“Helping someone crying on the end of the phone has been, and continues to be, one of the hardest things”

This week is Lymphoedema Awareness Week, when we hope to raise awareness of lymphoedema to help reduce its prevalence, severity and impact through early recognition and intervention. Here, Lymphoedema Therapist Jan Bell talks about how the Sue Ryder Duchess of Kent Hospice team has had to adapt during COVID-19 to continue providing specialist care and support to people with lymphoedema, a condition of swelling in the body’s tissues.

The Lymphoedema Team at Sue Ryder Duchess of Kent Hospice on a video call
Sue Ryder Duchess of Kent Hospice's Lymphoedema Team during a video call

The Sue Ryder Duchess of Kent Hospice Lymphoedema Team supports around 500 people across Berkshire each year, many of whom have cancer-related lymphoedema, an inflammatory condition which is often a side effect of their treatment, causing a swelling of tissues in the body.

Jan Bell, Lymphoedema Therapist at the hospice, recounts the challenges the team has faced throughout the pandemic. With restrictions across the country, the team could not meet or provide support for people in person, meaning that they had to quickly adapt to new ways of working so that they could continue their specialist care.

“Initially we closed our clinics very quickly and changed the way we worked by personalising resources, making videos and contacting patients over the phone or by video call. We sent out measurement guides and tape measures to help patients measure their own swelling and followed patients up as often as we could to help them feel supported to manage their condition.”

“Working during COVID-19 has been very different, and often very challenging”

“Working during COVID-19 has been very different, and often very challenging,” Jan said. “It’s been difficult to properly assess people and give them the support we know will help, safely, when we are assessing people by phone or video call.

“The biggest difficulty has been the fear of ‘missing something’ or making a wrong decision because you have not got them in front of you. Simple things like noticing the way someone is walking can help your assessment.  

“Patients have also contacted us about things not related to their lymphoedema just because they have felt frightened, alone, or have not known what is available and/or still open. The biggest difficulty is probably hearing people’s distress; helping someone crying on the end of the phone has been, and continues to be, one of the hardest things.”

Bright and colourful scrubs

“We are very lucky to have the support of the local community,” Jan says, “and we are all very appreciative of the support we’ve had to help us continue to do our jobs.

“The donations of scrubs (of which we are still using and very grateful for) were amazing, especially when we have to launder so many uniforms. It’s been lovely to have an excuse to wear something bright and colourful too!”

Every Body Can

For this year's Lymphoedema Awareness Week, the British Lymphology Society have also launched their #EveryBodyCan campaign, providing a host of resources to help healthcare practitioners give people with or at risk of developing lymphoedema encouragement to become and stay active, even during these difficult times.

You can find tips on keeping active, challenges you can take on at home, activity guides and a video about the importance of the lymphoedema system, as well as helpful documents for healthcare professionals.

Find out further information on Sue Ryder Duchess of Kent Hospice, the expert palliative care they provide and ways you can help to support them.

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