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

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

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

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

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

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

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

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 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 - Addressing access problems at either end of the condition pathway - awareness/screening/early access - awareness/screening/early access - complex conditions - complex conditions - Supported by the local government papers - Supported by the local government papers

The Network Structure

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

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

A Trust Lymphoedema Team Clinical Lead Specialist Practitioners Admin Support Clinical Assistants Vascular Vascular Dermatology Dermatology Genetics Genetics Palliative Care Palliative Care Oncology Oncology Tissue Viability Tissue Viability Community Nursing Community Nursing Primary Care Primary Care Complementary Therapy Complementary Therapy AHPs AHPs Clinical Psychology Clinical Psychology Core Team Lymphoedema Network

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

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

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

Posters -launched 2008 Posters -launched 2008

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

and e-Newsletter and e-Newsletter

LNNI Regional Complex Clinic Recognised across the UK as being a leading initiative for service development 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 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 Staffed by lymphoedema leads and medical representatives from vascular surgery, dermatology and palliative care

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

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

Lobbying and Influencing

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

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

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