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When Someone You Care About is Dying in Hospital: What to Expect booklet launched

Posted on: September 19th, 2018
The new information booklet, When someone you care about is dying in hospital – What to expect was officially launched today in Dublin (Thursday 20 September, 2018).
It was revealed alongside the launch of the Ombudsman’s report, A Good Death: Progress Report, into the developments in end-of-life care in Irish hospitals.
The new booklet is the direct result of one of the key findings of the 2014 ‘A Good Death’ report citing poor communication as a feature of each complaint received about end-of-life care.
A joint Irish Hospice Foundation/HSE initiative, the booklet is a new communication resource to support patients and families at such an emotional and challenging time. It offers practical advice on things like coping with changes in the person who is dying, talking about feelings, what to do if someone dies while you are with them, looking after yourself etc.
The booklet is the work of the joint HSE/Hospice Friendly Hospitals Oversight Committee. Formed in 2017, one of their key priorities is to reduce the variations in end-of-life care received across Ireland.
43% of people die in hospitals every year. The Hospice Friendly Hospitals Programme seeks to ensure that end-of-life, palliative and bereavement care are central to the everyday business of hospitals across Ireland.
Speaking at the launch, Professor Cillian Twomey, Chair of the HSE/HFH Oversight Committee said: “This is the Oversight Committee’s first step to improve public information and reduce variations in end-of-life care across Ireland. It was developed through consultation to provide clear and general information to patients and their families.  As the Ombudsman’s Good Death report continues to highlight poor communication as feature in complaints received, we hope this booklet will play a role in reducing the gap between the message professionals intended to give and what is understood.”
Speaking at today’s event Liam Woods, HSE National Director Acute Operations said: “End-of-life care is a very important area for the HSE. Over 11,000 people die in hospital each year and our services and our staff are part of the experience of so many families at this difficult and emotional time. I am very encouraged that the Ombudsman’s second report has shown clear signs of improvement across our hospitals.
"This new information leaflet When someone you care about is dying in hospital is intended to provide practical information to families during a challenging and emotional time, and to complement the approach of our staff as they support and assist families. The HSE continues to work very closely with a range of partner organisations to improve how we deal with end of life issues and in particular I would like the acknowledge the work of the Irish Hospice Foundation in this area. The Hospice Friendly Hospice Programme, running for over 10 years now with 45 public and private hospitals participating has been a long term support for the HSE. The expertise and support this Programme provides has been invaluable to us and allows us to bring staff together to learn from each other. I am particularly grateful to the group for the work undertaken to produce this new booklet”.
You can download ‘When someone you care about is dying in hospital – What to expect’ here
To read A Good Death: A Progress Report, click here.

“How beautiful the last days of somebody’s life can be”

Posted on: September 7th, 2018
     
After tearfully saying farewell to her beloved 12-year-old nephew, Luke, Fiona Mulchrone found her calling.
Some of the participants of the 2018 IHF Cycle travelling through the Slovenian countryside Paul Kimmage
Having sat by little Luke’s bedside as he died, Fiona became inspired to become a Nurse for Night Care, as her family availed of night nursing in his final days.
“I’ll always remember how grateful we were that we had the night service available to us,” Fiona recalls. “It was then that I decided I wanted to work in night nursing. I wanted to help other families.”
As part of the IHF’s Nurses for Night Care service, Fiona works at night in the homes of people dying from non-cancer illnesses; making patients as comfortable as possible and providing much needed support and rest for family.
“The Nurse for Night Care has an influence over the whole ambiance and atmosphere. You’re trying to make the last couple of days as memorable and as easy for everybody as you can.
“It’s a privilege to be there with somebody who is dying, and it’s lovely to be with their family at this time. They’re so thankful. They’re looking at you like you’re their angel. You’re their rock really.”
Fiona provides crucial emotional support to the person who is dying, and has many heartfelt conversations with patients about their feelings and wishes.
“I once treated a man who had no family. He had a small dog that was his life. He told me all about his dog and how much love he had for him. He told me that he wanted to die at home with him by his side. He died the life he lived.”
While the death of a loved one is devastating for family members, Fiona believes that when somebody is able to die in their own home, it can bring about many positive emotions and memories too.
“The last couple of days you hear so many stories, good laughs, and you see so much love. The power of love is overwhelming.
“It’s incredible how beautiful the last few days of somebody’s life can be.”

