From our newsletter

These articles are taken from LymphLine, the LSN's quarterly newsletter available to all LSN members. They reflect a mixture of personal opinion, professional opinion, reporting of news and items of interest. All articles are read by the LSN Medical Advisor prior to publication, however, advice or suggestions that may appear within them is not intended to replace advice you may receive from your healthcare practitioner. All articles contain their publication date and will be removed after two years.

2018
arrowpng Fundraising for the Lymphoedema Support Network - Autumn
arrowpng Intermittent pneumatic compression therapy - Autumn
arrowpng Genital Lymphoedema - Spring

2017
arrowpng Antibiotics for surgical procedures in patients with lymphoedema - Summer
arrowpng Surgical options for treatment of lymphoedema - Winter

2016
arrowpng Fluoroscopy Guided Medical Lymphatic Drainage - Autumn
arrowpng The Lymphoedema Research Prioritisation Partnership - Autumn
arrowpng BMJ learning module - still going strong after 4 years - Summer


This article is taken from the Autumn 2018 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.

Fundraising for the Lymphoedema Support Network

We recently promoted a fundraising event on our Facebook page and someone asked the very valid question ‘What do the LSN need funds for?’ – Needless to say, the reply from us was a very long one!

But it did make us wonder if others were asking the same question. The LSN receives no statutory funding from any sources, we are totally reliant on the income we receive from membership subscriptions, Corporate Sponsors, sales of our fact sheets, sales of advertising space in LymphLine, sales of our goods, donations and fundraising. We occasionally have legacies from members, donations in memory of people who have died and income from grant making trusts but they are rare. We also claim all the Gift Aid that we are entitled to.

We work hard to balance our books and the amazing work our unpaid Trustees and volunteers do helps immensely but the simple fact is, that without donations and fundraising from our supporters we simply would not be able to continue the work we do. This includes: supporting people with lymphoedema, educating doctors about the condition and how to treat it, providing information, supporting children and adolescents with lymphoedema, hosting patient conferences, manning our helpline, paying for access to online self-management videos, etc.

 

Fundraising for the LSN

 

To give you an idea of what the money that you raise for us can pay for

 £ Our rent, rates and insurance cost us about £370 a week

 £ Our postal bill (including sending out orders of our merchandise and fact sheets) is just under £360 a week

 

Not sure you can raise that much?

 £ Our phone bill is £30 a week including our support and information line

 £ We spend £5 a week to make sure that our volunteers can have a cup of tea and a biscuit while they work!

 

Confident you could raise more?

 £ We spend about £1,000 a year offering free membership to children with lymphoedema

 £ Just under £5,000 each year is spent to give our members access to 16 self- management online videos (if you have not called for your access code please do!)

 

Want a real challenge?

We are very keen to commit to creating a follow-up online learning module for General Practitioners in partnership with BMJ Learning. Our previous module dealt with the medical mechanics of the condition, the plan for our next is to focus on how to treat patients with the condition. We need to raise somewhere in the region of £50,000 for this, on top of our other work. This may seem a huge amount but since our previous module went live in 2011, 7,114 health care professionals from across 22 countries have completed the module, of which 4,767 are from the UK. With the initial spend and ongoing hosting fees this equates to about £10 per completer which is a fantastic return for our money. It should be noted that you have told us that raising awareness of lymphoedema amongst GPs is your number one priority and the BMJ Learning module has been our most successful and rewarding project.

To help you to help us, we have updated our fundraising pack and we would be delighted to send one to you if you get in touch on 020 7351 0990. So get baking, walking, swimming, dancing, knitting, celebrating, quizzing and remember that every penny that you can raise for us not only helps us to keep doing what we are doing but also helps us to reach our aim of commissioning a new online learning module to ensure that others like you are able to be diagnosed and treated quickly!


This article is taken from the Autumn 2018 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.

Intermittent pneumatic compression therapy

By Melanie McCann, Macmillan Lymphoedema Nurse, Herts Community Trust

Introduction

Intermittent pneumatic compression (IPC) therapy is a treatment that has been available since the 1930s. It has been used for conditions including lymphoedema, lipoedema, venous disease, leg ulcers, preventing deep vein thrombosis and managing arterial disease. Over time the IPC pumps have evolved with new technology and many pumps offer a wide variety of settings for people with different needs. All of this can make it difficult for patients to know if IPC might be a suitable treatment for them, how best to use it and what their outcome might be with this treatment. This article seeks to give an overview of this topic so users can make an informed choice about this treatment option.

