Talking and being with people who are bereaved from NES on Vimeo.
The results of the first National End of Life Survey (NELS) have been published recently.
The survey was carried out in the Republic of Ireland in 2023; 4,570 bereaved family members and friends participated in the survey. They were asked about end-of-life care provided to relatives or friends in the last months of life across different care settings.
The findings of the NELS provide valuable insights into the care journeys of those who received end-of-life care during the sample period. The people who died during this period typically received care in multiple and varied settings, including hospitals, nursing homes, hospices and in their homes. It was clear that every end-of-life care journey is unique.
The HSE will use the survey findings to inform the development of quality improvement plans at national and local levels. These quality improvement plans will describe the steps that the HSE will take to address the issues highlighted by participants in the survey. To view the HSE response to the findings of the National End of Life Survey here
The All Ireland Institute of Hospice and Palliative Care welcomes the report and is proud to have supported different stages of the process via the feedback of our volunteer group, Voices4Care, the CEO’s participation in the NELS Board Group as well as the Programme Manager’s participation in the NELS Advisory Group.
To find out more about the National End of Life Survey, read the full report on www.yourexperience.ie, watch the animation or visit Instagram, X (Twitter) and Facebook.
Advance Care Planning
Animated Explainer Videos Available
4 short new videos developed by the Irish Hospice Foundation are available to help explain advance care planning to patients and staff. They are:
–What is Advance Care Planning?
–What is an Advance Healthcare Directive?
–Advance Healthcare Directives Protect Healthcare Workers
Credit: Irish Hospice Foundation
Energy Hardship and Palliative Care – Understanding issues for people with palliative care needs at home and promoting actions
The aim of this project is to examine and address the evidence gap in energy hardship for people with a life limiting cancer diagnosis receiving palliative care at home and to make informed recommendations that will be shared with key decision-makers who could address this economic inequality.
The objectives are to:
- Examine home energy usage and needs of people receiving palliative home care by exploring the views of home care nurses and family carers, patients, energy providers and energy regulators on fuel needs and energy hardship in this vulnerable cohort of people with life-limiting cancer diagnoses;
- Increase awareness among key stakeholders and decision-makers of home energy requirements for people with palliative care needs.
- Make informed recommendations and share with policymakers and energy providers the project evidence to influence fairer policy decisions and measures to address the home energy needs of those receiving palliative care at home.
This project is exploring home energy needs and usage experiences of people with palliative care needs and their family carers. People with palliative care needs and families will be invited to participate in interviews with the research team.
The project has also asked home care nurses from Milford Care Centre Limerick, Waterford Hospice, and the Irish Cancer Society national night nursing service to complete an online survey. Energy providers and regulators have also been invited to take part in interviews with the research team.
Full-text of the report is available Click here
Milford Care Centre’s Research in 2023
Some of the Published Research from Staff in Milford Care Centre in 2023.
