Our new online newsletter – In Touch – August 2022
Learn more about our intrepid half marathon runners and more in the August edition of our online newsletter, In Touch.
The LSN’s new book is now available – July 2022
During the COVID-19 pandemic, people needed the LSN more than ever, our phones never stopped ringing, emails flooded in, and people were grateful to be able to find someone who understood lymphoedema, particularly as many clinics were closed at that time. While we had previously thought of producing an LSN book about lymphoedema, lockdown showed us that we really needed to action the idea. People needed to know what they could do at home to help their lymphoedema and they needed us to share our accumulated experience and information in a clear and practical way.
The aim of our book is to not only cover information about lymphoedema but to try and answer the types of questions we are asked on a regular basis. We were delighted to have the backing and support of Denise Hardy, the LSN’s Nurse Advisor, and Professor Peter Mortimer, LSN’s Chief Medical Advisor, who have both had extensive input to the book.
Lymphoedema is a long-term condition and cannot be cured so it’s vital that people who live with it are empowered with the information they need to help manage their swelling on a daily basis. This is true for everyone living with any chronic condition and would be true even if everyone with lymphoedema had access to healthcare professional experts in lymphoedema to guide them.
However, the stark reality is that there are not enough lymphoedema clinics with sufficient NHS funding to treat the over 400,000 people living with the condition in the UK, and even if this situation changed, there are simply not enough fully qualified lymphoedema practitioners to treat everyone. So, whether people attend a clinic, completely self-manage their condition or do both, we are confident that reading our book will leave them with a better understanding of lymphoedema and what they can do to help themselves.
The LSN has shared over 30 years of information and experience, including members’ quotes, hints & tips, and personal thoughts. The book is largely based on the LSN’s accumulated library of patient information, which has all been written specifically for the LSN by dozens and dozens of fully qualified lymphoedema practitioners, and other healthcare professionals. As with all our information, it has been reviewed and updated to reflect current thinking.
It covers a wide range of topics, from the key elements of lymphoedema care, right through to a chapter explaining what people need to know about surgical options. There are chapters on breast and torso lymphoedema as well as head, face and neck, and genital swelling. Lymphoedema in pregnancy, young children and teenagers has also been included. There is even a chapter about Self Lymphatic Drainage (SLD), which includes four demonstration sections, one each for arms, legs, breast and chest, and face, head and neck, together with photos showing people exactly how to carry it out. As far as the LSN is aware, this is the first time this type of information has been published in a book such as this!
It should also be noted that, while our information carries the PIF TICK quality mark which shows that this is patient information that can be trusted, it is not designed to replace information that people may have been given by their individual health teams.
Whether people sit down and read our book in one sitting, or choose to dip in and out, we hope that it will be interesting, inspiring, and valuable as they travel their lymphoedema journey.
“This is an excellent resource and full of useful detail and practical information. It’s brilliant that you are bringing everything together”
Dr Anne Williams, Lymphoedema Nurse Consultant
“I am impressed by the vast amount of information the book contains, it is certainly a great tool – just what is needed. My overall impression is that it is a book that will appeal to many people, medical professionals, and organisations. The book answers a lot of questions with an infectious desire to find out more. A book that certainly has something for everyone. Well done”
The book is A5 in size, printed in full colour and has over 100 images. The cost of the book is just £15 plus £3.50 postage & packing. To order a copy, visit our Shop
LSN’s 2nd online training module for GPs goes live!! – September 2021
For many years, raising GP and other healthcare professional awareness of lymphoedema has been the No 1 priority for our members. Having given this a lot of thought and having carried out our research, many of you will remember that in 2010, the LSN commissioned British Medical Journal Learning (BMJL), working together with Professors Mortimer and Keeley, to produce an online, multi-media training module for GPs and other healthcare professionals focussing on the science behind lymphoedema and the assessment and diagnosis, the module went ‘live’ in December 2011.
The aim of this project was to reach 2,000 UK doctors. The figures for the module have continued to exceed all our expectations; nearly 11,000 individuals have now completed the module made up of doctors, nurses, midwives, educators and researchers from 123 countries. Thanks to BMJ Learning feedback, we are able to demonstrate an increase in knowledge and understanding of lymphoedema and we are also able to monitor the changes in attitudes of those completing the module.
