Lymphoedema

Treatments may include:

• Skin care
• Exercise
• Weight management
• Compression garments
• Multi- layer lymphoedema bandaging – to improve the shape and size of severe swelling
• Simple lymphatic drainage ‐ a skin moving technique similar to massage
• Manual lymphatic drainage ‐ a more intense specialist massage technique
• Kinesio Taping
• Intermittent Pneumatic Compression therapy

You may be asked to get onto a couch to enable the therapist to assess you. If you have difficulty getting in and out of a chair or bed, or need special equipment to help you, please let the clinic know before you come to your appointment.

If you think you would like someone else to be present, you are welcome to bring a friend, family member or carer or ask us to provide a chaperone for you.

At the end of your initial assessment we will agree a treatment plan. We’ll rarely start treatment at this initial appointment and you’ll need to return to the clinic for further appointments.

• Lymphoedema Support Network – Covid 19 (Word Document)
• Lipoedema Uk (website)
• COVID-19 vaccination and lymphoedema
• Covid 19 and flu booster vaccinations

Coronavirus Vaccine Advice from the British Lymphology Society:

Please advise anyone who has lymphoedema that lymph node swelling can be a side effect of any vaccine but is a known side effect of both the Moderna and Pfizer COVID-19 vaccines. However, we strongly urge that they accept whichever vaccine is offered, providing they have no contraindications.

As per previous advice from Prof. Peter Mortimer, ( see LSN advice) anyone with lymphoedema of the arm is advised to get the vaccine in the opposite arm or thigh.

This advice also applies to those who do not have lymphoedema but who have been treated for breast cancer. They should request the vaccine in the opposite arm from their breast cancer treatment. If they have had lymph nodes removed or treated on both sides, the injection should be in the thigh or buttocks.

The Pfizer and Moderna COVID-19 vaccines documents confirm it may be given in the thigh. This is stated on the vaccine documents in a footnote.

What is Cellulitis?

If you have lymphoedema, the build-up of fluid in your tissues makes you more vulnerable to infection and your lymphatic system, in the affected area, does not function adequately to fight infection. Cellulitis is a bacterial infection of the deep layer of skin (dermis) that often affects people with lymphoedema. Cellulitis can also sometimes cause lymphoedema.
Symptoms of cellulitis can include:

• redness and a feeling of heat in the skin
• pain and increased swelling in the affected area or in the armpit or groin
• a high temperature (fever) or chills
• flu like symptoms

Cellulitis rarely affects both legs at the same time, this may be a syndrome called Red Legs. For more information on Red Legs please see the British Lymphology Society Red Leg Pathway.

What should I do if I develop cellulitis?

1. Contact your doctor immediately as you will need antibiotic treatment. For information on the type of antibiotics used in the treatment of cellulitis in lymphoedema, see the Cellulitis Consensus Document available from this page. You can take this to your GP to help them to treat you
2. Remove all compression garments until the area feels better and they can be tolerated again. Once the affected area is comfortable you should resume wear.
3. Suspend other forms of treatment such as Lymphatic Drainage and exercise programmes until your symptoms have responded to antibiotic
4. Elevate the affected limb
5. The recommended pain relief is Paracetamol

Following an episode of cellulitis

If you feel your lymphoedema is worse or your compression garment no longer fits, following the resolution of the infection, then please contact the lymphoedema clinic for advice.

• Lymphoedema Service – Exercise and lymphoedema RCHT1636
• Tripudio flow exercises to aid lymphatic drainage
• Exercises for legs and feet
• Movement to Music
• Exercises for arm and leg lymphoedema
• A series of videos which includes: Exercise and Healthy Eating
• Cornwall healthy weight and exercise services

Lymphoedema and Lipoedema:

• What is lymphoedema?
• Lymphoedema Service (RCHT 1535)
• Lymphoedema Service – Obesity related lymphoedema (RCHT1637)
• Lymphoedema Service – Lipoedema (RCHT1694)
• A series of videos which includes: Lymphoedema and Lipoedema
• Leg Lymphoedema – a series of videos on living with and managing it
• Lymphoedema your questions answered
• Lipoedema
• Managing pain in Lipoedema

Lymphoedema after breast cancer

• Lymphoedema Service – A well fitting bra
• Lymphoedema Service – Breast lymphoedema (RCHT1738)
• Stretches for cording

Head and neck Lymphoedema

• Exercises for head and neck lymphoedema
• Lymphoedema Following Treatment For Head And Neck Cancers

Genital Lymphoedema

• A series of videos which includes: Genital lymphoedema
• Exercises for genital lymphoedema