| 1. | Palliative care services for children with life-limiting conditions. Hayden J, Larkin MA, Noonan H, Conroy M, Twomey F, O’Reilly V, Gallagher S. Ir J Med Sci. 2023 Jun;192(3):1285-1290. doi: 10.1007/s11845-022-03134-3. Epub 2022 Aug 26. PMID: 36028780 |
| 2. | Virtual reality use and patient outcomes in palliative care: A scoping review. Moloney M, Doody O, O’Reilly M, Lucey M, Callinan J, Exton C, Colreavy S, O’Mahony F, Meskell P, Coffey A. Digit Health. 2023 Nov 1;9:20552076231207574. doi: 10.1177/20552076231207574. eCollection 2023 Jan-Dec. PMID: 37928326 Free PMC article. Review. |
| 3. | Red cell transfusion benefits in oncology, haematology and palliative medicine populations: a narrative review. Duffy E, O’Mahony F, Burke C, Conneely A, O’Connell H, Twomey F. BMJ Support Palliat Care. 2023 Sep;13(3):291-297. doi: 10.1136/bmjspcare-2021-003052. Epub 2021 Sep 2. PMID: 34475134 Review. |
| 4. | Specialist palliative care out of hours telephone advice in Ireland: a national survey. Coffey S, Twomey F, Callinan J, O’Reilly M, Coffey A, Holmes J, Lucey M. BMJ Support Palliat Care. 2023 May 8:spcare-2022-004141. doi: 10.1136/spcare-2022-004141. Online ahead of print. PMID: 37156602 |
| 5. | Using a validated case mix tool for use in the telephone-assisted triage of patients in a specialist palliative care community setting: a consecutive case series. Hough E, Lucey M, O’Reilly M, Featherstone H, Twomey F, Coffey S. BMJ Support Palliat Care. 2023 Feb 28:spcare-2022-004102. doi: 10.1136/spcare-2022-004102. Online ahead of print. PMID: 36854615 |
| 6. | Healthcare practitioners’ perspectives of providing palliative care to patients from culturally diverse backgrounds: a qualitative systematic review. Burke C, Doody O, Lloyd B. BMC Palliat Care. 2023 Nov 17;22(1):182. doi: 10.1186/s12904-023-01285-3. PMID: 37978500 Free PMC article. |
| 7. | Potentially inappropriate prescribing in older adults with cancer receiving specialist palliative care: a retrospective observational study. Murphy M, Bennett K, Wright M, O’Reilly M, Conroy M, Hughes C, McLean S, Cadogan CA. Int J Clin Pharm. 2023 Feb;45(1):174-183. doi: 10.1007/s11096-022-01506-4. Epub 2022 Nov 15. PMID: 36378404 Free PMC article. |
| 8. | “The Bird effect”-positive impact of celebrity health disclosure on public awareness and soaring interest in motor neurone disease. Curran MG, Larkin MA. Ir J Med Sci. 2023 Oct 16. doi: 10.1007/s11845-023-03552-x. Online ahead of print. PMID: 37845581 No abstract available. |
| 9. | The impact of healthcare assistant education on pressure ulcer prevention: a systematic review. O’Brien N, Moore Z, Avsar P, Patton D, Nugent L, O’Connor T. J Wound Care. 2023 Jul 1;32(Sup7a):cxv-cxxvii. doi: 10.12968/jowc.2023.32.Sup7a.cxv. PMID: 37405970 |
National Frailty Education Programme Report: The Fundamentals of Frailty
The National Frailty Education is an accumulation of the work of healthcare professionals from research and practice, who understood that colleagues outside of gerontology and older person’s specialist care were unfamiliar with the concept of frailty as a long-term condition. The end product “The Fundamentals of Frailty” is an evidence-based programme, developed by a team of subject matter experts to ensure that all those who work with older people understand the fundamental aspects of frailty and the difference their care can make to outcomes for this vulnerable population. Full- text is available CLICK HERE
Health Service Executive ( 2023) Model of care for dementia in Ireland.
Available: https://www.lenus.ie/handle/10147/635776
The HSE report has the following sections:
- Background and principles
- Dementia Diagnostic model
- Dementia assessment and diagnostic pathway
- Communicating a diagnosis of dementia
- Care planning and immediate post-diagnostic support
- Dementia post-diagnostic support
This Model of Care is focused on ensuring access to care through a standardised and equitable process and aims to deliver a minimum of:
- One National Intellectual Disability Memory Service (NIDMS), with national access, performing approximately 200 assessments per year.
- Five Regional Specialist Memory Clinics (RSMCs) nationally, with two of these based outside of Dublin, performing approximately 500 assessments per year
- One Memory Assessment and Support Service (MASS) per local population of 150,000 people performing approximately 300 assessments per year. The Model of Care sets out a range of targets and practice recommendations to advance the treatment, care and support for people living with dementia in Ireland.
Care pathways, timely diagnosis and early intervention will provide an opportunity for the person with dementia and their families to be part of the journey in planning for their future needs and engage with the decision making process around these needs
At Home Activities: A selection of meaningful activities for people with dementia, families and carers
This has been published by the Health Service Executive and the Alzheimers Society of Ireland.
