For Veronica and Bernard, parents of Veronica Crombie
For Veronica and Bernard, parents of Veronica Crombie
Palliative and end-of-life-care services in Laois, Longford, Offaly and Westmeath need and deserve urgent investment. This issue, which the Irish Hospice Foundation has consistently highlighted, was the topic of a special documentary by Midlands Radio last night (Monday). You can listen back at this link http://bit.ly/2f2jWCY .
As mentioned, IHF CEO Sharon Foley says: “Everyone deserves a good death and we have a duty to work together to ensure that can happen. This is about people who are dying and the families that are left behind. The Midlands is being very much denied a full range of palliative care services.”
“The region is currently an end-of-life care “blackspot” with no specialist inpatient hospice unit to act as a hub to support and enhance services in Laois, Offaly, Longford and Westmeath. These counties have the lowest level of regional state investment in palliative care nationally.
“The people of the Midlands deserve better,” continued Sharon. “Without a hospice, and the resultant special palliative care services that comes with it, patients are being denied the best possible care on their final journey.
“We all need to sing with the one voice and work together for advancements. Not having a full service means patients with complex symptoms which cannot be managed in homecare have to be transferred to an acute hospital, often through a busy A&E Department. It also means many more people die in acute hospitals. Double the percentage of people with cancer who die in the Midlands die in an acute hospital; compared to other areas where there is a full Level III service.”
The Report of the National Advisory Committee on Palliative Care, which was adopted as government policy in 2001, clearly states: ‘Each health board area should have a comprehensive specialist palliative care service to meet the needs of patients and families in the area. This service should support the patient wherever the patient may be – at home, in hospital, in residential care, or in a specialist palliative care unit.’
Commenting on this Ms Foley said, “Fifteen years on there is still no adequate hospice hub in the Midlands. This is deeply disappointing and we won’t give up the fight for services to be provided.”
Pat Bennett, HSE Chief Health Officer for Laois said before the unit can go ahead it needs the backing of Laois and four other hospice groups for the €9.5 million unit attached to Tullamore hospital. He said the unit would cost up to €2.5 million to run annually, but the HSE is committed to paying for its operation.
“Any commitment (from the five midland hospice groups) would put me in a stronger position to go back to the Department of Health and look for funding. We are being passed out by other areas who are coming forward saying they can put some seed funding down,” commented Mr Bennett.
For James and May Cullen, Parents of Anita MacAlister
HUNDREDS of children with life-limiting conditions and their families have had access to improved palliative care thanks to a national policy adopted seven years ago.
An Evaluation of the Children’s Palliative Care Programme launched by the Health Minister Simon Harris today found new initiatives like outreach nurses are “significantly enhancing” the quality of palliative care being delivered to children with life-limiting conditions across Ireland.
About 350 children die before their 18th birthday every year in Ireland. There are an estimated 3, 840 children in Ireland living with a life-limiting condition. They have an incurable illness that often requires special care and at times may need palliative care.
Palliative Care for Children with Life-Limiting Conditions – A National Policy was published by the Department of Health in 2009 to provide a framework for improving palliative care services for children and families that need them.
The Children’s Palliative Care Programme (CPCP) delivered some of the priority recommendations of this policy through three key initiatives:
These initiatives were initially 85 per cent funded by the Irish Hospice Foundation at an overall cost of €2.6 million – under an agreement with the HSE.
The independent evaluation of the CPCP commissioned by the HSE, Department of Health and Children and Irish Hospice Foundation found the new services have:
Welcoming the launch of the evaluation report, Minister Simon Harris said:
“I am pleased that the outcome of this evaluation has been so positive and that the three elements of the Children’s Palliative Care Programme have been welcomed by parents, front line services and stakeholders. Naturally there is always room for improvement and further development, but this report is clear evidence of the progress that has been made and the real difference the introduction of these services has made to children and their families. We also need to look at how best to develop these services for the future and in light of the changing palliative care landscape, and this report will be an invaluable guide in that regard.”
Sharon Foley, The Irish Hospice Foundation (IHF) CEO said news that your child will most likely die in infancy or childhood can be overwhelming and parents often find themselves isolated and at a loss.
She said it was heartening to read appreciative comments in the report from so many parents on how the new services provided by the Children’s Palliative Care Programme have made a difference to the lives of their children and their families.
“However we need to acknowledge that there are some parts of the country where parents are still waiting for these services or areas where the existing services are overstretched. The key objectives of the 2009 policy remain valid and we need to move to the next phase of development in children’s palliative care and identify clear development priorities for the coming years,” Ms Foley said.
John Hennessy HSE National Director of Primary Care said, “The report demonstrates the significant progress made on the implementation of key recommendations contained in the 2009 National policy.”
