1. Lymphoedema Service Update Gillian McCollum / Pippa McCabe Lymphoedema Clinical Leads

2. Belfast Trust Who are we?  Predominantly outpatient service  3.2 WTE clinical staff  Admin support/therapy assistant just appointed (vacant since Feb 2009)  Clinical Lead coordinates & develops the services in SEB & NWB – 0.5 WTE clinical & 0.5 WTE non clinical

3. Belfast Trust Lymphoedema Specialists South & East Belfast Service:  Jill Lorimer (0.7 WTE)  Diane Stronge (0.5 WTE)  Louise Kerr (0.5 WTE) North & West Belfast Service:  Emma Christie (0.5 WTE)  Tanya Coppel (0.5 WTE)

4. Belfast Trust Where do we see patients? South & East Belfast:  Cancer Centre, BCH  Holywood Arches Centre  Domicillary North & West Belfast:  Ballyowen HC  Carlisle HWB Centre  Grove HWB Centre  Domicillary

5. South Eastern Trust Who are we? Service commenced Feb 2008, consisting of:  Pippa McCabe – Clinical Lead (0.8 WTE)  Laura Patterson – Lymphoedema Specialist (1.0 WTE) We also have other lymphoedema trained physiotherapists in the trust who treat specific groups of patients:  Janet Gabbey (oncology in-patients)  Lesley Nelson (palliative care)

6. South Eastern Trust Where do we see patients?  Ards Community Hospital  Bangor Health Centre (although less regularly)  Marie Curie Centre Belfast  Lagan Valley Hospital  Downpatrick – Pound Lane Health Centre  Ards Community Hospital  Bangor Community Hospital  Ulster Hospital  Lagan Valley Hospital  Downpatrick Hospital  Downshire Hospital Out-PatientsIn-Patients

7.  Specialist palliative care service in the community, NI hospice, Marie Curie & acute oncology service in the cancer centre also treat some lymphoedema patients  Those patients who have chronic skin and/or wound issues may be treated in conjunction with TVN, practice nurses or district nurses  Involve wider multidisciplinary team as necessary – GP, dietician, podiatry, OT etc Other services

8. Who do we see?  Primary lymphoedema patients  Congenital abnormality of lymphatic system  Can be hereditary  May be associated with a syndrome, for example: Syndrome NameAge of Onset Milroy’s Disease Birth/Childhood Turner’s Syndrome Birth/Childhood Meige’s Syndrome Puberty

9. Who do we see?  Secondary Lymphoedema Patients  obstruction or interruption of the lymphatic system by an external cause Trauma and tissue damage Lymph node excision Radiotherapy Burns Varicose vein surgery/harvesting Large/circumferential wounds Malignant DiseaseLymph node mets Infiltrative Carcinoma Lymphoma Pressure from large tumours InflammationRheumatiod Arthritis Psoriatic arthritis Dermatitis/eczema Immobility and dependency Dependency Oedema Obesity Paralysis Venous DiseaseChronic venous insufficiency Venous ulceration DVT Artificial Lymphoedema Self harm Low albumin InfectionCellulitis Lymphadenitis Filiariasis (CREST 2008)

10. What services do we provide?  Advice and information on skincare and exercise  Manual Lymphatic Drainage  Multi-Layer Lymphoedema Bandaging

11. What services do we provide?  Compression Garments  Kinesio taping  Teach patient & their carers self management techniques  6 monthly review appointments  Access to a quarterly complex clinic with involvement from dermatology, vascular and palliative care consultants

12. Other roles & achievements  Education – trust programme; pre & post graduate training; courses; advice booklets etc  Belfast Trust Lymphoedema Network - partnerships with relevant specialities such as vascular, dermatology, oncology etc  Facilitating implementation of cardiovascular & cancer service framework standards  PR campaign – Belfast Telegraph (Nov 2009)  Research  Clinical Minimum Data Set  Engagement with PPI For further details see www.lnni.org

13. Waiting list  Increase in rate of referral  Must meet access targets of 9 weeks  Increase in complexity of cases  Length of intensive treatment required varies greatly from 2 weeks – 6 months  6 monthly reviews

14. Variety of Lymphoedema Cases Simple Arm LymphoedemaComplex Leg Lymphoedema

15. Concerns & Issues  Major reforms within health service  Funding  Efficiency savings  Recruitment  Lack of dedicated treatment space  Limited capacity of lymphoedema service

16. Solutions to the issues??  Raise profile of lymphoedema & lobby at Stormont – but need to be realistic  Raise awareness – patient & professional education  Promote early diagnosis & referral → less intensive treatment required for acute stage of condition  Empower patients & their carers to self manage this chronic condition