Increasing awareness of lymphoedema

Categories: Care.

The first thing I notice as I enter the room at St Christopher’s Bromley is the level of chatter coming from the 16 attendees who are sitting in a large circle around the room. The second thing, is a commonality between those 16 people – they are all discussing their personal battles with lymphoedema.

The support group takes place four times a year and is open to those attending the Bromley Lymphoedema Clinic, which is run by St Christopher’s Bromley. 

The clinic covers the entires borough of Bromley and currently cares for more than 470 people.

It was originally set up in the 1990s for patients with life-limiting illnesses associated with the hospice, but as the only clinic of its nature in Bromley, the hospice was able to extend the service to help people in the wider community.

Today, Clinical Nurse Specialist Jan Aldridge informs me that the people attending the group are not in fact associated with the hospice for a life-limiting illness, rather solely for their lymphoedema.

Limbs become distorted

Lymphoedema is characterised by swelling of the limbs or other parts of the body and causes acute discomfort. The swelling can become so severe that limbs become distorted, the skin toughens and lymph fluid can leak through.  

Complications caused by lymphoedema include episodes of cellulitis (an infection of the deeper layers of the skin and the underlying tissue) which can result in repeated admissions to hospital.

The condition becomes obvious when I take a closer look, and can spot bandages (known as sleeves or stockings) on many legs and arms within the room.

According to the British Lymphology Service, “lymphoedema results from poor drainage of the body’s lymphatic system” and “it affects over 200,000 people of all ages and genders in the UK and Ireland.

The condition is considered chronic and progressive and patients can have either a primary or secondary diagnosis of lymphoedema:

  • Primary – a person is born with lymphatic problem and swelling occurs for no apparent reason. This can happen at any point in life and can run in families.
  • Secondary – cancer treatment which involved removing lymph nodes and radiotherapy can make you more prone to developing lymphoedema or if you have a long term condition and cannot walk very far you can develop swelling in the legs.

At the Bromley clinic I speak to people with both primary and secondary forms of the condition. 

The group swaps invaluable advice about the best methods they’ve found for applying their compression bandages (which often have to stay on all day) or how to keep cool in the hot weather (spray the bandages with water often to keep them moist.)

There is much talk about techniques for removing bandages at the end of the day and rubber gloves seem to be the popular choice. 

But despite the upbeat mood in the room the condition can be incredibly debilitating. Many report a long, difficult journey of misdiagnosis before eventually being referred to the clinic. 

Hilary’s story

I hear from Hillary who is attending the support group for the first time.

Hilary’s says she had “given up” and saw “no light at the end of the tunnel” until she found the Bromley Lymphoedema Clinic in February this year.

“I couldn’t walk,” she tells me. “And no one knew what was wrong with me. My legs were so swollen and weeping, I had to have the dressings changed every hour.”

Hilary has also suffered with cellulitis several times and has been on antibiotics since December 2013, often requiring admission to hospital.

After eventually being referred to the hospice clinic, Hilary has seen some dramatic improvements. Her legs have finally stopped weeping in the last six weeks and she is able to wear the compression stockings to help minimise the swelling. 

“I only wore black, I was miserable. But my bubbliness is coming back,” she says.

“My confidence was gone and everyone just looks at you. The smell and odour from fluid was shocking. But the hospice here has changed my life. I just wish there was more awareness, people just don’t know.”

Hilary doesn’t know what caused her lymphoedema and may never know. But after attending the clinic twice a week for seven months, her condition has seen a drastic improvement.

“My daughter says she’s got her mum back,” Hilary adds.

You can find out more about lymphoedema on the British Lymphology Society website and read about the Bromley Lymphoedema Clinic on St Christopher’s Hospice website. 

See a gallery of images from the support group on ehospice. 

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