Lymphoedema

If you are under the lymphoedema team at the UHNM, there may be times during 2020 that the team are unable to review you in a timely manner due to the lymphoedema nurses being redeployed to help with the coronavirus crisis.

We have written this leaflet to help you self-care during this time. If you do have problems we hope to be able to offer telephone consultations if required and we can be contacted on 01782 676688. The response time may be slower than usual.

Definition of lymphoedema: Failure of the lymphatic system which gives rise to swelling, skin and tissue changes and a predisposition to infection. It most commonly affects the lower or upper limbs, but may also affect midline structures such as the head and neck, trunk, breasts or genitalia.

Please follow these core principles:

Compression:

It is possible that your nurse will not be able to see you to re measure for your garments in a timely manner during the crisis period, we therefore request that you take extra care of your garments to ensure they last as long as possible. We recommend that you wash your garments according to the manufacturer’s instructions. If you have older garments please hold onto these to see you over this crisis period.

It may be possible to request a repeat of the last prescription from your GP or Patient Choice (0800 862 0686) without seeing the lymphoedema team. This would only be appropriate if you feel your limb(s) has not changed considerably in size/shape.

Skin Care:

Please keep your skin and tissues in good condition and to prevent/reduce the risk of infection (Cellulitis). Please continue to reduce the risk of skin breakdown (such as athletes foot) this can trigger Cellulitis. Please continue to use the cream you usually use or a bland emollient.

Cellulitis is an infection of the skin, look out for redness, swelling and heat, with associated pain and tenderness in ONE arm or leg, which may be accompanied by fever, nausea/vomiting and a feeling of generally being unwell. People with lymphoedema are particularly susceptible to cellulitis.

What should I do if I develop Cellulitis?

 Contact your doctor immediately as you will need antibiotic treatment.  This is very important and should be considered an emergency and should not be delayed even in view of the current health care crisis. If you are seriously ill you may require admission to hospital for intra-venous antibiotics.

If you have previously had cellulitis you may have probably been advised to keep oral antibiotics at home. If you suspect cellulitis please start taking the antibiotics but please also seek medical advice.

If you suspect cellulitis please follow the following advice:

• Continue to wear compression garments unless the pain is too severe, if this is the case return to wearing hose as soon as it can be tolerated again.
• Discontinue Simple Lymphatic Drainage (massage) and exercise until the infection is improving.
• Rest your leg/arm in a comfortable position.
• Keep hydrated.
• Paracetamol may be taken.

Exercise:

Please keep up with your regular exercise routine. If you have compression garments that are worn out or poorly fitting the extra focus on exercise can be even more beneficial. If you increase your exercise this may compensate for your garments. Even if you are self-isolating or social distancing you can exercise indoors or take a walk as able/indicated.

If you want more ideas about what exercise helps lymphoedema please visit https://www.thebls.com/pages/everybodycan

Manual Lymphatic Drainage/ Simple Lymphatic Drainage (massage):

Please continue to carry out the simple lymphatic drainage if you have been taught this by your lymphoedema nurse.

Elevation:

Some patients find that elevation helps with increased swelling, this is variable. But if you swelling does increase try resting on the bed in the afternoon if possible to help drain the legs, or elevating the arm on a pillow when resting.

The lymphoedema service is nurse-led, with assessment and treatments provided on an outpatient basis to both cancer and non-cancer patients. Clinics are held every week day at the Cancer Centre at Royal Stoke University Hospital (RSUH). 

Our clinical team members are:

• Rebecca Elwell, Macmillan Advanced Nurse Practitioner for Lymphoedema

• Emma Pritchard, Macmillan Lymphoedema Clinical Nurse Specialist

• Jenny Neale, Macmillan Lymphoedema Nurse Specialist

• Jayne Waltho, Lymphoedema Health Care Assistant

• Helen Clarke and Deborah White, Lymphoedema Administrators

Our admin team members are:

Pictured: Deborah White and Helen Clarke 

• Deborah White, Lymphoedema Administrator

• Helen Clarke, Lymphoedema Administrator

Referrals are accepted from any healthcare professional for patients of all ages.  If self-referrals are received, the patient's GP will be contacted for information. Consultations are provided for patients with any type of oedema including primary Lymphoedema (genetic/inherited types and lymphovascular malformations), secondary Lymphoedema (including cancer-related lymphoedema), chronic oedema due to venous insufficiency, post thrombotic syndrome, trauma and Lipoedema.   