Children and Young people

• A series of videos which includes: Children and Young People, and Families

Treatment and Self-management

• Lymphoedema Service – Skin care and infection in lymphoedema (RCHT1638)
• Lymphoedema Service – Holidays and travel for people with lymphoedema (RCHT1635)
• Lymphoedema Service – Compression garments for leg lymphoedema (RCHT1634)
• Lymphoedema Service – Compression Garments For Arm Lymphoedema (RCHT1633)
• Lymphoedema Service – Kinesio Taping (RCHT1538)
• Manging your Lymphoedema: Easy Read Format
• A series of videos which includes: Skincare, Compression garments, Holidays and travel

Surgery

• Lymphoedema – Currently the only surgery for Lymphoedema supported by the NHS is Liposuction and this requires exceptional funding. The surgical options for lymphoedema are detailed here.
• NICE guideline: Liposuction for chronic lymphoedema
• NICE guideline: Liposuction for chronic lipoedema

Websites with information on lymphoedema

• Lymphoedema Support Network
• Information from Breast Cancer Care
• Information from Macmillan Cancer Support
• Lymphoedema information on NHS Choices
• British Lymphology Society
• MLD UK (Professional association of manual lymphatic drainage practitioners).

Websites with information on lipoedema

• Lipoedema UK
• Talk Lipoedema
• Lipoedema information on NHS Choices
• British Lymphology Society
• MLD UK (Professional association of manual lymphatic drainage practitioners).
• International Lipoedema Association

CLLASS Cornwall Lymphoedema and Lipoedema for Activity, Social Support

The aims of CLLASS are supporting one another, fundraising, socialising and education. For further information please visit the website http://cllass.org.uk/ or contact cllasscornwall@gmail.com

Lymphoedema

• Lymphoedema Support Network
• Lymphoedema United
• Lymph What Oedema

Lipoedema

• Lipoedema UK
• Talk Lipoedema
• Lipoedema Ladies

Lymphoedema Service – Following discharge from the Lymphoedema Clinic (RCHT1693)

Following discharge from The Lymphoedema Clinic the patient will need to request their compression garments prescribed by their GP annually. A prescription letter will be sent to the Patient’s GP and a copy to the patient. This letter will give full details of the patient’s hosiery prescription and when the repeat date is due. Each year the patient can request a repeat prescription from their GP which will be fulfilled by their Pharmacy or an online prescription service. If the Pharmacy has a query or any problems getting the correct garment they should contact the supplier who will be able to assist.

For further guidance, please refer to the following documents:

• Macmillan dispensing to patients with lymphoedema or chronic oedema: a guide for pharmacists
• Wound UK compression therapy for pharmacy teams

Made to measure Garments

If the prescription is for a ’Made to Measure garment’, a size or measurements are not required. Please quote the Order Reference number as shown in the discharge letter and the company will make the repeat garment, to the same size as previously ordered. The Order Reference number is unique to the patient. Prescriptions for made to measure hosiery can be fulfilled by the pharmacy in the usual way or using an on-line prescription service as shown below.

Sigvaris Group

Sigvaris Group have changed the names of some of their products. Therefore from 1st January 2020 they have set up a support line for any Sigvaris issues with products and ordering. Please contact 01264 326666 Option 0.

Juzo Dynamic combined armsleeve and mitten (A-G)

This sleeve has been discontinued however the Classic combined armsleeve and mitten is a direct replacement. For further information please contact Juzo UK on Telephone: 0161 358 0104 or email: sales@juzo.co.uk

JOBST – Bellavar

From 1st May 2020 JOBST Bellavar will be replaced and re-named as JOBST Classic on drug tariff. If you have any patients currently in JOBST Bellavar you will need to switch their next order to JOBST Classic. Please contact the supplier on 0845 1223600 who will be able to supply you with the code changes and offer advice for prescription requests.

Prescription services:

Online pharmacy services offer a free compression garment, prescription delivery service for patients, this service is free of charge but prescription charges will apply. Prepaid envelopes can be obtained from the companies. Examples of these services are:

Daylong

www.daylong.co.uk Tel 0800 195 0160

Patient Choice

www.patientchoice.net/  Tel 0800 862 0686

Well healthcare supplies

www.well.co.uk/ Tel 0333 010 2222

For Essity / Jobst garments only

www.bsnmedical.co.uk Tel 0845 1223600

For Medi garments only

enquiries@mediuk.co.uk  Tel 01432 373500

Items not on FP10 Prescription

Occasionally due to complex clinical need patients are discharged with items that are not available on FP10 prescription. The prescriber will need to request the item from the RCHT Appliance Office annually, quoting the Order reference shown in the prescription letter.  The Appliance Office will then order the items and send to the patient directly.

Prescribers should email the request to rch-tr.ApplianceOrder@nhs.net

Prescription Charges for Compression Garments

Unless you are exempt from prescription charges or have a pre-paid prescription certificate you will need to pay a prescription charge for your compression garment.

Your pharmacy will advise how much this is and whether a pre-paid certificate is more cost effective.

As a general rule you should be charged one prescription charge for each type of item i.e. if you have four pairs of identical stockings then this would be one prescription charge, however if you have two pairs of black and two pairs of beige then this would be two prescription charges.

