LymphUnited eNewsletter
Volume 12
July 2024
LymphUnited eNewsletter
Volume 12
July 2024
Volume 12 – July 2024
Welcome to our twelfth LymphUnited Newsletter, which includes a variety of subjects that aim to share experiences and help you to live better with lymphoedema.
Having lymphoedema can be a lonely place sometimes and I am passionate about uniting the lymphoedema community, both online and in person. You are NOT alone!
This issue includes a variety of articles including ‘Spotlight on Derby Lymphoedema Service, Meet the Members from England and Africa, New Video Interview, plus the results of our recent Free Prize Draws and Charity Golf Day.
I hope you find this interesting and informative. Most importantly, I hope there will be something that you find beneficial to improve your quality of life.
Ultimately, this newsletter is for your benefit. Therefore, I welcome your feedback or any requests you have for future content.
Contact Matt at Hello@lymphunited.com.
Spotlight on Derby Lymphoedema Service
I am extremely grateful to Professor Vaughan Keeley for sparing the time to participate in this Q&A session, enabling us to find out about the Derby Lymphoedema Service.
Professor Keeley has supported all my projects, from providing trusted information and guidance in my first book, ‘How to Live Better with Lymphoedema – Meet the Experts’, to improve our understanding of lymphoedema and cellulitis. He also joined the Meet the Experts team on our website and in June 2024, Professor Keeley attended our Charity Golf Day as an expert speaker.
Thank you for all the work you do in supporting our lymphoedema community.
Firstly, please introduce yourselves as some of our members may not know you.
Prof. Vaughan Keeley :
I have been the Lead Consultant of the Derby Lymphoedema Service since I set up the first clinic here in 1990. My background is in Palliative Medicine and as a result, I developed an interest in lymphoedema arising from cancer treatment, which began when I was working in Cambridge in the late 1980s. I have officially “retired” now but still work part-time. I also have a background in research and held an appointment as Honorary Professor at the University of Nottingham Medical School until I retired.
Can you tell us a bit about Derby Lymphoedema Service?
Following opening in 1990, our clinic initially focussed on cancer related lymphoedema but rapidly expanded to include seeing people with lymphoedema of all types, both adults and children, from our local area of Southern Derbyshire. in 2007, I led a piece of work to determine the need for lymphoedema services in the East Midlands, and, as a result of this, we were asked to provide services for Nottinghamshire as well, and opened clinics at Queens Medical Centre, Nottingham and Kings Mill Hospital, Mansfield. The three clinics (Derby, Nottingham and Mansfield) together now form the Derby Lymphoedema Service under the management of the University Hospitals of Derby and Burton NHS Trust.
We have a multidisciplinary team of doctors (from Palliative Medicine and Dermatology) and specialist lymphoedema therapists (from nursing, occupational therapy and physiotherapy backgrounds). We carry out multidisciplinary initial assessments (with a doctor and therapist) for most of our patients and there are therapist-led clinics in which people with cancer treatment related lymphoedema are seen. Medical led follow-up appointments are available for those with complex problems requiring on-going medical input e.g. recurrent cellulitis, and therapist led follow-up for others. Weekly multidisciplinary team meetings are held to discuss new problems arising in existing patients and those with complex conditions.
Like the St George’s clinic in London, the Derby service has been recognised as a Specialist Centre for Primary and Paediatric Lymphoedema by NHS England and, until Brexit, was a full member of the EU Vascular Rare Diseases Network (VASCERN) – Paediatric and Primary Lymphoedema Working group. We still work with this group but also together with St. George’s form the NHS England Paediatric and Primary Lymphoedema Rare Diseases Collaborative Network (RDCN).
Again, like our colleagues at St. Georges we have developed an interest in segmental overgrowth and vascular malformations (SOVM) and are part of the SOVM RDCN with other colleagues in England. These are rare conditions which may involve malformations of lymphatic vessels and lymphoedema, and are associated with local overgrowth (enlargement) of tissues in the body.
We run special clinics with colleagues in genetics where we see people with these rare conditions and also have a wider local multidisciplinary team meeting with different specialties including interventional radiology, vascular surgery, paediatrics, and dermatology, where people with complex vascular malformations can be discussed and appropriate treatment planned.
Working with our local plastic surgeons in Nottingham, we set up a service to treat selected patients with advanced lymphoedema with liposuction but, as elsewhere in England, we have had difficulties in obtaining funding to carry these out recently.
