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.
During the month of April 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.
“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.”
Earlier research carried out by the institute found that people do want to talk about their care and that where people feel better supported – their experience of care was better. Over two thirds said that ‘planning for the future’ was their biggest practical worry. There was also a need for better and clearer communication – 33% said they received too little information too late. Others felt the issues were either avoided or jargon was used.
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