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
Lymphoedema is a long-term swelling caused by a build-up of fluid in the body’s tissues, when the lymphatic system is unable to drain the fluid away. Lymphoedema can affect any part of the body and can affect men and women of all ages. Many people develop it following treatment for cancer.
A free information session about the condition will be held from noon to 5pm on Saturday, March 28th, at the Ashling Hotel, Parkgate Street, Dublin 8. The keynote speaker is Dr Vaughan Keeley, an expert in lymphoedema and consultant in palliative medicine at Derby Hospitals, UK. To book, email firstname.lastname@example.org.
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.
Lymphoedema Ireland understands from the HSE’s national director of quality and patient safety, Dr Philip Crowley, that a report is to be completed in the coming months.
Darren Prince is a lymphoedema therapist based in the Prince Clinic in Cork. He is a member of MLD Ireland, a professional register of Irish practitioners qualified to treat the condition.
In Austria, where he trained, if you suffer from lymphoedema, the equivalent of the HSE will send you to a clinic with full board for two weeks where you will be given dietary advice, daily manual lymph drainage, multi-layer compression bandaging to reduce swelling, a custom-fitted compression garment and exercise therapy.
“That is the proper medical treatment,” says Prince.
“When you see the services in Austria and then come back to Ireland, where people are fighting to get a compression garment, it is just not on.”
He explains that the condition is progressive and without early intervention it can lead to serious and potentially life-threatening complications such as major infections, cellulitis and ulcers.
In its later stages, patients can develop lymphorrhea where lymph fluid actually leaks out through the skin.
“Early intervention and education is the number one strategy in treatment of lymphoedema,” says Prince. “It is progressive so you need to get it early. People are only getting in the system when they have serious complications that are very costly for the HSE to treat.”
The UK’s NHS calculates that it saves £100 for every £1 spent on lymphoedema services.
Research carried out in the US found that medical students spend as little as 30 minutes studying the condition during their four-year medical degree, and Ireland follows a similar model.
Rather than being treated in the public system, as is the norm in many EU countries, patients are having to resort to expensive private treatment. Access to compression garments is a huge issue.
In Nina Murray’s case, the cost of her high-grade compression bandaging alone is €3,340 per year and the total cost of her treatment is €6,390 per year.
“Because of cost, patients are not replacing their garments” says Murray. “Their limbs are swelling, tissue is hardening and deformity is occurring as well as increased risk of infection.”
Issue of cost
Alan Cotter (38) from Cork has had to forgo recommended treatment because of the cost. He discovered in October 2013 that he has primary lymphoedema in his left foot which took eight months to diagnose.
He is in the same boat as many young couples in Ireland with a young family to support and a mortgage “up the ying yang” as he puts it.
“If I am on my feet all day in work, within an hour my foot just feels like it is going to explode.
“All day long, that’s what it feels like. I need manual lymph drainage twice a week to reduce the swelling but it comes down to cost . . . it is not a runner for me to be having two sessions a week at €70 a go.”
March is Ireland’s first Lymphoedema Awareness Month. Details of events can be found on lymphireland.com.