Posts Tagged ‘palliative care’
Aine said the family was “lucky” to make it possible for them to fulfil their mother’s expressed wish to die at home. “She had a really good life and a really good death, in her own bed, in her own home. You couldn’t ask for better than that.”“I’m not a nurse and I’d never been present at this stage of someone’s life before. The nurse was wonderful; from the moment she arrived she could not have been better. We knew she was going to mind our mother from a medical point of view but she also minded us. “We obviously miss her, but when you feel it couldn’t have gone any better that makes a real difference,” she said.
Caption: The late Mona O’Riordan with family. Retired pharmacist and mother of five, Mona died peacefully at home with her daughter Aine by her side helped by the Nurses for Night Care service.Marie Lynch, IHF Head of Healthcare Programmes, said: “Three quarters of Irish people would like to die at home, according to IHF research but only approximately one in four get to do so. Support from Nurses for Night Care enables people to die at home if that is their wish. 70% of people die from non-cancer illnesses every year such as dementia, heart disease, motor neurone disease, advanced respiratory disease and end stage kidney disease. Demand for the service grows annually. We provided 100 nights of care when launched the service 11 years ago. That number grew to 2,027 nights in 2016 costing €649,171. Care was delivered in 26 counties across Ireland and we are so very grateful to everyone who donated to make this difference. Referrals are made by the Specialist Palliative Care home care team to us and it is then arranged for a nurse to visit the home,” concluded Ms Lynch. The IHF has an agreement with the Irish Cancer Society to provide the service. The IHF receives core funding from Pobal from the Department of Housing, Planning, Community and Local Government’s Scheme to Support National Organisations 2016-2019.
Our ‘Rose Room’ is a quiet room for compassionate care where parents can receive difficult news in privacy. It is situated adjoining one of the main ultrasound rooms with an interconnecting door. When a doctor or ultrasonographer identifies a fetal abnormality on the ultrasound scan or when a woman/couple have been asked to return to the hospital for the results of diagnostic tests, there needs to be a private dignified comfortable space where they can be met and cared for. For the remainder of their antenatal care the women need to have this space available for them if they wish,” said Ms Hunt.Refurbishing the room will include painting the door and walls, change of flooring, installing soft lighting, removing the wall cupboards, installing soft furniture and adding an art feature. Clinical staff have been involved in drawing up the plans from the beginning, and many of the ideas have come from midwives, doctors and ultrasonographers working at the front line. “The newly refurbished Rose Room will represent our commitment to providing sensitive and compassionate care to women and their families when receiving bad news while providing a private and dignified space for them to receive their care,” added Ms Hunt. The Design & Dignity scheme previously funded a mortuary refurbishment in University Hospital Limerick as well as family rooms in St John’s Hospital and Nenagh Hospital and a bereavement suite in Ennis Hospital. Mary Lovegrove, Design & Dignity Project Manager with the IHF said: “The Design & Dignity programme has been running since 2010 and has funded 32 hospital projects across Ireland to date. Four important projects have already benefitted from the UL Hospital Group. We hope that this new ‘Rose Room’ will offer parents a dignified private space to be together at an intensely emotional time.
“Our vision for the Design & Dignity project is for an end of life sanctuary in every public hospital in the country by 2021 with approximately 60 projects completed as well as a HSE National Mortuary Capitals Programme underway,” concluded Ms Lovegrove.Design & Dignity is a partnership project of the IHF and HSE Estates and originated in the IHF’s Hospice Friendly Hospitals Programme. The HSE has adopted Design & Dignity Guidelines for all refurbishment and new builds. Caption: Pictured recently are Staff at University Maternity Hospital Limerick including Noreen Mann, Eileen Ronan, Eileen Quinlan, Jean Rafferty, Maria Gibbons, Rita O’Brien and Marie Hunt. UMHL has been granted funding to refurbish their Rose Room as part of The Irish Hospice Foundation and HSE’s Design & Dignity Grants Scheme. The IHF receives core funding from Pobal from the Department of Housing, Planning, Community and Local Government’s Scheme to Support National Organisations 2016-2019.
- The appointment of Ireland’s first consultant paediatrician with a special interest in palliative medicine.
- Eight outreach nurses were appointed to co-ordinate care for children at home.
- A paediatric palliative care education and training programme for healthcare staff was developed to improve the capacity of staff supporting children with life limiting illnesses.
- Improved quality of life for children and their families.
- Improved co-ordination of services to children with life-limiting conditions so they can be cared for in the home setting as far as possible.
- Led to an improved children’s palliative care sector with increased education on children’s palliative care.
- Increased awareness of children’s palliative care and of the new service in both the public arena and health sector.
Developing Services for the future
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.
Irish Hospice Foundation to launch Irish edition of ehospice – a global online end-of-life news resource
The Irish Hospice Foundation, (IHF), today welcomed the report from the Dail Committee on Health and Children calling for the development of a national strategy on palliative care, end of life and bereavement.
Chief Executive Officer of the IHF, Sharon Foley, said she hoped the government will act on the findings of the report and put palliative and end of life care at the top of health and other policy agendas. She commended the Dail Committee chairman, Jerry Buttimer TD, and members for the hearings saying “a great service” had been done for the country.
Ms Foley said on average 29,000 people die in Ireland each year and as many as 290,000 are left bereaved annually. Using international research, there is an estimated €1.3 billion being spent on end of life care every year, but this spend is largely unplanned and uncoordinated.
“We passionately believe that much more can be done to support the health and social services to deliver better end of life care everywhere and this report is a major step in this direction.”
