Lymphoedema Lymphoedema Management:Management:the Northern Ireland the Northern Ireland ModelModel

Jane Rankin Jane Rankin Regional LeadRegional LeadLymphoedema Network Lymphoedema Network Northern Ireland (LNNI)Northern Ireland (LNNI)February 2010February 2010

Presentation Topics :Presentation Topics :

Background to the N. Ireland Background to the N. Ireland model: Why do we need a model: Why do we need a strategic format? – setting the strategic format? – setting the scenescene

A review of the LNNI work A review of the LNNI work programmeprogramme

Report of the Lymphoedema Report of the Lymphoedema Services Review GroupServices Review Group

Department of Department of Health, Social Health, Social Services and Public Services and Public Safety, Northern Safety, Northern IrelandIreland

Sept 2004Sept 2004 Recommended Recommended

£1.26 million for £1.26 million for initial investmentinitial investment

www.dhsspsni.gov.ukwww.dhsspsni.gov.uk

N.I. Lymphoedema Review 2004 N.I. Lymphoedema Review 2004 - recommendations:- recommendations:

Develop lymphoedema services as a Develop lymphoedema services as a managed clinical network managed clinical network

Specialist lymphoedema practitioners Specialist lymphoedema practitioners leading Trust Lymphoedema Teamsleading Trust Lymphoedema Teams

Awareness / education for other Awareness / education for other healthcare professionals and patientshealthcare professionals and patients

Develop patient data baseDevelop patient data base Develop CREST clinical Lymphoedema Develop CREST clinical Lymphoedema

Guidelines to standardise & improve Guidelines to standardise & improve practicepractice

Clinical Guidelines for Clinical Guidelines for Diagnosis, Assessment & Diagnosis, Assessment & Management of Lymphoedema Management of Lymphoedema in Northern Irelandin Northern Ireland

Department of Department of Health, Social Health, Social Services and Services and Public Safety, Public Safety, Northern Northern IrelandIreland

Feb 2008Feb 2008

www.dhsspsni.gowww.dhsspsni.gov.uk/index/hss/gaiv.uk/index/hss/gain.htmn.htm

CREST 2008 appendices and CREST 2008 appendices and attachmentsattachments

QOL toolsQOL tools Assessment formAssessment form Review assessment Review assessment

formform CREST 2005 cellulitis CREST 2005 cellulitis

guidelines abstractguidelines abstract Trust team formatTrust team format Service referral formService referral form Referral pathwayReferral pathway Criteria for complex Criteria for complex

clinicclinic GlossaryGlossary

The Lymphoedema The Lymphoedema Network Northern Network Northern Ireland (LNNI)Ireland (LNNI)

Launched Launched February 2008 February 2008 along side the along side the CREST guidelinesCREST guidelines

Budget of £0.5 Budget of £0.5 million for million for regional service regional service developmentdevelopment

info@lnni.orginfo@lnni.org

MCN success is dependent MCN success is dependent on:on:

The true engagement of all network The true engagement of all network partners in taking forward and partners in taking forward and implementing strategyimplementing strategy

Influencing and negotiating skillsInfluencing and negotiating skills

A need to foster accountability, A need to foster accountability, sustainability and responsibility as sustainability and responsibility as catalysts for action, understanding and catalysts for action, understanding and deliverydelivery

The LNNI VisionThe LNNI Vision

To change the emerging picture of the To change the emerging picture of the condition over the next 10 years, condition over the next 10 years, reducing incidence rates and the reducing incidence rates and the number of chronic presentationsnumber of chronic presentations

- Addressing access problems at either - Addressing access problems at either end of the condition pathwayend of the condition pathway

- - awareness/screening/early accessawareness/screening/early access

- complex conditions- complex conditions

- Supported by the local government - Supported by the local government paperspapers

The Network StructureThe Network Structure

The LNNI Network BoardThe LNNI Network Board

Role: to guide the network and be Role: to guide the network and be responsible for addressing the principles responsible for addressing the principles underpinning the network development, underpinning the network development, including governance.including governance.

Members:Members:

- - 5 Patient representatives5 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 EventsLNNI Stakeholder Events

Meeting 6 monthlyMeeting 6 monthly Open to all interested stakeholders Open to all interested stakeholders

across the Provinceacross the Province Role:Role: - to ensure thorough communication to - to ensure thorough communication to

and from the Board/network and trust and from the Board/network and trust teamsteams

- to identify regional priorities and update - to identify regional priorities and update work programmework 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 TeamA Trust Lymphoedema Team

Clinical Lead

Specialist Practitioners

Admin Support

Clinical Assistants

VascularVascular DermatologyDermatology GeneticsGenetics Palliative CarePalliative Care OncologyOncology Tissue ViabilityTissue Viability Community NursingCommunity Nursing Primary CarePrimary Care Complementary Complementary

TherapyTherapy AHPs AHPs Clinical PsychologyClinical Psychology

Core Team

Lymphoedema Network

Main work strandsMain work strands Lobbying and influencing at strategic Lobbying and influencing at strategic

levels (in trusts, regionally and levels (in trusts, regionally and nationally)nationally)