As dementia progresses it can become challenging to continue activities that were once
enjoyed, and the person may become more dependent on in-home activities. It is important to remain independent, active and engaged in meaningful activity to prevent boredom, promote stimulation, provide opportunity for achievement and promote self-esteem. This information booklet to support people with dementia, families and carers was compiled by Emma O’Brien, Occupational Therapist at the Memory Technology Resource Room.
Activities are divided into Household activities, games and puzzles, arts and crafts, reminiscence, apps, sensory engagement and physical activities.
Click HERE to access the booklet.
All-Ireland Lymphoedema Guidelines 2022 – Diagnosis, Assessment & Management
Lymphoedema is a progressive, chronic disease that effects an estimated 45,000 people in Ireland and Northern Ireland combined. It has major personal, social, and economic impact.
Healthcare is an ever changing science where advances and new developments in lymphoedema continue to take place. Evidence based knowledge and skills related to advancing lymphoedema management are of crucial importance in delivering care safely, effectively and efficiently.
This revision of the 2008 CREST guidelines for lymphoedema ensures that the most up-to-date evidence is available to support the standardisation of care and encourage best clinical practice and patient outcomes. The guideline is applicable for both hospitals and healthcare organisations, to ensure that patients with lymphoedema wherever they are benefit from high standards of care and quality of interventions. Health Care Professionals with clinical competence in lymphoedema management play a vital role by promoting quality and continuity of care that enables patients/clients to receive treatment effectively and efficiently in the healthcare setting most appropriate to their needs while
enabling self-management and individual agency. The availability of these guidelines will support the implementation of good lymphoedema care in all settings and improve the experience and safety of people in our care
The colour-coded sub sections are:
- General Section:
• Introduction
• Risk reduction and awareness
• Diagnosis and assessment
• Management - Chronic Oedema
3 Primary Lymphoedema - Surgery and lymphoedema
- Oncology related lymphoedema
- Lymphoedema in children and young people
- Lymphoedema in people living with obesity
- Lymphoedema in palliative care patients
- Lymphoedema education
Resources on The Fundamentals of Advocacy in health and social care
HIQA have developed an online learning course, booklet and educational video on The Fundamentals of Advocacy in health and social care. Advocacy is a key element in all national standards published by HIQA.
The online course, booklet and video aim to enhance understanding of advocacy and to enable staff to better support people using services to advocate for themselves and to access advocacy services. The resources describe the role of health and social care staff in relation to advocacy and how they can support person-centred care within their service.
Booklet: Click HERE
Advocacy is a key part of the role of all health and social care staff in Ireland. Advocacy is about supporting and empowering people to communicate their will and preference, securing their human rights, or representing their interests. Advocacy is about ensuring person-centred care by placing the person at the centre of any decision-making about their lives and their care. There are times when it is necessary to involve an independent advocate to support a person, staff should support people to access these services when required.
Resources available Click HERE
Assisted Decison Making (Capacity) Act
The Assisted Decision-Making (Capacity) Act (2015) (PDF) is about supporting decision-making and maximising a person’s capacity to make decisions. This Act applies to everyone and is relevant to all health and social care services.
This new Act will assist in complying with human-rights obligations contained in the Constitution of Ireland, the European Convention on Human Rights, and the United Nations Convention on the Rights of Persons with Disabilities.
The HSE have developed extensive resources to support staff to prepare for the Assisted Decision Making Act.
- HSELanD
- An e-learning programme Assisted Decision-Making (Capacity) Act 2015 – Guidance for Healthcare Workers is now available on HSELanD. This e-learning programme provides essential information about implementing the 2015 Act in practice and will help staff to familiarise themselves with their new responsibilities under the 2015 Act. Two further e-learning programmes to support health and social care practice have also been developed and are available on HSELanD:
- Supporting Decision Making in Health and Social Care e-learning programme
- HSE National Consent Programme e-learning programme.
- Website
- Up-to-date information and guidance is available on www.assisteddecisionmaking.ie, including:
- frequently asked questions on the 2015 Act
- a short explainer video on the 2015 Act
- recordings of webinars on key provisions of the 2015 Act
Clinical Updates 