Northern Trust Lymphoedema Stakeholder Event

1. Northern Trust LymphoedemaStakeholder Event Elaine Stowe Lymphoedema Lead Northern Trust Feb 2010

2. Lymphoedema Network –Northern Ireland (LNNI) • Established 2008 following investment from DOH • Role is to implement Crest Guidelines • Ensure that all lymphoedema patients should be seen by a lymphoedema specialist practitioner • Co-ordinate & shape regional service development

3. LNNI Vision • To change the picture of lymphoedema incidence & management over the next 10 years by addressing : - patient screening & education - early access - regional lymphoedema provision - raising the profile of lymphoedema

4. 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

5. LNNI workprogrammes • Stakeholder events – meeting with service users • Mapping project • 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

6. LNNI Stakeholder Events • Meetings held yearly • 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

7. LNNI Service Mapping Project • Completed across all HSC Trusts • Establish baseline of all existing service provision • Produce information to support future business plans

8. Objectives • Identify services offering treatment & management to lymphoedema patients • Identify services coming into contact regularly with at risk groups • Establish baseline compliance with Crest Guidelines • Identify gaps in the service • Develop recommendations for local improvements

9. Method • Data collection tool developed by LNNI project team • Encompassing all aspects of service provision • Completed by clinical leads with manager from each service • Completed forms returned to LNNI project manager for analysis

10. Information Collected • Service details - location - opening hours - patient throughput - referral sources • Treatment available/offered • Onward referral options

11. Team details - training - funding for lymphoedema management - facilities & support available • Goods & services • Garment provision/funding • Access to appropriate literature - Crest guidelines - patient information leaflets

12. Results • 23 out of 80 services in total mapped in Northern Trust • Wide variation of lymphoedema management being offered • Lack of Guidance information & leaflets • Wide variation in levels of training • Lack of adequate treatment facilities & support

13. Areas for Improvement • Increased availability of garment measuring & garment varieties • Guidance & leaflets to be distributed across all services • Ensure that treatment provided only by specialist practitioners • Ensure that all cornerstones of care are made available in services providing treatment

14. Link with planning to ensure future facilities meet treatment requirements • Improve multi-professional links for onward referral options • Review computer & internet accessibility & admin resources

15. Minimum Dataset - Lymphdat • Currently being developed • Will provide true epidemiological picture of lymphoedema in the province • Compliment the mapping project to inform service development • Will be thoroughly protected with restricted access as per NHS requirements • Will aid audit, research standards/info, analysis reports

16. Posters -launched 2008

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

18. www.lnni.organd e-Newsletter

19. 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

20. 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 to or along side the referral to the lymphoedema service

21. 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

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. 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

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. 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