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Welcoming new Palliative Care Framework

Posted on: November 17th, 2017
The Irish Hospice Foundation has warmly welcomed a new framework which informs the development of Irish adult palliative care services for the next 3 years.

Seamless Care Pathway

The aim is to ensure a seamless care pathway across inpatient, homecare, nursing home, acute hospital and day care services. It recommends that specialist palliative care services should be available to all patients in need, wherever they are, and whatever their disease. Proposes targeted investment to develop service provision over 3 year timeframe and align service levels as recommended in the ‘Report of the National Advisory Committee on Palliative Care’ (2001).
Irish Hospice Foundation CEO Sharon Foley welcomed the new framework and is looking forward to working in unison with all bodies to ensure specialist palliative care services is available to all patients in need, wherever they are, and whatever their disease.

Palliative Care Services Development Framework Launch 730/3

In the picture: John Hennessy, HSE National Director for Primary Care, Minister for Health Simon Harris, Sheilagh Reaper-Reynolds, HSE National Lead for Palliative Care

The HSE has launched ‘Palliative Care Services Three Year Development Framework - 2017 to 2019’. The Framework informs the development of adult palliative care services, both generalist and specialist, in Ireland for the three-year period from 2017 - 2019. Its aim is to ensure a seamless care pathway across inpatient, homecare, nursing home, acute hospital and day care services.

Palliative care is an active and total approach to care from the point of diagnosis through to death and beyond. It embraces the physical, emotional, social and spiritual elements of care and engages with patients and families as equal decision makers in that care. The Framework being launched today aims to enhance palliative care service delivery in both community and acute hospital services, with a major focus being placed at all times on the delivery of quality person-centred, safe care for patients and their families.

Speaking at the launch Minister for Health Simon Harris said, "Palliative care is a key part of our health service and it is essential that when it comes to end of life people are treated with dignity and respect. These values must be enshrined in the quality of care which is provided to patients and their families. We must also work to ensure that palliative care services are accessible across the country and that there is an integrated pathway across in-patient, homecare, nursing home, acute hospital and day care services. As Minister for Health I welcome the publication of this important three year Framework and I am assured that my Department will continue to work closely with the HSE on the implementation of its recommendations and actions."

Welcoming the publication, John Hennessy, HSE National Director for Primary Care said, “The focus of the Framework was to identify the gaps that exist in the current level of service provision and to present a set of recommendations and actions which over the duration of the Framework (and at times beyond) would seek to address these service issues / deficits, subject to available resources. The Framework looks at palliative care service delivery in both community and acute hospital services, with a major focus being placed at all times on the delivery of quality person-centred, safe care for patients and their families.

“A key objective for the Steering Group was to seek to improve access to palliative care services across the country, particularly in those areas which for the last number of years have been identified as inpatient service ’blackspots’.  There are clear recommendations contained in the Framework which, on implementation, will achieve this objective.”

Sheilagh Reaper-Reynolds, HSE National Lead for Palliative Care said, “This framework captures the core issues that face us in improving palliative care services for people living with life limiting illnesses and their families. Focused consultation took place with many key stakeholders, including service user representative bodies and organisations, healthcare staff and management. This feedback enables us to plan together the development of palliative care services in a much more effective way that is going to meet the needs of our changing population”.

The Framework recommends that specialist palliative care services should be available to all patients in need, wherever they are and whatever their disease. It highlights that there are still areas of the country without an inpatient unit, most notably in the Midlands, the South East, and the North East. Other areas do not have the recommended bed complement and/or the recommended staffing levels. In addressing these shortcomings, the Framework sets out recommendations to ensure that by 2021, there will be equitable access to specialist inpatient palliative care services throughout the country.

It notes that full access to palliative care services for patients with non-malignant disease is now the norm in the sector, with service providers accepting referrals based on need rather than condition. While the work of making palliative care available to patients with non-cancer conditions must continue, attention should now also extend to the needs of vulnerable populations such as people with disabilities, migrants, and prisoners.

The Framework states that by investing in properly resourced community services to care for patients with both malignant and non-malignant diseases, particularly in the last three months of life, this leads to reduced inappropriate hospital admissions, more appropriate care pathways and improved experience for patients and their families.