What is IPC?

All IPC starts with the patient putting an inflatable garment onto their limb(s). The pump is a box that is powered by an electric supply to fill the garment with air to a pre-defined level of pressure. This then inflates and deflates in a regular fashion. The most common versions are those used on feet after surgery to prevent blood clots.

In the early versions of IPC pumps to treat lymphoedema and other conditions, the pumps inflated a single chamber garment to a set pressure and then relaxed. The pressure measurements were very dependent on the fit of the inflatable garment and the quality of the pump. More modern versions have multiple chambers and can vary the amount of pressure used and sequence of when the pressure goes on or is released to suit each condition. It is much safer to use the newer versions as this technology allows the machine to be calibrated and adjusted to suit individual needs and health.

The sequencing techniques of different machines also varies, some work down the limb, some up and some in ‘waves’ of pressure. Trying different pumps can help you decide what you can tolerate as well as what you find most effective.

How does it work?

The intention of using IPC is to improve lymph and venous return through the cyclical application of pressure and release in a similar fashion to Manual Lymphatic Drainage (MLD). Some therapists use the IPC to work on a limb whilst they work on the trunk. With lymphoedema, there is some evidence to suggest that pressures between 30-60mmHg are preferred for most patients, but pressures as low as 15-20mmHg might be used for those with more complex health needs and higher pressures of around 80mmHg are used in other countries. Applying too much pressure can close, rather than help, the lymphatics and repeated over time can damage the fragile initial lymphatics. A small study suggested repeated pressures of over 100mmHg have been shown to damage lymphatics. For this reason, more is certainly not always better!

It is thought that the sequential application of pressure and release helps return lymph into the deeper lymphatics, thus promoting more drainage. For those with venous disease, there is improvement in drainage of blood in the veins. With mild to moderate arterial disease, because of the intermittent use of low to medium pressures, IPC can actually improve the blood circulation as well as the oedema where other forms of compression might be difficult or unsafe to use.

Some pumps have inflatable garments that go below the knee, to the thigh, worn like trousers, or on the arm as a sleeve or worn as a jacket. For example, a person with foot and ankle swelling might only need a below knee inflatable boot, whereas someone treated for a gynaecological or prostate cancer, where there has been surgery and/or pelvic radiotherapy, may need a trouser style inflatable garment.

Always remember that the pump is ineffective above where the inflatable garment stops. One of the reasons they fell out of favour in the past was that people put them on the lower limbs and used them a lot, but did no self-massage and therefore swelling at the root of the limbs or genitals became a problem. For this reason, it is important to either perform self-massage or have someone else stimulate the lymph nodes above where the inflatable garments end. The more this can be done, the less likely root of limb swelling is to be a problem.

As there is an array of different conditions, pumps and inflatable garments, it is important that you take the time to think about your own condition, your ability to use IPC safely and what you might hope to gain out of treatment. From there you can work to understand which pump, inflatable garment and regime might suit you.

 

Intermittent pneumatic compression therapy

 

How might IPC be used?

IPC can be used:

■ As part of intensive treatment for lymphoedema
■ As a daily treatment at home
■ To help with tissue pain from lipoedema
■ In addition to conventional treatment (compression garments and wraps)
■ As an alternative to conventional treatments where there are limited other treatments, or lymphoedema services available to you.

Most regimes suggest using the pump for between 30-120 minutes a day, during which time the limb should be positioned at the same level as the heart to promote postural drainage.

If you have swelling that extends above the top of the pump’s inflatable garment, for example to the shoulder or genitals, there is a risk that this swelling can be made worse by using the pump. To minimise this risk, you should consider:

■ Is this the right treatment for you?
■ Is the pump garment the best option for you?
■ Can you manage self-massage or have someone else perform Simple Lymphatic Drainage to the areas above the pump garment?
■ Do you have a compression top or shorts that can be used simultaneously?

Are there contra-indications?

