Seven in 10 people want to discuss palliative care if it could help them
Research carried out on behalf of the All Ireland Institute for Hospice and Palliative Care (AIIHPC) has shown that seven in ten people believe that if palliative care could help them they would like a health care professional to discuss it with them.
Today marks the start of Palliative Care Week (9 to 15 September 2018) and AIIHPC surveyed people across Northern Ireland about their understanding of palliative care.*
Karen Charnley, AIIHPC Director, said:
“Our survey shows that many people would like to begin a conversation about a topic often considered too difficult and too frightening to discuss, the reality of living with a life-limiting illness. Our theme for Palliative Care Week 2018 is ‘Palliative Care, Because Every Moment Matters’. Whether you are a member of the public or a health and social care professional, we encourage everyone to discuss how palliative care could help.”
The survey also shows that eight in ten people believe palliative care should be considered as early as possible when diagnosed with a life-limiting illness.
Palliative care focuses on helping a person, of any age, with any life-limiting illness, to achieve the best quality of life. It involves the management of pain and other symptoms and provides support for social, emotional and spiritual needs.
Richard Pengelly, Permanent Secretary of the Department of Health, is due to formally launch the Palliative Care Week campaign at an event in Belfast City Hall tomorrow (Monday 10 September).
Mr Pengelly said:
“Increasing awareness and understanding of palliative care and addressing the misconceptions that many people hold about it is extremely important. Doing so means we can help ensure that people living with a life-limiting condition receive the care and support they need to live well and have the best quality of life. As a society we also need to be more open in talking about dying, death and bereavement.”
Speaking ahead of the Palliative Care Week launch in Belfast, and a simultaneous launch in Dublin for this all-island campaign, Ms Charnley said:
“Our survey shows that people are willing to talk about palliative care; about what matters to them, and to receive help to give them a better quality of life. Palliative care is for people of all ages with a life-limiting condition such as motor neurone disease, MS, dementia, advanced kidney disease or advanced lung disease, as well as advanced cancer and heart disease.”
The Palliative Care Week campaign coincides with the launch of personal video stories of people who have benefitted from palliative care.
Lynne Armstrong, from Belfast, is among those who have spoken about the benefits of palliative care. Lynne, who is living with Multiple Sclerosis, said:
“A palliative approach is really looking at the whole person and not just looking at everything in isolation. When I thought about it, I realised that I actually have been receiving a degree of palliative care for a long number of years but I never thought of it like that. I have the MS consultant, the MS nurse, who were dealing with me medically as well as my own GP. Physically I’ve got the neuro physio at the MS Society and emotionally we have excellent counsellors at the MS Society.”
Corrina Grimes, Allied Health Professions Consultant and Regional Palliative Care Clinical Lead at the Public Health Agency, said:
“It is important that people living with serious and progressive conditions are supported, to help them achieve the best quality of life, whether through addressing pain, fatigue, and loss of function or distress, when facing life-limiting illness. It is encouraging to know that people want to discuss palliative care with their health and social care professionals to look at how best to achieve this. As well as the ongoing delivery of palliative care, the regional palliative care programme – Palliative Care in Partnership – is supporting health and social care professionals to be skilled in listening to and supporting people with serious and progressive conditions, so people can discuss what really matters to them.”
For further information please contact Aileen Gaskin 00353 87 7724 717
Notes to Editor’s
*A survey of 500 people across Northern Ireland was carried out in June 2018
AIIHPC is a collaborative of hospices, health and social care organisations and universities on the island of Ireland. AIIHPC advances education, research and practice to improve the palliative care experience of people with life limiting conditions and their families. http://aiihpc.org/about/
Lynne Armstrong has lived with MS for 50 years, since she was a teenager. In those days, patients were not informed that they had MS so Lynne was merely given evening primrose oil and high doses of steroids, those being the only treatments available at the time. Things were very different in the 1970s. Lynne had two very young children aged one and three, was living in England with her husband and family with no support network. The neurologist advised Lynne to go home, not to worry, to find a nurse to administer the many vials of steroids which had been stashed into her handbag (no health and safety way back then), to avoid exercise and to get plenty of rest!
Whilst Lynne’s MS story has been a difficult one for her, it has been equally difficult for her husband who has to do everything for her and who is now called her Main Carer. Her children are married with their own families but they feel guilty that neither of them lives here. One is in Canada and the other in Australia. MS affects all members of a family.
Five years ago, Lynne totally lost her way and did not want to go out to meet or be with friends. Her mental health was at an all-time low. She was persuaded to go to the MS Centre for yoga and complementary therapy. Little did she know that that was to be the beginning of the next stage of her MS story. Before she knew it, she became involved with the End the Wait Campaign, became secretary of the local Belfast Group, and was voted on to the Northern Ireland MS Society National Council.
Lynne’s dream is that the day will come when everyone who lives with MS will have the right to access an MS Specialist, whether it be an MS Consultant, an MS Nurse, or a member of their multidisciplinary team as and when needed and not be part of what seems to be a lottery system. Lynne fears this will not be in her lifetime.
AIIHPC’s 26 partners are:
Belfast Health and Social Care Trust
Dublin City University
Dublin University Trinity College
Foyle Hospice, Derry/Londonderry
Galway Hospice Foundation
Irish Hospice Foundation
LauraLynn Children’s Hospice
Macmillan Cancer Support
Marymount University Hospital & Hospice, Cork
Milford Care Centre, Limerick
National University of Ireland Galway
Northern Health and Social Care Trust
Northern Ireland Hospice
Our Lady’s Hospice & Care Services
Public Health Agency (Northern Ireland)
Queen’s University, Belfast
Royal College of Surgeons in Ireland
South Eastern Health and Social Care Trust
Southern Health and Social Care Trust
St Francis Hospice, Dublin
University College Cork
University College Dublin
University of Limerick
Western Health and Social Care Trust