IPH response to Palliative and End of Life Care Strategy Consultation

Palliative care and end of life care is the active, holistic care of patients with advanced and progressive illness.  It is an integral part of the care delivered by all health and social care professionals, and indeed by families and carers, to those living with, and dying from any advanced, progressive and incurable conditions.  The Department of Health, Social Services and Public Safety (NI) issued a consultation document on a 5 year Strategy in December 2009.

End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland

The National Council on Ageing and Older People (NCAOP) and the Irish Hospice Foundation (IHF) are pleased to present this report, End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland. The report details the results of research that focuses, for the first time in Ireland, on the quality oflife and quality of care at the end-of-life for older people in various care settings including acute hospitals, public extended care units, private nursing homes, voluntary nursing homes and welfare homes. The report provides a new model for care at the end-of-life which goes beyond specialist palliative care provision to embrace a compassionate approach that supports older people who are living with, or dying from, progressive, chronic and life-threatening conditions, and attends to all their needs: physical, psychological,social and spiritual. Download document here

End-of-Life Care for Older People - Conference Proceedings

The purpose of this report on seminar proceedings is to provide a focused andaccurate summary of the deliberations of the seminar.The main aim of the seminar was to provide a forum in which to consider the determinants of quality of life of older people at the end-of-life and to identify priority measures and policies to ensure the highest standards of end-of-life care for older people in acute and long-stay settings in Ireland. Download document here

End of life care standards for people with dementia

End of life care standards for people with dementiaThis project, funded under Call 1 of CARDI’s Grants Programme and led by Dr Suzanne Cahill, School of Social Work and Social Policy, Trinity College Dublin, highlights the need for guaranteed standards of care for older people with dementia at the end of their lives.The research recommends the introduction of standards as a matter of urgency because of the huge increases in the number of people affected, and the number likely to be affected in the future. It is estimated that the number of people with dementia in the Republic of Ireland will rise from 44,000 to 104,000 by 2036 and in Northern Ireland from 16,000 to 47,000 in 2051.The research draws attention to the importance of agreeing new standards in Ireland, North and South, by proposing guidelines to develop policies and practices that can reflect the best available throughout the world.Research Team:•������ Dr Suzanne Cahill, School of Social Work and Social Policy, Trinity College Dublin•������ Ms Daphne Doran, Quality Initiatives, Belfast•������ Dr Max Watson, University of Ulster and Northern Ireland HospiceResearch briefingFull report��

Guidance on starting end of life care conversations with people affected by dementia

Dementia UK, as a member of the Dying Matters coalition, contributed to a new leaflet that discusses how to begin conversations around end of life care for people with dementia. Aimed at GPs and families who have recently received a dementia diagnosis, this leaflet provides at-a-glance information about having this very necessary conversation and includes information about when to talk about it and tips about what to say. Download the leaflet

CARDI Research Brief: Medication use in patients with dementia at the end of life

��Palliative care and medication use are important issues in dealing with end-of-life stage dementia. As research into palliative care for patients with advanced dementia has been limited to date, CARDI funded a project, led by Dr. Carole Parsons of Queen’s University Belfast, as part of its grants programme. This project aimed to evaluate the extent to which patient-related factors influenced clinical decision-making with regard to medication use in patients with endstagedementia. This research brief presents a summary of the findings from the full report, Assessment of factors which influence physician decisionmaking regarding medication use in patients with dementia at the end of life (Parsons, et al., 2012).Read the research brief here: Medication use in patients with dementia at the end of lifeRead the press release here

End of life trajectories across conditions

The findings of Pinnock and colleagues’ study on the longitudinal perspectives of people with severe chronic obstructive pulmonary disease (COPD) have implications for other non-malignant conditions.To read the 'BMJ' news article in full.

