HNY Policy and Pathway Repository - Humber

Lymphoedema is a chronic swelling due primarily to a failure of lymph drainage. It arises from a congenitally determined lymphatic abnormality or from damage to lymphatic structures by inflammation, including infection, tumour, surgery or radiation. It is essentially incurable, but the major manifestations, namely swelling and infection (cellulitis) can be improved and controlled.

Swelling can affect one or more limbs, head & neck, mid-line and genital areas.

There are two types of Lymphoedema, primary and secondary:

• Primary Lymphoedema occurs because of abnormality in the development of the lymphatic system, leading to poor drainage. 
• Secondary Lymphoedema results from damage to the lymphatic system e.g. by cancer or cancer related treatments, trauma, infection, inflammation and venous disease

‘Chronic Oedema’ is a type of secondary oedema and is a term used to describe a group of conditions characterised by the presence of swelling within tissues of the body, caused by the accumulation of excess fluid within the interstitial space of the affected area and lasting more than 3 months, and may not fully resolve with elevation and rest. It can be caused by a wide range of conditions e.g., chronic heart failure, chronic venous hypertension and with secondary lymphatic failure. Damage to vessels may have a more insidious onset as a consequence of obesity, lack of activity, advanced stages of various conditions or lipoedema.

CHCP non- cancer lymphoedema service will provide the following:

• Assessment and treatment of primary and secondary lymphoedema
• Identification of patients with lymphoedema and enable early intervention in order to limit disease progression
• Development of holistic nursing care plans outlining interventions by the lymphoedema service as well as from associated services such as Tissue Viability, weight management, DVT, acute dermatology and vascular services, and palliative care services as required
• Advice and support promoting self -care regarding the ‘4 cornerstones of treatment’ i.e. massage, exercise, compression therapy and skin care
•  Decongestive therapy / optimum symptom management for patients as follows:

Intensive Phase – duration and type dependant on patient need but will include elements of the below:

• • BMI and Limb volume measurements
  • Measurement, prescribing and fitting for compression garments (usually in the form of hosiery e.g. socks/stockings/tights or Velcro wrap systems or sleeves and gloves) to the affected areas
  • Prescribing and treatment with multilayer lymphoedema compression therapy bandages following assessment and when appropriate
  • Lymph assist therapy following assessment and when appropriate.
  • Support for the psychological / social impact of living with lymphoedema
  • Support and promotion of long term self-care and management of people with lymphoedema including education and information provision to support patients and their carers in the community including:
    • Teaching of Simple Lymphatic Drainage Techniques
    • Skin Care and integrity education for prevention of cellulitis
    • Compression therapy advice and support for long term self-care
    • Exercise and weight management advice and support

Once the intensive phase of treatment is complete patients will be discharged from the service, however they will be able to self-refer within one year of discharge if they are experiencing problems and require additional support to self-care and manage their lymphoedema.

Notes re high Body Mass Index (BMI):

People who have a BMI of 40 or over, should not be referred to the Lymphoedema Service.  They should first be referred to specialist weight management services and be actively losing weight over a sustained period of time (6 months) before considering referral to the lymphoedema service.

For patients with a BMI over 40 who have asymmetrical/ unilateral swelling please ring 01482 247111 to request a Clinician-to-Clinician discussion for each individual patient.

People with a BMI of above 35 (but below 40) may be referred to the Lymphoedema Service if there is evidence of a commitment to a significant weight loss regime, hence, referral to specialist weight management must be made prior to the Lymphoedema Service referral.  The Lymphoedema service will assess the patient, and they will be given lymphoedema skin care, elevation and exercise advise and may be fitted with compression garments. When an acceptable weight loss is evident a re-referral to the service for a course of intensive Lymphoedema treatment may be made.

