1. Lymphoedema network Northern Ireland. User Group Themed Report. Paula Donnelly Lymphoedema Specialist Practitioner February 2010

2. Patient and Public Involvement in Lymphoedema Services. The role of Patient and Public Involvement in the lymphoedema network is to enable individuals to be actively and meaningfully involved in the planning and development of lymphoedema services in Northern Ireland.The role of Patient and Public Involvement in the lymphoedema network is to enable individuals to be actively and meaningfully involved in the planning and development of lymphoedema services in Northern Ireland.

3. Quality standards for Health and Social care. Corporate leadership and accountability of organisations.Corporate leadership and accountability of organisations. Safe and effective careSafe and effective care Accessible, flexible and responsive servicesAccessible, flexible and responsive services Promoting, protecting and improving health and social well beingPromoting, protecting and improving health and social well being Effective communication and informationEffective communication and information The organisational contextThe organisational context ImplementationImplementation OutcomesOutcomes

4. Focus Groups. The aim of the focus groups was to review current service users perception of their experience within lymphoedema services in order to generate ideas for improvement and appropriately shape service delivery.The aim of the focus groups was to review current service users perception of their experience within lymphoedema services in order to generate ideas for improvement and appropriately shape service delivery.

5. Working in partnership. Improves the quality of lymphoedema servicesImproves the quality of lymphoedema services Explores patients perceptions of the lymphoedema serviceExplores patients perceptions of the lymphoedema service Provides the means of checking patient satisfaction with the serviceProvides the means of checking patient satisfaction with the service Provides the means for improving the service based on patient requirementsProvides the means for improving the service based on patient requirements

6. Key Areas Considered by The Focus Groups. Access to patient advice / information about lymphoedemaAccess to patient advice / information about lymphoedema Timely diagnosisTimely diagnosis Treatment availability / patient reviewTreatment availability / patient review Treatment facilitiesTreatment facilities Treatment experienceTreatment experience Garment provisionGarment provision

7. Patient advice / information Group discussion highlighted a general lack of knowledge regarding the ‘at risk ‘ and chronic nature of the condition.Group discussion highlighted a general lack of knowledge regarding the ‘at risk ‘ and chronic nature of the condition. Lack of patient information leaflets / booklets in some areas. Other groups reported sufficient access to information.Lack of patient information leaflets / booklets in some areas. Other groups reported sufficient access to information. It was also felt that the psychological impact of lymphoedema should be addressedIt was also felt that the psychological impact of lymphoedema should be addressed

8. Diagnosis of lymphoedema. Groups reported delays in diagnosis /incorrect diagnosisGroups reported delays in diagnosis /incorrect diagnosis It was also acknowledged that things were slowly improvingIt was also acknowledged that things were slowly improving Groups emphasized the need to increase medical awareness trainingGroups emphasized the need to increase medical awareness training

9. Treatment All groups felt that they were happy with flexible appointments and with the frequency of appointmentsAll groups felt that they were happy with flexible appointments and with the frequency of appointments Users felt that the six month review with the provision of new garments should be common practice across Northern IrelandUsers felt that the six month review with the provision of new garments should be common practice across Northern Ireland Users also felt it was important to be able to access the service should a crisis event occur ie: Cellulitis infectionUsers also felt it was important to be able to access the service should a crisis event occur ie: Cellulitis infection

10. Facilities Groups reported that treatments were carried out in either a private room or curtained cubical. It was noted that users preferred separate rooms for treatment.Groups reported that treatments were carried out in either a private room or curtained cubical. It was noted that users preferred separate rooms for treatment.

11. Treatment experiences All group reported positive experiences with the lymphoedema serviceAll group reported positive experiences with the lymphoedema service Information provided by staff was very beneficialInformation provided by staff was very beneficial It was noted that there was a lack of dedicated qualified and experienced staffIt was noted that there was a lack of dedicated qualified and experienced staff It was felt that the government must be made aware of staff shortagesIt was felt that the government must be made aware of staff shortages

12. Garment Provision. On the whole user groups felt that garment provision was very efficient and that ordering pathways were effectiveOn the whole user groups felt that garment provision was very efficient and that ordering pathways were effective

13. Recommendations. Continue to promote awareness training for all HCP working with ‘at risk’ patient groups with emphasis on timely diagnosis and access to treatmentContinue to promote awareness training for all HCP working with ‘at risk’ patient groups with emphasis on timely diagnosis and access to treatment Student education of HCPStudent education of HCP Continued roll out of information leaflets and bookletsContinued roll out of information leaflets and booklets Inclusion of potential psychological impact of lymphoedema in all literatureInclusion of potential psychological impact of lymphoedema in all literature Evolve LNNI website into a step by step guide to lymphoedemaEvolve LNNI website into a step by step guide to lymphoedema Greater flexibility of serviceGreater flexibility of service Increase access to serviceIncrease access to service