Scottish patients with a chronic condition which puts them at risk of life-threatening infections need better access to NHS services to support them, experts have warned.
Lymphoedema, which causes tissue to swell when the body cannot drain excess fluid, is rising as the population ages and obesity increases.
But while cancer patients affected by the condition are often well supported, others struggle to get access to services to help them manage the problem, which can cause dangerous complications such as cellulitis, according to the head of Glasgow’s nursing school.
A major international conference on lymphoedema is being held in the city next month, with the hope of raising awareness and increasing research to help the thousands affected.
Lymphoedema is caused by damage or disruption to the body’s lymphatic system, meaning it is unable to drain fluid from tissue, causing painful swelling usually affecting the arms or legs. People with lymphoedema are more vulnerable to infection, including a serious bacterial infection of the skin called cellulitis which can be life-threatening.
While there is no cure, patients can be helped to cope with the symptoms.
But last year a report by the Scottish Medical and Scientific Advisory Committee (SMASAC) acknowledged lack of awareness of the condition among health staff and poorly resourced services, making a series of recommendations for improvements across the NHS.
Margaret Sneddon, head of nursing and healthcare at Glasgow University, said she now hoped action would be taken to respond to the concerns about lymphoedema care.
Mrs Sneddon said access to lymphoedema services varied widely around Scotland.
“At the moment, the bigger services in Glasgow are the best resourced. But that’s not the case across Scotland,” she said.
“People don’t realise how common a problem it is and it can be life-threatening.”
A Scottish Government spokeswoman said: “We recognise that there are issues in the organisation and delivery of lymphoedema services in Scotland, and the government expects boards to act on the report’s recommendations.”
Lymphoedema ‘like toothache’
Margaret O’Grady has suffered with lymphoedema for many years, but only started getting help from the NHS around three years ago.
The 56-year-old from Uddingston, South Lanarkshire, was able to manage the condition to start with, but it gradually got worse but she only started to get access to NHS services when she was diagnosed with cancer.
Mrs O’Grady said many health workers were “ignorant” about the consequences of lymphoedema. “They don’t realise how painful it is. It is like the worst toothache and it never goes away,” she said.
“You’re not going to a GP to be made better because there is no cure, but you go there to get the information you need to self-manage your condition.
“We may not be able to cure it but we need to do something to stop people being in pain,” she said.