National Lymphoedema Partnership – Call to Action!

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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

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

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

Anita Wallace

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

Dame Judi Dench

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



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LSN launches YouTube channel

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

‘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.


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Continuing our work with General Practitioners

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


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.