Cystic Fibrosis Trust Advocacy And User Involvement

Project Chief Executive Officer: Rosie Barnes E-mail: rbarnes@cftrust.org.uk

Nov, 2003.Advocacy service [online]. Cystic Fibrosis Trust, UK. Available from http://www.cysticfibrosismedicine.com

Project Manager: Sam Naylor Tel: 01606 871335 E-mail: snaylor@cftrust.org.uk

Cystic Fibrosis Trust, UK: Tel: 020 84647211 Web Site: www.cftrust.org.uk

Introduction

This service was initially introduced by the Cystic Fibrosis Trust as a pilot project through funding from the Department of Health in the Autumn of 1996. It involved the Cystic Fibrosis Trust employing people who have CF as paid advocates within the centres they attend for their treatment and care. At the end of the three-year pilot period, a successful evaluation led to the Cystic Fibrosis Trust incorporating the work into its mainstream activities.

The pilot project was based on the premise that "people with chronic illnesses are their own best advocates"; that is, they are the best people to speak up for what they need and want. Patients are no longer passive recipients of medical care but active participators in shaping the medical services they use. People with CF are thankfully, an aging population, and CF service providers need to recognize and respect that we have a valid voice.

Aims

The primary purpose of the Advocacy Project therefore, is to give people with CF an active voice in the planning, delivery and review of the CF service they use. As advocates, our role is to seek the views, wishes and concerns of others with CF and to represent these to clinicians, hospital managers and health service commissioners. The role is particularly important at times of change or development within the service.

Achievements

•Some of the advocates' achievements to date include:

•Providing user input into the planning of CF services at regional level

•Working with clinicians and campaigning to release funds to increase the provision of inpatient facilities

•Collaborating with CF teams and contributing the patient perspective to the development of their adult services

•Making presentations to multidisciplinary teams about the role of advocate and the impact of living with CF

•Using the media to promote awareness of CF and the issues surrounding living with it

User Involvement

As advocates, we welcome contact with other CF service users through written, telephone and increasingly, e-mail communications. Due to the risks of cross infection, we are more creative in our methods of contact as face to face meetings are not advisable. This has led to the CF Trust investing in teleconferencing and videoconferencing facilities. The Internet is a welcome addition to the Advocacy Project and the CFT website www.cftrust.org.uk is firmly established. The website contains a wealth of information and it’s notice boards provide the facility for any member of the CF community to chat online.

The work of each advocate now extends beyond their own centre to cover their NHS region. We have, therefore, been making links with other centres and hospitals where a CF service is provided to both children and adults. Working at a regional level also involves being members of CF Service Review Groups alongside Health Service Commissioners, hospital managers and senior clinicians. Feedback from service users is acquired through postal surveys.

With the implementation of the UK Government's NHS Plan the experience of each individual patient is now at the heart of a 10-year framework designed to modernise the health service and therefore the CF Advocacy Project is developing at a crucial and exciting time. Having secured a large grant from the National Lotteries Charity Board, the Cystic Fibrosis Trust has been able to extend the project and there are now fourteen advocates operating throughout the United Kingdom.

If you would like more information or have a burning issue, you can contact your nearest advocate either by telephone or e-mail:

0151 2882207