Introducing our new programme of employment support 

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Work can be important for many reasons – financial security, as part of our identity, for our mental health, our social lives, and to give us confidence. Today we're excited to launch our new ‘Work Forwards’ programme of employment support. Supported by the National Lottery, the programme will help empower people with cystic fibrosis to fulfil their career dreams and aspirations. Becky Kilgariff, Head of Information, Support and Programmes at the Trust, explains more.

Work Forwards logoOn our Helpline, we often hear from people who are looking for support around employment – queries about balancing work and health, explaining CF to employers and negotiating reasonable adjustments are common. In 2019, research we conducted into lived experiences of cystic fibrosis identified two things: adults felt that CF affected their employment prospects and needed and wanted more support with this, and some young people were worried that their CF would limit their future careers.  

Since then, the CF community has had to deal with the effects of the pandemic on different aspects of life, including work. Shielding kept people with CF away from the workplace and highlighted the importance of employers making adjustments to support employees with health conditions. At the same time, the roll out of modulator therapies such as Kaftrio has led to dramatic health improvements for some with CF, opening up new opportunities for work and careers. This is really exciting and very welcome but brings new challenges – some people have told us it can be hard to explain past gaps in education and employment for example. For many people with CF, there is an ongoing need to balance work and CF health; this can also apply to parents of children with CF as they try to balance their caring responsibilities with work.  

It’s now more important than ever that people affected by cystic fibrosis can access secure, fulfilling employment, whatever that means to you personally, so we’re really excited to tell you about plans for Work Forwards, a brand-new programme of employment support.  

Work Forwards will provide people with CF tailored, one-to-one support from a skilled advisor to help identify your career goals and any obstacles you may be facing, putting in place practical steps to move towards overcoming these and work towards fulfilling employment. This support will also be available to parents and carers of people with CF who want support to find the right balance between employment and caring responsibilities.

We’ll also be here to empower you with knowledge of your employment rights – if you need support to change the type or amount of work you do to fit around your CF health or need to negotiate reasonable adjustments to support your CF. We’ll hold online group sessions and workshops, bringing people with CF together to support each other, share experiences of work and CF, and pick up on some of the key questions we hear on our Helpline, like how and when to talk to your employer about CF. We hope as many of these sessions as possible can be delivered by people with CF themselves.  

Work Forwards will provide people with CF tailored, one to one support from a skilled advisor to help identify your career goals and any obstacles you may be facing, and put in place practical steps to move towards overcoming these and work towards fulfilling employment.


We’re also really excited that, through Work Forwards and supported by ideas from our Youth Advisory Group, we’ll be able to share the stories of people with CF in a wide range of jobs.  We look forward to involving as many people with CF as possible in this – if you have a story you’d like to share about your job or experiences of employment, please do get in touch with us at [email protected].  

Work Forwards officially launches today – we can’t wait to work with the community to support as many people as possible on their employment journeys. As we all recover from the pandemic together and find our way through the changing landscape of cystic fibrosis, with the backdrop of the cost-of-living crisis, we’re determined that people with CF should not face barriers to secure and fulfilling employment.

* UCL Great Ormond Street Institute of Child Health and Great Ormond Street Hospital. Experiences of Living with Cystic Fibrosis. 2019. 

Find out more about Work Forwards

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF. 

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