Northern Trust Lymphoedema Stakeholder Event Elaine Stowe Lymphoedema Lead Northern Trust Feb 2010

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

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

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 work programmes Stakeholder events – meeting with service users Stakeholder events – meeting with service users Mapping project Mapping project 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

LNNI Stakeholder Events Meetings held yearly Meetings held yearly 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

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

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

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

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

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

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

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

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

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

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 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

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

Research The role of Bioimpedence for screening of post surgical patients The role of Bioimpedence for screening of post surgical patients - funded by Friends of the Cancer Centre - 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

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 - timely provision of agreed patient information - access to lymphoedema services - access to lymphoedema services - role of screening - role of screening

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