Wellbeing support for lymphoedema patients is a UK first

People with lymphoedema and Lipalgia Syndrome (lipoedema) in Wales are being offered psychological support through a new service which is the first of its kind in the UK.

The service, which is available across Wales, was established following patient feedback which highlighted the emotional challenges associated with living with these conditions.  Both are long-term conditions for which there is currently no cure.

Lymphoedema is caused by a failure of the lymphatic system, the network of vessels and glands that remove excess fluid and fight infection. Lipalgia Syndrome (lipoedema) is a condition that lays down adipose fat disproportionately in the lower half of the body and primarily affects women. 

The new psychology support service is being introduced to support existing lymphoedema services, which are used by around 25,000 people across Wales.

Dr Jayne Williams, National Lymphoedema Consultant Psychologist for the Lymphoedema Network Wales, said: “People living with lymphoedema and/or Lipalgia Syndrome have been really clear there is an emotional need that isn't being met.

“They would like more support with the emotional parts of self-management of these long-term conditions that is more often available for other lifelong conditions, like cancer and diabetes“

“Lymphoedema requires quite a lot of daily self-management, such as compression treatments, skin care regimes, and lots of physical movement.

“You must fit all this in with work and other aspects of your life, and it can take over and feel overwhelming to manage yourself.

“And of course, conditions such as these impacts thoughts and feelings around relationships, intimacy, body image, and anxiety.”

The service is supported by Value in Health, and based within the National Lymphoedema Team, hosted by Swansea Bay UHB, part of the Lymphoedema Wales Clinical Network, which sees patients from across all seven Welsh health boards.

The number of people diagnosed with Lymphoedema is increasing due to obesity and age-related changes in the population. While a small number of people are born with the condition, many acquire it through infection, cancer and surgery which can damage the lymph nodes.

Unlike the cardiovascular system, the lymphatic system has no pump like the heart, so it needs to circulate by physical movement. People with sedentary lifestyles or who cannot move due to other health conditions are therefore more likely to be prone to lymphoedema, which is most seen as swelling in the legs and arms when the lymph fluid remains in place.

Dr Williams has been establishing a wide range of services, including setting up patient psychoeducation support groups with Education Programmes for Patients (EPP Cymru), developing signposting information leaflets, producing videos, providing education and support to colleagues to upskill their psychological knowledge, and developing new service processes and models.  

In February this year, she and the team organised a Living Well with Lymphoedema patient event in the Pierhead Building in Cardiff covering a wide range of areas of self-management for people living with lymphoedema.

An additional psychologist, Dr Nilofer Husain, has recently joined the team, so they are now able to open the service up to provide direct therapeutic support for people living with either condition across Wales.

Local health board lymphoedema therapists can refer people who would like emotional support to cope with the impact lymphoedema or Lipalgia Syndrome has upon their lives, or to help them overcome barriers that impact their self-management of their condition.

One patient who has undergone some of the therapy sessions said: “One of the most significant effects of living with lipoedema/lipalgia is upon my emotional and psychological wellbeing; navigating huge issues and feelings around my body image, buying clothes to fit, and feeling comfortable in my clothes, as well as effects upon intimate relationships and everyday activities that I want to do.

“Given the fact that the most significant impacts are around my emotional and psychological wellbeing, the care and support I have been so fortunate to receive via Jayne and the psychology service have been immensely valuable, extremely compassionate, and sensitive and personalised to me.”

Clinical support has also been provided to staff members via reflective practice, to help better understand the needs of patients.

One said: “Reflective practice with Jayne has encouraged staff within our service to introspectively assess their own behaviours and actions, fostering a deeper understanding of our patients’ needs. This has helped us to refine our skills, enhanced empathy, improved our interactions with patients and each other, ultimately delivering better, more effective and compassionate care.  There has been an increase in resilience and a clear improvement in professional development.”

The Welsh Government Value in Health-funded service is the first of its kind within the UK, with the only comparable service available via a private clinic in Germany.

This week is Mental Health Awareness Week - For more information visit: Mental Health Awareness Week | Mental Health Foundation

Pictured: Dr Jayne Williams and Dr Nilofer Husain