Lymphoedema patients to benefit from online mental health support

NHS Wales’ digital wellbeing service has teamed up with a pioneering clinic to help patients manage the mental health impacts of Lymphoedema and Lipalgia Syndrome.  

The Lymphoedema Wales Clinical Network (LWCN) established a psychological support service – the only one of its kind in the UK – after patients spoke of the emotional challenges of living with these conditions. 

Patients revealed how their physical symptoms were often accompanied by depression, anxiety and worries about appearance.  

Support offered by the service’s two psychologists is now being complemented by direct referrals to SilverCloud Wales, a suite of online, self-help courses based on Cognitive Behavioural Therapy (CBT). 

Dr Jayne Williams, National Lymphoedema Consultant Psychologist for LWCN said: “This is an exciting time for us.  

“We're looking at different ways for people to access psychological therapies – SilverCloud being one of them. The aim is to provide timely, preventative support before people get to crisis point. 

“As SilverCloud is online, it has the capacity to reach many more people than we could see face-to-face, and its flexibility means that it fits around busy work and family lives.  

“Being able to offer something that patients can do in their own way, at their own pace is brilliant.” 

NHS Wales online CBT project manager Fionnuala Clayton said the new referral pathway was inspired in part by feedback from a ‘Living Well with Lymphoedema’ event hosted by LWCN, where patients were asked what they would like from its emerging psychology service. 

“Patients wanted to feel as though they were not alone and that they still had a healthy and happy life despite their condition,” said Fionnuala. “They wanted easy access to support for building resilience alongside help to help themselves. 

“Coming away from the event, we knew a referral pathway would support many patients across Wales.” 

Lipalgia Syndrome – also known as Lipoedema - is an abnormal build-up of adipose fatty tissue, usually in the lower half of the body, which more commonly affects women.  

Lymphoedema is another incurable, long-term condition which develops due to a damaged or poorly-functioning lymphatic system. Damage can occur as a result of many factors including obesity, surgery, cancer treatment, infection or injury.  

People who are sedentary are particularly vulnerable as the lymphatic system relies on movement to remain healthy and move the lymph fluid around the body. Symptoms include swollen and painful heavy limbs and a higher risk of skin infections and wounds.  

Said Dr Williams: “These are conditions that people have to learn to live alongside forever, which can be incredibly difficult.  

“They have to cope with swelling and pain, they may have to wear compression bandages or garments, carry out daily skin care routines and do lots of movement. 

“We see lots of people with very low mood. There’s also a lot of anxiety around body image and intimacy.  

“Feeling people are judging you, and perhaps not being able to find clothes or shoes that fit you, means your whole identity and your social confidence can be affected. You can feel more isolated and withdrawn.” 

Around 25,000 people across Wales use LWCN services.  

Local health board lymphoedema services can refer people to the psychology service within the National Lymphoedema Team, which is hosted by Swansea Bay University Health Board. 

Dr Williams said several patients had been referred to SilverCloud’s Space for Positive Body Image programme after attending a body image workshop. 

Other courses on offer include support for anxiety, depression and stress.  

Anyone in Wales aged 16 or over can self-refer to SilverCloud, without seeing a GP and from the comfort of their own home.  

Fionnuala Clayton added: “We're delighted to onboard the Lymphoedema Wales Clinical Network. This has been a collaborative effort between services, working together to identify how best support patients living with Lipalgia Syndrome and Lymphoedema.” 

For further information and support on Lymphoedema and Lipalgia Syndrome, visit Home - Lymphoedema Network Wales

To self-refer to SilverCloud Wales, visit SilverCloud. Making Space For Healthy Minds

Published: 21/01/2025