The Framework complements and builds on the government’s palliative care services policy document ‘Report of the National Advisory Committee on Palliative Care’, published in 2001. It proposes targeted investment to develop palliative care service provision over its timeframe and align service levels with those recommended in the 2001 Report.

Download the report.

Children – The Forgotten Mourner – Bereaved Children’s Awareness Week Starts Today

Posted on: November 13th, 2017
Bereaved Children’s Awareness Week (BCAW) commences today Monday to highlight the needs of bereaved children and how to support them through difficult periods of loss. Organised by The Irish Childhood Bereavement Network (ICBN), the week coincides with Universal Children’s Day and helps those supporting bereaved children including parents, carers, teachers, sports groups, faith communities or friends in their local communities.

'Children Grieve Too' is Key Theme

“‘Children Grieve Too’ is the key message for next 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.
“Unlike adults, children dip in and out of grief which is often termed ‘puddle grief’. It can be intermittent and intense but also can pass quickly, distracted by friends and activities. Children also tend to protect parents from their pain and upset. This often leaves their grief unrecognised.
Grief in childhood and teens makes the young person feel different from their peers. Children try to control their grief holding it in and pretending nothing has happened. This can be isolating. Each child in a family grieves differently due to their personality, gender and the relationship they had with the person who has died,” said Ms Carroll. 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.

For 40 years I had pent-up anger about not being allowed to say goodbye to my father

Britain’s first Children’s Commissioner Professor Sir Al Aynsley Green is speaking in Beaumont Hospital, Dublin on Tuesday as part of BCAW about meeting the needs of children where someone close to them dies in an adult acute hospital.
Sir Al commented: “For 40 years I had pent-up anger about not being allowed to say goodbye to my father before he died when I was 10 years old; nor see his body before the funeral. We know there is a huge toll of unresolved grief in adults bereaved as a child of someone they love.
There needs to be more focus on how death is handled across society especially in supporting grieving children and we need to ‘Think Adult, Think Child’. In other words, making sure those caring for a dying adult ask what does the death mean for the children in the family. There is hard evidence of what’s most important for bereaved children; death needs to be seen as part of life, children’s fears and anxieties need to be addressed and children need to be listened to carefully to encourage them to talk about what they feel.

'Think Adult, Think Child'

“I will be speaking in Beaumont Hospital on Tuesday about ‘Think Adult, Think Child’ for health care professionals and meeting the needs of children where someone close to them dies in an adult acute hospital.” Events are taking place nationwide throughout the week. The ICBN is hosted by the Irish Hospice Foundation and funded together with Tusla. See www.childhoodbereavement.ie for more info.  

Ireland’s First Standards for Childhood Bereavement Care Launched

Posted on: November 12th, 2017
6 November, Dublin – Ireland’s first ever standards for childhood bereavement care were launched by Dr Niall Muldoon, Ombudsman for Children in The Irish Hospice Foundation office on Nassau Street, Dublin.

A Vision for Bereavement Support for Children

‘Standards for Supporting Bereaved Children and Young People - A Framework for Development’ was developed by the Irish Childhood Bereavement Network (ICBN) following public and professional consultation. The standards illustrate a multi-layered vision for bereavement support to emphasise the highest level of care that our bereaved children and young people deserve.
'This support is key to helping children suffering from bereavement early and effectively'
Dr Niall Muldoon, Ombudsman for Children said: "I am delighted to launch Ireland’s first ever standards for childhood bereavement care. I very much support the development of these standards which will help support our children and young people as they try to deal with the trauma that is bereavement. I am very pleased to see that counselling services in the community have been highlighted as essential in the standards. This support is key to helping children suffering from bereavement early and effectively. I look forward to the implementation of these standards in the best interest of children and young people all over Ireland."

Helping a Child in your Family, Classroom or Community

The ICBN say the standards will be used as a benchmark for planning, provision and quality review. Speaking today, Anne Marie Jones, Chair of the ICBN Standards Group said: “This resource will be helpful to adults who wonder what they can do for a child in their family, a child in their classroom, a child in their GAA club or the bereaved children in their political constituency. It is a vision for how we as a society can recognise and support bereavement children.
'To ensure that our bereaved children grow into strong and mentally healthy young people'
We invite a strong national recognition of the critical importance of this vision, to ensure that our bereaved children grow into strong and mentally healthy young people who have learned the skills that they need and been provided the timely support that they may need, to journey through their bereavement.”   This framework is directed at all adults, professionals, volunteer organisations and policy makers who are concerned about bereaved children and young people. ICBN will review these standards and associated criteria every three years in the expectation that additional emphases, criteria and examples of achievement can be added.

