Co-ordinated national lymphoedema service ‘would save millions’

Catherine Reilly | 07 Feb 2019 | 0 Comment(s)

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Catherine Reilly speaks to the Chairperson of Lymphoedema Ireland about the lack of services in Ireland for people with the condition and the long-delayed model of care

Over time, almost €13 million per annum could be saved by preventing hospitalisations for lymphoedema-related cellulitis through appropriate access to combined decongestive therapy (CDT), and approximately 15,000 hospital bed nights saved, according to the Chairperson of Lymphoedema Ireland.

Speaking to the Medical Independent (MI) in advance of next month’s Awareness Day, Ms Bernie Traynor said there are no coordinated lymphoedema services, with capacity, in Ireland. “Currently there is no fully accessible treatment service in Ireland with full capacity. There is zero treatment for children.”

While garments are available through the children’s hospitals, there is no CDT service, she underlined. Parents have to pay for private treatment that costs €80 per week, while teenagers often find it highly distressing to be regularly bandaged by their parents.

Children need “the same treatment as an adult, which is CDT, combined decongestive therapy, and that consists of an initial intensive phase, but then ongoing treatment with manual lymphatic drainage, bandaging, and they have to really look after their skin… They have no access to that here”, Ms Traynor told MI.

According to Lymphoedema Ireland, CDT is the ‘gold standard’ for lymphoedema treatment and includes manual lymphatic drainage or MLD; multi-layer, short-stretch bandaging; drainage exercises; meticulous skin and nail care; compression garments; and patient education in self-care.

There are “plenty of people trained in the HSE” to provide the appropriate treatment, according to Ms Traynor, “they are just not getting the hours”. These are mainly physiotherapists and occupational therapists, in addition to nurses.

Ms Traynor said preventing hospital admissions for lymphoedema-related cellulitis would just be one area where significant public money could be saved by introducing coordinated and resourced lymphoedema services, in addition to the hugely positive health impact. Around 15,000 people in Ireland are estimated to have lymphoedema, with about 30 per cent of cases arising due to cancer treatment.

Lymphoedema Ireland understands that a long-awaited model of care for lymphoedema and lipoedema is due to go to the HSE Leadership Team. This follows many years of advocacy by the organisation. From 2013 to 2014, a review of lymphoedema services was carried out by an internal HSE group, but its report was never made available, despite intensive lobbying.

In 2015, Lymphoedema Ireland met with the then Minister for Health Leo Varadkar requesting that a co-ordinator be put in place to develop a service. It also asked that access to compression garments be standardised and improved nationally.

In early 2016, the HSE appointed a co-ordinator and established a working group to develop a model of care. Lymphoedema Ireland is due to meet with Minister for Health Simon Harris on 14 February to request that “long overdue services are rolled out urgently” and to advise that a service for children is of “critical urgency”. Ms Traynor said they will also be requesting medical cards for people with lymphoedema, due to the chronic nature of the condition.

Lymphoedema requires a “coordinated national programme”. Ms Traynor said some cases go undiagnosed for many years, placing people at high risk of worsening outcomes, including serious infection.

Ms Traynor also emphasised the need for a comprehensive risk reduction strategy across oncology.

A model of care will require an implementation plan, timelines and appropriate resourcing, she said. It is understood the first-year cost of initiating a national co-ordinated service would be in the low millions.

Ms Traynor said there is a “huge lack of knowledge” on lymphoedema in the medical profession, although there has been an improvement in this regard. 

Meanwhile, the organisation received data through Freedom of Information legislation, outlining that 14 people applied for lymphoedema treatment through the Treatment Abroad Scheme (TAS) and 13 people were accepted in 2017. Ms Traynor said the organisation will examine this data more closely as it believes that approaches to the TAS may have been higher.

She noted that those granted treatment abroad were given instructions that they follow the prescribed treatment of the clinic abroad, upon their return. However, she said this level of service is not available in any region in Ireland. Ms Traynor said there is a lack of understanding of the nature of treatment, the risk to the patient of not having the prescribed treatment (ie, infection risk) and the ultimate cost to the HSE of not providing said treatment.

Ms Traynor added that lymphoedema can often have a significant psychological impact and this also needs to be addressed. She referred to one person who regularly attends the organisation’s open day and describes it as “the only day I feel totally normal”.

She concluded that properly coordinated and resourced lymphoedema services could be a “flagship project” of Sláintecare.

* March is Lymphoedema Awareness Month (World Lymphoedema Awareness Day occurs on 6 March).  Lymphoedema Ireland will hold an open day on Saturday, 30 March at the Aisling Hotel, Parkgate St, Dublin. Keynote speaker is Mr Alex Munnoch, Plastic Surgeon, NHS, Dundee, who will speak on ‘Surgery for Lymphoedema’. For further information, visit www.lymphireland.com.

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