Alongside raising general awareness of the condition, the primary purpose of our Fund is to raise money to train NHS practitioners in the management and treatment of Lymphoedema.
In 2001, when Katie died, only a few people knew about this and even doctors were ignorant of its existence. We hope to make this treatment more widely available on the NHS and we also think it is imperative to inform the public and make the country aware of the advantages of treatment. They can then make informed choices if they are suffering from Lymphoedema.
The Fund provides sponsored places on training programmes run at The Royal Marsden School in London.
So, specifically, how have we spent the money we have raised to date?
- Almost 250 practitioners trained since 2004 with numbers slow until 2009 and then ramping up to between 40 and 50 a year now
- Of the 250, 55% come from NHS/hospital background; 40% from hospices and the rest charity/other. We only fund NHS practitioners and no private practice.
- 62% are nurses, 20% physiotherapists, 3% occupational therapists, 3% lymphoedema therapists and the other 13% from a range of backgrounds including healthcare assistants.
- Geographically, the South East of England is by far the highest proportion of participants but there are representatives from pretty much every corner of the UK and we do try to advertise as well as we can AND fund reasonable travel and accommodation expenses too.
KLF funded 36 places on Royal Marsden School run/managed courses in 2015. Our funded courses include:
Lymphoedema: Principles & Practice (blended learning—online and classroom)
The module is an introduction to the management of lymphoedema, aimed at professionals who are primarily treating cancer-related lymphoedema. It will give the student the opportunity to gain a deeper insight into the causes and management of this chronic condition. In addition to exploring the evidence base for the care of lymphoedema, the module provides an opportunity to learn and practice the practical skills of compression therapy in a safe, supervised environment.
Fluoroscopy Guided Manual Lymphatic Drainage (FG-MLD)
Some of you may have heard Jane Wigg at our luncheon last year giving an update on new developments within Manual Lymph Drainage (MLD). Specifically that the approach to MLD is changing due to research evidence using guided fluoroscopy that indicates that different hand movements on the skin encourage more effective drainage of lymph fluid.
What is Fluoroscopy Guided MLD?
Through the use of Near Infrared imaging, the superficial lymphatics can be visualised. For the mapping of functional lymphatic collectors, this allows us to observe dermal rerouting areas, dermal backflow areas and functional substitution pathways. This allows for the mapping and the identification of the lymphatic system and ensures that the therapist knows the best drainage pathways to be used for the patient. Never before have we been able to identify functional lymphatics in real time. This development means that the therapist can ensure that they carry out a MLD technique to which they know the lymphatics are responsive.
Prof JP Belgrado has been working with NIR fluoroscopy for the last 5 years and has presented globally regarding its technique, applications and outcomes for clinical practice in lymphoedema and other related conditions. Some of the research carried out by Prof. JP Belgrado has examined over 371 pathological lymphatic patients. This has allowed for the identification of common lymphatic pathways of differing pathologies, leading to a better understanding of lymphatic pathways and subsequent drainage. It has also demonstrated what hand contacts, movement and pressure is necessary for effective drainage of the lymphatic system. The Royal Marsden School have already incorporated this new development within their course offerings. The course is led by Jane Wigg , who is the only authorised trainer of the FG-MLD technique of manual lymphatic drainage in the UK, supported by Mary Woods, Lead Nurse Lymphoedema Service at The Royal Marsden Hospital. To view more details on how to apply for these courses, go to our Bursaries page.
Due to the amazing support we receive, we are very proud of our contribution to the wider accessibility of lymphoedema treatment and management over the last 11 years.
The majority of the funds raised go straight to the Royal Marsden School of Cancer Nursing & Rehabilitation and so far in 2014 we have been able to fund 35 course places.
We also keep a portion of funds aside to help individuals who apply to us directly for support. This enables us to accommodate requests from across the country. All requests are vetted for appropriateness and legitimacy and we seek input from Mary Woods, Head of Lymphoedema at the Marsden to ensure we make the right decisions. One of our requirements from those we fund directly is for them to keep us appraised of how useful their training has been from their point of view and that of their patients. We follow up with them immediately after training and 6 months later when they have had a chance to put their new skills into practice. To date in 2014, we have funded four individuals directly, from Devon (2), Suffolk and Colchester. The average cost per person for this training was £1750. Sadly we have also had to turn down three other requests as we have no further available funds this year.
As we approach 2015, we continue to work primarily with the Leduc method of treatment but alongside the Royal Marsden we want to review whether there is any merit in exploring alternative treatment methods and therefore training. If this is the case we would hope to extend rather than divert our existing support in order to maintain our forward momentum!
What Does This Tell Us?
NHS Nurses in the South East and East of England make up the largest number of participants on the courses run by the Royal Marsden School (RMS).
Physiotherapists have increased in numbers from 1 in 2004-5 to 11 so far this year.
Outside of the expected catchment area (69%), the East of England and the South West have provided reasonable numbers of course participants. Elsewhere is lagging behind. We want to try to spread the net wider and ensure that potential participants everywhere are aware that we offer funding AND that we will refund travel and accommodation expenses (within our guidelines).
Also, working with Leduc-UK we can strive for a wider reach – see below.
LEDUC-UK UPDATE FROM JANE WIGG
Jane Wigg is Director and Trainer of Leduc-UK – she and her team are experts in Medical Lymphatic Drainage and Decongestive Therapy, with over 20 years personal experience of evidence based practice and training in the field. Jane runs some of our RMS courses and we also fund students directly on her other training courses.