From this feedback we were also able to determine exactly what additional information would be welcomed. To address this and because of the generosity of a legacy we received, the LSN was able to commission a second BMJ Learning module, this time focussing on the management and support of chronic oedema and lymphoedema in a primary care setting. It covers skin care, psychological and social challenges, compression, weight management, movement and exercise, the management of cellulitis and more.
Inevitably, the COVID-19 pandemic slowed progress down but we are delighted to announce that the second LSN education module entitled ‘Managing lymphoedema/chronic oedema in Primary Care’ is now up and running!
The module, which is hosted by BMJ Learning has been written by Professors Peter Mortimer, Vaughan Keeley, Kristiana Gordon, GP Dr Catherine O’Leary and LSN Nurse Advisor, Denise Hardy, Clinical Nurse Specialist. It is a very practical module, it explains what lymphoedema is, how it affects individuals living with it, what can make it worse, and how it can be treated. It has videos showing how to measure for compression, tips on how GPs can support a patient wearing compression, skin care advice, tables about medications that might not be helping the swelling, information about cellulitis and links to other things that should help your GP to help you.
As with our previous module, those who do the online course and successfully complete the post module test, will be able to earn Continuing Professional Development points which helps them, so in theory, it is a win-win situation.
BMJ Learning will be advertising the module, as will the British Association of Dermatologists, our medical advisors and our colleagues in other charities but if you know any healthcare professionals as a friend, family or colleague, do encourage them to complete the module and to let us know if it was useful. Let’s work together to ensure that even more healthcare professionals have access to and complete this 2nd module!
As ever we are indebted to all those who have worked so very hard to write and review the module, particularly as it has been done during such challenging times.
We hope you agree that this module is certainly a legacy to be proud of!!
Consensus document on COVID-19 vaccination – May 2021
Revised information about the COVID-19 vaccination. Updated 25th May 2021.
World Lymphoedema Day – 6th March 2021
One of the very few nicer parts of being in lockdown was the normalizing of using technology to meet with others virtually. Not in terms of friends and families but rather in terms of shrinking the world. Up to and during Lymphoedema Awareness Week in March 2021, the LSN was involved with a great example of this when representatives from lymphoedema patient organisations across Europe were able to ‘meet’ several times to update the lymphoedema patient manifesto and to ask people with lymphoedema across the continent the challenges that they faced with acquiring the correct compression for their condition. It is amazing how much common ground there was despite different health systems and all countries demonstrated a struggle in some way. This work was published on World Lymphoedema Day and has been prepared as a poster abstract and submitted to the International Lymphoedema Framework conference which takes place in Copenhagen from 18-20 November 2021.
At one of the meetings, 17 lymphoedema patient organisations from across Europe were in the same virtual room and it was wonderful to be a part of such co-operation aimed at improving the experience of those living with lymphoedema regardless of where they live. The group have pledged to look for ways to continue to work together and the LSN is pleased to be able to participate.
You can view the updated manifesto and the Putting Compression Under Pressure document via the LSN Facebook page.
LSN charity appeal on BBC Radio 4 – March 2021
We hope you managed to listen to our Radio 4 Appeal, made by Professor Peter Mortimer. If you missed it, you can still listen to it via the Radio 4 Appeal website.
We are very grateful to everyone who has given to the appeal but if you would still like to donate, please do it directly through the LSN website using the Donate button above and not the Radio 4 Appeal website.
It is not often that lymphoedema has a national audience so we are very grateful to have had this opportunity.
Lymphoedema Support Network – Office Update – December 2020
We have been working hard to keep as many of our services running as possible during the COVID-19 crisis and we’re pleased to say that it’s very much business as usual! Our telephone lines remain open during usual hours between 9.30am – to 4.30pm; our website remains active, emails continue to be answered, information packs are still being sent out to those who need them and our social media continues.
Where possible, we would ask that you pay membership fees online (via the Get Involved section on this website). We are able to process card payments but our phone lines may be busier than usual. If paying by cheque is your only option, we will be able to process it but may take a bit longer than usual. In addition, we are restricted in processing merchandise orders so most of these items have been temporarily removed from our shop. However, the new Super Nan book, alert bracelets and stress balls are available.
Rest assured, the LSN will remain open and we are committed to doing our utmost to keep providing you with the information and support you need in relation to your lymphoedema and the current situation.
