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Lymphoedema service supporting family to enjoy quality of life through generations

As well as providing end of life care, our services support people to manage their condition and live as full a life as possible. This includes our Lymphoedema Clinic, which is recognised as a national centre of excellence for lymphoedema management.

Lymphoedema, a condition recognised by chronic swelling, might be more common than you think. It’s a condition affecting at least 240,000 people in the UK, and many more remain undiagnosed and untreated.

Lee Casey, aged 40, from Whitley Bay, and her daughter Neve, who is 8 years old, have primary familial lymphoedema, which is a genetic form of the condition. Lee’s twin sister and dad are also treated for the condition; all receiving treatment from us.

Lee has been treated at the Hospice for almost 20 years, and explains what it’s like living with the condition, and how St Oswald’s has supported her family:

“I was born with lymphoedema, as was my twin sister Melanie.  When I was growing up it didn’t really bother me but once I turned 18 I started to get a lot of pain and swelling in both my legs.  Up until this point I hadn’t really thought about the condition, but was fully prepared for its onset as my Dad also has it.          

“Since then I’ve always had to wear special stockings to keep the swelling down.  At first I hated not being able to wear skirts and dresses and I was limited as to what footwear I could buy.  But now, I see this as an excuse to have fabulous, good quality shoes!

“St Oswald’s and their Shiremoor Outreach Clinic have helped me to manage a lot of my symptoms myself.  They’ve taught me about skincare, exercise, simple lymphatic drainage and compression garments. 

“I have been treated by St Oswald’s for 18 years now, and have just been discharged from their care. My daughter Neve has been treated for her lymphoedema since she was a baby too. Neve is a twin, and initially both of my daughters, Neve and Emily, were diagnosed with lymphoedema at seven months old, however Emily’s symptoms are no longer present so doesn’t come to the Hospice for treatment. I also have another child, Kian, age 5, who doesn’t have symptoms of lymphoedema.”

Lee’s daughter Neve is now 8 years old and comes to the Hospice every six months to manage her condition. Talking about Neve’s treatment, Lee continued:

“Neve is treated at St Oswald’s Outpatient Suite by Kath Clark, the Day Services Manager, who monitors her condition. Neve adores Kath, and is not phased about coming to the Hospice at all; in fact I think she looks forward to coming in to see Kath.

“Due to her lymphoedema, Neve’s foot often swells up quite badly so she has learnt to self-care. Although she’s only 8 she’s very good at it and wears bandages, keeps her foot elevated and regularly moisturises, all which she has learnt to do with advice from Kath.

“The only other symptoms I do notice with Neve, compared to my other children, is that she seems to be under the weather more often, with cold-like symptoms.

Most importantly though, the condition currently doesn’t stop Neve from doing anything, she still plays sports and is very active, and I hope that with a positive attitude and the continuation of care from St Oswald’s the lymphoedema won’t be too much of a hindrance.

“I’m extremely grateful to St Oswald’s for the treatment, support and advice that Neve and I have received.  Having such an amazing support network is fantastic. I also know that my dad, Geoff and sister, Melanie are very grateful for the service too.”