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Cystic Fibrosis Trust launches new employment programme to help people with cystic fibrosis fulfil their career aspirations
The landscape of cystic fibrosis is changing dramatically with new medications giving many people the prospect of longer and healthier lives. But after years of poor health and hospital treatment, many people with CF have already seen the damaging impact to their education or career of living with an invisible, long term and life limiting illness. Through a range of online one-to-one coaching and advice sessions, the new programme will help people with cystic fibrosis break down these barriers and fulfil their career goals.
Our new Work Forwards project will support people with CF to access the skills and guidance they need to help them set and realise their career aspirations. Having a life-long and life-limiting condition imposes an additional financial burden and this programme will help people with CF to build a sustainable financial future.
David Ramsden, Chief Executive of Cystic Fibrosis Trust
The CF community will be able to access one to one advice from our employment experts, join group sessions to learn key employability skills, and share their experiences of work and CF to inspire and support each other. Our first event will be running on 30th March.
We are so grateful to the National Lottery for supporting this exciting new programme. We’re excited to have the opportunity to make sure that everyone affected by CF has the skills and support they need to have a fulfilling and exciting career and be financially sustainable. The Work Forwards programme will provide much-needed support and advice as well as opportunities to share experiences to inspire others.
Becky Kilgariff, Head of Information, Support and Programmes
I used to be a primary school teacher, but had to stop due to my CF. Now I work part-time in retail, which I enjoy, and it makes it easier to manage my health. I sometimes get very frustrated when I think of how difficult it is financially due to CF. After finishing university, I hoped to be in work full-time as a secondary school teacher, on a decent, stable salary that would go up over time. Without CF, I would have been teaching full-time for the past decade; I’d have been able to save and have a lot more financial independence. I managed to teach part-time for two and a half years before having to stop. Now I’m on around £11 per hour, on a zero-hour contract with no sick or holiday pay. I rely on Universal Credit, but if you work more, you get money deducted from the next month’s benefit and you’re still taxed on the original amount. This means I effectively work for under minimum wage once Universal Credit has been deducted, which is very hard to accept.
An anonymous person with CF
Being able to earn a living whilst simultaneously managing the hidden disease that is Cystic Fibrosis has been incredibly challenging. In the work place, the biggest obstacle I have faced was overcoming employer's bias against and a lack of compassion for health. For so long I had to endure prioritising work over my health, which had a tremendous negative impact on my quality of life. My work ethic and capability were never questioned, but enduring comments like “You have another hospital appointment?!” Or “You like fine” made me feel ignored and uncomfortable in the workplace. Unfortunately when I was job hunting for several months after the company I worked for collapsed, I found it hard to get an interview because my ask for reasonable adjustments due to my health was not in the culture of the recruiting organisations - despite me having the skillsets for the vacancy. In the age of diversity and inclusion that we are living in today, it is important for employers to recognise that capability to do a role must not be restricted to the healthy - that those with hidden illness like CF can contribute positively to the business.
Shad, a man with CF