Absolute contra-indications include:

■ Current infection.
■ DVT or pulmonary emboli that has not been treated.
■ If your body is not able to get rid of fluid effectively, this might be through heart failure, renal disease, pulmonary oedema or cancer-related obstructions. In these situations, it is more likely that the IPC will just be moving fluid from one area to another.
■ If you have significant peripheral neuropathy (loss of sensation) then you might not notice pain or problems during treatment

What is the evidence on outcomes?

There have been several case reports and a few higher quality research trials on IPC. However, they all employ slightly different methods of use, durations and pressures, which is why there is no set programme for best practice at this time. In other patient groups, there was a belief that IPC would help wound healing and although there is evidence of improved blood flow, the outcomes on wound healing and arterial disease are less clear.

The outcomes patients commonly report are tissue softening, reduced tissue pain, that the limb feels smaller or there is better movement. Many clinics will use IPC as a ‘second pair of hands’ during intensive treatments to allow you to get more value out of your treatment.

The patient groups most likely to achieve an effect are those who are immobile and sit a lot, as the IPC is able to replace some of the benefits that movement would have provided.

The next group are patients who use IPC as an addition to their usual compression and exercise regimes. It should be noted that without ongoing compression through garments, bandaging or compression wraps, there is not likely to be a sustained beneficial effect to limbs from IPC alone.

It should also be noted that patients who have mild to moderate swelling with minimal tissue thickening are more likely to benefit than those with advanced tissue change.

How do I access IPC?

If you are under the care of a lymphoedema service, they may have an IPC system that you can try.

If you are not, some of the manufacturers offer trials at home for a month for a fixed fee, so that you can see if you feel IPC adds value to your care. If you do invest in one, with good maintenance, it may well last you for life.

Conclusion:

As this article highlights, IPC has been around for a long time and many people have found it beneficial as part of their overall package of care. However, to use IPC to its best effect means spending time at the beginning understanding what type of machine and inflatable garment is best suited to you, based on your clinical needs and what might be realistic for you to gain from its use.

Where you do not have access to a lymphoedema service, you will need to ensure that you have a good understanding of your health needs and documentation from your GP or hospital consultant. It might then be worth contacting more than one company and speaking to their sales representative for these products so you can assess their strengths and limitations. Reputable companies are likely to ask for consent from a healthcare professional before they will sell you an IPC system to ensure that it is medically advisable.


This article is taken from the Spring 2018 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.

Genital Lymphoedema

By Dr Kristiana Gordon, Consultant in Dermatology and Lymphovascular Medicine, Lymphoedema Clinical Lead, St. George’s Hospital, London

Dr Kristiana Gordon

GENITAL LYMPHOEDEMA remains rather a taboo subject, even in today’s society. The LSN and I sincerely hope this article will raise awareness of the condition and empower anyone who is affected, but previously too shy to mention it, to speak with their lymphoedema therapist or the LSN if they are in need of support or treatment.

Introduction

The majority of patients with lymphoedema suffer with swelling of one or more limbs. However, lymphoedema can affect any part of the body, including the genital tissues. Genital lymphoedema may affect men and women but is more common in men, probably because of the anatomy and dependent nature of male genitalia. Genital lymphoedema rarely occurs in isolation, and is more likely to occur with swelling of the lower limbs.

As with lymphoedema of a limb, genital lymphoedema may be due to ‘primary lymphoedema’ i.e. a genetically predetermined weakness of the lymphatic system. More commonly, genital lymphoedema will be a ‘secondary lymphoedema’ where the swelling occurs as a result of damage to a previously healthy lymphatic system and prevents it from draining the body’s constant production of lymphatic fluid.

Patients may find it difficult to tell their doctor or lymphoedema therapist if genital lymphoedema has developed. However, it is important for them to realise that they can, and should, let their medical team know about these problems in case further investigations are needed. Early diagnosis of genital lymphoedema allows treatment to be introduced, and will reduce the risk of developing complications.