We also run specialist clinics for those with genital lymphoedema with a visiting plastic surgeon from St George’s. If surgery is required, it is usually carried out in London.
In 2020, following a peer review process, the Derby Lymphoedema service was recognised by the Lymphatic Education and Research Network (LE&RN), a USA based organisation as one of 11 centres designated as Comprehensive Centres of Excellence for the treatment of lymphatic diseases in the world, in the first round of this initiative. We were delighted that our colleagues at St George’s also received this designation.
Across our three clinics we receive over 1500 new patient referrals per year. The numbers continue to increase.
What lymphoedema therapy treatments are patients able to access?
Compression treatments are the mainstay of management in our clinics. Depending on the severity of the lymphoedema, the treatment may involve an initial intensive phase of compression bandaging to reduce the limb volume followed by the ongoing use of compression garments to maintain the improvement. In some cases, especially when travelling to the clinic is a problem, the intensive use of a Velcro compression wrap system worn day and night for a number of weeks may be used instead to reduce the limb volume before fitting compression garments.
Advice on skin care, exercise / activity and weight management where necessary is provided.
We do not routinely used manual lymphatic drainage (MLD) as part of our management due the growing evidence of the lack of long-term benefits but may use this in selected situations particularly for “mid-line” lymphoedema e.g. head and neck, breast and genital lymphoedema. Patients may also be taught self-massage techniques (simple lymphatic drainage, SLD) to use themselves.
Advice on the use of intermittent pneumatic compression pumps for selected patients is available.
Regular therapy follow-up appointments (6-12monthy) are carried out to assess progress and provide new garments.
Can anyone with lymphoedema be referred to Derby Lymphoedema service?
We provide a local lymphoedema service for those with all types of lymphoedema who live in Nottinghamshire and Southern Derbyshire. We also see patients with complex problems such as recurrent cellulitis from a wider area following referral from the GP.
As a specialist centre for paediatric and primary lymphoedema and those with segmental overgrowth and vascular malformations, we also see people from outside our local area. We usually see patients with these problems from the Midlands and north of England, whereas those in the south will be seen at the St. Georges clinic. The same arrangements also apply to those with lipoedema where, like St Georges, we provide a specialist assessment service for those “out of area” but are not able to provide routine follow up for this group.
Those who have advanced lymphoedema and may need to be considered for liposuction surgery and those with genital lymphoedema where surgery may be an option are also seen from outside of our local area.
What makes the Derby Lymphoedema service different from other clinics in the UK?
In many ways, the Derby Lymphoedema service is similar to St George’s in the makeup of the team and the services we offer. We work closely together with St. George’s and have a number of joint meetings to discuss complex cases.
However, we do differ from most other lymphoedema services which are therapist-led and have little or no input from medical staff.
As described above, we see patients with more complex lymphoedema and rare forms of lymphatic diseases.
We also have a research programme which, depending upon the studies available at the time, may be open to a number of our patients.
What research studies are you working on at the moment?
Our research interests have included a wide number of areas of clinical research in the past, including the early detection and possible prevention of breast cancer related lymphoedema and the prevalence and impact of lymphoedema in different conditions such as multiple sclerosis and obesity and more widely as part of the LIMPRINT (International Lymphoedema Framework) study group. The latter produced a large amount of valuable data which is still being analysed and further papers have been published recently.
We developed the LYMQOL lymphoedema specific quality of life assessment tool. The original tools covered upper and lower limb lymphoedema and more recently our research nurse, Dr Katie Riches, has developed a version for breast lymphoedema, which is in preparation for publication. We hope to add further tools in the future, including one for head and neck lymphoedema, one for genital lymphoedema and one for lipoedema. The original tools have been translated into a number of languages and are used clinically and in research projects around the world.
We are currently preparing a grant application, led by Katie Riches, to develop further aspects of the work she carried out on the assessment of breast lymphoedema and its natural history, as part of her PhD study.
We are also collaborating with our colleagues at St George’s Hospital, London in their studies of the genetics of primary lymphoedema and lipoedema.
What challenges do you and the team face when delivering care to patients with lymphoedema?
Like all services in the UK, we face the main challenge that the treatment of lymphoedema is not prioritised within the NHS and there is no strategy for the provision of services in England. This means that treatment is patchy with some areas having little or no service and others have better provision.
