1. Welcome to the Southern Trust Stakeholder Event

2. 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

3. Working together to develop lymphoedema services on a regional basisWorking together to develop lymphoedema services on a regional basis Accountable to DoHAccountable to DoH Board meets 3 monthly to feedback on development, waiting lists etcBoard meets 3 monthly to feedback on development, waiting lists etc Consists of clinical staff, trust directors, DoH, patient representativesConsists of clinical staff, trust directors, DoH, patient representatives

4. The LNNI Vision To change the emerging picture of the condition over the next 10 years, reducing incidence rates and the number of chronic presentationsTo 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/immediate access - awareness/screening/immediate access - complex conditions - complex conditions - Supported by the new regional Service Frameworks: cancer and cardio- vascular - Supported by the new regional Service Frameworks: cancer and cardio- vascular

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

6. Service Mapping

7. All clinical areas who manage patients with lymphoedema were surveyedAll clinical areas who manage patients with lymphoedema were surveyed It consideredIt considered *resources, such as rooms, equipment etc *training *service provision

8. Locations offering Treatment

9. Availability of treatment

10. Areas for improvement Increase availability of garment measuring & garment varieties in services providing ‘at risk’ care Increase availability of garment measuring & garment varieties in services providing ‘at risk’ care Guidance & leaflets to be distributed across all services Guidance & leaflets to be distributed across all services Ensure treatment provided only by specialist practitioners, e.g. limb volume measurement & MLD Ensure treatment provided only by specialist practitioners, e.g. limb volume measurement & MLD

11. Areas for improvement Ensure all four cornerstones of treatment made available in services providing treatmentEnsure all four cornerstones of treatment made available in services providing treatment Link with planning to ensure future facilities meet treatment requirementsLink with planning to ensure future facilities meet treatment requirements Improve multi-professional links for onward referral optionsImprove multi-professional links for onward referral options Review computer and internet accessibility & admin resources in light of LNNI datasetReview computer and internet accessibility & admin resources in light of LNNI dataset

12. 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 educationAt 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 availableEducation to ensure that patients are identified quickly and referred to lymphoedema services-thus 4 cornerstones of care are available

13. Progress cont’d New accommodation pending in Portadown and Banbridge Primary Care CentresNew accommodation pending in Portadown and Banbridge Primary Care Centres All services have access to ITAll services have access to IT

14. Focus Groups

15. May 2009 2 focus groups were heldMay 2009 2 focus groups were held They were asked to comment onThey were asked to comment on 1.Advice and information 2.Treatment 3.Facilities 4.Access to service 5.Review process

16. Key recommendations Everyone who has surgery in around the lymphnodes should be warned about the possibility of lymphoedemaEveryone 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 areaProduce 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 itreview system to see if access to appointments can be improved and more flexible for those who want it

17. Interest in attending a local support groupInterest in attending a local support group Ensure repeat garments are provided in a timely fashionEnsure repeat garments are provided in a timely fashion

18. 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

19. Patient Information Leaflets

20. Patient Feedback No consistent information Many never received preventative advice

21. Leaflets Patients have been involved in the development of leaflets Patients have been involved in the development of leaflets ‘At Risk’ non cancer related ‘At Risk’ non cancer related ‘At Risk’ Arm leaflet ‘At Risk’ Arm leaflet ‘At Risk’ leg leaflet ‘At Risk’ leg leaflet The Northern Ireland Lymphoedema Support Group have leaflets for those who already have lymphoedema The Northern Ireland Lymphoedema Support Group have leaflets for those who already have lymphoedema

22. Leaflets are being given to the key health care professionals who meet the ‘at risk’ patientLeaflets are being given to the key health care professionals who meet the ‘at risk’ patient Also available from your lymphoedema specialistAlso available from your lymphoedema specialist

23. Southern Trust Service Development

24. Service Development Regional funding to employ clinical lead and specialist staff 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 Lead role is to support the clinical staff with complex cases as well as carry own caseload Provides education to health care professionals Provides education to health care professionals Service development-to assess areas of greatest need and how to address with existing resources Service development-to assess areas of greatest need and how to address with existing resources

25. Garment Provision There have been changes to how many of you receive your garmentsThere have been changes to how many of you receive your garments Urgent need for financial savings to protect the services for patientsUrgent need for financial savings to protect the services for patients Many now available on prescription via GPMany now available on prescription via GP This may result in a change to your garment but will ensure you get it in a timely fashionThis may result in a change to your garment but will ensure you get it in a timely fashion

26. Lymphdat

27. Lymphdat How many lymphoedema patients are there in NI?How many lymphoedema patients are there in NI? We just don’t know!We just don’t know! We have currently exceeded the predicted number for our populationWe 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 problemLymphdat will be a database of lymphoedema patients-it will allow us to have a better idea of the size of the problem

28. Information on Lymphdat Your permission will be required Your permission will be required It will have restricted access to each clinical lead and one clerical support worker 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 be used to extract information on the prevalence of lymphoedema It will contain info on: diagnosis, assessment, treatment, outcomes, reviews etc. It will contain info on: diagnosis, assessment, treatment, outcomes, reviews etc.

29. Initially used to extract simple information but eventually used as a research toolInitially used to extract simple information but eventually used as a research tool

30. Patient and Public Involvement

31. PPI There are increasing opportunities to involve patients and the public:There are increasing opportunities to involve patients and the public: -Network meetings, -Working groups eg leaflet development -Focus groups Important voiceImportant voice Please complete the questionnairePlease complete the questionnaire

32. Workshop! Q1. How could your experience of the lymphoedema service be improved?Q1. How could your experience of the lymphoedema service be improved? Q2. What concerns you most about having lymphoedema?Q2. What concerns you most about having lymphoedema? Q3. Any else you want to tell us?Q3. Any else you want to tell us?