“It is the right of every person to die in comfort and dignity but this is something we must plan for. It is possible to secure high quality care for those facing death while also ensuring the very best use of resources. A national strategy on palliative care, end of life and bereavement, as recommended in todays report, will play a key role in ensuring this.”
Ms Foley said this strategy must be for the entire population – from those who need GP support to those who need special palliative care to manage their pain and other complex symptoms and to those left behind and facing grief. The strategy, she stressed, needs to be relevant to patients of all ages with all conditions including dementia.
“It also needs to be wider than healthcare. It needs to look at the economic, administrative and legal issues including the funeral industry and bereavement.”
Ms Foley also welcomed the committee recommendation that the Government address the regional disparities which exist in the provision and funding of specialist palliative care services in Ireland.
“As many as 2,500 patients have no access to in-patient hospice care in their area as they don’t exist. We have three regions in Ireland with no in patient hospice units – the north east, the midlands and the south east, as well as Kerry, Wicklow and Mayo. Citizens are living and dying with an inequitable system. We have approximately 150 hospice beds today but we should have 450 and we also have significant deficits in hospice staff. “
Ms Foley said more need to be done to help people fulfil their wish to die at home. Figures show that while 67 per cent of us would prefer to die at home only 26 per cent of us will do so while another 25 per cent will die in long stay settings. “Lots of good work is being done through the IHF Primary Palliative Care programme, the Hospice home care teams and national hospice homecare for children programme. In the latter, we we are funding 85% of the programme which is supporting families to care for children, with life limiting illness, at home.”
“This report, along with the recent report by the Ombudsman on end of life, will make a serious contribution to the national conversation on death and dying and bereavement and I warmly welcome it.”
Note: Link to Oireachtas Committee report on End of Life launched today http://www.oireachtas.ie/parliament/oireachtasbusiness/committees_list/health-and-children/reports/
Steph Booth, the journalist and champion for people and carers living with dementia, today (26th March) launched the Irish Hospice Foundation’s (IHF) three-year Changing Mindsprogramme which seeks to improve the end-of-life experience for people living with dementia who are on their final journey.
Ms Booth’s husband, the actor Tony Booth and father of Cherie Blair, has Alzheimer’s disease which is a type of dementia. She has written extensively about the challenges they both face in living with the condition. While now living in the north of England, the couple lived in Co Cavan for a number of years.
Ms Booth launched the programme when she spoke at a seminar entitled “Palliative Care Needs of People with Dementia – Building Capacity” at the University of Limerick. The day-long seminar was one of the first events to be organized under the Changing Minds programme which will run from 2013-2016. The programme has been allocated an investment of €3m and is co-funded by The Atlantic Philanthropies, a limited life foundation and the IHF.
Dementia affects about 41,000 people today. In the next 30 years, the number of people living with this condition is expected to reach nearly 141,000. About 34% of Irish people with dementia currently live in residential care and almost one in five acute medical beds are occupied by people with dementia. Just under two thirds of the residents of residential care settings have been diagnosed with the condition.
Ms Booth stated: “Through my writing I have been trying to raise the profile of the issues around dementia. I have also tried to say to other carers ‘you're not on your own’. Difficult questions and increasing problems have to be faced by us all. Unlike other illnesses where the sufferer may still be able, even towards the end, to plan and make choices for their care, that would clearly not be the case for those with dementia. When is the right moment to have the discussion? It is good to know that the Irish Hospice Foundation through this Changing Minds programme is there to help us to face up to and achieve this. The questions to be confronted are both practical and moral. The programme is exciting and innovative. Dying well with love, dignity and respect is a fundamental rite of life.”
Sharon Foley, Chief Executive Officer of the IHF, commented: “The Irish Hospice Foundation is committed to looking at the end-of-life needs of particularly vulnerable members of our society. We aim to promote and support better end-of-life care across all care settings and for all illnesses. As a poorly understood and highly stigmatised condition affecting an increasing number of people, we looked to contribute to the development of services for people living with dementia. We want to see palliative care for people with dementia prioritised and developed in all care settings and more people supported to be able to die well at home. We are also looking to increase our focus in community residential care settings. About 66% of these residents have a cognitive impairment so our programmes for care settings will have an increased dementia focus.”
She continued: “At the end of the programme, we hope that the end-of-life care for people in all healthcare settings is developed and specifically the needs of people with dementia will be better understood and supported. Finally we want to see increased public discussion on death and dying with more people, including those with dementia, engaging in early advance planning”
Marie Lynch, Programme Development Manager, commented: “People dying from and with a dementia are an especially vulnerable group. Their end-of-life care needs may be further complicated by the absence of staff specifically trained in end-of-life care and dementia care. Changing Minds is about both principles and practice - promoting quality end-of-life principles and embedding good practices into the care of people living with dementia. It aims to positively transform public awareness and professional attitudes.”
Under the Changing Minds programme, the IHF will:
- Engage with healthcare leaders in statutory and voluntary services to generate support for developing excellent end-of-life care for people living with dementia
- Educate and develop the end of life care and communications skills of staff who are caring patients with dementia in all care settings
- Promote good models of care including support guidance and information
- Introduce systems to support the palliative care needs of patients with a life limiting disease at home including those with dementia
- Introduce useful tools and resources used in acute hospitals into other healthcare settings where staff and patients with dementia will benefit
- Encourage a national conversation about the end-of-life and encourage all to engage in early advance planning.
- Adapt the Hospice Friendly Programme for Residential Care Services for Older People
As part of the Changing Minds programme, a series of seminars are being organized around Ireland in an effort to raise awareness among health and social care professionals of the needs of patients and families living with dementia and some initiatives that are being rolled out to meet those needs. Other seminars are planned for the North East and South East later this year.