PIF TICK accreditation – September 2020
The LSN has always been incredibly proud of obtaining and retaining the information quality mark ‘The Information Standard’ (IS), a stringent indicator that the information we produce can be trusted. Last year we were informed that the scheme, previously run by the Department of Health, was being wound down as it had become increasingly difficult to continue to maintain; they had considered continuing it in a very watered down form but it was felt that this would devalue it. The LSN, along with many others, felt that this was a mistake as it was one of the only ways that consumers could tell which information they could trust in a world of everyday fake news.
We are delighted that the Patient Information Forum, with the full support of most of the previously certified IS organisations, has stepped into the breach and created the ‘PIF TICK’. When you see the PIF TICK symbol on leaflets, websites, apps or videos, it shows an organisation’s health information has gone through a professional and robust production process. To be awarded the PIF TICK an organisation must show its health information production process meets 10 criteria:
- Information is created using a consistent and documented process
- Staff are trained and supported to produce high-quality information
- Information meets an identified consumer need
- Information is based on reliable, up-to-date evidence
- Patients are involved in the development of health information
- Information is written in plain English
- Print and digital information is easy to use and navigate
- Users can give feedback on information
- Information is promoted to make sure it reaches those who need it
- The impact of information is measured
The PIF TICK is awarded after a thorough application and assessment process. Each of the 10 criteria has a number of requirements and each organisation applying for the scheme must meet the acceptable standard in each of the core criteria to be awarded the PIF TICK.
We are both delighted and proud to report that the LSN has been successful in achieving all the necessary steps to be awarded this prestigious quality mark. You will notice the new PIF TICK logo appearing on our information soon and hope it will give you continued confidence in our information!!!
COVID19 (coronavirus) – March 2020
We have been receiving a lot of enquiries in regard to COVID-19 (coronavirus). People are understandably worried about the implications for those who live with lymphoedema. Our experts assure us that in nearly all cases lymphoedema alone will not make you more susceptible to the virus and together with compression garment manufacturers have helped us to create some advice and suggestions which we hope will offer some assurance and guidance during these times.
Podiatrists – a Step in the Right Direction – Spring 2020
At the end of November 2019, the LSN manned an exhibition stand at the International Conference Centre in Harrogate, hosted by the College of Podiatry. We had become aware that many of our members visit podiatrists and some had even had their swelling first brought to their attention by a podiatrist.
In preparation, we had written some specific information aimed at podiatrists, including information on why and how people develop lower limb swelling, compression, skin care, how to reduce the chances of infection, and what to do if they suspect someone has lymphoedema.
The conference ran over three days and was attended by well over a thousand podiatrists. It is always a slightly anxious wait – will anyone visit our stand? Will they be interested or dismissive? Will they even have heard of lymphoedema? Well… on this occasion we need not have worried. Our stand received a steady flow of visitors over the three days and all were interested in what we had to say and keenly accepted our information and many took posters to put up in their clinics. It is not uncommon to find leaflets abandoned at the end of each day, strewn on coffee tables or popped into a bin but ours appeared to, at least, have left the building. We were double thrilled the next day when more than one visitor returned, having read our guide, asking for more copies for them to give to their absent colleagues. We were also asked to consider going to talk to some groups of students and foot health professionals to tell them more about our work and this is something we will be following up.
We returned to the LSN offices somewhat exhausted but satisfied that our message had not fallen on deaf ears only to receive a call from a podiatrist who had been given the information by a colleague and thought it was so helpful that they immediately joined the LSN! In addition, our Nurse Advisor, Denise Hardy, will be giving a talk to a group of podiatrists in Leeds on behalf of the LSN in March.
News of the new information has spread via Facebook and Twitter and since the conference we have been delighted to send many copies to podiatrists in Ireland, Australia, Italy and throughout the UK. The only downside of such a successful conference – no time to visit Betty’s teashop! Maybe next time?
If any podiatrists would like to receive our information, please contact us and we will send a copy… while stocks last.
National Lymphoedema Partnership – Call to Action! – Summer 2019
The LSN is delighted to announce that the document ‘Commissioning Guidance for Lymphoedema Services for adults in the UK’ will be launched at a parliamentary reception hosted by Tonia Antoniazzi MP on the 5th March. The document, which was produced by the National Lymphoedema Partnership, looks to educate, inform and support those responsible for commissioning lymphoedema services with the aim of ensuring all patients can access appropriate care and support.