“Many thanks again for your continued support. I presently have another 14 students going through training, from Kent, Lincoln, Hull, Norfolk, Stoke, Ireland, etc.. so it is all
positive. With the university courses I run and the RMH courses, this year we will have trained nearly 70 therapists. This includes 10 from Kendal and north; 10 in Gibraltar
(Nov ’13); 12 in Wales (Dec ’13) and 25 on my Cannock courses. That really is an achievement!
Next year training is going through a big change and will be even better – we are injecting our students to show lymphatic drainage pathways and we will be drawing the pathways and demonstrating the MLD on therapists. This is pioneering and will be the first time it has ever been carried out in the UK, so fingers crossed! It’s very exciting indeed!”
In the last 12 months, we have funded 29 participants on courses run at The Royal Marsden School (RSC), either as individuals on RSC-led lymphoedema management courses, or on the KLF sponsored, Leduc MLD course run by Jane Wigg.
In addition, we have agreed to three direct funding requests for Leduc UK’s course in Cannock (6 or 11 days Manual Lymphatic Drainage training). We are particularly pleased with these three Requests, which came via our website, as the individuals cover three distinct geographical areas, outside of London:
- West Midlands
- Hampshire, Wiltshire and Dorset
- West Suffolk
This allows us to extend the reach of our geographical support! We continue to support a variety of practitioners, and since our inception in 2004, the breakdown of roles funded has been as follows:
|Roles||Percentage of places funded|
The Royal Marsden School (RMS) has filled its November Lymphoedema Module, and of the 20 places, Katie’s Lymphoedema Fund (KLF) are funding 13 which is a big increase on previous courses. The RMS have been significantly more proactive in working with us over the last 18 to 24 months, in particular we have received wonderful support from Friday Knight, Mary Woods, Jacquie Woodcock and Sarah Bateson, and as a result we are really starting to gain some momentum. So thank you to all of them.
At the time of writing we are approaching our 100th KLF scholarship and we hope to be able to highlight the person who is number 100 in our next issue in 2012.
Meantime here’s an update of the health care professionals we have helped fund training for since 2004:
- Incredibly the number of applications for funding have doubled in the last 12 months, so the word is spreading!
- The majority of participants on the courses are nurses, closely followed by physiotherapists.
- 55% work in NHS Trusts, up from 28% last year, with 37% working in Hospices.
- Geographic spread is widening and includes participants from the Isle of Wight and Eastbourne all the way up to Lancaster and Harrogate.
The following were amongst those who benefited from KLF funding of some sort in 2011:
|Staff Nurse||St John’s Hospice|
|Lymphoedema Therapist||St George’s Healthcare NHS Trust|
|Physiotherapist||St Francis Hospice|
|Macmillan Breast CNS||Kingston Hospital NHS Trust|
|Nutrition Nurse Practitioner||Clatterbridge Centre for Oncology NHS Foundation Trust|
|Physiotherapist||St Christopher’s Hospice|
|Senior Physiotherapist||BMI Healthcare Limited|
|Complemetary Therapies Coordinator||Ellenor Lions Hospices|
|Complementary Therapist||St Christopher’s Hospice|
Direct Web Enquiries lead to funding
We are open to direct requests for lymphoedema management training funding and are delighted to say that we have had a number of such requests come in direct via the website.
Here are a couple of extracts from these requests, which we are in the process of approving (Nov 2011). If you know of anyone who would like support in their lymphoedema management training please put them in touch with us via email@example.com.
“I trained in Complementary Therapies following loss of my partner to cancer. This personal experience together with the palliative care and oncology exposure of my clinical placements has made me a sensitive and empathetic practitioner. I would very much like to train in Decongestive Lymphoedema Therapy. As a single parent with a disabled daughter, and a new graduate I do not have the funds for the course. My maturity and counselling training are valuable skills, useful in helping patients as they adapt physically and psychologically to changing conditions. However, I believe that a course in MLD would enable me to secure work in the NHS and Hospice services.”
“I am a Breast Care Specialist nurse treating patients both post surgery, & during the trajectory of their treatment. I have a special interest in treatment of upper arm lymphoedema, have done the basic lymphoedema study days, but would like to do a course on MLD in order to be able to help set up a service at the hospital. At present, we see 400 new cancers per year, but have no lymphoedema service so I strongly feel that this should be addressed.”
5 Day Manual Lymphatic Drainage Course
The first Leduc MLD Course held at The Royal Marsden Hospital started on April 7th run by Jane Wigg. The course was in two parts with three study / practical days in April followed by a further three days in June. The course completed on June 12th when all participants underwent a practical assessment. The 11 course participants were a mix of nurses and physiotherapists, including one from Nottingham, another from Wolverhampton and the rest closer to London. All of them had successfully completed previous study at The Royal Marsden School of Cancer Nursing and Rehabilitation in the management of lymphoedema and had identified a need for MLD to be incorporated within their practice. Jane Wigg of Leduc UK, the course leader said: “It went really well. It is always my intention to teach in a relaxed and open manner- I hope that the students found it easy to learn this way but also absorbed some serious theory which they obviously transferred to their theory and practical exams, making it a 100% success rate. We can certainly say that it turned out some excellent therapists who will all enhance their patients’ lives with this skill.”