Patients discharged with a hosiery prescription will have been stable for some time. We would therefore not expect them to need to be re-measured for compression hosiery as they should remain within the tolerance of the hosiery. If the patient is not reporting any problems with their compression hosiery then a repeat prescription can be made. However if the patient’s weight or lymphoedema has changed significantly or they report issues with their hosiery it would be prudent to check that they still fit within the hosiery prescribed. If the patient reports weight loss or gain then they should just require a different size. If the patient feels their condition has become worse than they should be re-referred back to the lymphoedema clinic

Measuring for Leg hosiery

As a rule, the following circumferences should be checked:

• B above the malleolus
• C widest part of calf
• D Below knee or G top of leg

Measuring Toecaps

•  A Base of toes

Measuring for Arms garments

As a rule, the following circumferences should be checked:

Hand

• A Base of the MCP joints

Arm

• C Wrist
• E Elbow
• G Top of arm

Sizing Charts

The sizing charts for the hosiery are all available online and can be found on the links below.

• Essity (formerly BSN)
• Juzo
• L&R (formerly Activa)
• Medi
• Sigvaris
• Haddenham Healthcare

Made to Measure Garments

The patient will be discharged with a well-fitting garment that they have been stable in for some time. The measurements should therefore not need to be changed. However if the patient’s weight or lymphoedema has changed significantly or they report issues with their hosiery it would be prudent to check that they still fit within the hosiery prescribed. If the patient reports weight loss or gain then they should just require a different size. If the patient feels their condition has deteriorated, please submit a new referral to the Lymphoedema Clinic.

To obtain the measurements for the patient you will need to contact the company and ask for the measurement form. There is a 2cm tolerance in the hosiery up or down (i.e. the patient can be 2 cm smaller or larger and the garment will still fit).

Referrals:

We accept referrals from any healthcare professional, please see the referral and discharge guideline.
Internal referrals should be made using maxims.
GP referrals should be made using eRS.
All other external referrers should use the referral form below and email it to: rcht.therapybookingteam@nhs.net.

• CHA4020: Lymphoedema Referral Form

Compression wraps

Compression wraps are commonly used to treat leg lymphoedema. They are adjustable and can accommodate a wide range of measurements. Most can also be trimmed to reduce the size of the garment as the oedema reduces therefore prolonging the use of the garment. They should be used over a liner or yellow line and dressings should be used to control exudate where needed. There are a number of compression wraps on the market the most commonly used in Cornwall are the Juzo ACS, the Juzo 6000 and the Medi Juxta-fit. They are all available on FP10. Instructions on how to measure for them, fit them (including videos) and care for them are on the links below:

Juzo ACS Wraps

• www.juzo.com
• How to prepare the ACS system
• How to fit the ACS lower leg

Juzo 6000

https://www.juzo.com/en-uk/products/compression-garments/compression-therapy/lower-limb/juzo-compression-wrap

Additional Velcro can be ordered for Juzo wraps should the Velcro become damaged or worn out.

Medi Juxta-Fit wrap

• https://www.mediuk.co.uk/shop/juxta-fit-lower-legging.html
• www.mediuk.co.uk
• How to measure and fit a Juxtalite
• How to measure for and fit a Juxtafit

Toecaps

Toecaps can be used with compression bandaging to reduce toe and base of toe oedema. The following toecaps are trim to fit so the toes can be reduced in length. They can be washed by the patient and reused. They are both available on FP10.

Haddenham Healthcare MicroFine toecap

Available in 20-36 mmHg
https://hadhealth.com/microfine-toecap

Juzo Classic Seamless Toecap

Available in Class 1 and Class 2
https://www.juzo.com/en-uk/products/compression-garments/compression-therapy/upper-limb/juzo-classic-seamless

• British Medical Journal module on Lymphoedema and Chronic Oedema
• British Medical Journal module, Clinical pointers: Managing chronic oedema/lymphoedema in primary care
• Legs Matter educational videos for lower limb lymphoedema
• L&R online training
• British Lymphology Society Wet Legs Pathway
• RCGP Lipoedema an Adipose Tissue Disorder
• British Medical Journal Clinical pointers: Managing chronic oedema/lymphoedema in primary care
• International Lymphoedema Framework free webinars and a range of resources

We recommend that patients with lymphoedema, who are wearing compression garments, should have, as a minimum, an annual vascular assessment. We do not recommend Ankle Brachial Pressure Indices (ABPI) in the presence of oedema, obesity and hyperkeratosis, as the results can be falsely elevated.

A full clinical assessment of risk factors and presenting symptoms is needed; pedal pulses may also be needed depending on the age and health of the patient.

For further information about vascular assessment in lymphoedema please see the following documents:

The British Lymphology Society

• Position paper for Ankle Brachial Pressure Index (ABPI)
• Informing decision making prior to the application of compression therapy
• Vascular Assessment Tool