Families helping families

Posted on: September 7th, 2018
   

For the fourth time, sports journalist and former professional cyclist, Paul Kimmage has taken part in the IHF Cycle in support of Nurses for Night Care.

“It’s a very noble cause,” says Paul. “Everybody knows somebody, whether it’s family or friends, who’ve had an experience where they’ve needed Nurses for Night Care.”
This year, 73 people cycled 560km from Portoroz in Slovenia to Treviso in Italy. Many of the riders returned from previous IHF Cycles, which have raised €1.8 million for the IHF since 2009, equating to 45,000 hours of night care.
“Many of the guys are personally invested in it through direct experience. Whether it was a brother or a mother or whoever, they’d seen how valuable the Nurses for Night Care service was during that time.”
For Paul, it’s his contribution towards those affected by end of life that has kept him coming back each year.
“Journalism is a very self-centered, absorbing business. Professional cycling was the same, where all you ever thought about was yourself. This is for somebody else, and that’s rewarding and is a nice change.”
For the past two years, the IHF Cycle has been a family affair for Paul, with his daughter, Evelyn, joining him.
“She’s been a great addition to the event and it means a lot to have her there with me. Knowing that we are supporting families through tough times is very important to us.”
For information on the 2019 IHF Cycle, please contact Louise on 01 679 3188 or email louise.mccarron@hospicefoundation.ie
This event could not take place without the generosity of our sponsors, Kingspan.

“It is ok to talk about death”

Posted on: September 7th, 2018

In Ireland, there are over 28,000 people living in residential care, with approximately 7,000 dying each year in these settings.

CEOL (Compassionate End of Life), an IHF programme, helps residential care centers, including nursing homes, across Ireland, identify and implement changes to enhance end-of-life care for their residents, families, and staff.
Over 100 centers have already participated in CEOL with 1,200 staff receiving training. One of these, St Joseph’s Care Centre in Longford, is already seeing great improvements in how they care for those at end of life, particularly with regards to discussing the topic of death with residents.
“It was a taboo subject for a long time,” says Karen Johnston, CEOL Co-ordinator for St Joseph’s. “Some people shied away from talking about death, but with the IHF’s support, we’ve been able to start having meaningful discussions about it with the residents. Staff are now more confident and are aware that it is ok to talk about death.”
Another improvement at St Joseph’s has been the introduction of a guard of honor after a resident has passed away.
“Everyone is now brought out through the front door of the care center. The residents and staff form a guard of honor and it gives everyone the opportunity to reflect, pay their respects, and acknowledge that this person had a life and spent time with us in St Joseph’s.”
The IHF will continue to work with nursing homes to reach more people at end of life.

End-of-Life Care Vision launched at Cluain Lir Community Nursing Unit

Posted on: August 16th, 2018
Residents and staff at Cluain Lir Community Nursing Unit in Mullingar officially launched their End-of-Life Care Vision today (Thursday 16 August).
The project is a central part of their work with CEOL (Compassionate End of Life), a programme run by the Irish Hospice Foundation (IHF). CEOL is a quality improvement programme which aims to support staff in providing the best end-of-life care for people living in residential care centres in Ireland.
Cluain Lir began working on CEOL in 2016 when they participated in some of the first programme workshops. It was evident from the beginning there was a very person-centred approach to care there and CEOL presented an opportunity for staff to develop this further with an even more focussed approach to end-of-life care, in particular.
The Cluain Lir CEOL Group were keen, from the very start, that the residents would be included in developing the end-of-life care vision. Jolene Dervin, the Speech and Language Therapist, volunteered to lead on this and as a result all residents, including residents with communication difficulties were supported to participate.
The formation of a vision for end-of-life care is a key component of CEOL. End-of-life care is everyone’s business and this is reflected through the creation of a vision that is developed and owned by all residents and staff.
A further extension of the Cluain Lir vision was led by Karina Browne, a Multi-Task Attendant with a special interest in activities. Working with residents and staff, she created two pieces of artwork and pictures of trees, the leaves of which are the thumbprints of residents and staff.
Speaking at today’s launch, the CEOL Development Co-ordinator for the Midlands region Joanne Brennan said: “Completing these projects has enabled the opening up of discussions between residents and staff.  Displaying their vision and artwork is a powerful public statement that end-of-life care is important to everyone in Cluain Lir.”
“It has been an absolute pleasure working with them on the CEOL Programme.  To see how they have whole-heartedly welcomed and embraced the programme, grown and developed their CEOL Group and how it is having a real impact on the quality of not just end-of-life care, but on all care for their residents is truly inspirational.”
Every year over 7,500 people in Ireland die in nursing homes and residential care centres. CEOL, launched in 2017, is now active in 100 plus sites across the country.
For more information about CEOL, please click here.

