Medics admit lymphoedema sufferers receiving very low standard of care
Services for Ireland’s 15,000 lymphoedema sufferers are under review as many seek referral for treatment abroad
Nina Murray: she says the cost of her high-grade compression bandaging is €3,340 per year, and the total cost of her yearly treatment is €6,390. Photograph: Alan Betson
Nina Murray diagnosed her own condition before medics could shed any light on the problem. After consulting “Dr Google”, she asked her GP whether the swelling in her leg could be lymphoedema, a chronic condition caused by an impaired lymphatic system, rather than the post-op swelling he suspected. He felt it unlikely but her hunch was right.
Since becoming chairwoman of patient advocacy group Lymphoedema Ireland, she hears versions of the same story time and again – that doctors are very much on the back foot when it comes to this condition.
In late 2008, aged 29, she had 23 lymph nodes removed from her pelvic area while undergoing treatment for early stage cervical cancer.
Six months after receiving the all-clear, she noticed changes in her body in the run-up to her wedding day.
“I went for a fitting and the dress just felt funny but I put it down to overindulging.”
It was the onset of lymphoedema.
Unable to move fluid
“When you remove the nodes, you lose the capacity to pump lymph. I got the all-clear from cancer, which was great, but I lost the ability to move fluid upwards,” she says.
“I used to take lots of exercise but suddenly had this hugely swollen leg. You can’t sunbathe so holidays are out, you can’t wear tight clothes, shave or wax your legs [to avoid breaking the skin].
“The consequence of not complying is that you can end up in a life-threatening situation if you get an infection.”
The swelling proved difficult to control so she ultimately had to go to the Földi Clinic, a centre of excellence in Germany, for treatment on the E111 programme where, if the treatment is not available in Ireland, the HSE is obliged to pay for it overseas.
With the right care she lost a stone in fluid from her left leg and three-quarters of a stone in her right.
She is one of an estimated 15,000 lymphoedema sufferers in Ireland and 140 million worldwide.
The lymphatic system plays a role in the body’s immunity; a drainage system that takes away 10 per cent of the excess fluid the blood system cannot remove.
When it is damaged, the fluid that would normally be removed begins to pool in the limbs and causes acute swelling.
There are two types of lymphoedema. Primary, where a person is born with the condition, and secondary where it develops after trauma to the lymphatic system – often as a side effect of medical treatment, particularly for breast, gynaecological, prostate, testicular and bowel cancers.
With 1,300 people developing the secondary type every year, the Irish Cancer Society considers it one of the top three issues in cancer survival.
Despite its prevalence, treatment provision in Ireland is bordering on negligent. There is awareness of the problem within the health system.
In a 2010 survey into lympoedema care by the Irish Cancer Society, health professionals flagged insufficient treatment provision, patchy distribution of services and pressure on resources as key issues.
A majority rated the standard of care as “very low”.
A review of services is currently being carried out after the HSE noticed a pattern of lymphoedema patients seeking referrals for treatment abroad.