ILF conference 2023
The ILF sponsored 2 members from each framework to attend the conference. Meadbh Mac Sweeney and Norah Kyne were delighted to avail of these places. Mary Hickey was also partly supported through use of a prize awarded to Meadbh for achieving best scientific poster at the ILF conference 2022 in Copenhagen
Monday 12th June : a day dedicated to the national frameworks with representation from Belgium, Bulgaria, Canada, Denmark, France, Ireland, Italy, The Netherlands, Saudi Arabia, Switzerland, Turkey, USA, and Wales. There was also representation from Uganda, which is beginning to develop services for individuals with lymphoedema in Uganda.
Prof Christine Moffatt gave the welcoming address which was followed by members from each framework giving a short introduction on themselves and a brief overview of what their framework was currently working on.
The ILF board member then introduced and discussed the proposed change of structure for the ILF with the aim to involve the frameworks in a more meaningful way, improve communication and plan for succession and the future of the ILF. The proposal is that each framework will have a lead person as the ILF link and that one of these individuals will be a member of the ILF board. It hasn’t been confirmed how this person will be decided but it’s likely that it may be through application rather than a voting system. Discussion about the proposal was encouraged and in general the idea was supported. There will be more information on this at a later date. See photo slide attached to demonstrate same .
In the afternoon, members were invited to discuss ILF ongoing projects which were divided into groups : Limprint , Outcome Measures, ILF Childrens Projects,, Genital Lymphoedema . Norah attended Limprint and Outcomes, Meadbh attended Childrens and Genital.
Limprint : Limprint study has been opened to newer frameworks to participate if they wish, eg Switzerland, Bulgaria, Saudi Arabia. Norah gave feedback on how Ireland had managed this project.
Outcome Measures : there is ongoing discussion on which outcome measures are most widely and/or best used. The findings obtained through the recent research is currently being written up and will be published later this year.
Childrens Group :
- Rhian Noble of the Welsh Group presented the outcome of the HCP survey related to managing children & young people with lymphoedema which was contributed to be the NLFI by disseminating to therapist groups in Ireland.
Top ten topics for education outlined:
|Age appropriate treatment||Process of differential diagnosis|
|Adapting compression for age||Treating L-related infection in children|
|Reducing lymph-related infections in children||How to improve family /carer efficacy|
|Exercise / activity advice||Dealing with Le when cancer exists|
|Child specific garment fitting and review||Recognising stages of self-efficacy in CYP|
2. ILF Childrens Projects
Ongoing collaboration and discussion with Brittany Williams of Brylan’s Feat Foundation and her physio friend and business partner Betty Westbrook. Amy Rivera (USA) Isabelle Querere (ILF France) , Elodie Stasi ( ILF Italy) , Pernille Henriksen (ILF Denmark) , Susie Murray & Christine Moffatt (ILF Board ) Chantal Lapointe( French Canada ) & I ( ILF Ireland) are working on a few ILF Children related projects: expanding the website to include interactive learning , a newsletter , a children’s book and discussion re the children’s camps uniting all experiences. It is possible that NLFI may propose to host an International Camp in the next 2-3years.
Genital Oedema :
Rhian Noble facilitated on behalf of the Welsh group who are publishing a book on managing genital lymphoedema and were looking for suggestions for names for the foreword and offering the possibility to contribute if anyone wished. It will be a more management guidance book than the consensus document that was published at the last ILF conference on Genital oedema
The framework day ended with an invite to those who participated in the day, to dinner in the lovely Trent building on the university grounds, where Robin Hood awaited to regale us with tales from Nottingham and Sherwood Forest. Unfortunately, the planned walk through the beautiful grounds was cancelled due to the thunder and lightning which occurred after the very hot day. (Photos attached )
Each national framework also got the opportunity to be recorded in a professional studio, to talk about their framework and the work being done by the framework in that specific country.
The remainder of the conference was a busy three days with three streams of presentations running in parallel, with recent research in lymphoedema, compression and lipoedema all being discussed. There was also a significant turnout from industry with an excellent display of products and technology to aide in the diagnosis and management of oedema. There were also excellent practical demonstration stations covering compression options, specific genital oedema compression options and MLD/scar massage instruction, which added an interesting dimension to the industry display.
Meadbh, Mary and Norah had the opportunity to meet with Kay Morris and Dr Mary Paula Colgan at various times during the conference. Kay gave an excellent presentation of the 2022 All Ireland Guidelines for the Diagnosis , assessment and management of lymphoedema.