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A pioneering award-winning service for lymphoedema patients, created in Swansea Bay, is attracting interest from health organisations around the world.
Lymphoedema Wales, which is hosted by Swansea Bay University Health Board, has worked with patients and therapists across Wales to create a new assessment to help patients report on their outcomes.
Lymphoedema Patient Reported Outcome Measure (LYMPROM) supports virtual assessments and a more in-depth and holistic approach to treatment.
Lymphoedema is caused by a build-up of lymph fluid. It can lead to swollen limbs that leak fluid, decreased mobility, pain, anxiety and depression and frequent admission to hospital with cellulitis.
It can be caused by damaged or removed lymph nodes following cancer treatment or surgery, as well as non-cancer conditions.
Many people with lymphoedema have to wear compression garments for the rest of their lives as well as taking care of their skin and weight, whilst keeping active.
Pictured: Dr Melanie Thomas, Dr Marie Gabe-Walters and Karen Morgan with Lymphoedema Wales' award.
Around 20,000 people in Wales have the condition, with just under 4,000 in the Swansea Bay area.
They are treated at either Singleton Hospital, Swansea University, Cimla Health and Social Care Centre or Neath Port Talbot Hospital.
Previously, nurses and therapists completed patients’ paper forms during face-to-face appointments.
The introduction of LYMPROM using an online form has helped patients fill in their assessment beforehand.
They rate 13 topics, including pain, discomfort, anxiety levels, finances or shopping for clothes or shoes, between 0 (no impact) to 10 (extreme impact).
That feedback not only explains how lymphoedema is affecting the patient, it also allows the therapist to understand their treatment needs for ongoing support through the service.
The success of the platform has not gone unnoticed, with health organisations from America, Germany and Belgium among those looking to replicate the service.
LYMPROM has also been recognised at the 2021 Advancing Healthcare Awards Wales, for which Lymphoedema Wales won the Recognising Excellence in Rehabilitation category at a virtual event.
Dr Melanie Thomas, Clinical Director for Lymphoedema Wales, which is made up of Wales’ seven health boards, is the creator of LYMPROM.
She explained that the wheels were in motion for LYMPROM six years ago.
“Back in 2015 we had funding to do lymphatic venous anastomosis (LVA) super micro surgery,” she said.
“Part of the funding through the Welsh Health Specialised Services Committee was that we had to report on patient outcomes.
“We spoke to numerous patients on what is really important to them. Body image, work, hobbies, finances – lymphoedema affects so many things that you don’t get to the crux of in a clinical appointment.
“We understood then what we needed to do with the patient and what was next, but it wasn’t what was valuable and really important to that patient.
“We collected all the information on notes, which we would score, but that was it in terms of the assessment.
“We felt we were missing an opportunity of really understanding what the patients really wanted support with.”
When the Covid pandemic materialised, digital access to LYMPROM was expedited. It instantly proved the perfect resolution during a time where access and travel was severely restricted.
Dr Marie Gabe-Walters, National Research and Innovation Lymphoedema Specialist based in Cimla Health and Social Care Centre, said: “We did a lot more virtual consultations as we really needed to see what was important to the patients.
“If they were scoring very high on outcomes, then we would prioritise their care face-to-face.
“If the patient ranked topics as ones and twos, then it was better to speak over the phone instead of calling them into the hospital during a time when the risk of catching Covid was far higher.
“The marks submitted by the patient gives us the first point of discussion when we see or speak to them.
“Most areas may be marked as low as one out of 10, but another section could be marked as high as nine or 10, so we look at ways of managing the chronic condition to the best of their ability.
“It gives them some form of accountability, and we’ve noticed that patients really like that.
“The sections have psychological, physical, functional and emotional outcomes. It’s a holistic outcome, rather than a purely physical approach.”
Siân Clement-Wake, Lymphoedema Clinical Lead at Swansea Bay’s Lymphoedema Service, explained the further benefits of using the LYMPROM system.
She said: “It encourages patients to think about their condition and share information that may not always be captured during a treatment or assessment. This encourages the drive for patient focus care.
“Patients feel that their concerns are being specifically addressed from the answers they have provided on their LYMPROM and that staff have a good understanding of their concerns and discuss them.
“LYMPROM identifies the true impact of lymphoedema on an individual, because you may have an individual with gross swelling, but it does not bother them, however you may get an individual with milder oedema, but it really impacts on them both mentally and physically.
“This can help identify when an individual may need additional support and can be signposted to the correct professional for this.”
Karen Morgan, National Lymphoedema Education and Research Lead at Lymphoedema Wales, said the switch to an online platform has led to a hugely significant upturn in patient feedback.
“LYMPROM gives us the chance to measure whether the patient is improving or not. Then it’s a case of why it’s not improving, or how we can improve it and make their life better," she said.
“Now we’ve switched from paper to online, we’re seeing a lot more feedback from patients and that’s giving us a lot more insight. It’s opening up a lot of opportunities regarding research.
“On top of numerous innovative projects, our role at Lymphoedema Wales is to make sure that services across the country are standardised, which means patients get the same treatment and care no matter if they’re in Conwy or Mumbles.”
The success of the recent award is testament to the collaborative work put in by all seven lymphoedema services across Wales, as Dr Thomas points out.
She said: “This award is testament to the hard work and determination shown by all staff in Lymphoedema Wales, the Value in Health teams and patients.
“It’s been a collaborative effort. There are more than 130 staff members involved in winning the award, and everyone can take great credit and satisfaction for it.”