Medication use in patients with end of life dementia:Presentations

CARDI recently launched a new report (Friday 6 July 2012) which finds considerable uncertainty and variation in the medicines doctors say they would prescribe for patients with dementia at the end of life when presented with clinical scenarios. The all-Ireland research, led by a team at QUB, finds evidence that GPs and hospital physicians indicate they would continue with dementia medications and statins and actively prescribe antibiotics when there is limited evidence of benefits to patients with dementia at end of life.Links to presentations are below:Assessment of factors which influence decision-making regarding medication use in patients with dementia at the end of life: Prof Carmel HughesMedication use in patients with end of life dementia: Dr Shaun O'Keefe

A palliative care needs assessment for children

The development of a children’s hospice is not seen as a priority by the respondents in this study, some of whom raised concerns regarding accessibility and cost. There is a degree of ambiguity however, regarding the role of ‘hospice’ in paediatric palliative care with some respondents associating it only with end-of-life care. There is a substantial need for ongoing education, training and development of healthcare professionals caring for children with life-limiting conditions. Palliative care services currently provided to children in Ireland with life-limiting conditions are seen to be inequitable, differing significantly according to diagnosis (malignant versus nonmalignant) and according to geographic location. This poses challenges, particularly for parents of children with non-malignant diseases. Both families and professionals often deem the physical environment for adolescents in hospitals unsuitable. The difficulties encountered in the transition from children’s services to adult services have been identified as an issue for adolescents. The provision of bereavement support varies between services. Professionals have identified the need for a broader range of bereavement services.

