Lymphoedema Support Network – Office Update – 30th April 2020
In line with Government directives, the LSN office was forced to close on 23rd March. We have been working hard to put plans in place to keep as many of our services running as possible during the COVID-19 crisis. Our information and support telephone line has been redirected and remains open during usual hours between 9.30am – to 4.30pm, calls to our admin line have also been redirected and it is operating as normal; 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 of the website) as we are unable to process cheques, but please get in touch with us if you need any help. In addition, we are unable to process merchandise orders so these items have been temporarily removed from our shop. Mailout out of the Spring edition of LymphLine was also completed, so it’s pretty much business as usual.
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.
Please note that we are aware that some lymphoedema clinics are closed, due to the re-deployment of nurses during this crisis, but we are not being told which clinics will be affected.
Stay well and keep washing those hands!
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
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!
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 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
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
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
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.
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 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.