Living With Loss 2018: Public Information Evening on Bereavement

Posted on: August 15th, 2018
 
Our next public information evening on bereavement will be held on Thursday, 1st November 2018 at the Alex Hotel in Dublin.
Our guest speaker Niamh Fitzpatrick (Psychologist and sister of Capt. Dara Fitzpatrick) will focus on the theme: ‘Living with Loss, Observations on grief from the inside out.'
Admission is free and no booking is required. It is open to all members of the public, in particular to those that have been bereaved
For more more information, please click here.

Race Day 2018

Posted on: August 1st, 2018
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Join us for some craic at the track on Saturday, October 20th and help raise money for our vital work.

The day will kick off with a drinks reception at 12 noon, followed by a delicious three course luncheon.

RTE Broadcaster Tracy Piggott will be our MC for the afternoon and guests will enjoy a private tote and tipsters in the Pavilion.

Details of how to reach Leopardstown and parking can be found on their website here

Gates Open at 12 noon for our Guests and our function commences then with a drinks reception with a fantastic lunch to follow at approx. 1pm

First race commences 1.50pm with our last race approx. 5pm (these times are subject to confirmation )

We will have entertainment from 6pm (as we hope people will take to the dance floor) and the bar will close at 11pm.

Dress code is smart / smart casual – a great excuse to get dressed up for a wonderful day out.

We have a “vault” fundraiser, a raffle after lunch and a silent auction – always great fundraisers and a bit of fun!

Will will have our keynote guest speaker and our sponsors will say a few words on the day.

 

On the day, there will be a professional photographer. Please let us know if you would prefer not to be included in these promotional shots.

There will also be a raffle, silent auction and a vault on the day with fabulous prizes to be won.

Buy a table of 10 or 12, tickets available ONLINE NOW

Alternatively, please contact Louise McCarron on 01 679 3188 or louise.mccarron@hospicefoundation.ie to book your place.

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Invitation to Tender: Panel of Architectural Advisors required

Posted on: July 24th, 2018
We require a panel of regional architecture advisors to support hospitals across Ireland. Their primary role is to provide design expertise to Design & Dignity and affiliated hospitals and ensure each hospital project complies with the Design & Dignity Guidelines and is completed to a high standard.
The Design & Dignity Project is a partnership project of the Irish Hospice Foundation and HSE Estates. It originated in the Hospice Friendly Hospitals (HFH) Programme which was launched in 2007 and continues to be a critical aspect of the HFH Programme. The aim of the Design & Dignity Project is to transform the way hospitals are designed for people at the end of their lives and their families.
More info here.

Pre-budget Submission 2019: Children’s Palliative Care

Posted on: July 11th, 2018

Delivering their Pre-Budget Submission on Children’s Palliative Care to Government today are: Sharon Foley, Sarah O’Callaghan, Head of Marketing and Communications at LauraLynn, Minister for Health Simon Harris TD, Dr Mary Devins and Dr Maeve O’Reilly