DVT and patients with systemic infection to be excluded and treated prior to referral

This is a non-cancer lymphoedema service   - current pathways remain unchanged for patients with cancer related Lymphoedema

If patient has a wound – a referral to Community Nursing or Treatment Room Services – via the Lower Limb Pathway, should be made.

Differential diagnosis for oedema should be excluded, such as Deep Vein Thrombosis, Arthritis, Baker Cyst and Lymphatic or Vascular Obstruction. 

The referral criteria in place regarding BMI>40 patients engaging with the Specialist Weight Management Service, is for several reasons:

• Obesity is a contributing factor towards chronic lower leg oedema and compression alone will not be sufficient in treating this. 

This issue must be addressed first and foremost.

Research shows that any oedema that has reduced will return swiftly if improved lifestyle changes are not made. 

• Specialist Weight Management Services are a multi-disciplinary team consisting of dieticians, physiotherapists, physical activity specialist and psychological wellbeing practitioners.  There is also a consultant with a special interest, training and expertise in treating people living with obesity who can assist medically complex patients and follow bariatric pathways. 

• Patients who have a high BMI often find it difficult to bend down to their feet to apply any compression garments.  Compression applicators are usually not large enough to accommodate the size of the limb.

• Most patients are not able to fit into any adjustable compression wraps due to sizing and custom-made stockings are not suitable due to skin folds and difficulty applying them.

• Lymphoedema compression garments have short-stretch properties, which means they exert high working pressure and low resting pressure. For these garments to be fully effective, patients need to be active, as being active enhances the effects of the compression. However, reduced mobility is often a challenge for obese patients. In isolation, compression isn't going to be as effective as it is if the patient is active.

Do Not Refer

• Patients under the age of 18 years
• Patients who have lymphoedema due to cancer, as their management is provided by the Acute Trust
• Patients with a BMI>40
• If GP suspects patient has differential diagnosis for oedema these should be excluded, such as Deep Vein Thrombosis, Arthritis, Baker Cyst and lymphatic or vascular obstruction and heart failure.

Referral Criteria

GPs can refer from Primary Care for patients who have swelling present for more than 3 months which does not resolve with elevation and rest, and despite receiving optimum treatment for the underlying aetiology who meet the following criteria:

Adults over the age of 18

Patients registered with a Hull or ER GP

Patients with a non-cancer cause of Lymphoedema

Patients with a BMI <40

See notes above regarding patients with a BMI>35

When available please include results of recent cardiac and renal blood tests.

• Referrals will only be accepted via NHS E-Referrals on the agreed referral form.
• Each section of the Community Lymphoedema referral form needs completing as incomplete referrals may be returned causing delays.
• All new community referrals to the Lymphoedema service will be managed by the CHCP Care Coordination Hub
• Completed referral forms will be reviewed by CHCP Care Coordination Hub and if suitable the patient will be booked to attend an appointment within 6 weeks of the referral date.
• Patients will attend a Lymphoedema Clinic based at either Bransholme Health Centre or Elliott Chappell Health Centre
• Referrers are requested to encourage patients to attend the Lymphoedema Clinics and should not request home visits
• If patients are unable to attend a Lymphoedema Clinic a home visit will only be offered in exceptional circumstances to Hull patients
• CHCP Care Coordination Hub will take all calls regarding the service and pass messages to the service via SystmOne task function

Additionally, any of the below should be managed / treated or recurrence excluded prior to referral:

• Hypertension/ Hypotension                    
• Diabetes                                                  
• Cellulitis                                                   
• Hyperthyroidism/ Hypothyroidism         
• Previous surgery                                 
• Previous DVT or trauma to limb             
• Unstable renal failure                           
• Unstable heart failure
• Previous malignancy                              

Lymphoedema Clinical Guidance

• Complete all questions on the Referral Form

• Incomplete referral forms will be rejected by the service

A prescription for compression bandages / hosiery or compression wrap systems will be provided by the Lymphoedema service for patients under the care of the service and until they are discharged back to the care of their GP.