Our own service has for some time not had adequate staffing nor funding to meet the demand on it. However, this has been made significantly worse since the COVID pandemic. Some of the medical staff from our team were withdrawn at short notice and it’s taken a long time to replace their hours. Our Derby clinic was held in a purpose-built facility on the main hospital site but this was taken over for other purposes during the pandemic and has not been returned to us. We are currently in temporary accommodation on a community hospital site.
Prior to the pandemic, the Nottingham clinic was moved off site from the main Nottingham hospital due to shortage of accommodation and is now held in a local health centre. We no longer have the same level of access to facilities and staff from other specialties, which we had when part of the main hospital site.
Demand for our service has gone up since the pandemic and, in particular, there has been a significant increase in the number of appropriate referrals from out of area. This has led to an increase in waiting times which we are trying to address at the moment.
On a positive note, however, we have been working with our local integrated care board (ICB) in Derbyshire to develop an integrated model of lymphoedema care across the county which would allow for some follow up and ongoing provision of compression garments by a community element of the service, which would work closely with our specialist service.
For further information about Professor Vaughan Keeley and our panel of lymphoedema experts, visit https://lymphoedemaunited.com/meet-the-experts/
Nathalie from Africa ‘Talks Lymphedema’ and Lymphatic Filariasis
My name is Nathalie, I have secondary lymphedema because I suffered from lymphatic filariasis as a teenager.
At the age of 13, my legs started swelling. I went from hospital to hospital hoping for a diagnosis. At that time, there was just not enough information. I only got diagnosed six years later, in India, where I also got treated.
After my treatment in India, I tried to educate myself on lymphedema, but the information available was not enough. All I knew was to wear my stockings to reduce the swelling. My doctors could not help, so I felt lonely and misunderstood. This caused me to avoid talking about my lymphedema for so long.
9 years after my treatment, I have learned more about lymphedema and I share my knowledge. This is why Lymphedema Talks was created — to raise awareness so that others don’t have to wait too long to get diagnosed and to reach those suffering in silence like I was due to the lack of information.
Today, Lymphedema Talks is much more than that, its goals are:
- To put the light on lymphedema and other lymphatic system diseases such as lymphatic filariasis.
- To raise awareness so that it becomes easier to get a proper diagnosis and treatment in Congo, but also in other African countries and Asian countries, where there are high-risk areas for lymphatic filariasis.
- For people with lymphedema to get the correct information about the condition and learn to manage it properly.
- To raise money and help those with the condition who cannot afford doctors’ consultations or even compression garments.
I found purpose in what I thought was a curse. To learn more about what I do, check out Lymphedema Talks.
If you are looking for ways to live your best life with lymphedema, subscribe to my email newsletter, where I share my tips on living comfortably with the condition.
To read more about Nathalie’s personal journey visit our Meet the Members section https://lymphoedemaunited.com/meet-the-members/
Nathalie from Africa ‘Talks Lymphedema’ and Lymphatic Filariasis
My name is Nathalie, I have secondary lymphedema because I suffered from lymphatic filariasis as a teenager.
At the age of 13, my legs started swelling. I went from hospital to hospital hoping for a diagnosis. At that time, there was just not enough information. I only got diagnosed six years later, in India, where I also got treated.
After my treatment in India, I tried to educate myself on lymphedema, but the information available was not enough. All I knew was to wear my stockings to reduce the swelling. My doctors could not help, so I felt lonely and misunderstood. This caused me to avoid talking about my lymphedema for so long.
9 years after my treatment, I have learned more about lymphedema and I share my knowledge. This is why Lymphedema Talks was created — to raise awareness so that others don’t have to wait too long to get diagnosed and to reach those suffering in silence like I was due to the lack of information.
Today, Lymphedema Talks is much more than that, its goals are:
- To put the light on lymphedema and other lymphatic system diseases such as lymphatic filariasis.
- To raise awareness so that it becomes easier to get a proper diagnosis and treatment in Congo, but also in other African countries and Asian countries, where there are high-risk areas for lymphatic filariasis.
- For people with lymphedema to get the correct information about the condition and learn to manage it properly.
- To raise money and help those with the condition who cannot afford doctors’ consultations or even compression garments.
I found purpose in what I thought was a curse. To learn more about what I do, check out Lymphedema Talks.
If you are looking for ways to live your best life with lymphedema, subscribe to my email newsletter, where I share my tips on living comfortably with the condition.
