This Lymphoedema Awareness Week Sue Ryder St John’s Hospice is celebrating the successful expansion of their service giving care to Bedfordians living with lymphoedema.
The lymphoedema service has been provided at Sue Ryder St John’s Hospice to people living with cancer for over 20 years, offering specialist care for the inflammatory condition.
But last year the service expanded further to provide support to non-cancer patients and lipoedema patients living in Bedfordshire too – at a time healthcare services were facing huge challenges from a worldwide pandemic.
Over the last five years the team has helped support 895 Bedfordians.
Natasha Boysen, 44, lives in Letchworth and is one of team delivering the specialist service. She said: “The past two years has been so difficult for so many people personally and professionally. Here at the clinic we have seen some increasing symptoms of lymphoedema as people have not been moving around as much, and this lack of movement can make the condition worse.”
“We have been working hard to help people manage their condition through the pandemic, while welcoming new non-cancer and lipoedema patients to the service over the past year too.”
Lymphoedema
Lymphoedema is a chronic inflammatory condition when there is damage to or failure of the lymphatic system which causes swelling, called oedema.
“Patients often ask us to wave a wand to make it better or ask us if it can be drained,” shares Natasha. “But I am afraid there is no magic wand.”
However, with specialist support from the team at Sue Ryder, patients can learn to manage their condition.
“One patient once said to me it was a full time job looking after their lymphoedema,” adds Natasha, “Looking after their skin, exercising and wearing their compression garments. But with the right tools, skills and support people can learn to self-manage their condition.”
Katy Davis, 53 from Sandy, works alongside Natasha at the three-day-a-week clinic. Katy is keen to make more people aware of the little-talked about condition. She said, “The lymph system is an invisible system and no one really knows about it until it doesn’t work anymore and you get limb swelling.
“It can affect any part of the body but is commonly seen in an arm or a leg. It is surprisingly common too. It is thought to affect six in every 1,000 people here in the UK, which is an estimated 450,000 people. This makes it more common than the combined number of people living with Multiple Sclerosis, Motor Neurone Disease, HIV and Parkinson’s Disease.”
Specialist nurse
Paula Read, age 46 from Buckden, has worked with the specialist Sue Ryder service for six years and has been a lymphoedema nurse for many years. She shares there are a number of treatments typically offered to help manage the condition. “A variety of treatments can help, including skin care to prevent cellulitis and chronic skin changes and exercise to aid lymph drainage, which depends on movement. Compression garments such as stockings, tights, arm sleeves and gloves, depending on where the oedema, is can also help.
“Through our service we teach patients simple lymphatic drainage or self-massage and we may offer manual lymphatic drainage.”
“Other forms of treatment might include kinesio tape, foams, photo-biomodulation, which is a form of low level light therapy, or we use an intermittent pneumatic compression pump which mimics massage amongst other things!”
The team say their role is really rewarding, especially when they are able to support a patient to manage their condition and symptoms.
Natasha adds, “It is so rewarding when we can see that we have helped a patient improve their quality of life. When we get to the point where patients are stable and can self-manage we can discharge them and that is just brilliant. We know we have done our job and the patient is happy.”
The team hope by increasing awareness of the support available to people in Bedfordshire they can encourage more people living with the condition to speak to their GP, consultant or lead healthcare professional about making a referral to their specialist service.
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 we see people who are fit and well.
“The whole hospice movement has changed so dramatically in recent years. Hospices are not places where people come for the last days of their life. We provide specialist care in a lovely environment to help people get their symptoms under control so they can life their life well while safely managing their lymphoedema.”
The lymphoedema service at Sue Ryder St John’s Hospice is open to anyone living in Bedfordshire with lymphoedema or lipoedema who is eligible for treatment. To be referred, speak to your GP, specialist nurse or lead healthcare professional who will refer you into the service for an assessment by Sue Ryder’s specialist nurses.
For more information about Sue Ryder St John’s Lymphoedema Service email stjohns@sueryder.org or call 01767 642 241.
For more information on Sue Ryder St John’s Hospice visit www.sueryder.org/stjohns
