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Welcome to the Southern Trust Stakeholder Event. Lymphoedema Network Northern Ireland (LNNI). Launched February 2008 along side the CREST guidelines Budget of £0.5 million for regional service development info@lnni.org. Working together to develop lymphoedema services on a regional basis
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Lymphoedema Network Northern Ireland (LNNI) • Launched February 2008 along side the CREST guidelines • Budget of £0.5 million for regional service development • info@lnni.org
Working together to develop lymphoedema services on a regional basis Accountable to DoH Board meets 3 monthly to feedback on development, waiting lists etc Consists of clinical staff, trust directors, DoH, patient representatives
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/immediate access - complex conditions - Supported by the new regional Service Frameworks: cancer and cardio-vascular
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
Service Mapping All clinical areas who manage patients with lymphoedema were surveyed It considered *resources, such as rooms, equipment etc *training *service provision
Areas for improvement • Increase availability of garment measuring & garment varieties in services providing ‘at risk’ care • Guidance & leaflets to be distributed across all services • Ensure treatment provided only by specialist practitioners, e.g. limb volume measurement & MLD
Areas for improvement Ensure all four cornerstones of treatment made available in services providing treatment Link with planning to ensure future facilities meet treatment requirements Improve multi-professional links for onward referral options Review computer and internet accessibility & admin resources in light of LNNI dataset
Progress to date At risk leaflets for both cancer and non cancer related lymphoedema now available and being rolled out to health care professionals with awareness education Education to ensure that patients are identified quickly and referred to lymphoedema services-thus 4 cornerstones of care are available
Progress cont’d New accommodation pending in Portadown and Banbridge Primary Care Centres All services have access to IT
Focus Groups May 2009 2 focus groups were held They were asked to comment on Advice and information Treatment Facilities Access to service Review process
Key recommendations Everyone who has surgery in around the lymphnodes should be warned about the possibility of lymphoedema Produce leaflets with details of community/voluntary organisations and support groups in the area review system to see if access to appointments can be improved and more flexible for those who want it
Interest in attending a local support group • Ensure repeat garments are provided in a timely fashion
Process • Independent facilitators were used so that there was no bias • This exercise was repeated in each of the Trusts using the same questions • A regional report was then collated
Patient Feedback No consistent information Many never received preventative advice
Leaflets • Patients have been involved in the development of leaflets • ‘At Risk’ non cancer related • ‘At Risk’ Arm leaflet • ‘At Risk’ leg leaflet • The Northern Ireland Lymphoedema Support Group have leaflets for those who already have lymphoedema
Leaflets are being given to the key health care professionals who meet the ‘at risk’ patient Also available from your lymphoedema specialist
Service Development • Regional funding to employ clinical lead and specialist staff • Lead role is to support the clinical staff with complex cases as well as carry own caseload • Provides education to health care professionals • Service development-to assess areas of greatest need and how to address with existing resources
Garment Provision There have been changes to how many of you receive your garments Urgent need for financial savings to protect the services for patients Many now available on prescription via GP This may result in a change to your garment but will ensure you get it in a timely fashion
Lymphdat How many lymphoedema patients are there in NI? We just don’t know! We have currently exceeded the predicted number for our population Lymphdat will be a database of lymphoedema patients-it will allow us to have a better idea of the size of the problem
Information on Lymphdat • Your permission will be required • It will have restricted access to each clinical lead and one clerical support worker • It will be used to extract information on the prevalence of lymphoedema • It will contain info on: diagnosis, assessment, treatment, outcomes, reviews etc.
Initially used to extract simple information but eventually used as a research tool
PPI • There are increasing opportunities to involve patients and the public: -Network meetings, -Working groups eg leaflet development -Focus groups • Important voice • Please complete the questionnaire
Workshop! Q1. How could your experience of the lymphoedema service be improved? Q2. What concerns you most about having lymphoedema? Q3. Any else you want to tell us?
