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 .

Regional Health and Social Care Personal and Public Involvement Forum: Annual Update Report 2012/13

Personal and Public Involvement (PPI) is an essential component in the delivery of truly person centred services.�It is also a statutory duty.�The PHA has leadership responsibilities in respect of the implementation of PPI across HSC.�One of the ways in which the PHA discharges that leadership function, is through the Regional HSC PPI Forum.�This body brings together all HSC organisations, working alongside service users and carers, to bring a focus on involvement.�It promotes the sharing of best practice, identifies and tackles issues of common concern and providers a platform for the active participation of service users and carers.� Each year in response to a Priorities for Action (PFA) target, the PHA, working with HSC partners, service users and carers in the Forum, develop an Annual Report on PPI work taken forward through the Forum.The report for 2012/13 details progress in a number of important areas such as training, development of standards etc.

IPH response to DHSSPS Consultation on a ten year breastfeeding strategy for Northern Ireland 2012-2022

The Department of Health, Social Services and Public Safety invited submissions on the development of a new ten-year Breastfeeding Strategy for Northern Ireland 2012-2022 between May and September 2012. The draft Breastfeeding Strategy 2012 – 2022 proposes further action in relation to breastfeeding and aims to protect, promote, support and normalise breastfeeding within the population of Northern Ireland. Key points from IPH response IPH welcomes the commitment by the Department of Health, Social Services and Public Safety to develop a comprehensive long-term strategy to support women in Northern Ireland to breastfeed. The timeframe provides scope for developing clear long-term targets and actions and the embedding of breastfeeding culture into allied services, policies and programmes throughout Northern Ireland. The draft strategy’s recognition of the potential of breastfeeding as a means for tackling health inequalities forms a central theme of the IPH submission IPH welcomes the success achieved to date in improving breastfeeding. However, it is clear that the overall breastfeeding rate in Northern Ireland still lags behind the rest of the UK. Inequalities in breastfeeding rates remain an ongoing concern. IPH emphasises the importance of integrating the actions of the breastfeeding strategy with the strategic direction of overall public health policy in particular the forthcoming Fit and Well policy framework and early years strategies. IPH welcomes the inclusion of stipulations regarding weaning practices as an important component of the vision and one which, if achieved, will maximize the benefits from improving breastfeeding rates and duration.

IPH response to Department of Health (UK) Standardised Packaging of Tobacco Products

Enhanced tobacco control policies and programmes are an important component of any strategic approach to improving population health and tackling health inequalities. The consultation on standardised packaging of tobacco products in the UK is particularly timely in view of the recent publication of the Ten Year Tobacco Strategy for Northern Ireland (DHSSPS, 2012). In this strategy the Department expressed its support for the introduction of further measures to reduce the influence of tobacco advertising and promotion upon children e.g. the introduction of plain packaging for cigarettes and hand rolling tobacco.  IPH key points •    The extent of tobacco-related harm across the island of Ireland and across the UK is unacceptable. Increasingly comprehensive and effective tobacco-control interventions are required. •    IPH recommends the adoption of option 2: require standardised packaging of tobacco products. •    IPH acknowledges that as plain packaging has not yet been introduced in any country, it is not possible at this time to accurately forecast the extent and nature of this intervention on population level health outcomes in the UK context. •    The proposed approach appears comprehensive in addressing the direct and indirect ways in which elements of tobacco packaging can promote brand appeal and can portray impressions in respect of tobacco-related harm. Consideration should be given to include specific provisions relating to roll-your-own (RYO) tobacco packaging. Any approach needs to be regularly reviewed to take into account attempts to bypass restrictions and evaluate responses in respect of consumer choices. •    IPH considers that the introduction of plain packaging has the potential to support the achievement of the goals set out in the Ten Year Tobacco Control Strategy for Northern Ireland ( DHSSPS, 2012). •    Among children in Northern Ireland who reported trying their first cigarette, around one quarter were aged 11 or under and three quarters were 14 or under when they did so (DHSSPS, 2012).  The very young age of these children is concerning on many levels including their susceptibility to sophisticated branding and marketing techniques linked to tobacco packaging.

Review of Current Policy for the Retention of Newborn Screening Cards

Dr James Reilly, Minister for Health requested the Health Service Executive to review the policy regarding the retention and disposal of Newborn Screening Cards (NSCs). The NSCs are an integral component of the National Newborn Bloodspot Screening Programme (NNBSP). The Minister had received representations concerning the archived NSCs stored by the National Newborn Bloodspot Screening Laboratory (NNBSL) at the Childrenâ?Ts University Hospital, Temple Street (CUH, T/S).   Click here to download PDF 146kb

BGS response to the Health Foundation Improvement Report on Dementia Care

Dementia services have moved up the agenda in recent years, highlighted by the publication of the National Dementia Strategy in February 2009. The Health Foundation's improvement report on dementia care hopes to bring together data, research and good practice, with an assessment of the current quality gap.Background to The Health Foundation's Improvement Reports in 2010. At the end of 2009 the Health Foundation agreed a new research and development strategy with the following aims:To make a significant contribution to strengthening the evidence base on how to improve quality in the health care systems of the UK To ensure that this body of knowledge, and a commitment to developing the knowledge shapes our work programmes To promote the use of this evidence base by decision makers at all levels in the health care system Improvement reports will aim to engage the reader by presenting best practice evidence alongside data on current performance and introducing commentary and debate, interpretation about possible next steps and case studies.�� They will build on the success of the chart books produced to date: Bridging the Quality Gap in Stroke services�۪ Quality in healthcare in England, Wales, Scotland, Northern Ireland: an intra-UK chart book�۪, together with Bridging the Quality Gap in Heart Failure�۪ to be published early 2010. Improvement reports will be dynamic and flexible through use of a mix of print products and pages on the Health Foundation�۪s website.

20 Year Strategy for the Irish Language 2010-2030

The objective of Government policy in relation to Irish is to increase on an incremental basis the use and knowledge of Irish as a community language. Specifically, the Government’s aim is to ensure that as many citizens as possible are bilingual in both Irish and English. It is an integral component of the Government’s Irish language policy that close attention be given to its place in the Gaeltacht, particularly in light of research which indicates that the language’s viability as a household and community language in the Gaeltacht is under threat. The aim of Government policy is also to: increase the number of families throughout the country who use Irish as the daily language of communication; provide linguistic support for the Gaeltacht as an Irish-speaking community and to recognise the issues which arise in areas where Irish is the household and community language; ensure that in public discourse and in public services the use of Irish or English will be, as far as practical, a choice for the citizen to make and that over time more and more people throughout the State will choose to do their business in Irish; and ensure that Irish becomes more visible in our society, both as a spoken language by our citizens and also in areas such as signage and literature