Causes of Genital Lymphoedema

Primary Lymphoedema:

Primary lymphoedema affecting the genital area is a rare problem. It may develop in childhood or young adulthood as a result of genetically predetermined abnormality of the lymphatic system. Although primary lymphoedema is a genetic problem, there does not necessarily need to be a family history of the condition as the genetic mistake (mutation) can, rarely, occur during development within the womb rather than being passed on from an affected parent. To date there are four rare conditions where genetic DNA mutations are known to cause genital swelling. All of these conditions cause lymphoedema of the legs, and sometimes the arms too. These rare diseases are: Emberger syndrome, lymphoedema distichiasis syndrome, Hennekam syndrome and Noonan syndrome. Sometimes, someone with primary genital lymphoedema may develop chylous lymph blisters on the scrotum, penis or vulval tissues. These occur because of abnormal lymphatic pathways in the intestines, resulting in the milky white fat that is absorbed by intestinal lymphatics draining (often as a result of gravity) to the genital tissues and escaping though the skin. These white blisters leak milky fluid after the affected person has eaten a very fatty meal i.e. the fat from the diet cannot be absorbed properly by the gut lymphatics. Management of this rare condition will include advising to avoid specific fats in the diet, with extremely effective and rapid results.

There are several other types of primary lymphoedema where genital lymphoedema occurs with limb swelling, and the underlying genetic fault has not yet been discovered but are the subjects of active research efforts within the lymphoedema clinics. It is important for healthcare professionals to recognise there may be an underlying genetic syndrome causing their patient’s genital lymphoedema as there may be some associated health problems that need to be excluded or treated. Lymphoedema therapists are able to identify when a patient’s genital lymphoedema may be due to a primary lymphoedema and will ensure they are referred to a Lymphoedema Consultant for further investigation and treatment.

Secondary Lymphoedema:

Secondary genital lymphoedema is much more common than primary lymphoedema. It can occur when one or more factors have damaged a previously healthy lymphatic system.

The most common worldwide cause of genital lymphoedema is the parasitic worm infection called Lymphatic Filariasis (also known as ‘Elephantiasis’). This is a neglected tropical disease affecting 40 million people. Fortunately, the disease is not found in the developed world and is so rarely encountered in the UK that there is no need to discuss it in more detail in this article.

The most common cause of genital lymphoedema in the UK is cancer of the male or female urogenital tract (e.g. prostate, penis, testicles, cervix, vulva) and its treatment. The cause of lymphoedema in these situations is usually the (necessary) cancer treatment rather than the cancer itself. The removal of cancerous tissue, regional lymph node(s) and targeted radiotherapy will cause irreversible damage to the drainage routes of lymphatic fluid from the genital region.

Healthy genital tissues are fortunate to have the option of bilateral lymph node drainage pathways. For genital lymphoedema to occur, lymphatic drainage pathways of both groin regions must fail or become blocked. This phenomenon explains why lymphoedema does not affect all patients receiving genital cancer treatment, as the tissues are still able to be drained by preserved lymphatic vessels on one side.

Other causes of secondary genital lymphoedema include any injuries or surgical procedure that disrupts the lymphatic pathway e.g. diagnostic biopsy of an enlarged lymph node in the groin. Occasionally, compression of leg lymphoedema through bandages or pneumatic compression pumps, can push fluid up to the trunk and result in genital lymphoedema, especially if care is not taken to redirect the lymph through collateral drainage routes. This is the reason it is recommended that the use of compression pumps should be in consultation with your lymphoedema therapist.

Uncommon causes of genital lymphoedema include recurrent infections of the genital region, such as cellulitis (a bacterial infection of the skin), which may damage the lymphatic drainage routes. Other rare causes of genital lymphoedema include severe chronic inflammatory skin conditions such as Anogenital Granulomatosis (a rare form of Crohn’s disease/inflammatory bowel disease inflammation affecting the genital region). Healthcare professionals understand the need to consider these rare causes of genital lymphoedema as they may require additional treatments, such as daily antibiotics, to prevent further cellulitis, or anti-inflammatory medicines to control the Crohn’s disease inflammation within the skin.

 

Genital Lymphoedema

 

Complications

Genital lymphoedema can be complicated by infection (cellulitis) of the swollen area. In this situation the skin will become red and hot, and the swelling usually worsens. Prompt treatment with oral antibiotics (taken by mouth), as per the LSN/BLS Cellulitis Guidelines, will hopefully eradicate the infection after 2 weeks of treatment. However, a small number of patients may find the infection returns and will need to consider using daily prophylactic antibiotics to prevent recurrent cellulitis infections. It is important to prevent further infections because each infection causes further lymphatic damage and will exacerbate lymphoedema. Other complications of genital lymphoedema include the leakage of lymphatic fluid from lymph blisters that may form on the penis, scrotum or vulval skin. Chronic leakage from these lymph blisters (lymphangiectasia) can upset the surrounding skin and cause eczema of the area.