NICaN Regional Supportive & Palliative Care Network

NICaN Regional Supportive & Palliative Care Network Friday 30th May 2008 Lecture Theatre, Fern House Antrim 2.00 pm - 5.00 pm Welcome, Introductions Stuart MacDonnell, Chair of the Supportive and Palliative Care network welcomed everyone to the meeting. This meeting had been rescheduled to accommodate the validation workshop for the regional palliative care model, which took place on Friday,18th April. Acknowledging the full agenda, several items were pulled forward to accommodate speakers SPC_0809_03 Modernisation and Reform of Supportive and Palliative care Mr MacDonnell welcomed Dr Sonja McIlfatrick and Dr Donna Fitzimons, members of the Phase 1 Project Team for the Modernisation and Reform of palliative care. Their presentation highlighted the journey taken by the Project Team since January 2008 - May 2008. Seeking to deliver the network vision, for any person with palliative care need, cancer or non - cancer, the project team incorporated several methodologies. The literature review identified best practice. An assessment of need including epidemiological data and review of service provision. Consultation reflected the engagement with patients, carers and professional forums, primary care and non-malignant focus groups. The breadth of consultation confirmed the evidence for the identified components of the model. These were validated at the April workshop. External review of the work was provided by Dr Phil Larkin (Galway Uni) Prof David Clark (End of Life Care Observatory, Lancaster University) and Mr Bob Neillans (Chair of the Mid Trent Palliative care network, which has been involved in the Delivering choice programme within Lincolnshire). The Guiding Principles of the model reinforced Patient and family centred care, enhanced community provision and supported by specialists. The components of the model are · Identification of patient with Palliative careened · Holistic Assessment · Integration of services · Coordination of care · End of Life Care and Bereavement Care The consultation process also highlighted the need for Increased Public and Professional Awareness. This was recognised as an encompassing component. Underpinning the model is the need for robust Education and common core values e.g. dignity, choice, advocacy, empowerment, partnership working. Stuart MacDonnell, who also chaired the steering group during the project, congratulated the Project Team for delivering the comprehensive document on schedule. The Report has been submitted to the NICaN Board and the DHSSPSNI. In addition, an outline for Phase 2 of this work has been submitted. Mr MacDonnell recognised that there is real opportunity for palliative care to benefit from the DHSSPSNI commitment to concrete developments. Phase 2 will progress the current high-level components of the model into quality services developments at a local level, demonstrating integration throughout. The methods propose continued engagement with the Delivering Choice Programme enabled through a Central and also Local Teams. The report and the Appendices care available on the NICaN website www.nican@n-i.nhs.uk SPC_0809_01 Chairman's Business · Update on the Cancer Service Framework, the document has been submitted and presented to the Departmental Programme Board. Next stages will include the review of costs and development of a implementation guidance It is hoped that the completed document should be available for public consultation in Autumn 2008. with a launch of the framework document and accompanying implementation guide in Spring 2009. Some funding has already been identified to advance key areas of work including, Advanced communication skills training, peer review and an appointment of a post to develop the cancerni.net, focusing on children and e-learning tools. · Children's and Adolescent Cancer network group , Liz Henderson is to convene a group to consider how this is to be taken forward. · NICaN appointments Recognition was given to the significant contribution made by Dr Gerard Daly during his position as NICaN Lead Clinician, particularly throughout the early establishment of the NICaN. Dr Dermott Hughes (Western Trust) has been appointed as the NICaN Medical Director. The Primary Care Director post has been advertised and it is hoped that the Director of Network will be advertised later in Summer. Endorsement of End of Life care paper. The Paper was presented and endorsed at the March 2008 NICaN Board meeting. Mr David Galloway (Director of Secondary Care) emphasised the need for this important work to be recognised within the regional model to ensure that it is reflected in future models of service delivery Congratulations were again echoed to the Chair of the End of Life Group for this work, Dr Glynis Henry, and the working group Other recognition Mr MacDonnell congratulated the significant achievements across the network. These include: · Dr Francis Robinson (Consultant Palliative Medicine, Western Trust) Awarded - Consultant of the year at the NI Health Care awards. · Mrs Evelyn Whittaker Hospice Nurse Specialist, NI Hospice, Joint Second Prize in the Development award within the International Journal of Palliative Nursing Awards, for her work in development of palliative care education in nursing homes. · Mr Ray Elder is the newly appointed Team Leader of Community Palliative care, SE Trust. · Mrs Bridget Denvir, who managed the establishment of one of the first community multiprofessional palliative care teams is moving to work with establishing integrated teams within the Belfast Trust. Bridget has been an active core member of the network and here contribution has been much appreciated. Mrs Sharon Barr will attend in future. SPC_0809_02 Minutes & matters Arising from Meeting, 