Sue Ryder St John's hospice in Moggerhanger shines a light on lymphoedema support

One year after the expansion of its lymphoedema service to treat non-cancer patients, Sue Ryder St John’s Hospice is raising awareness of the condition and the support available.

Lymphoedema is a chronic condition caused by damage or failure of the lymphatic system. Excess fluid then collects in the tissue and causes swelling. It can develop anywhere in the body but is more common in arms or legs.

Sue Ryder St John’s Hospice provides the only service offering specialist care to both cancer and non-cancer patients living with the condition in Bedfordshire.

Natasha Boysen, Katy Davis and Paula Read are lymphoedema specialist nurses at the hospice.

“Historically, lymphoedema was most commonly associated with people who had cancer and were going through cancer treatment, particularly radiotherapy, but there are lots of other secondary causes like infection, routine hip or knee operations, obesity or a reduction in mobility,” said Natasha.

“We are also treating female patients with lipoedema, which also causes swelling like lymphoedema, but this is due to an abnormal build-up of fat cells often caused by hormonal changes. A lot of people haven’t heard of lipoedema and as a result it can often go undiagnosed or be misdiagnosed. Women with the condition can struggle to lose the weight through exercise or dieting.”

While there is no cure for conditions like lymphoedema and lipoedema, the service at the Bedfordshire hospice is there to help.

“Our role is to educate people about the condition, teach patients to understand their own lymphoedema, and equip them with the right tools and skills and enable people to self-manage on a daily basis,” said Paula.

Natasha adds: “Patients often come in looking for a quick fix, but it’s not that simple. It really is about small everyday changes like looking after their skin, exercising, and eating healthily, elevation to encourage drainage, and wearing compression garments. Treatment really becomes part of people’s everyday routine.”

And the team, who see more than 200 patients each year through the three-day-a-week service, say their role is really rewarding.

“The feedback we get from patients is that they feel listened to and supported. We have time to spend with them; we get to know them; they get to know us.

“We can make a true difference to that person’s life, empowering them to live the best life they can.” said Katherine.

They hope that by raising awareness of the condition and how it can be treated, they can encourage more people to seek help.

Natasha adds, “We don’t want people to think they can’t receive support from us because they do not need palliative care or the support of the hospice. Yes, we are physically based at the hospice, but most of the people we see are fit and well”.

“We want people to know that lymphoedema can be managed well and effectively with the right tools, knowledge and small lifestyle changes.”

The lymphoedema service at Sue Ryder St John’s Hospice is open to people registered with a Bedfordshire GP. To be referred, speak to your GP, specialist nurse or lead healthcare professional.

For more information email [email protected] or call 01767 642 241.