Men with penile lymphoedema may find the swelling interferes with passing of urine and perhaps their sexual function.

Genital lymphoedema may also impact on a person’s self-esteem and quality of life. The burden of this condition upon psychological health should not be underestimated and it is important that affected individuals realise that psychological support is available, usually via their GP services.

Management

The prognosis of genital lymphoedema is somewhat dependent on the underlying cause, but established swelling is incurable. However, prompt investigation/diagnosis and treatment will reduce the swelling and the risks of complications.

If someone develops lymphoedema following genital cancer treatment, or after other diseases/procedures that have damaged genital lymphatic drainage pathways, then further investigation is not usually required. In cases of unexplained genital lymphoedema, or of suspected primary lymphoedema, a patient is often referred to a Lymphoedema Consultant for further investigation and advice on management.

All patients with genital lymphoedema will benefit from compression hosiery. This may be in the form of self-bandaging of penile lymphoedema; jock-strap style support garments for scrotal swelling; cycling shorts-style compression garments for men and women (with foam or silicone gusset inserts for women), and there are many different garments that can be offered by lymphoedema therapists. Manual Lymphatic Drainage (MLD) massage may also stimulate and transiently improve genital lymphoedema, as well as keeping the tissues soft and pliable. It may be helpful for patients to become confident in performing self-lymphatic drainage and for this to be used in conjunction with the daily use of compression hosiery.

Affected individuals will benefit from weight management, as obesity can make genital lymphoedema worse (an obese abdomen will further obstruct genital drainage by squashing the lymphatic vessels in the groin region, especially when in the seated position). Maintaining an active lifestyle will ensure the lymphatic system is stimulated. This is important as genital lymphoedema typically occurs in the presence of lower limb lymphoedema (in both primary lymphoedema and cancer-related lymphoedema), and the lymphatic drainage of the lower limb is dependent upon healthy drainage routes via the groins. It is important that lymphoedema of all sites is managed in combination, i.e. with exercise, weight maintenance, compression, and good skin care, in order to prevent complications and to improve quality of life.

Surgery may alleviate some symptoms of genital lymphoedema but is unable to cure the condition. Cautery of lymph blisters (when the small blisters are gently burnt off under a quick general or local anaesthetic) can be undertaken to reduce the amount of lymphatic fluid leakage. This procedure may have the added benefit of reducing the rate of recurrent infections/cellulitis by preventing bacteria from entering the skin via the small blisters if they burst.

Male circumcision can be offered to remove a lymphoedematous foreskin that may be causing problems with passing urine (e.g. spraying of urine, or trapping of urine under the foreskin so that it leaks later on). This operation is technically straightforward and could be offered local to the patient, or the local Urologist may wish to seek advice from an experienced Lymphoedema Urologist before undertaking the procedure.

Debulking (the surgical removal of excess skin) can be offered by experienced surgeons for cases of scrotal lymphoedema. It is possible to consider similar operations for severe penile lymphoedema and female genital lymphoedema, but the surgery may be more complex and require careful planning.

The surgical treatments listed above are not intended to be curative, but may alleviate symptoms and significantly improve quality of life. Surgical results are unlikely to last forever, but can achieve positive results for many years with the daily use of post-operative compression therapy.

Summary

Genital lymphoedema is an uncommon problem but can have a significant impact on someone’s physical health and quality of life. There are several possible causes of the condition and these will be considered by lymphoedema therapists and/or other healthcare professionals involved in a patient’s care. However, in order to help someone with genital lymphoedema access the care that they need, the first step is for the individual to let their therapist know they are having problems. We hope that after reading this article, people will realise that there is effective treatment for genital lymphoedema and that there is no need to be shy in talking about this condition.

Editor’s note: A Genital Lymphoedema information sheet is also available from the LSN office.


This article is taken from the Autumn 2016 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.

Fluoroscopy Guided Medical Lymphatic Drainage

By Melanie McCann, Macmillan Lymphoedema Nurse, Herts Community Trust

I recently had the privilege of attending training on Fluoroscopy Guided Medical Lymphatic Drainage (FG-MLD) by Jane Wigg and Professor Belgrado through the Lymphoedema Training Academy. I asked the Lymphoedema Support Network if I might share my experience and explain a little of what I learnt and why I feel it is important for patients to be aware of what FG-MLD means today.