13th December 2007 No amendments were made to the draft minutes from the December meeting. These will be posted on the NICaN website for future reference. Palliative Care Research Following consultation, the response to the business case for the All Ireland Institute was forwarded on 22 February 2008 to Prof David Clark. Prof Judith Hill informed the group that terms of tender are now being developed. Awareness raising across academic institutions continues to engage interest in potential partnerships. Atlantic Philantrophies have offered financial support to the venture and match funding is being sought from across jurisdictions. Previous discussions at Network meetings have endorsed the need to establish a work strand for research and development within palliative and end of life care. To identify the body of interested parties and explore the strengths and weaknesses of a collaborative model for research, a workshop, - Building collaboration for Palliative and End of life Care Research -will take place on 4 June 10am - 2pm.in the Comfort Hotel.Antrim, The workshop will be chaired by Prof David Clark, Director of the International Observatory on End of Life Care. Prof Shelia Payne, Help the Hospices Chair in Hospice Studies and co director of the Cancer Experiences Collaborative will present the Experiences and Results from Research Collaborative. Feedback from this event will be brought back to the next meeting in September. SPC_0809_04 Patient Information pathways - a pathway for advanced disease Ms Danny Sinclair, NICaN Regional Coordinator for Patient Information informed the network of how patient information pathways have been developed in line with the Cancer Services Collaborative. Emerging themes, with regard to information needs of patients with advanced disease, are being identified from the work undertaken across the tumour groups. It is important to identify all information needs to develop a generic pathway of information resources for advanced disease to be endorsed by the Supportive and Palliative care network. This could be used across the all tumour specific information pathways and across organisational boundaries. The resulting pathway could potentially be used for non- cancer condition. A group is to be established to take this work forward. The group will: · Develop a list of advanced disease information themes · .Identify when they become relevant for the patient or their carer · .Identify existing resources · .Develop resources where needed · .Participate or nominate when review is required Dr Sheila Kelly nominated Helen Hume (SETrust) Paula Kealey will also contribute to this work; a nomination from the Patient and Public Information Forum has also been identified. A date will be circulated across the network to engage further interest and establish group SPC_0809_08 Development of a Regional Syringe Driver Prescription Chart Ms Kathy Stephenson reported that the second consultation of the draft regional syringe driver prescription chart and the focus group discussions, Pilots of the chart are to be undertaken within Trust, Hospices and General Practices. SPC_0809_05 A framework for Generalist and Specialist Palliative and End of Life Care Competency Dr Kathleen Dunne, lead of the Education works strand, reported on the findings following consultation of the Education framework. The report was widely appreciated across the network and valued as a significant and timely document for the commissioning of generalist and specialist adult palliative care education. Mr MacDonnell congratulated Dr Dunne and the members of the education workstrand for developing the framework aligning its significance to the underpinning needs of the regional model Amendments will be made to the document and then forwarded to the NICaN Board for endorsement. A process of implementation will be explored and reported to the network group at the September meeting. Key target areas for generalist palliative care education were highlighted within care of the elderly and general medicine. . SPC_0809_06 Pallcareni.net-a website for people with palliative care needs Ms Danny Sinclair, reminded the group of the pending amalgamation of the CAPriCORN and NICaN website. The resulting new web address will be www. cancerni.net. Recurrent funding has been secured to ensure the development of the supportive and palliative care website.www.Pallcareni.net The new website will host good information for people with palliative care needs, regardless of diagnosis. It will be accessible via the cancerni.net portal or independently as the pallcareni portal. It will signpost people with palliative care needs to condition- specific websites. The website will also enable the communication needs of the NI Regional Supportive & Palliative Care Network. This is a very significant method of seeking to enable greater understanding of palliative care for public and professionals, as highlighted within the regional model. Currently the material from the CAPriCORN website is being migrated onto cancerni and /or pallcareni.net as appropriate. To enable the further development of this opportunity a steering group of interested individuals is to be established. Their role will be to: · Drive the development of the website so it meets the needs of public and professionals through the sourcing and development of additional content · Identify any support that is needed, e.g. technical support · Review the website as a whole as it grows (coordinating condition-specific developments) · Review the functions of the website to aid communication throughout the Supportive and Palliative care network The steering group representation should reflect the constituencies within the Supportive and Palliative Care network. Current expressions of interest have come from Heather Reid and Valerie Peacock. A date will be circulated across the network to engage further interest and establish group SPC_0809_07 Update of Guidelines workstrand Dr Pauline Wilkinson presented the current work within the guidelines workstrand. 