International Cholesteatoma Association

Cholesteatoma affects many people around the world. We are a small group of volunteers helping to unite people affected by this disease. This website has been created to support functions of the not-for-profit organisation, International Cholesteatoma Association, formed in March 2016.

My name is Marie Lewis-Smith and I am leading the efforts of the International Cholesteatoma Association. I set the group up after my ten-year-old son, Joshy, had numerous canal wall up procedures and the consultant recommended canal wall down. I couldn’t find out much information to enable me to make a decision, and so I decided that there needed to be a formal support organisation for those with cholesteatoma. The original plan was just to provide a resource for those in the UK. However it became clear that others wanted a wider, more international focus.

I have many years’ experience of implementing change in the public sector which, makes me relish challenges such as improving services for those with cholesteatoma. I currently work in the NHS, so I am able to use my knowledge to gather the health information to give us some insight into the current picture, such as the prevalence of the disease and the equipment being used in UK hospitals.

The most important features of the structure of the Association are the two advisory groups. There is a patient advisory group, whose role is to recommend the direction of the Association and outline what they want from the Association and its website. This patient advisory group is also critical in helping to implement the actions needed, and without all the volunteers, the Association would not even have got off the ground. This group currently has over 150 members from around the world.

The clinical advisory group is made up of about 30 ENT Consultants from the UK. It is hoped to expand the membership to reflect the international focus of the Association. If you would like to join please email support@ctoma.org.uk The role of this group is to ensure that all information on the website is clinically accurate, and to recommend how to improve outcomes for patients.

I have collated as many resource links as possible into the website to help people to find out as much information as they can. Although I am based in the UK, the information on the website and the support links will be useful to anyone, anywhere. I am happy to add to these, especially if there are country-specific websites which are useful.

As I am only one person, I need your help to deliver the objectives of the Association. If you would like to volunteer, or you would like to give your input into the priorities of the Association, please join the facebook group: International Cholesteatoma Association – Patient Advisory Group.

Purpose

To unite the cholesteatoma community by providing support, sharing knowledge and campaigning to improve services for people with a diagnosis of cholesteatoma.

Objectives

Information – To provide up-to-date information on cholesteatoma and a a summary of the latest international research, and to signpost to the best support organisations

Support – To connect you online and face to face, to share local information, your expert patient knowledge and your stories

Campaign – To campaign for faster diagnosis, best treatments available and an improved patient experience