I have worked as a lymphoedema nurse for over a decade and feel fortunate to work in a role that I really enjoy. I undertook training in Manual Lymphatic Drainage (MLD) as part of my specialist training and continue to use this in day-to-day practice. The difficulty has always been that whilst patients have often found MLD helpful, there has been a lack of consistent evidence to support its effect. In health care, we are constantly aiming to ensure what we do is safe, effective and a prudent use of resources.

The development and validation of lymphofluoroscopy as a way of safely mapping superficial lymphatic drainage pathways is a tool that has opened up the opportunity to look at how lymph drains in ‘real time’ moving images in people who may or may not be affected by lymphoedema. This can help us understand more about what ‘normal’ looks like and how the body compensates (or does not compensate) when it is affected by events such as surgery or infection.
As the technique is both safe and reproducible, it is also possible to research people over time to see how lymph drainage alters through different life stages and stresses. So far, over 1,300 people have been ‘mapped’ to reveal how lymph drains individually for them. As there are some drainage pathways that are common to most, the findings from these people can be collated to give us a better understanding of how lymph drains and what affects that drainage for better or worse in most people.

Lymphofluoroscopy mapping is the technique of injecting a very small amount of ‘tracer’ (or dye) just under the skin. It is generally not painful and is extremely safe, being used for heart and eye assessments for over 20 years. The tracer then gets ‘excited’ by shining the right type of LED light at it and will produce a picture. This allows for the camera to see for the first time ever, fluid moving in the lymphatics or see where it is collected. There is no need for people to be individually mapped to receive FG-MLD and it is the hand movement and pressure that have been devised following the demonstration and practice on those having lymphofluoroscopy that has allowed for optimised movement to enhance drainage. Following the common pathways, but respecting that everyone is individual, the new MLD can be carried out. For enhanced drainage, individual pathways can be marked and recorded following lymphofluoroscopy, allowing for the therapist to drain to these routes. Training in a technique that has been proven to help lymph to be reabsorbed into the lymphatics and how to move it faster.

Lymphofluoroscopy mapping is available in the UK privately if a patient or health professional feels it is appropriate. Whilst the technique is simple, there are only a few clinics who are experienced in interpreting the results or use the set protocols, along with your history, so that they are meaningful to patients. There is only one person who is trained in the protocols and techniques used by Professor Belgrado. It is therefore important to ensure that the test and interpretation of the results are done by a specialist.

from our newsletters2

From a professional perspective, if data are collected in a systematic, rigorous and repeatable fashion, this gives greater validity to the findings (i.e. one large dataset can give us better knowledge than lots of people doing things their own way). For me, it is hard to think that after 10 years there are things that I thought were right that are not, but that is the same with all knowledge. I am glad Professor Belgrado, Jane Wigg and others around the world are innovating and challenging previously held beliefs. I am impressed that they are not just looking at how lymph moves inside the body, but also thinking about how we measure that without performing lymphofluoroscopy on every patient and how we apply that learning to make treatments more effective.

Lymphofluoroscopy is not the only type of test to be helpful at looking at the lymphatic system but it offers a new tool with a lot of potential. Due to the limited number of people who have been scanned so far, it also raises more questions than answers for now and it certainly will never prove that ‘one size fits all’. Yet in this era of evidence-based practice facilitating personalised medicine, it is certainly a viable, sustainable and valid tool to help us today and continue building knowledge to help even more in the future as it is used and understood more.

In summary, lymphofluoroscopy, FG-MLD and the ‘fill and flush’ technique of massage may be terms and tools that are being more widely used and discussed for lymphoedema over time. I am glad to have had the chance to understand what this tool is and how I can use it today in practice. I am also glad that I will be asked to return and update myself next year as the knowledge and understanding we have today is developing and will evolve further. In one sense, it is a shame that this imaging can only be accessed privately, presently. However, for each new scan on all types of person and lymphoedema that is added to that collection, there will be more strength in our knowledge.

Note: Lymphofluoroscopy: A way of mapping a person’s lymph drainage pathways. It uses an intradermal injection of Indocyanine Green into the skin and then uses an infrared camera to visualise where and how this moves in the body.
Note: FG-MLD: A specific form of MLD that has been adapted and in response to what was found to be effective when MLD was carried out on people with and without lymphoedema.