 
A coalition of children’s palliative care service providers and consultants in specialist paediatric palliative care is calling on the Government to prioritise the next steps in Children’s Palliative Care programme in Budget 2019. Crucially, they encourage the development of multi-annual budgeting to prevent a stop-start approach to these vital services.
The group made up of Sharon Foley, CEO Irish Hospice Foundation (IHF), Dr. Mary Devins, Consultant Paediatrician with a Special Interest in Paediatric Palliative Medicine, Dr. Maeve O’Reilly & Dr. Marie Twomey, Consultants in Palliative Medicine, Our Lady’s Children’s Hospital Crumlin and St. Luke’s Hospital, Claire Quinn, Lecturer and Programme Director MHSc /PGD Health Sciences (Children’s Palliative/ Complex Care) at the School of Nursing and Midwifery, NUI Galway, Orla O’Brien, CEO, LauraLynn, Ireland’s Children’s Hospice and interim CEO of the Jack and Jill Foundation, Carmel Doyle launched their Pre-Budget Submission today.
The group calls on the Government to start planning in 2019 for a more strategic approach to future budgets to address children's palliative care needs, in order to achieve a full and comprehensive service provision and support network throughout the country.  Commitment to multi-annual budget provision would be a practical way to ensure the smooth roll out of services. Without such an approach, the group says, development will be - at best - piecemeal and uneven and at worst will undermine many of the very welcome positive developments.
Their priorities for progress in Budget 2019 include:
  • Re-establishing a National Development Committee
  • The Employment of the National Programme Manager
  • The extension of the Clinical Nurse Co-ordinators Service for children with life-limiting illnesses,
  • The further development of clinical palliative care services in our children's hospitals
  • Effective integration of the Children’s Palliative Care Programme and service providers, including the funding required for community-based voluntary services.
  • The need for an agreed roadmap for further development of priorities in children's palliative care and secure funding.
 These priorities have been derived from recommendations for service development identified in the recently published National Model of Paediatric Care and also include further recommendations arising from the Evaluation of the Children’s Palliative Care Programme, published in 2016.
Earlier this year, the coalition met with the Minister for Health Simon Harris to highlight their concerns over the slow progress of a number of the key recommendations in the National Evaluation report, which was launched by the Minister himself.
Speaking today Sharon Foley, CEO of the Irish Hospice Foundation said: “We were very encouraged by our meeting with Minister Harris in February and his commitment to implementing the next steps of the Children’s Palliative Care programme. He agreed to a new interim National Development Committee (NDC) on Children’s Palliative Care being put in place as well as the full NDC committee being established by the summer and a new set of national priorities being drawn up by the Autumn.”
“These developments are welcome but there are further unmet needs that need to be addressed. Nearly 4000 children are living with life-limiting illnesses in Ireland today and many have definitive palliative and end of life care requirements. It is vital there is no further delay so these children and their families can get the care they both need and deserve.”
Dr. Mary Devins commented, “We have the evidence from the evaluation and from parents, children and wider families of the benefits of the current service provision for children’s palliative care.  We want to see the best possible services available to all children with life-limiting illness and their families in every county in the country and the reassurance that these services will continue into the future.  At their time of greatest uncertainty, what these families need is certainty – certainty that their child will receive the best care and that they will receive the best support.  We ask the Government to help provide that certainty in Budget 2019 and in future years.”
In Ireland, currently:
  • Approximately 370 children die each year with life-limiting conditions (LLC).
  • Of these deaths, 57% occur in the first year of life.
  • Estimates indicate there are nearly 4000 children with LLC in Ireland today[1].
  • These children have exceptional and unique healthcare requirements and it is estimated that at any one time 50%[2] (approx. 1,960) of these children will require active paediatric palliative care.
A full copy of the Pre-budget submission is available here.
Read the Evaluation of the Children’s Palliative Care Programme here.
[1] https://www.imo.ie/news-media/publications/March-2015-Irish-Medical-Journal.pdf. Accessed Oct 2017.
[2] Fraser LK, Miller, M Hain, R, Normand, P., Aldridge, J., McKinney, P.,Parslow, R. (2002) Rising National Prevalence of life-Limiting Conditions in Children in England. Pediatrics 2012;129:E923-E929.

2018 Summer Raffle winners announced!

Posted on: July 11th, 2018
The winners of our 2018 Summer Raffle have been chosen!
Thank you to all our wonderful supporters who sold tickets on our behalf and to those who very very generously bought them.
The full list of winners is here.