All MPs have received a personal invitation from Tonia but may not attend as they will not know that this is a topic that is important to many of their constituents. Please take the time to drop your MP an email or letter asking them to attend as lymphoedema matters to you.
You can use this parliamentary website to find details of your MP – put in your post code and it will tell you the name and email address.
National Lymphoedema Partnership – Campaign Action Group Update – Autumn 2018
You may remember that the LSN is part of a collaborative group of lymphoedema organisations from across the United Kingdom and Ireland called the National Lymphoedema Partnership (NLP). The group aims to meet up to reduce duplications in our work streams, advocate for equality in treatment, discuss research, improve knowledge, raise awareness and generally collaborate on trying to improve things for lymphoedema patients and the healthcare professionals who care for them.
Recently, the group was involved in a Parliamentary Debate on lymphoedema service provision and work has begun to capture and continue the momentum of the debate. (See Summer 2018 issue of LymphLine). In order to do this, a subcommittee has been formed called the NLP Campaign Action Group and the LSN was delighted to host the inaugural meeting early in July. With representation from professionals from England, Wales, Republic of Ireland and Northern Ireland as well as patient representation from the LSN, the meeting was a very interesting and productive one. (A representative from Scotland will be attending the next meeting).
It was agreed that the ‘Aim’ of the group was to ‘Increase equitable service provision for patients’. Our overall ‘Vision’ is that ‘All patients with lymphoedema can access appropriate assessment and treatment across the UK’. Or in other words, to try and make sure wherever you live and whatever has caused your swelling, then you will be able to get the help you need to manage it… a challenging task!!!
The LSN carried out its first piece of work by gathering Freedom of Information replies from all Clinical Commissioning Groups (CCGs) in England regarding what services they currently commission for lymphoedema. Unsurprisingly, it is a real hotch potch of gold standard care that has been planned and commissioned at the highest levels, to some areas where no care is universally available.
From this work, the group has identified four areas in which to carry out some initial pilot studies, where we will be working on engaging, educating and supporting the commissioners of these areas, in order to try to improve lymphoedema treatment provision. This work will involve a lot of research into local populations, the numbers of people likely affected by lymphoedema, who the ‘movers’ and ‘shakers’ are in the health sector in these areas as well as local MPs, etc.
It will also require identifying suitable local patient champions who would be prepared to work with the NLP, through the LSN, to make the problems ‘real’ and local to commissioners. This work will then be carefully evaluated, refined and rolled out to other areas. Initially, we will be targeting the commissioners of the following CCGs: Dorset, Vale of York, Warrington and Morecambe Bay; these have been chosen as they have been identified as being below what we would expect generally, have an equality issue regarding cancer versus non-cancer lymphoedema and ones where we have a local healthcare professional or patient group, who we know will be willing to support and help us. If there is a local support group in the areas we are working in we will contact them for assistance, or if not, we will look to our members in these areas for help. If you know that your CCG is one of the above (you can find out from your GP) then please do drop us a line to share your experiences or to offer to help with local liaison. Email your experience to email@example.com.
In addition, the group will also be managing and attending the official Parliamentary Launch of the NLP Guide for Commissioning Lymphoedema Services paper which will take place in Portcullis House on 5th March 2019 and will hopefully give more weight to our CCG campaign.
LSN Chair, Anita Wallace, Awarded MBE in Queen’s Birthday Honours List – Summer 2018
We are delighted to announce that Anita Wallace has been awarded an MBE in the Queen’s Birthday honours for services to lymphoedema awareness and patient support.
Anyone who knows or has worked with Anita will appreciate just how well deserved this award is and we could not be more pleased for or proud of her.
The award will be presented this summer and we hope to feature the event in the Autumn issue of LymphLine.
LSN Is Proud to Announce Its New Honorary Patron, Dame Judi Dench, CH, DBE – Winter 2017
Raising awareness of lymphoedema, not only among healthcare professionals but also the general public, is an ongoing challenge. The LSN is always keen to explore every option available to us to help with this cause and so we were delighted when world-renowned photographer and co-author Gemma Levine, together with Professor Peter Mortimer, of the recently published book ‘Let’s Talk Lymphoedema’ was able to garner such amazing celebrity endorsements in the foreword of her book. One of those who contributed a supporting statement was Dame Judi Dench who Gemma has photographed and known for many years.