Editor’s note: Lymphofluoroscopy mapping clinics are available through Jane Wigg, Nurse Consultant, The Karri Clinic Hull. Contact: clinic@lymph.org.uk or 07947 735704.

A list of FG-MLD trained therapists can be found at: www.lymph.org.uk/directory-of-therapists


This article is taken from the Autumn 2016 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.

The Lymphoedema Research Prioritisation Partnership
Shaping the future of lymphoedema research in the UK

By Emma Underwood, Lymphoedema Specialist (Occupational Therapist)

In order to ensure that people living with lymphoedema receive the most clinically and cost effective treatment, we need more research evidence. However, to ensure that research makes a real difference, it needs to address priority questions that are both representative of the needs of people living with lymphoedema and not biased by commercial interest.

The Lymphoedema Research Prioritisation Partnership aims to set research priorities for the management of lymphoedema in the UK through collaboration with patients, their unpaid carers and the healthcare professionals that treat them. This research is supported by both the Lymphoedema Support Network and the British Lymphology Society.


from our newsletters3

Why we need your help:
We want to know what needs to be improved about any aspect of treatment and management of lymphoedema (both non-cancer and cancer related) and will use your questions to help set priorities for research. Your experience of this condition will help us understand where research is needed that will make a difference to people’s lives.

Who can get involved?
We want to hear from you if you are over 16 years of age and:

• a person with lymphoedema
• an unpaid carer for, or family member of, someone with lymphoedema
• a healthcare professional working with people with lymphoedema
• an academic or researcher with an interest in lymphoedema

What will happen to your question(s)?
The questions which are submitted by you will be checked to ensure they have not been answered by existing research. They will then go through a process of prioritisation, to identify the research which is of most importance to patients, their carers and healthcare professionals. At the end of the process a top 10 list of research questions will be published and provided to organisations that fund research.

How to get involved?
We would like you to give us up to 5 questions about the treatment or management of lymphoedema that you feel need to be answered by research. Or in other words the questions about the treatment or management of lymphoedema that you and your healthcare professional have been unable to answer. You can complete the survey individually or on behalf of your support group. It doesn’t matter how big or small, all of your questions are important to us.
You can do this by completing the online survey which will take 10-15 mins https://plymouth.onlinesurveys.ac.uk/lrpp

The survey is open from 7th September – 7th November 2016.

Further Information
For further information or if you have any concerns about this process, please contact the lead researcher Emma Underwood emmalymphoedema@gmail.com or her academic supervisor, Dr Jenny Freeman jenny.freeman@plymouth.ac.uk

Thank you for supporting the partnership.


This article is taken from the Summer 2016 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.

BMJ Learning module – still going strong after 4 years

Those of you who are long-standing members of the LSN will know all about our BMJ Learning module, but for those who are new to us, in the Spring of 2011 the LSN decided to produce an online learning module about chronic oedema/lymphoedema specifically aimed at reaching General Practitioners and other doctors with information about the condition. GPs are increasingly busy and are bombarded with literature from numerous organisations every day. We decided that as all doctors need to carry out a certain number of hours training each year, Continuous Professional Development, or CPD for short, we would work with British Medical Journal Learning to produce a quality learning module that would earn CPD points for those doctors who completed the module.


from our newsletters1

Using our finances and the expertise of BMJ Learning, Professor Peter Mortimer, Dr Vaughan Keeley and the LSN, the multi-media unit went live at the end of 2011, with the aim of reaching 2,000 UK doctors. Figures for the module after two years exceeded all our expectations and the success continued during year three. We keep expecting that interest will diminish, so we were delighted to be proved wrong again when we received the latest figures at the end of 2015. A staggering 5,897 individuals have completed the module, 4,167 from the UK. Of these completers, 5,079 are doctors! 109 countries are represented, from Albania to Zimbabwe; nurses, midwives, lecturers, medical students and even 4 vets have now completed the module.

It is also very gratifying to read the comments on the module that prove what a difference it is making:

‘Excellent, this is a topic glossed over in medical school’

‘Extremely useful, very clear, well presented. This will come in very useful in my clinical practice’

‘I learned that water tablets are not the answer for chronic oedema’

We hope you will all agree that whilst being an expensive project, it has been money well spent!