The International Physiotherapy Group Cystic Fibrosis

Dr. Brenda Button, Chairperson

The International Physiotherapy Group for Cystic Fibrosis (IPG/CF) is an international working committee founded in 1986. The IPG/CF was conceived when Liliane Heidet, one of the founding members, and her associates, applied to the then Chairman of the Scientific Medical Advisory Committee (SMAC), Prof. John Mangos, to be accepted as members of SMAC which was granted in 1986 and hence the IPG/CF was born. Since that time the IPG/CF has been linked to the parent organizations of ICF(M)A and IACFA through the SMAC. Physiotherapists enjoyed a high level of professional involvement and support from the SMAC during that time. The IPG/CF is ever grateful to all the past and present members of the SMAC who have provided the IPG/CF with professional, financial and peer support over nearly two decades.

Recently, major changes have occurred to the organizational structure of the parent body of the IPG/CF. The ICF(M)A (International Cystic Fibrosis (Mucoviscidosis) Association), the IACFA (International Association of CF Adults) and the Scientific Medical Advisory Committee (SMAC), of which the IPG/CF are a part, have amalgamated to form the umbrella association of Cystic Fibrosis Worldwide (CFW). In future, its Chairperson on the executive committee of CFW will represent the IPG/CF Board.

The IPG/CF consists of a Board with a Chairperson, Vice-Chairperson, Treasurer and Secretary together with national contact persons in each member country. All countries are welcome to become a member. In order to be elected to the Board, the nominee is required to be either a current or past contact person of one of the member countries.

The objectives of the IPG/CF are:
• To encourage high standards of physiotherapy practice in the treatment of patients with Cystic Fibrosis (CF).
• To promote rigorous research in physiotherapy for patients with CF.
• To disseminate information and knowledge of physiotherapy practice in the treatment of patients with CF.
• To promote communication with and among Contact Persons and respiratory interest groups in countries throughout the world.
• To advance the knowledge and understanding of CF among both medical and related professionals and lay people.
• To represent physiotherapists with on the executive committee of CFW.

The duties for the national contact persons are:
• Where possible to fulfill the objectives of the IPC/CF within their own country.
• To disseminate, as appropriate, information from the Committee to interested persons within their own countries.
• To present, in writing, an annual report to the Committee at the Annual General Meeting of the IPG/CF, for presentation and printing in the Newsletter.
• To submit annually the recommended subscription for Contact Persons, or a donation, to the Treasurer of the Committee by 31st March of each year.
• To receive correspondence from the Committee, such as the Newsletter twice a year.
• A list of national contact persons can be requested from the IPG/CF secretary or any member of the committee. For further information, please visit the IPG/CF website.

The number of member countries has been growing steadily over the past two decades. Currently there are 51 IPG/CF member countries. The following are the member countries and their current contact persons:

Editor’s Note: A list of email addresses for all contact persons are availablefor download from: www.cfww.org/ipg-cf/

The group has developed an information booklet for physiotherapists titled “Physiotherapy in the treatment of cystic fibrosis”. The most current is the 3rd version, published in 2002. This information booklet commonly named the “Blue Book” has been written to briefly describe the different techniques available to physiotherapists treating people with CF together with a reference list of publications providing an evidence base to the different techniques. A committee has been formed to develop the 4th edition. There will be two versions, one for physiotherapists and one for people with CF and their families, carers and friends.

The IPG/CF produces a Newsletter twice a year, which is emailed to all country contact persons for dissemination to their national centres and affiliated physiotherapists. The Newsletter is also posted on the CFW website. The Newsletter contains reports from the IPG/CF Board on work in progress, reports from country contact persons, information about upcoming conferences and reports from the European and North American CF Conferences and has a list of contact details of all the current contact persons worldwide.

We have been very fortunate to have Chiron provide “The Chiron Best Care Scholarship” (CBCS). It is an educational grant with the aim of providing greater support to the CF community. The CBCS was launched in 1999 with the CF specialist nurses. It was promoted for physiotherapists for the first time in the IPG/CF Newsletter in 2001 under the direction of Sandra Gursli, IPG/CF Chairperson at the time. It is intended that this will be an annual award. The winner receives 2500 Euro to spend time at an internationally recognized CF-center approved by the IPG/CF Board. The new knowledge and experience gained will be presented at the following IPG/CF Annual General Meeting. Any physiotherapist who wishes to apply is required to provide some written details on an application form including:

• Centre of choice for study
• What they hope to achieve by the visit
• How the experience is intended to benefit patients and colleagues
• How they plan to communicate the knowledge in their home country

A scoring system has been developed to objectively assess the most appropriate candidate for the scholarship.

The following physiotherapists have been recipients of the scholarship: The inaugural winner was Angela Potter from Adelaide, Australia who studied with Jean Chevaillier at the Zeepreventorium in Belgium in 2002, followed by Sumita Gupta from New Delhi, India, in 2003 who will spend time with Brenda Button at the Alfred Hospital in Melbourne in May 2005. For personal reasons she has delayed undertaking her scholarship until this year. The winner in 2004 was Osman Coban from Turkey, who spent a week with Filip Van Ginderdeuren in Brussels, Belgium and in 2005; the winner is Maria Cecilia Rodriquez from Buenos Aires, Argentina who will be spending time with Louise Lannefors at the Lund University Hospital, Sweden.

Sumita Gupta’s aspirations in applying for the scholarship very eloquently encapsulate how Chiron, with the provision of this generous award, can really make a difference to the lives of people with CF around the world. Sumita has been treating patients with CF at a relatively new CF Center in New Delhi, India, for three years prior to her application.

In India, CF has been diagnosed only in recent years. At the time of her application the new CF center in Delhi had 120 registered patients, who attend the outpatient clinic and receive inpatient care for chest infections, malnutrition and other CF complications. Sumita says that since India is a developing country with a vast population, this small number of CF patients is just the tip of the iceberg.

Sumita is scheduled to spend a number of weeks at the Alfred Hospital in Melbourne, Australia learning new methods of physiotherapy used in CF and the way multi-disciplinary health care is organized to service this group of patients. Sumita believes that by being equipped with modern techniques of physiotherapy and experiencing how well established CF Centers operate, the morale of the patients at the Delhi CF clinic will improve and other staff working in the unit will be motivated to fulfill the aspirations of the CF community. Sumita plans to disseminate the knowledge, skills and experience she gained through direct patient care to the community and health care system and provide parental education and training for CF staff in different parts of the country.

From left: Liliane Heidet, Carien Beurskens, Kitty Löwensberg, Louise Lannefors and Sandra Gursli

We look forward to continuing our work with the CF community and anyone wanting more information about our group and what it can offer please contact us: