During the recent Lymphoedema Awareness Week (6-10 March), staff from Sue Ryder Duchess of Kent Hospice raised awareness of the specialist support available for people living with the condition in Berkshire.
Lymphoedema is a chronic condition, which causes swelling in the body’s tissues as a result of the lymphatic system not working properly. It can develop anywhere in the body, but is more common in the arms and legs, and is thought to affect more than 200,000 people in the UK.
A physiotherapist and nurse-led service has been running at the Reading hospice for more than three decades, providing specialist care and support to people living with secondary lymphoedema as a result of cancer or cancer treatments.
Fiona Harland, Lead Lymphoedema Specialist Physiotherapist for the service, which supports around 500 people each year, said: “Lymphoedema can be very challenging to live with. But, with early intervention and access to the right support, treatment and guidance from a specialist, symptoms can usually be improved, with people feeling less discomfort and more able to get on with their lives.
“We aim to support people to become experts in managing their condition and it’s very rewarding to see patients becoming more confident and knowledgeable, whilst knowing they can access our service for support and advice when they need it.”
To raise awareness of lymphoedema, and highlight the support available from Sue Ryder, three Berkshire residents have opened up about their experiences of living with the condition.
Paula Potts who lives in Charvil, has had lymphoedema since 2011 after receiving treatment for cancer. She said: “Luckily my swelling is quite mild but having lymphoedema is uncomfortable and it can make you more self-conscious because you want to wear clothes that cover it up.
“I see Fiona at the hospice who is so lovely and tries everything she can to help – including making sure my compression stockings are perfect for my everyday needs and giving me reassurance when I need it. I have also found that keeping active has really helped me. I do Nordic walking which is great as a full-body workout, swimming and ball rolling, and together these activities have definitely helped me to manage the swelling.”
Trudy Cleary, who lives in Wokingham, was diagnosed with lymphoedema in 2021 after undergoing surgery to remove her lymph nodes following a breast cancer diagnosis.
She adds: “When I went for a follow-up appointment after my surgery one of the nurses noticed that my bra strap was pulling down on one side more than the other – I thought it was just too tight, but it was actually caused by lymphoedema. I was so grateful that they picked it up and they referred me to the brilliant team at Sue Ryder Duchess of Kent Hospice.
“The team did an initial assessment and provided me with some compression garments and exercises that I could easily incorporate into my daily routine to help manage the swelling. They also taught me how to apply specialist tape as well as specific massage techniques to move the fluid – and the difference it makes is absolutely unbelievable.
“The team go above and beyond and make everything so easy to follow. It’s not just a case of giving me some information leaflets, they really take the time to understand and listen. I am usually the type of person who just gets on with things and deals with pain, but because they are so easy to talk to and so caring you do find yourself opening up more.”
Sonning resident Gheorge Stan was referred to the Sue Ryder lymphoedema service in 2020, and he describes it as a ‘life-changing’ experience.
“I was diagnosed with cancer during the pandemic and initially I responded well to treatment, but I started to experience some side effects, including lymphoedema”, he explains. “For months I was struggling with the swelling in my feet and legs – I only had one pair of sandals that I could wear and I was worried that if I had to attend a wedding or event then I didn’t know how I would do it.
“I was referred by my oncologist to Sue Ryder and they provided me with a compression stocking to try. I wore the stocking on one leg initially and couldn’t believe the result after just a few hours – it was extraordinary. After wearing them on both legs the swelling reduced considerably. I rediscovered all my shoes and felt like my old self again.”
The lymphoedema team at Sue Ryder Duchess of Kent Hospice hope to raise awareness of the support available to people in Berkshire living with the condition so that more people will speak to their GP, consultant or lead healthcare professional to make a referral to their specialist service.
Fiona adds: “We don’t want people to think they can’t receive support from our clinic because they do not need palliative care or the support of the hospice. Yes, we are physically based at the hospice, but we are able to see all those with lymphoedema who are living with the long-term side effects of cancer and its treatments.
“The whole hospice movement has changed so dramatically in recent years. Hospices are not places where people come to for the last days of their life. We provide specialist care to help people get their symptoms under control so they can live their life well.
“Our service is all about increasing people’s quality of life and our goal is for each patient to remain independent, while safely managing their lymphoedema.”
The lymphoedema service at Sue Ryder Duchess of Kent Hospice is open to anyone who has lymphoedema related to cancer or its treatments and who has a GP in Berkshire West. To be referred speak to your GP, specialist nurse or lead healthcare professional.
Alternatively for more information, email enquiries.berkshirewest@sueryder.org or call 0118 955 0400.
For more information about Sue Ryder Duchess of Kent Hospice, visit: sueryder.org/duchessofkent
To find out more about the Berkshire Lymphoedema Support Group, visit their Facebook page: facebook.com/Berkshire-Lymphoedema-Support-Group-587223961710261
Picture caption: Zoe and Becca from the lymphoedema team at Sue Ryder Duchess of Kent Hospice
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