Bereaved Children's Awareness Week, 13th - 18th November

Today’s launch also kick-starts Bereaved Children’s Awareness Week (13-18th November) which promotes greater awareness and understanding of children’s grief. Early and consistent healthy support within families and communities can lead to better outcomes for a bereaved child. Download the Standards for Supporting Bereaved Children and Young People - A Framework for Development here    

Annual November Public Information Evening on Bereavement 2017

Posted on: November 9th, 2017
Our annual November public information evening on bereavement was held on 2nd November.  This annual event aims to provide information about grief and the range of supports available to bereaved people.  The evening opened with an introduction followed by a number of talks and video presentations.  Guest speaker Laura Kennedy (Columnist with The Irish Times, author of the personal reflection column ‘Leavetaking’) spoke on the theme ‘Living with Loss’.  At the event a number of voluntary bereavement support services and professional therapeutic services were represented (listed below).  The audience had an opportunity to visit these stands and be informed of what services they provide.  Admission is free to this annual November event which is open to all members of the public, in particular to those that have been bereaved.
  If you would like to be notified of this event in the future please contact Iris Murray Tel 01 679 3188 email [email protected]
A Little Lifetime Foundation, Anam Cara Parental & Sibling Bereavement Support, Barnardos Children’s Bereavement Service, Beginning Experience, Bethany Bereavement Support Group, Citizens Information Service, Féileacáin (Stillbirth & Neonatal Death Association of Ireland), FirstLight, Irish Childhood Bereavement Network, Irish Hospice Foundation, Living Links, Miscarriage Association of Ireland, PCI Counselling Service, Pieta House Bereavement Services, Purple House Cancer Support, Rainbows Ireland, SAH (Support After Homicide), Turas Le Cheile Bereavement Support Service, Turning Point, Village Counselling Service

Have you sent your completed CHY3 Cert back to us? Clock is ticking…

Posted on: October 18th, 2017

A while ago we sent our generous supporters  a reminder letter about the charity tax back scheme and a CHY3 cert enclosed. If you received it, please don’t wait, return it today!

We will be submitting our claim to the Revenue Commissioners in the coming weeks so it’s vital your form comes in before that. It only takes a minute. We’ve made it as easy as possible. In just three quick steps you can release the full potential of your generous gift to us, so please complete, sign and return the form we sent you. It’s as simple as that. And it still won’t cost you a single cent more!

Thank you for your prompt response!

For more information on our Tax Back Campaign please click HERE

Welcoming Charity VAT Compensation Scheme in Budget 2018

Posted on: October 10th, 2017

The Irish Hospice Foundation has warmly welcomed the news in Budget 2018 that a Charity VAT Compensation Scheme will be introduced. This follows strong campaigning by the Irish Hospice Foundation to help ease the burden on hospices nationwide.

The Charities VAT Compensation Scheme announced today will take effect from 1 January 2018 but will be paid one year in arrears i.e. in 2019 charities will be able to reclaim some element of the VAT costs arising in 2018. Charities will be entitled to a refund of a proportion of their VAT costs based on the level of non-public funding they receive. The scheme, including the amount provided in the fund, will be subject to review after three years. Claims under the scheme cannot be made until 2019 as it will take some time for the Revenue to establish IT and administrative systems.