To read more about Nathalie’s personal journey visit our Meet the Members section https://lymphoedemaunited.com/meet-the-members/
Treating a verruca with lymphoedema by Jane Marfleet
My challenges and concerns
Managing lymphoedema effectively often means committing to a daily routine of wearing compression, skin care and lymphatic drainage massage etc in order to control swelling and prevent cellulitis. On top of this having lymphoedema means certain ailments can be more difficult to deal with, than for those who do not have it. An example of this is a verruca which appeared on the sole of my ‘lymphie’ foot in 2019, likely caught from my local swimming pool.
As a lymphoedema sufferer I was concerned that verruca treatments can be aggressive and possibly cause a wound, which of course poses a risk for cellulitis, so I sought advice from my GP. I was then referred to a NHS dermatologist who offered to freeze the verruca but then promptly refused when I explained my enhanced risk for infection. I was discharged with advice to leave the verruca alone, on the chance it might resolve naturally, or to self-treat with an OTC verruca product. I started with the first option but the verruca gradually got bigger. So, then I tried an OTC salicylic acid-based treatment, despite being concerned about causing a wound, but 3 cautious attempts just resulted in a disheartening return of the verruca.
A high street practitioner, advertising verruca treatment (alongside a variety of therapies), advised freezing or acid-based treatments were suitable for me. However, further questioning revealed an inadequate understanding of lymphoedema, so I walked away.
Early 2023 the verruca was causing discomfort and a crack appeared across the top of it, which my NHS lymphoedema clinic nurse advised could lead to infection and that the risk of not treating outweighed that of treating. However, despite input from the hospital podiatrist, it was still unclear how to best get my verruca treated. So, thinking cap back on to decide my next move.
My choice of treatment
A podiatrist at a local foot clinic confirmed that acid-based or (in particular) freezing treatments might cause a wound but advised that a third option, SWIFT microwave therapy https://treatwithswift.com/ was safer and more effective albeit expensive. On-line research revealed a lot of positive experiences with SWIFT therapy and I felt further reassured when the podiatrist said she had successfully used it on a lymphoedema patient and additionally offered to discuss the therapy with my lymphoedema nurse. So, I went ahead.
My SWIFT therapy included 3 treatment appointments during May and June 2023, followed by a check-up in September 2023. The treatments were modified to reduce the risk of causing a wound by using a relatively low temperature setting and taking a cautious approach to debridement. Additionally, I declined local anaesthetic to avoid the use of needle. I found the treatments painful, like a bee sting, but doable as the pain only lasted for a few seconds. After care was just a stick-on plaster worn for 24h.
Post Treatment
I had some very mild inflammation round the verruca site just after the treatments but, importantly, there was no apparent wound nor hint of infection throughout the entire process. At my check-up appointment the only sign I’d had a verruca was a faint pink patch where it had been, and my skin looked completely normal.
For a while I experienced brief and very occasional slight stinging sensations in the treatment area, apparently caused by production of growth factor and part of the healing process. Otherwise I didn’t have any after effects and I’m very pleased to report that, as of April 2024, I remain verruca free.
Moral of the story:
Keep feet covered when using shared aquatic facilities such as public swimming pools. I now own a pair of verruca socks.
Disclaimer
The above is my personal experience and does not constitute medical advice. I do not stand to receive any favours or payments from SWIFT.
Lymphoedema United Disclaimer
Thank you, Jane, for sharing your experience. Lymphoedema United does not accept any liability for this information. Always consult your GP or Lymphoedema Therapist before proceeding with any medical treatment.
Free Prize Draw Winners
In the Spring of 2024, we held two consecutive Free Prize Draws, exclusively to members of Lymphoedema United.
In May, each of the 10 lucky winners that entered our April Free Prize Draw, won a pair of Walker Socks, supplied by Sock Shop. Of those we are allowed to mention, congratulations to J.Leaver, J.Moore, J.Hersey, R.Williams, J.Broughton, Sue B, E.White, C.Baerselman and Ruth L.
In June, each of the 5 lucky winners that entered our May Free Prize Draw, won an ActiGlide donning device, supplier by L&R Medical. We had a record number of entries, which highlights the challenges we face when putting on our compression garments. We are only able to mention one of the five winners, so congratulations to JM from Surrey.
To view all products listed from Sock Shop and L&R Medical, please visit our Meet the Suppliers section https://lymphoedemaunited.com/meet-the-suppliers/ and don’t forget to use your discount code.