Gemma very kindly contacted Dame Judi to ask if she would be willing to be an Honorary Patron of the LSN and we are thrilled that she has accepted. Dame Judi is, as you would expect, extremely busy and already has many worthwhile charities that she supports so she will be unable to commit to helping the LSN personally but has agreed that we can use her name to raise awareness and to publicise the condition. This is a very generous offer and one that we were only too pleased and delighted to accept!! We are very grateful to Gemma, who is an Honorary Member of the LSN, for her assistance in facilitating this and to Dame Judi for offering her support.
Photo courtesy of Sarah Dunn www.sarahdunn.com
LSN Launches YouTube Channel – Autumn 2017
The LSN has launched its own YouTube channel.
This video content is available free of charge to everyone, worldwide. You probably know that YouTube is a way people can share video content easily with others, it is simple to use and is a great way of letting the wider world know both about lymphoedema and the LSN. We hope to be uploading new videos over the next few months, starting with a short
explanation of lymphoedema from our Nurse Advisor, Denise Hardy, and this will be followed by others, including advice about skin care, some of your stories and a view from the professionals. We will also be uploading a series of yoga videos in the New Year. We hope to be able to raise further funding to film some more videos in the near future and will keep you posted in a future edition of our newsletter, LymphLine.
Visit YouTube and search for Lymphoedema Support Network.
If you would like to make a donation to support this or other LSN projects you can donate online, by telephoning the office on 020 7351 0990 or by sending a cheque made out to the LSN to St Luke’s Crypt, Sydney Street, London, SW3 6NH.
Let’s Talk Lymphoedema – the Essential Guide to Everything You Need to Know – Autumn 2017
‘Let’s Talk Lymphoedema’ is a new book written by Professor Peter Mortimer and internationally published photographer and author Gemma Levine. It has been produced to help those living with lymphoedema by providing information and inspiration and features contributions from international experts, personalities and those with lymphoedema. Easy to read and packed full of information it can be purchased in both paper and kindle editions from Amazon and other booksellers.
Continuing Our Work With General Practitioners – Spring 2017
Being a General Practitioner (GP) in today’s NHS is not an easy task, appointment times are short, demand is high, extraordinary growth in medical knowledge, along with what we expect our GPs to know, is almost unachievable and many feel they run a real risk of being branded ‘Jacks of all trades and masters of none’.
It is sometimes all too easy for individuals and organisations to criticise GPs and whilst there is no doubt that many of our members have experienced difficulties in gaining a diagnosis or receiving treatment, the LSN believes that helping GPs to learn is a more productive route. We have a track record of success with our past projects in this area and we are hopeful that our latest venture will reap similar rewards.
We have commissioned a new e-learning module that builds on our previous BMJ module and will educate GPs about how to recognise lymphoedema, what initial tests should be done, when to refer to specialist services and how to support their patients when they are in self-management. As with our other e-learning module, GPs will receive Continuing Professional Development points when they complete the module and we will be able to monitor how many people have participated. This time we have chosen to maximise GP exposure to the module by collaborating with the Royal College of General Practitioners who will host the module on their website. Our grateful thanks go to Professor Mortimer, Dr Keeley and Denise Hardy, for all their help and support in the production of this module.
We would now like to ask you for your help in promoting the module to your own GPs. We have produced a cartoon post card which you will either have received in your Spring edition of LymphLine or can obtain by contacting the LSN office on 020 7351 4480. Please take one along to your GP next time you visit. Please do not make a specific appointment – they are busy people – or drop it into the surgery as it will probably end up in the bin! Just remember to take it along if you have reason to visit and ask your GP to take time to look at the module and encourage practice partners to do the same.
The module can be accessed by healthcare professionals, medical trainees and health care professional students at http://elearning.rcgp.org.uk/lymphoedema
Revised consensus Document on the Management of Cellulitis in Lymphoedema – December 2016
The revised consensus document is now available.
This document has been written and reviewed by a group of highly experienced lymphoedema specialists and makes recommendations about the use of antibiotics for cellulitis in patients with lymphoedema, and advises when admission to hospital is indicated.
The revised versions of the LSN fact sheets ‘What is Cellulitis?’ and ‘Management of Cellulitis in Lymphoedema’ are now available from the LSN office.