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.
Fluoroscopy Guided Medical Lymphatic Drainage - Autumn
The Lymphoedema Research Prioritisation Partnership - Autumn
BMJ learning module - still going strong after 4 years - Summer
Debate in the House of Lords - Winter
Raising GP awareness about lymphoedema – the fight continues - Autumn
Assisting GPs to find their way through chronic oedema/lymphoedema - Summer
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.
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 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: firstname.lastname@example.org 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.
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.
For further information or if you have any concerns about this process, please contact the lead researcher Emma Underwood email@example.com or her academic supervisor, Dr Jenny Freeman firstname.lastname@example.org
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.
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.
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!
This article is taken from the Winter 2015 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.
Many of you will have read in our last issue of LymphLine about our visit to the House of Lords to meet with Lord Philip Hunt of Kings Heath. Lord Hunt had been prompted to table a question in a Short Debate in the House of Lords after meeting a lymphoedema patient, during the recent election, who had experienced difficulties in obtaining a suitable level of care. Representatives from both the British Lymphology Society (BLS) and the Lymphoedema Support Network (LSN) met with Lord Hunt to discuss the current situation and were able to impress upon him the challenges facing many patients and our disappointment that there was no national strategy for lymphoedema care in England despite similar strategies already having been established in Wales, Northern Ireland and Scotland.
The debate was scheduled for the 9th of September and we were delighted to be able to attend to listen, along with colleagues from the BLS. Unlike a traditional ‘debate’ there was no actual discussion of the points, just the opportunity for peers to give supporting statements to the tabled question and then a reply from a peer from the current majority party.
Lord Hunt put the case forward very clearly and his opening statement was well thought out and to the point. He was backed by five fellow peers, Lord McColl of Dulwich, Baroness Smith of Newnham, Baroness Masham of Ilton, Lord Maginnis of Drumglass and Baroness Finlay of Llandaff. They all made short supportive statements which focussed on the need for early diagnosis and treatment, their frustration that England appeared to be falling behind the other home countries and the detrimental effect that the situation was having on the lives of those living with lymphoedema.
The right of reply was given to Lord Prior of Brampton in his capacity as Parliamentary Under Secretary of State – Department of Health. Lord Prior spoke at length and in many respects said what we all expected, pointing out that a decision had not yet been made on the BLS submission to the Prescribed Specialised Services Advisory Group, to commission lymphoedema services nationally, and that the issue that devolved administrations in Wales, Northern Ireland and Scotland had strategies but stated that “health is a devolved matter. It may not seem equitable, but the point of devolution is that the devolved parts of the country will have different ways in which they treat different conditions. In England, responsibility for determining the overall strategic, national approach to improving clinical outcomes from healthcare services lies with NHS England, and the provision of lymphoedema care is the responsibility of local NHS commissioners.”
He did offer to try and arrange some meetings with representatives of NHS England, so perhaps something will come from it. But in the meantime, many people who would not otherwise have heard of lymphoedema, thanks to Lord Hunt, have now.
This article is taken from the Autumn 2015 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.
As long-time supporters of the LSN will know, one of the most challenging aspects of our work, and yet the one which remains of most relevance to our membership, is raising awareness of lymphoedema among General Practitioners (GPs). With greater awareness, GPs will be better equipped to diagnose, refer and offer support to those patients under their care who develop lymphoedema or chronic swelling. However, as we all appreciate, being a GP in the NHS is a very challenging job, they are expected to know about so many conditions, to manage their practices, to continue developing themselves, to support their staff and so it goes on. They are also incredibly busy and their time is very valuable. The constant challenge is to find a way to engage them that is effective and seen by them as worthwhile. We have tried many initiatives and some have been noticeably more effective than others. Far and away the most successful has been the BMJ Learning module. But even this created more challenges for us – but what a great challenge – as many of those doctors who completed the module wanted more! More information about the condition, how it is treated and what they can do to support their patients. As you may remember, the module was very expensive and until recently we have not been in a position to consider doing a follow-up module, however, we have recently received a legacy gift and this has allowed us to explore the possibility.
We have had a wonderful ongoing relationship with BMJ Learning since our last module and cannot praise them enough, but in the four years since then, some ‘new kids on the block of elearning’ have evolved and we considered it important to explore all our options before committing members’ funds.