Free Prize Draw Winners
In the Spring of 2024, we held two consecutive Free Prize Draws, exclusively to members of Lymphoedema United.
In May, each of the 10 lucky winners that entered our April Free Prize Draw, won a pair of Walker Socks, supplied by Sock Shop. Of those we are allowed to mention, congratulations to J.Leaver, J.Moore, J.Hersey, R.Williams, J.Broughton, Sue B, E.White, C.Baerselman and Ruth L.
In June, each of the 5 lucky winners that entered our May Free Prize Draw, won an ActiGlide donning device, supplier by L&R Medical. We had a record number of entries, which highlights the challenges we face when putting on our compression garments. We are only able to mention one of the five winners, so congratulations to JM from Surrey.
To view all products listed from Sock Shop and L&R Medical, please visit our Meet the Suppliers section https://lymphoedemaunited.com/meet-the-suppliers/ and don’t forget to use your discount code.
Charity Golf Day 2024
Thank you to everyone who attended and/or supported our third Lymphoedema United Charity Golf Day on 6th June 2024, at The Belfry. We raised a staggering £5,809 for the Lymphoedema Research Fund (managed by St George’s Hospital Charity).
Golfers, and their loved ones, affected by lymphoedema enjoyed glorious weather, delicious food, the unique Lymph United Putting Competition, countless raffle and auction prizes.
David Jailer, Sarah Fisher won the Men’s and Ladies trophies and Mark Hudston from Daylong Direct won the trophy for best supplier’s category.
In addition, we were treated to captivating and informative speeches by Prof. Christine Moffatt, Prof. Vaughan Keeley and Denise Hardy, RGN BSc (Hons). Their speeches are now available to view, free of charge, on our YouTube Channel https://www.youtube.com/@lymphunited
Prof. Christine Moffatt
Prof. Vaughan Keeley
Denise Hardy RGN Bsc (Hons)
Charity Golf Day 2024
Thank you to everyone who attended and/or supported our third Lymphoedema United Charity Golf Day on 6th June 2024, at The Belfry. We raised a staggering £5,809 for the Lymphoedema Research Fund (managed by St George’s Hospital Charity).
Golfers, and their loved ones, affected by lymphoedema enjoyed glorious weather, delicious food, the unique Lymph United Putting Competition, countless raffle and auction prizes.
David Jailer, Sarah Fisher won the Men’s and Ladies trophies and Mark Hudston from Daylong Direct won the trophy for best supplier’s category.
In addition, we were treated to captivating and informative speeches by Prof. Christine Moffatt, Prof. Vaughan Keeley and Denise Hardy, RGN BSc (Hons). Their speeches are now available to view, free of charge, on our YouTube Channel https://www.youtube.com/@lymphunite
Prof. Christine Moffatt
Prof. Vaughan Keeley
Denise Hardy RGN Bsc (Hons)
New friendships were made and our regular golfers reunited.
My thanks to our very generous suppliers for supporting us: Haddenham Healthcare, Thuasne UK, medi UK, Daylong Direct, LymphaPress UK, Jobst UK and Sigvaris Group Great Britain.
A special thank you to my amazing wife Vicki and dearest friends Dave Vellacott and Nathan Lewis for their help in making the day a huge success.
Look out for my posts and emails soon to register for the 2025 Golf Day – venue TBC.
Bitesize News
Available Now
Top Tip
You can get sun burn through your compression garments, which could be very uncomfortable when donning and doffing. Take care not to leave you affected limb exposed to the sun.
Lymphoedema Research Fund
Target: £250,000
Raised: £248,040*
Date: 30th June 2024
* from all sources, not just Lymphoedema United
Available Now
Top Tip
You can get sun burn through your compression garments, which could be very uncomfortable when donning and doffing. Take care not to leave affected limb exposed to the sun.
Lymphoedema Research Fund
Target: £250,000
Raised: £248,040*
Date: 30th June 2024
* from all sources, not just Lymphoedema United
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www.lymphoedemaunited.com
Helping you to LIVE BETTER with LYMPHOEDEMA
Medical Advice Disclaimer
DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE
All material on this website is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment.
Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regime and never disregard professional medical advice or delay in seeking it because of something you have read on this website.
Reliance on any information provided on this website, by our employees and others appearing on the website is solely at your own risk.
For the avoidance of any doubt, Matt Hazledine has lymphoedema and is not a medical professional.