Communication strategyCommunication strategy Education strategy (all levels)Education strategy (all levels)

Main aims:Main aims: - to introduce education and screening - to introduce education and screening

for all “at risk” patients ensuring for all “at risk” patients ensuring immediate access to early treatmentimmediate access to early treatment

- to improve lymphoedema awareness - to improve lymphoedema awareness of patients, HCPs and publicof patients, HCPs and public

Education Strategy 2008 - Education Strategy 2008 - 20102010 Focused on providing learning for:Focused on providing learning for: - potential lymphoedema patients (“at - potential lymphoedema patients (“at

risk”)risk”) - referrers/those working with “at risk” - referrers/those working with “at risk”

patient groupspatient groups - under-graduate health care - under-graduate health care

professions and universities: the professions and universities: the workforce of the future!workforce of the future!

- lymphoedema specialists – planning - lymphoedema specialists – planning for the future and maintaining the for the future and maintaining the current skilled workforcecurrent skilled workforce

Strategy: available on www.lnni.orgStrategy: available on www.lnni.org

LNNI current work LNNI current work programmesprogrammes Stakeholder events – meeting with Stakeholder events – meeting with

service users service users Minimum data set– LymphDatMinimum data set– LymphDat Information – posters/ leaflets /e-learningInformation – posters/ leaflets /e-learning Web site development www.lnni.orgWeb site development www.lnni.org Lymphoedema Complex ClinicsLymphoedema Complex Clinics Education: University of Ulster Education: University of Ulster Lobbying – MLAs, Frameworks etcLobbying – MLAs, Frameworks etc Research proposalsResearch proposals Evidence based practice developments– Evidence based practice developments–

CREST, NICE, National Cancer Action CREST, NICE, National Cancer Action TeamTeam

Posters -launched 2008Posters -launched 2008

““At risk” cancer - related At risk” cancer - related information leafletinformation leaflet

Launched – Feb 2009Launched – Feb 2009

www.lnni.orgwww.lnni.org and e- and e-NewsletterNewsletter

LNNI Regional Complex LNNI Regional Complex ClinicClinic Recognised across the UK as being a Recognised across the UK as being a

leading initiative for service developmentleading initiative for service development

For patients with extremely complex For patients with extremely complex lymphoedema or questionable diagnoses lymphoedema or questionable diagnoses requiring additional investigations and requiring additional investigations and assessmentassessment

Staffed by lymphoedema leads and Staffed by lymphoedema leads and medical representatives from vascular medical representatives from vascular surgery, dermatology and palliative caresurgery, dermatology and palliative care

The Draft Clinic Audit ReportThe Draft Clinic Audit Report (February 2010)(February 2010)

Highlights the impact of poor mobility Highlights the impact of poor mobility and obesity on the provision of and obesity on the provision of lymphoedema carelymphoedema care

Will influence future referral guidelines Will influence future referral guidelines and provide guidance for other and provide guidance for other interventions interventions prior toprior to or along sideor along side the the referral to the lymphoedema servicereferral to the lymphoedema service

Education: Under -graduate Education: Under -graduate programme at University of programme at University of UlsterUlster In partnership with the Schools of In partnership with the Schools of

Nursing and RadiotherapyNursing and Radiotherapy

Web based learning: notes, case studies Web based learning: notes, case studies and videosand videos

Lecture and case study discussionLecture and case study discussion

Piloted in 2009 and continuing to Piloted in 2009 and continuing to develop for future roll out with other develop for future roll out with other schoolsschools

Lobbying and InfluencingLobbying and Influencing

Regional Strategic Regional Strategic developmentsdevelopments

Influencing the development of Service Influencing the development of Service Frameworks - Cancer and Cardio Frameworks - Cancer and Cardio vascularvascular

- central to the reform of health and - central to the reform of health and social care servicessocial care services

LNNI FocusLNNI Focus - timely provision of agreed patient

information - access to lymphoedema services - role of screening

ResearchResearch The role of Bioimpedence for screening The role of Bioimpedence for screening

of post surgical patients of post surgical patients - funded by Friends of the Cancer - funded by Friends of the Cancer Centre)Centre)

Quality of Life (QoL) Quality of Life (QoL)

- to provide us with the best tool to - to provide us with the best tool to measure QoLmeasure QoL

- to assess how much this is effected by - to assess how much this is effected by lymphoedemalymphoedema

- sponsored by LNNI - sponsored by LNNI

SummarySummary This coordinated approach, using a This coordinated approach, using a

network, has facilitated:network, has facilitated: - cross trust working and shared - cross trust working and shared

learninglearning - access and liaison with the - access and liaison with the

Department Of Health and local Department Of Health and local commissionerscommissioners

- Patient Involvement- Patient Involvement - Partnerships with other agencies e.g. - Partnerships with other agencies e.g.

universitiesuniversities - development of regional tools e.g. - development of regional tools e.g.

website, min data set, informationwebsite, min data set, information