I am very excited about something that’s happening on the island of Ireland this week.
It’s the national launch of the let’s talk about survey (www.letstalk-about.org) which is being commissioned by the All Ireland Institute of Hospice and Palliative Care (AIIHPC). Such is my excitement that I allowed myself to be talked into writing an article on the subject for ‘Women’s Lives Women’s Voices’ or could it be that I became so completely carried away that I actually made the suggestion myself?
In the past, hospice and palliative care was only for people who were dying from cancer. It was associated with pain management and the last few days or weeks of life. Many of us still think this continues to be the case. But a lot has changed in recent times. It is a fact that we, in the Western world, are living longer. This means that we are seeing an increase in serious or progressive medical conditions which, with the advances in medical science, can be managed but not cured.
Diseases such as advanced respiratory disease, cancer, chronic kidney disease, heart failure, a disease such as dementia, or another illness which may not be cured. It could be a neurological condition such as Parkinson’s Disease or MS. It could be severe progressive arthritis.
Today, most of these conditions will not kill us in the short, or even medium term, but they will impact on our quality of life and that is where palliative care comes into its own.
Palliative care is whole person care with an emphasis on quality of life right up to the moment of death. In short it’s about living well and dying well. Pain and symptom management are part of that care but attention is also given to practical, social, emotional, psychological and spiritual needs.
Palliative care can be provided in your own or a family member’s home, in a hospital, a nursing or residential home, a hospice. A person with a serious or progressive medical condition may need this kind of care from the moment of diagnosis up to and including the end of life. They may need it for weeks, months or years depending on the condition - and on the continued advances in medical science!
That is why this survey is important and this opportunity to help to improve hospice and palliative care in the future is an opportunity not to be missed. If you are a person living with a serious or progressive medical condition that is unlikely to be cured, if you know someone living with such a condition, or if you have known someone with such a condition who has died in the past two years, the survey is your opportunity to make a difference to the future of hospice and palliative care here.
The let’s talk about survey invites you to share an experience that happened to you, or someone you know, cared for or knew in the past two years, to tell your story, and then to answer a short series of questions relating to that experience. The person who has or had the illness must be over 18 years. It can be a positive or negative experience and can be about any aspect of health or social care and support. If the experience happened to you, you answer from your own perspective, if it happened to someone you know or care for, or knew or cared for in the past two years you answer on their behalf as best you can. The survey is completely anonymous, no names or identifying details are asked for, and the information given is completely untraceable back to you. You can talk about as many experiences as you wish but you must fill out a separate survey for each one. You can take the survey online (www.letstalk-about.org), or if you prefer a paper copy you can contact the AIIHPC (01 4912948).