After intensive investigation we have decided to create an elearning module specifically for GPs in partnership with the Royal College of General Practitioners online learning environment (RCGPOLE). The RCGP has over 50,000 GPs as members who now consider RCGPOLE to be their preferred provider of continuing professional education and the module will primarily be aimed at them but will also be available to GP speciality trainees, practice nurses and practice managers. As an organisation, the RCGP does not look to make a profit from their OLE which means that the module will be far less expensive than our last whilst, we believe, offering equivalent or better access to our target audience.
GPs will be able to claim Continuing Professional Development (CPD) points by completing the module and their learning will be ‘tested’ using a variety of online methods.
As you will imagine the project will take many months to plan, create and launch but we did not want to wait to share our excitement! The module will be multimedia and include video – it will also include information on managing cellulitis, managing lymphorrhoea (leaking legs), red legs and much more!
This work has only been possible because one of our members was generous enough to leave us a gift in their will – we believe that this project is the perfect thank you for that generosity and will provide an ongoing legacy to honour it.
If you would like information about how to leave the LSN a gift in your will please contact the LSN office.
This article is taken from the Summer 2015 issue of LymphLine, the LSN's quarterly newsletter available to all LSN members. For details of how to become a member, click here.
One of the ongoing challenges for the Lymphoedema Support Network is supporting General Practitioners (GPs) in their efforts to diagnose those living with chronic oedema/lymphoedema and correctly manage their care. This can be every bit as frustrating for them as it is for those of you who have had negative experiences in primary care. GPs are expected to have knowledge and experience of literally thousands of conditions, from the common cold, right through to life-threatening heart conditions, cancer and everything in between; they have increasingly little time available to them and are under constant pressure to reduce costs. The LSN has made a huge impact on the knowledge base of thousands of GPs through our BMJ Learning module, but the challenge for them is often knowing how best to manage the condition, from the point of the patient presenting at their surgery with unexplained swelling, the diagnostic process, referral to a specialist service, and ongoing support in the self-management stage.
A common method for supporting GPs through this process in other conditions is using a ‘care pathway’. A care pathway is a flowchart that asks key questions and, depending on the answers, offers the GP guidance on what to do next or what conclusion they have reached. Some of these care pathways are quite easy but others, such as chronic oedema/lymphoedema are actually quite complex, there are many different causes of swelling, many medications that can make it worse and many medical conditions that can include swelling as a symptom. Once everything else has been excluded, and chronic oedema/lymphoedema is suspected – what does the GP do then, refer to a clinic?, try and manage it themselves, is there even a clinic available to them? As you can see it may not be as easy as we would imagine.
The LSN generally has a response to such challenges of finding and implementing a solution and this situation was no different. After much investigation, we decided to work with Map of Medicine to produce a care pathway for Chronic Oedema/Lymphoedema. The care pathway, which would be available to many GPs directly to the computer on their surgery desk, would be funded by the LSN and written by Professor Peter Mortimer and Dr Vaughan Keeley with input from other experts and patients. We imagined the process would be relatively simple and we anticipated that the pathway would be launched within a few months! As it turned out, it has taken very much longer than we imagined to ensure that the pathway is accurate and reflects the needs of the GP. However, the wait is over and we are delighted to announce that the pathway went live at the end of May. We believe that this is a huge step forward in our mission to ensure that patients receive the care and support that they need.
Enclosed in this issue of LymphLine you will find a postcard which advertises the pathway that we hope you will be able to pass on to your GP for us – it also tells them to contact us for a hard copy version if they are not able to access the Map of Medicine from their surgery. Imagine a scene when rather than presenting to your GP with unexplained swelling and being told to ‘put your feet up’ or ‘take Nurofen and rest your arm’ your GP turns to his computer, types in one of the key words we have identified, such as ‘swelling’, ‘recurrent cellulitis’, ‘oedema’, etc. and they are presented with a clear, evidence based path to follow, complete with advice that they can give to you about what you can do to help yourself whilst you wait for investigations or referral – what a difference it would have made to so many of you and hopefully what a difference it will make to others in the future.
They say that patience is a virtue, and in this case, we are sure that the waiting will have been worth it.