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Lymphoedema Management: the Northern Ireland Model

Lymphoedema Management: the Northern Ireland Model. Jane Rankin Regional Lead Lymphoedema Network Northern Ireland (LNNI) February 2010. Presentation Topics :. Background to the N. Ireland model: Why do we need a strategic format? – setting the scene

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Lymphoedema Management: the Northern Ireland Model

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  1. Lymphoedema Management:the Northern Ireland Model Jane Rankin Regional Lead Lymphoedema Network Northern Ireland (LNNI) February 2010

  2. Presentation Topics : • Background to the N. Ireland model: Why do we need a strategic format? – setting the scene • A review of the LNNI work programme

  3. Department of Health, Social Services and Public Safety, Northern Ireland Sept 2004 Recommended £1.26 million for initial investment www.dhsspsni.gov.uk Report of the Lymphoedema Services Review Group

  4. N.I. Lymphoedema Review 2004 - recommendations: • Develop lymphoedema services as a managed clinical network • Specialist lymphoedema practitioners leading Trust Lymphoedema Teams • Awareness / education for other healthcare professionals and patients • Develop patient data base • Develop CREST clinical Lymphoedema Guidelines to standardise & improve practice

  5. Department of Health, Social Services and Public Safety, Northern Ireland Feb 2008 www.dhsspsni.gov.uk/index/hss/gain.htm Clinical Guidelines for Diagnosis, Assessment & Management of Lymphoedema in Northern Ireland

  6. CREST 2008 appendices and attachments • QOL tools • Assessment form • Review assessment form • CREST 2005 cellulitis guidelines abstract • Trust team format • Service referral form • Referral pathway • Criteria for complex clinic • Glossary

  7. Launched February 2008 along side the CREST guidelines Budget of £0.5 million for regional service development info@lnni.org The Lymphoedema Network Northern Ireland (LNNI)

  8. MCN success is dependent on: • The true engagement of all network partners in taking forward and implementing strategy • Influencing and negotiating skills • A need to foster accountability, sustainability and responsibility as catalysts for action, understanding and delivery

  9. The LNNI Vision • To change the emerging picture of the condition over the next 10 years, reducing incidence rates and the number of chronic presentations - Addressing access problems at either end of the condition pathway - awareness/screening/early access - complex conditions - Supported by the local government papers

  10. The Network Structure

  11. The LNNI Network Board • Role: to guide the network and be responsible for addressing the principles underpinning the network development, including governance. Members: - 5 Patient representatives - 5 Trust Lymphoedema Leads - Primary care representative - Regional Network Lead and Project Manager - Health Agency representative (Chair) - Commissioner representation - Department of Health representation

  12. LNNI Stakeholder Events • Meeting 6 monthly • Open to all interested stakeholders across the Province • Role: - to ensure thorough communication to and from the Board/network and trust teams - to identify regional priorities and update work programme - to share local experiences and learning - to develop work sub groups

  13. A Trust Lymphoedema Team • Vascular • Dermatology • Genetics • Palliative Care • Oncology • Tissue Viability • Community Nursing • Primary Care • Complementary Therapy • AHPs • Clinical Psychology Core Team Lymphoedema Network

  14. Main work strands • Lobbying and influencing at strategic levels (in trusts, regionally and nationally) • Communication strategy • Education strategy (all levels) • Main aims: - to introduce education and screening for all “at risk” patients ensuring immediate access to early treatment - to improve lymphoedema awareness of patients, HCPs and public

  15. Education Strategy 2008 - 2010 • Focused on providing learning for: - potential lymphoedema patients (“at risk”) - referrers/those working with “at risk” patient groups - under-graduate health care professions and universities: the workforce of the future! - lymphoedema specialists – planning for the future and maintaining the current skilled workforce Strategy: available on www.lnni.org

  16. LNNI current work programmes • Stakeholder events – meeting with service users • Minimum data set– LymphDat • Information – posters/ leaflets /e-learning • Web site development www.lnni.org • Lymphoedema Complex Clinics • Education: University of Ulster • Lobbying – MLAs, Frameworks etc • Research proposals • Evidence based practice developments– CREST, NICE, National Cancer Action Team

  17. Posters -launched 2008

  18. “At risk” cancer - related information leaflet • Launched – Feb 2009

  19. www.lnni.org and e-Newsletter

  20. LNNI Regional Complex Clinic • Recognised across the UK as being a leading initiative for service development • For patients with extremely complex lymphoedema or questionable diagnoses requiring additional investigations and assessment • Staffed by lymphoedema leads and medical representatives from vascular surgery, dermatology and palliative care

  21. The Draft Clinic Audit Report (February 2010) • Highlights the impact of poor mobility and obesity on the provision of lymphoedema care • Will influence future referral guidelines and provide guidance for other interventions prior toor along side the referral to the lymphoedema service

  22. Education: Under -graduate programme at University of Ulster • In partnership with the Schools of Nursing and Radiotherapy • Web based learning: notes, case studies and videos • Lecture and case study discussion • Piloted in 2009 and continuing to develop for future roll out with other schools

  23. Lobbying and Influencing

  24. Regional Strategic developments • Influencing the development of Service Frameworks - Cancer and Cardio vascular - central to the reform of health and social care services • LNNI Focus - timely provision of agreed patient information - access to lymphoedema services - role of screening

  25. Research • The role of Bioimpedence for screening of post surgical patients - funded by Friends of the Cancer Centre) • Quality of Life (QoL) - to provide us with the best tool to measure QoL - to assess how much this is effected by lymphoedema - sponsored by LNNI

  26. Summary • This coordinated approach, using a network, has facilitated: - cross trust working and shared learning - access and liaison with the Department Of Health and local commissioners - Patient Involvement - Partnerships with other agencies e.g. universities - development of regional tools e.g. website, min data set, information

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