.”
Hard copies of the survey can be obtained from AIIHPC at 00353 (0)1 491 2948, or firstname.lastname@example.org. Responses are anonymous and take 15-20 minutes to complete.