1. Brief Holistic Assessment & Referral Criteria to Specialist Palliative Care The development of an Holistic assessment Tool will help to identify holistic need at generalist and specialist level. Recognition of complex need prompts appropriate referral to specialist palliative care. The regional referral form is compatible with the Minimum Data set. The final drafts of this work are to be circulated widely, inclusive of service framework groups, primary care, secondary care and the supportive and palliative care network. Consultation will take place during June and July. Piloting of the forms will also be undertaken. 2. Control of Pain in Cancer Patients The original guidelines where developed 2003 and are now ready for review. The Mapping exercise, undertaken in May 2007, highlighted that the Guidelines were poorly adopted. The group have reviewed the pending SIGN 2 guidelines for pain with regard to practice in Northern Ireland. These are highly evidence based and are due to be launched this Summer. Whilst an excellent resource their comprehensiveness limits their readability, this may result in poor compliance. The Guidelines group feel it is important to have accessible and user-friendly guidelines particularly for Generalists and Out of hours. There are examples of good work that has taken place across the province, but there is a need for regional consistency. Dr Wilkinson has contacted Dr Carolyn Harper (Deputy CMO) and GAIN with regard to enabling funding to progress this work. The Guidelines group hope to approach the NICaN Primary Care Group to work in collaboratively on this piece, based on the templates already available. The works should be available in both electronic and paper versions. 3. Care of the dying & Breaking bad news Dr Gail Johnston has now completed an Audit of the Care of the Dying Pathways within the EHSSB. Gail is also seeking to examine to what extent the Regional Guidelines for Breaking Bad News are being implemented in the EHSSB with a view to identifying the need for further training or organisational structures that would facilitate future uptake. 4. Advances in new Technology Syringe Drivers Dr Wilkinson reported on a presentation made to the guidelines group by Mr Jim Elliot, Principle Engineer, Cardiology & Ann McLean, and Macmillan Palliative Care Nurse RVH. There is increasing concern with regard to how devices meet the recommended safety standards and how to reduce error. New devices have 3 point checking, automatic detection of syringe, automatic flow rates, full range of alarms, battery status and data download to provide an event log. There are now 2 companies in UK who have devices that meet these safety criteria. The current Graseby syringe drivers, which have been on the market and used predominately within Northern Ireland over the past 27 years Most new devices are not compatible with the regionally available monoject syringe, however contractual changes will lead to the withdrawal of the monoject syringes in October 2008. The Guidelines group supports a regional approach to this matter. This was echoed in the Supportive and Palliative care network. An option appraisal, identifying costs, and training issues should be developed through the engagement with Trusts and DHSSPSNI. The issue of Patient safety should be raised with the DHSSPSNI. SPC_0809_09 Evaluation of Supportive and Palliative Care network Deferred to next meeting. . SPC_0809_10 Emerging Issues Mrs Anne Coyle, Bereavement Coordinator, Southern Trust, announced that the Regional Bereavement Strategy is soon to be released. Anne supported the close alignment between the content of the strategy and the work of the regional model and other workstrands within the Supportive and Palliative care network. Ms Eleanor Donaghy, Transplant Coordinator, briefly highlighted the issue of tissue donation. Each year Northern Ireland has a dearth of corneal donations. There is no upper age limit for donation and retrieval is not limited by a cancer diagnosis. Recipients do not require immunosuppressive and the transplant is lifelong. The National Blood Service provided coordination of this donation they may be contacted via 07659180773. It is hoped that Mrs Coyle and Ms Donaghy could provide more comprehensive presentations at a future meeting. Events · Irish Psycho- Oncology Group Seminar, Cork 6 June, Exploring the Struggle for meaning in Cancer · Integrated Care: Putting Research into Practice, 13June, Trinity College, Dublin · Macmillan online conference Friday 13 June 2008, 9am - 5pm · Delivering effective end of life care: developing partnership working 15 Oct 2008, 9.30 -4.15 pm London Network Meeting was closed at 5.00pm SPC_0607_ Dates of Future Meetings (please note the change of venue) 10th September 2008, 1.30 - 5pm venue to be decided15th January 2009, 1.30 - 5pm venue to be decided12th May 2009, 1.30 - 5pm venue to be decided Attendances Apologies Stuart MacDonnellLorna NevinSonja McIlfatrick Donna FitzsimonsKathleen DunnePauline WilkinsonKathy StephensonSheila KellyMarie Nugent,Anne CoyleFiona GilmourJudith HillLorna DicksonMargaret CarlinLoretta GribbenYvonne Duff Lesley NelsonLiz HendersonSue FosterCathy PayneGraeme PaynePatricia MageeGeraldine WeatherupPaula KealyCaroline McAfeeLinda WrayValerie PeacockAnn McCleanRay Elder Martin BradleyHelen HumeGillian RankinHeather MonteverdeJulie DoyleAlison PorterYvonne SmythLiz Atkinson,Glynis HenryMaeve HullyCaroline HughesAnn FinnBob BrownSharon BarrJulie DoyleJanis McCulla .