If you are referred to the service you will undergo a full holistic assessment, taking into account your physical, psychological, social and spiritual needs. Following this diagnosis will be made and an individualised treatment plan will be formulated. Information about the condition will be given and you will be able to discuss the diagnosis and its implications to your lifestyle. The aim of the lymphoedema service is to assist patients to manage the oedema and reduce the impact it has on daily life. Self-management is an essential part of Lymphoedema care and you will be instructed in any relevant techniques necessary. Information will be provided in a variety of formats, including patient information leaflets, booklets and visual aids such as DVDs. 

Treatment plans may include the following: skin care advice, exercise, healthy eating advice, compression hosiery, Manual Lymphatic Drainage (MLD), Simple Lymphatic Drainage (SLD), Intermittent Pneumatic Compression (IPC), deep oscillation therapy and kinesio taping. Some patients may require a more intensive therapy including multi-layer lymphoedema bandaging. You will attend the clinic regularly to start with, and then be seen less frequently. The aim is to reach a point where you can care for your lymphoedema yourself without the need for further intervention from the clinic.

Occasionally more specialist assessment and management is required. Referrals can also be made to specialist centres. The Royal Derby Hospital has a consultant-led lymphoedema clinic and St George's Hospital in London is a 'centre for excellence', providing advice to other lymphoedema services both nationally and internationally. They also have strong links with the genetic and research departments.

Email: uhns.lymphoedema@nhs.net

Telephone: 01782 676688

The telephone is answered Monday – Friday between 9:00am and 5:00pm. Outside of these hours an answer phone is in operation. If we are unavailable to take your call please leave a message and your call will be returned as soon as possible. For any urgent calls, please contact your GP or 111.

If you have any questions regarding your appointment or are unable to attend, please do not hesitate to contact us.

Please allow plenty of time for parking.

The clinic is located in the Cancer Centre on the first floor. Please report to Ward 202 reception on your arrival. Please note that we treat cancer and non-cancer patients. The clinic is based at the Cancer Centre for location purposes only.

We have a support group SLIMBS (The Staffordshire Lymphoedema Information Management Buddying and Support Group - please click here for more information) who meet on the last Tuesday of every month at the Quaker Meeting House, Miller Street, Newcastle, ST5 1QJ. 

The Red Legs Service which, also run by the Lymphoedema service, has been set up to provide care for patients with bilateral 'red legs', often mistaken for cellulitis. The cause of red legs may be due to a variety of conditions and a number of specialities have worked together with patients to develop the referral and treatment criteria. Referrals will be accepted from any healthcare professional. For any patient with bilateral leg redness, the patient must be systemically well, apyrexial and able to attend an outpatient appointment. Patients with unilateral redness will only be accepted if DVT has been excluded. Clinics are held once a week, on a Tuesday at Bradwell Hospital Talke Rd, Chesterton, Newcastle-under-Lyme, Newcastle ST5 7NJ. If you are a patient and think you may have this condition, please contact your GP. 

Rebecca Elwell - UHNM Hero

Patient Liz Drew thanked Beccy Elwell for being a "true and consistent hero". Beccy is known internationally for her work and research on lymphoedema. Liz wrote to the hospital to praise Beccy for the outstanding care and support she has given.

Other patients have also praised the lymphoedema service….

"I really appreciated the way in which you explained the problem I have with my legs and also the examination you gave me. When you get older it is not always easy to follow and remember what has been said so I sincerely thank you for the excellent way you dealt with my problem.  I feel now I understand lymphoedema much better.  If I could give you marks, I'd give you 10/10!"

"Thank you so much for all your hard work to help me feel better than I have in a long time, ladies you are such really nice people."

"I think that once they found out what was causing the swelling and redness, being referred to the red leg clinic has more or less sorted out my problem. I would 100% recommend the service."

"On my first assessment things were explained in a very clear way and the staff were very knowledgeable and understanding, 10/10."​

Lipodema UK 

Lipodema Ladies 

Lymphoedema Support Network 

The British Lymphology Society 

NHS UK ​

Legs Matter ​