Below is the essence of our campaigning and an article we wrote previous to the Budget:

Reducing the Burden on Charities

Payment of VAT is a serious burden for hospices nationally, especially those where a capital build is planned, explains The Irish Hospice Foundation (IHF). Capital builds are underway or planned in Dublin – North and South, Limerick, Galway, Mayo/Roscommon, Wicklow and Waterford, with long term plans for the Midlands, Drogheda and Cavan. It is current government policy that the capital costs of hospice units are funded from charitable sources – and to date voluntary hospice groups have funded the building of these vital facilities.
IHF CEO Sharon Foley said: "The requirement to pay VAT on build and fit-out expenditures adds a huge burden to hospices and increases their fundraising challenges – already strained in the current climate. As an example, if a capital build costs €11m – 13% of this represents VAT – a staggering €126,500 for each hospice.  In addition the fit-out of each unit might cost €2m, so VAT will represent an additional €37,000 for the hospice. These costs should not be necessary for hospices and other such charities reliant on charitable fundraising from the public.
The IHF feels the effects of the imposition of VAT on charities. In many cases the VAT payments far exceed any Exchequer support given through the Government Charitable Donation Scheme and resulting in an annual net loss." The IHF is a member of Charities Institute Ireland (Cii) which has been campaigning for measures to reduce the burden of VAT on charities and has participated, with Finance and Revenue officials, on a Working Group set up by then Finance Minister Noonan in 2015 to look into the issue. "The Working Group Report confirmed that there are no legal obstacles to the introduction of a VAT Compensation Scheme in Ireland. In his Budget 2017 speech, Minister Noonan said that he had asked his officials to engage again with Cii with a view to reviewing the options. Earlier this year Cii provided his officials with a comprehensive updated report on the impact of VAT on charities in Ireland."

Political Support

From cross party discussions in recent weeks, Cii believes that there is significant political support across the Oireachtas for a VAT Compensation Scheme as envisaged by the Working Group.
"We hope that Budget 2018 will finally recognise the inequity, in a modern and progressive society, of levying a tax (VAT) on regulated and focused organisations dedicated to meeting the needs of our most vulnerable.
As we now approach Budget 2018, we are asking Government to bring this issue to a positive resolution and support the Irish Hospice Foundation and the voluntary hospice movement in removing the burden of VAT on charities," concluded Ms Foley.

Death and Taxes in Spotlight at #Forum2017

Posted on: October 10th, 2017
October 10th 2017: Ireland’s first Charter on Dying, Death and Bereavement was launched today at the ‘Forum on End of Life’ conference organised by the Irish Hospice Foundation (IHF) in Dublin Castle.

‘The People’s Charter on Dying, Death and Bereavement in Ireland’ is solidly based on results of the IHF ‘Have Your Say’ survey where almost 2,600 people across Ireland shared their personal views last September on what they feel is needed for a good death and in bereavement. It is apt that death and taxes are in the spotlight today, because these are the only two certainties in life.

People want to live and die in an Ireland where death is talked about and not hidden away. People want to prepare for what lies ahead and get relief from pain, no matter the location or condition. People who are bereaved want space and time to grieve, talk and remember. These are samples of insightful and heartfelt survey findings.
Speaking from Dublin Castle, IHF CEO Sharon Foley said: “This important charter was formed by public opinion and gives us a powerful tool to bring to Government. The charter received overwhelming support today from 350 delegates. The people of Ireland want to have their say about end of life. Being treated with and maintaining dignity matters to people. Many described their fear of pain, with access to adequate pain relief being vital. Care, dignity, comfort and pain were recurring words used by people.  We will continue to feed and nurture this charter so it grows and is responsive to what people want. More people had their say today and we will continue to lead the discussion.”

Mrs Justice Catherine McGuinness Speaks Passionately

Mrs Justice Catherine McGuinness is Chair of the National Council of the Forum on End of Life in Ireland and spoke passionately at today’s forum to over 350 delegates.
“As citizens and as a society we need to break the taboo that surrounds death. We need to assert clearly that when it comes to end-of-life we need more rights than the last rites. We need to support each other to develop a greater sense of personal responsibility and put effective systems in place to enable people to act responsibly. Talking about death is a useful first step. Forum enables that conversation engaging in individual and collective futures.”  

