Lymphoedema Service Update

Gillian McCollum / Pippa McCabe Lymphoedema Clinical Leads

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

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)

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

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)

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-Patients In-Patients

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

Who do we see?

Primary lymphoedema patients Congenital abnormality of lymphatic

system Can be hereditary May be associated with a syndrome, for

example:Syndrome Name Age of Onset

Milroy’s Disease Birth/Childhood

Turner’s Syndrome Birth/Childhood

Meige’s Syndrome Puberty

Who do we see?

Secondary Lymphoedema Patients obstruction or interruption of the lymphatic system by

an external causeTrauma and tissue damage

Lymph node excision

Radiotherapy

Burns

Varicose vein surgery/harvesting

Large/circumferential wounds

Malignant Disease Lymph node mets

Infiltrative Carcinoma

Lymphoma

Pressure from large tumours

Inflammation Rheumatiod Arthritis

Psoriatic arthritis

Dermatitis/eczema

Immobility and dependency

Dependency Oedema

Obesity

Paralysis

Venous Disease Chronic venous insufficiency

Venous ulceration

DVT

Artificial Lymphoedema

Self harm

Low albumin

Infection Cellulitis

Lymphadenitis

Filiariasis

(CREST 2008)

What services do we provide?

Advice and information on skincare and exercise

Manual Lymphatic Drainage Multi-Layer Lymphoedema Bandaging

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

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

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

Variety of Lymphoedema Cases

Simple Arm Lymphoedema Complex Leg Lymphoedema

Concerns & Issues

Major reforms within health service Funding Efficiency savings Recruitment Lack of dedicated treatment space Limited capacity of lymphoedema

service

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