Improving care for people with long term conditions: 'at a glance' information sheets for healthcare professionals

The Department has produced a series of information sheets for doctors,nurses, those delivering personal health budgets, allied health professionals, health trainers and anyone supporting individuals with long term conditions. The information sheets cover a range of topics including care planning, care co-ordination, managing need and assessment of risk, motivating people to self care, goal setting and action planning and end of life care.Download information sheet 1: Personalised care planning (PDF, 2514K)Download information sheet 2: Personalised care planning diagram (PDF, 2213K)Download information sheet 3: Care co-ordination (PDF, 1967K.

PHA supports World Hospice and Palliative Care Day

Saturday 8 October 2011 marks World Hospice and Palliative Care Day. The Public Health Agency would like to celebrate and support hospice and palliative care around the world by raising awareness and understanding of the needs - medical, social, practical and spiritual - of people living with a life-limiting illness, and their families.This year's World Hospice and Palliative Care Day theme is 'Many diseases, manylives, many voices - palliative care fornon-communicableconditions'.The theme will focus on how people living with conditions thatare notinfectious can benefit from palliative care.Non-communicable diseases (NCDs), which include cardiovascular diseases, cancers, chronic respiratory conditions and diabetes, make up60% of deaths worldwide. The majority of thesedeaths occur in low and middle income countries, where palliative care is often not available. To get involved in World Hospice and Palliative Care Day, log on to www.worldday.org/get-involved/ which gives you ideas and suggestions on what you can do on the day to support people living with life-limiting illnesses, and their families.Mary Hinds, Director of Nursing and Allied Health Professions, PHA, and Chair of the Implementation Process for End of Life Care in Northern Ireland, said: "Good quality palliative and end of life care will be important for us all. 'Living Matters, Dying Matters' is a five year strategy for palliative and end of life care in Northern Ireland, established to ensure that any person living with a life-threatening illness lives well and dies well, irrespective of their condition or care setting. "It has been encouraging to see the plans being taken forward by the Health and Social Care Trusts in partnership with local hospices and other providers, and involving local people."We aim to ensure that people receiving palliative care, their families and carers, are provided with high quality care across all settings and conditions, and are supported to enjoy a good quality of life, maximising their potential through the course of their illness."There is still some progress to be made within the context of the review of health and social services. We are looking for statutory and voluntary services to work together to make a significant difference in improving access to high quality services for those with life-limiting conditions, and to develop innovative approaches to care."

Living Matters Dying Matters (PDF 1.92MB)

A Palliative and End of Life Care Strategy for Adults in Northern Ireland

Revised Service Framework for Respiratory Health and Wellbeing Consultation

The Service Framework for Respiratory Health and Wellbeing was originally launched in June 2009. It has recently been subject to a fundamental review and also to an independent review by the Regulation and Quality Improvement Authority (RQIA). The revised Framework includes 56 standards, which relate to a number of specific conditions, as well as communication and patient and public involvement, health improvement and protection, social emotional support, information, training, medicines management, and palliative and end of life care. åÊ

Deaths from Alzheimer's disease, dementia and senility in England: (NEoLCIN)

Care homes will face particular challenges in responding to the inevitable rise in dementia, including Alzheimer’s, according to a report published by the National End of Life Care Intelligence Network (NEoLCIN). It says commissioners and providers across adult health and social care will be faced with meeting the needs of more people dying with these conditions as the population ages. It confirms that, unlike other conditions, most people with dementia, including Alzheimer’s, die in care homes.Of those who died with one of these conditions recorded as the main underlying cause of death, some 59% died in a nursing or residential home compared to 32% in hospital. That contrasts sharply with the figure for deaths overall: nationally 58% of us die in hospital and only 16% in care homes.The report also shows that people who die from cardiovascular disease, cancer or respiratory illness are significantly more likely to die in a care home if dementia including Alzheimer’s is a contributory factor in their death.Download Deaths from Alzheimer’s disease, dementia and senility in England from the NEoLCIN website