Lymphoedema Lymphoedema network Northern network Northern

Ireland.Ireland.User Group Themed User Group Themed

Report.Report.

Paula DonnellyPaula Donnelly

Lymphoedema Specialist Lymphoedema Specialist PractitionerPractitioner

February 2010February 2010

Patient and Public Patient and Public Involvement in Involvement in

Lymphoedema Services.Lymphoedema Services.• The role of Patient and Public The role of Patient and Public

Involvement in the lymphoedema Involvement in the lymphoedema network is to enable individuals to network is to enable individuals to be actively and meaningfully be actively and meaningfully involved in the planning and involved in the planning and development of lymphoedema development of lymphoedema services in Northern Ireland.services in Northern Ireland.

Quality standards for Quality standards for Health and Social care.Health and Social care.

• Corporate leadership and accountability Corporate leadership and accountability of organisations.of organisations.

• Safe and effective careSafe and effective care• Accessible, flexible and responsive Accessible, flexible and responsive

servicesservices• Promoting, protecting and improving Promoting, protecting and improving

health and social well beinghealth and social well being• Effective communication and informationEffective communication and information• The organisational contextThe organisational context• ImplementationImplementation• OutcomesOutcomes

Focus Groups.Focus Groups.

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

Working in partnership.Working in partnership.

• Improves the quality of lymphoedema Improves the quality of lymphoedema servicesservices

• Explores patients perceptions of the Explores patients perceptions of the lymphoedema servicelymphoedema service

• Provides the means of checking Provides the means of checking patient satisfaction with the servicepatient satisfaction with the service

• Provides the means for improving the Provides the means for improving the service based on patient requirementsservice based on patient requirements

Key Areas Considered by Key Areas Considered by The Focus Groups.The Focus Groups.

• Access to patient advice / Access to patient advice / information about lymphoedemainformation about lymphoedema

• Timely diagnosisTimely diagnosis• Treatment availability / patient Treatment availability / patient

reviewreview• Treatment facilitiesTreatment facilities• Treatment experienceTreatment experience• Garment provisionGarment provision

Patient advice / Patient advice / informationinformation

• Group discussion highlighted a general Group discussion highlighted a general lack of knowledge regarding the ‘at risk ‘ lack of knowledge regarding the ‘at risk ‘ and chronic nature of the condition. and chronic nature of the condition.

• Lack of patient information leaflets / Lack of patient information leaflets / booklets in some areas. Other groups booklets in some areas. Other groups reported sufficient access to information.reported sufficient access to information.

• It was also felt that the psychological It was also felt that the psychological impact of lymphoedema should be impact of lymphoedema should be addressedaddressed

Diagnosis of Diagnosis of lymphoedema.lymphoedema.

• Groups reported delays in Groups reported delays in diagnosis /incorrect diagnosisdiagnosis /incorrect diagnosis

• It was also acknowledged that things It was also acknowledged that things were slowly improvingwere slowly improving

• Groups emphasized the need to Groups emphasized the need to increase medical awareness trainingincrease medical awareness training

TreatmentTreatment

• All groups felt that they were happy All groups felt that they were happy with flexible appointments and with the with flexible appointments and with the frequency of appointmentsfrequency of appointments

• Users felt that the six month review Users felt that the six month review with the provision of new garments with the provision of new garments should be common practice across should be common practice across Northern IrelandNorthern Ireland

• Users also felt it was important to be Users also felt it was important to be able to access the service should a able to access the service should a crisis event occur ie: Cellulitis infectioncrisis event occur ie: Cellulitis infection

FacilitiesFacilities

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

Treatment experiencesTreatment experiences

• All group reported positive experiences All group reported positive experiences with the lymphoedema servicewith the lymphoedema service

• Information provided by staff was very Information provided by staff was very beneficialbeneficial

• It was noted that there was a lack of It was noted that there was a lack of dedicated qualified and experienced dedicated qualified and experienced staffstaff

• It was felt that the government must be It was felt that the government must be made aware of staff shortagesmade aware of staff shortages

Garment Provision.Garment Provision.

• On the whole user groups felt that On the whole user groups felt that garment provision was very efficient garment provision was very efficient and that ordering pathways were and that ordering pathways were effectiveeffective

Recommendations.Recommendations.• Continue to promote awareness training for Continue to promote awareness training for

all HCP working with ‘at risk’ patient groups all HCP working with ‘at risk’ patient groups with emphasis on timely diagnosis and access with emphasis on timely diagnosis and access to treatmentto treatment

• Student education of HCPStudent education of HCP• Continued roll out of information leaflets and Continued roll out of information leaflets and

bookletsbooklets• Inclusion of potential psychological impact of Inclusion of potential psychological impact of

lymphoedema in all literaturelymphoedema in all literature• Evolve LNNI website into a step by step guide Evolve LNNI website into a step by step guide

to lymphoedemato lymphoedema• Greater flexibility of serviceGreater flexibility of service• Increase access to serviceIncrease access to service