SMASAC Short Life Working Group on Lymphoedema - Lymphoedema Care in Scotland, Achieving Equity and Quality

1

Health Boards should accurately identify incidence and prevalence of lymphoedema through improved coding at hospital discharge and in primary care.

On confirmation of diagnosis the following READ codes are recommended:

• G860. lymphoedema post mastectomy
• G861. - other lymphoedema.

ICD10 codes for lymphoedema: I89.0, I97.2, Q82.0 in any diagnosis position.

2

Health Boards should designate Leads for lymphoedema services who should be tasked with developing local pathways for the referral and management of lymphoedema based on existing evidence and guidance, to include management and prevention of cellulitis in people with established lymphoedema, and provision of advice on self management.

3

A SIGN guideline should be developed for the diagnosis, assessment and management of primary and secondary lymphoedema, to include prevention, early recognition and management of cellulitis in primary care. SIGN should consider including lymphoedema in the scope when updating relevant cancer guidelines.

4

Healthcare Improvement Scotland should consider developing QPIs for the management of lymphoedema. Potential indicators could include:

• referral to lymphoedema specialist services/clinics by board area, including type of lymphoedema, referral source, and age ranges to determine equity across the lifespan
• proportions of medical, nursing and AHP staff by board area who have had additional lymphoedema training
• numbers of diagnoses in primary and secondary care, and

5

Scottish Cancer Taskforce should also consider lymphoedema outcomes when proposing updates for relevant sets of cancer QPIs.

6

Health Boards should support and develop a community-based integrated model of tiered care for people with lymphoedema, including complications such as cellulitis applying the principles of integration.

7

Health Board Leads together with regional planning groups should develop a national referral pathway for people with lymphoedema who require assessment for surgery for lymphoedema.

8

NES should commission the development of basic educational modules in various formats for different professional groups - nurses, doctors, physiotherapists, podiatrists and social carers. Separate learning should be considered for non-registered staff as they have less background knowledge of the condition.

9

Health Boards should raise awareness of lymphoedema and cellulitis and pathways for their management amongst health and social care professionals through education and training.

10

All lymphoedema practitioners and specialists should have training in assisting individuals with lifestyle change.

11

Research should be undertaken for lymphoedema treatment to:

• analyse the cost and benefits of treatment versus no treatment,
• estimate the burden of disease and
• identify wasteful treatments and strategies or avenues for savings in relation to lymphoedema treatment particularly in relation to:
• provision of appropriate compression garments for each patient
• prescription of ineffective treatments or unnecessary investigations and delays in treatment.

The CSO should consider proposals for research in these areas.