Please credit Paul Sherwood
Pictured are David McCullagh RTE, who chaired the morning session, Sharon Foley, CEO, IHF, Professor Jenny Kitzinger, University of Cardiff and Mrs Justice Catherine McGuinness, at today’s launch of ‘The People’s Charter on Dying, Death and Bereavement in Ireland’

Advance Care Directive

Keynote speaker was Professor Jenny Kitzinger from Cardiff University who co-directs the ‘Coma and Disorders of Consciousness Research Centre’. Jenny spoke about challenges around how decisions are made when the patient has lost the ability to make choices for themselves. Jenny was speaking about her own research for the Welsh Government - and also speaking from the heart about her own personal experience with sister Polly Kitzinger. “There is a huge taboo, fear and superstition in talking about death and dying but unless we do talk about it, we risk leaving our family vulnerable to maltreatment. It’s estimated that one in three of us will face end of life unable to make decisions, this could be a car crash in your 20’s with devastating consequences or extreme dementia in your 80’s.
People should have the right to the best support and care possible at end of life. Many people may lose their capacity and ability to make their own decisions which is why we should think about it, talk about it and tell people about our choices and consider writing an advance care directive too,” concluded Professor Kitzinger.
Forum 2017 is the 5th biennial National Conference of the Forum on End of Life in Ireland. The Forum has been kindly supported by UPS Ireland and its employees.

Here’s the Have Your Say report 

‘The People’s Charter on Dying, Death and Bereavement in Ireland’ can be viewed here.

     

Living with Loss

Posted on: September 28th, 2017

 

Our next annual November public information evening on bereavement will be held on Thursday, 2nd November 2017.  This annual event aims to provide information about grief and the range of supports available to bereaved people.  The evening will open with an introduction followed by a number of talks and video presentations.  Guest speaker Laura Kennedy (Columnist with The Irish Times) will speak on the theme ‘Living with Loss’.  At the event a number of voluntary bereavement support services and Professional Therapeutic Services will be represented.  The audience will have an opportunity to visit these stands and be informed of what services they provide.  Admission is free to this annual November event which is open to all members of the public, in particular to those that have been bereaved.  If you have any queries please contact Iris Murray Tel 01 679 3188 email [email protected]      

This public event is free to attend.  Bookings are not necessary.

Welcoming “Finite Lives” Report

Posted on: May 19th, 2017

The Irish Hospice Foundation welcomes the newly published report Finite Lives which examines State Services around dying, death and bereavement.

         
  Angela Edghill, Irish Hospice Foundation, Advocacy and Public Engagement Manager said the ground breaking report is the first of its kind and proves that dying is everyone’s business. Ms Edghill added: “It provides great evidence for a more coordinated and strategic approach to dying, death and bereavement by all of the agencies and Departments of State. Only good can come of this report since the issues it examines affect us all, without exception - but only if the State acts on Senator O'Donnell's sensible, practical and reasonable recommendations.”
 
The report makes 16 key recommendations including the promotion of the Irish Hospice Foundation’s Think Ahead planning tool. The purpose of the Think Ahead document is to guide members of the public in discussing and recording their preferences in the event of emergency, serious illness or death.
Further information is available on www.thinkahead.ie Finite Lives by Senator Marie-Louise O’Donnell was launched by An Taoiseach Enda Kenny this afternoon (Wednesday, 17 May) at Government Buildings.  

The report is available here for download.

 

C’mon the Camino with Katherine Lynch

Posted on: April 18th, 2017

From Dancing Shoes to Hiking Boots

Make every step count for hospice care this September by walking the Camino de Santiago with actress Katherine Lynch in aid of the Irish Hospice Foundation (IHF). The Leitrim-native will walk the scenic coasts of Portugal and northern Spain to support hospice care and IHF programmes such as Nurses for Night Care and Hospice Friendly Hospital Programme (HFH). Katherine's idonate link if you wish to support is here. The IHF event takes place from September 24th to 1st October taking in beaches, rolling hills and gentle, flat paths with walking distances of approximately 20km daily. This section of the Camino is located in the region of Galicia – a region also known as the ‘Ireland of Spain’.  
Helen McVeigh, IHF Director of Fundraising, commented: “By stepping out on the Camino you are embarking on a personal challenge but also supporting people nationwide who are facing death or bereavement. Our vision is for no one to face these difficult times without the care and support they need. This is your chance to make every step matter.
Katherine is an amazing ambassador and we’re delighted to have such a high profile personality leading the way. Nurses for Night Care service provided 2,027 nights of care in 2016 and helped 600 families. 48 hospitals have been involved in our HFH programme since it was founded 10 years ago.”

Flights, accommodation and full board are included and full details can be found here or by calling 01 6793188.

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