“The Children’s Palliative Care Programme has made an important contribution to ensure that parents are actively involved in decision making about the care for their child. The evidence from the report confirms the success of the Children’s Palliative Care Programme to date in improving the communications, co-ordination and the overall quality of care provided to the sickest children we care for.”
The evaluation makes twenty recommendations for action going forward and the Department of Health will be engaging with the HSE to agree the priorities and the way forward for the continuing development of Children’s Palliative Care services.
Blog By Sharon Foley, CEO, The Irish Hospice Foundation
People deserve the right to die with dignity surrounded by their loved ones and in a setting of their own choice. We only get once chance to die so it’s important to get it right. That’s part of our goal here at the Irish Hospice Foundation.
We believe no one should face death or bereavement without adequate care and support. Our mission is to achieve comfort and choice for all people facing end of life regardless of where they live or illness.
As part of our public engagement process we sat down last year with Limerick Compassionate Communities to figure how we could find out what matters most to the people of Ireland at end of life. And then work towards achieving these wishes on their behalf.
This led to the creation of our Have Your Say campaign where people share their beliefs and wishes on dying, death and bereavement through a survey. It has attracted 2,200 replies since it began mid-September and we’re humbled by the great public interest in our endeavour.
By the time the campaign closes at the end of November we hope to have 3,000 replies which will form the creation of the ‘Irish Charter on Dying, Death and Bereavement 2016’. Published next year, it will be a powerful document to present to Government and state bodies and help us advocate for adequate palliative and end-of-life supports to be enacted.
Our survey is here http://bit.ly/2fzjX0B . Please take some time to reflect before commencing, so you can gather your thoughts. We know that for many people death is not an easy subject to think about so it might be nice to complete the survey whilst drinking a nice mug of tea 🙂
Hard copies are available too from our offices at the Irish Hospice Foundation. Social media has also been key at #haveyoursayirl where you can get a glimpse of the national conversation.
We want to find out what is important to you at end of life, in serious illness, death and bereavement. Your answers will be used to develop the Irish Charter. Thank you to everyone who has already shared their wishes and we’re calling on young and old, male and female to partake so we have a very diverse charter.
We also held four Death Café Conversations recently as part of the campaign. It gave people the opportunity to talk about bereavement and what matters to them at end of life over tea and cake. I attended the gatherings where people talked passionately about a diverse range of things from what type of coffin they would like, wooden or wicker, what better educational supports could be in place to help children deal with death, flowers or donations at a funeral, what about a Last Aid Course?
We will all need care through illness at some point in our lives; and it’s important we understand how the people of Ireland look at death and dying to ensure correct supports are in place. Make sure to have your say on what matters most so we can create a charter for the people; by the people.
For Fintan Cooney, Father of Michael Cooney
Supporting Parents, Carers, and Bereaved Children
The Irish Childhood Bereavement Network (ICBN) has organised the first national Bereaved Children’s Week which commences Monday 14th to highlight the needs of bereaved children and how to support them through difficult periods of loss. The week coincides with Universal Children’s Day and is aimed at those supporting bereaved children including parents, carers, teachers, sports groups, faith communities or friends in their local communities.
“‘Children Grieve Too’ is the key message for the week. We’re highlighting that we all have a part to play in supporting children through the journey of grief,” said Brid Carroll, Chair, ICBN.
“In Ireland 80 people die daily. These are the parents, grandparents, cousins and siblings of our 1.2million children. Children grieve too with 2.2% of nine year olds having lost a parent, 6% a close friend and 28% a grandparent. We want to support family, carers and parents in their very important roles and also empower them to grieve their own personal loss.
Ms Carroll continued: “A child needs support to help them through their grief when someone closes to them dies. It will take time for them to gain a sense of security in life. They need to be heard and acknowledged when hurting; and reassured that the pain will lessen and life can improve. The care these children receive is vital to how they live with loss. It is a difficult task for parents and carers to support children when they are grieving themselves. It is important for families to draw on those around them for help. They should not have to cope alone. They need the support of family, friends, schools, faith and community groups as well as government. Bereaved Children’s Week is highlighting these issues.”
Events are taking place nationwide and the week culminates in a National Conference of the ICBN on Friday 18th launching much-needed bereavement standards for children.
The ICBN is hosted by the Irish Hospice Foundation and funded together with Tulsa. See www.childhoodbereavement.ie for more info.
Reindeer Food, a special recipe of oats and magic, is on sale for €2 in all MACE stores, branches of LloydsPharmacy and Superdrug around Ireland in the run up to Christmas – with all proceeds going to support The Irish Hospice Foundation. We also have some available here in our Online Shop.
For Des Cronin, Dad of Kate Cronin
For Josephine McGrane, Mother of Susan McGrane