Press release

Use your voice to help to improve the future of palliative care

A unique opportunity for citizens to shape the future of palliative care is being offered by All Ireland Institute of Hospice and Palliative Care (AIIHPC).

AIIHPC is looking for new volunteers to join Voices4Care, a forum established to learn from people’s personal experiences of palliative care and to inform and influence palliative care on the island of Ireland.

Members of Voices4Care are:

·         People with a life limiting illness/palliative care needs

·         Carers or former carers of people with palliative care needs

·         Citizens with an interest in palliative care.

Palliative care focusses on helping a person with a life limiting illness to achieve the best quality of life as their illness progresses, it is beneficial for people with a range of conditions, and across all ages.

Monica Burns from Belfast, a Member of Voices4Care since 2016 reflects on her own experiences since joining,

“One of the aspects I find most beneficial about my time as a member of Voices4Care has been meeting with other people who are either going through or have been through an experience with palliative and/or end of life care.

“Also, having close connections with the Northern Ireland Palliative Care in Partnership team, including participating in the Regional Programme Board, gave the wonderful opportunity to share ideas and experiences and to make a tangible contribution towards improvements and change. This is very rewarding.

Paul Turley, Lead for the Department of Health’s Palliative Care in Partnership, programme for Northern Ireland, said,

“We would like to hear from people with palliative care needs, their carers, and citizens who want to be part of something that can make a real difference in palliative care. AIIHPC has 27 partners including a range of hospices, health and social care organisations and universities on the island of Ireland.

“Voices4Care members provide an important contribution and have meaningful opportunities to influence and shape palliative care through participation in research projects, consultation processes and policy development, such as the Advance Care Planning Policy currently in progress in Northern Ireland and other work through involvement in the palliative care programmes in Northern Ireland and the Republic of Ireland,” Mr Turley said.

Karen Charnley, Director, AIIHPC, said,

“This presents a unique opportunity for people to make a significant contribution to the future of palliative care services. The voices of those who have direct experience of palliative care is a vital part of informing and influencing our own work within AIIHPC and also wider palliative care developments across the island of Ireland.”

Applications open on Monday 28 March and will close on Monday 9 May 2022. *Applicants must be 18 years or over at the time of application.

Further information about joining Voices4Care is available at www.aiihpc.org. People interested in getting involved are asked to get in touch with AIIHPC and to complete an expression of interest form by Monday 9 May. To find out more contact: Paula Pinto, ppinto@aiihpc.org, 00353 87 1961430

ENDS

For media enquiries or to request an interview, please contact Yvonne McCahill, Communications Manager, AIIHPC, ymccahill@aiihpc.org, 00353-87-0947148

Paula Pinto explains more about joining Voices4Care:

Paula Pinto invites you to join Voices4Care – YouTube

Monica Burns, Voices4Care Member talks about the benefits of joining Voices4Care:

Monica Burns, Voices4Care Member – YouTube

Notes to Editor:

AIIHPC

All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a leading organisation with national and international influence driving excellence in palliative care. AIIHPC is a collaborative of hospices, health and social care organisations and universities on the island of Ireland. AIIHPC advances education, research, policy and practice to improve the palliative care experience of people with life limiting conditions and their families.

Voices4Care Members

Frances Murphy

Frances’ experience of working in Our Lady’s Hospice and Care Services in Harold’s Cross brought home to her the importance of care for the dying just as her experience of working as a midwife brought home to her the importance of preparing for childbirth.

Preparing for death and dying is very frightening both for the patient and their family. Frances was working in the hospice when a family member was dying and came to the hospice for palliative care. Frances met with the whole family in their home as they had a large family of siblings and explained the process of what went on in the hospice setting regarding their mum and her initial care and care at end of life.

The family were able to ask questions and voice their fears which helped to allay their anxieties and discuss the options available to them.

Often people come in for respite care and to give their family or carer a break, also they come into the day care unit and meet the staff and other patients so that helps to break down the barriers of their fear, pain relief and symptoms relief plus spiritual care which is so important to people of all faiths and none.

There are lots of services that the hospice provides and sometimes it is the ancillary staff whom the patients confide their fears and worries in the most, such as those working in catering, cleaning, porters and others.

Frances summed up her experience of working in the hospice, saying ‘if I couldn’t die in my own home surrounded by my own family, I would like to die in the hospice.’

“That is why I feel strongly about Voices 4Care- volunteers have the golden opportunity to use their own voice to make it better for our own dying and that of our loved ones, and all our people on this island,” Frances said.

John Joyce

John Joyce is from Foxford, Co. Mayo and has been receiving palliative care for a number of years and has so generously shared his own lived experience through his work with Voices4Care, for the benefit of others.

John has found his involvement, being able to contribute to the future developments in palliative care, a very rewarding and beneficial one.

“It has been a very positive experience to have been able to use my own personal experience of palliative care and the services available to provide input into research, policy and other developments to improve palliative care for people across the whole of the island.

“I recently contributed to a media article about palliative care and shared island approach to the work of AIIHPC. This was one of many public awareness opportunities I have been involved with through Voices4Care, including Palliative Care Week, a public awareness campaign which takes place every September.

“Voices4Care has given me the opportunity to talk directly to health care providers and to people interested in palliative care research. It allows me to bring a down to earth reality to the research agenda by being able to talk about my own lived experience of palliative care. I have really valued the opportunity to be a member of Voices4Care and would encourage anyone interested to think about joining.”