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Finding new ways to connect and support people with CF – learning from our youth work to support adults

As we develop new virtual activities and ways to bring the CF community together, we are asking adults with cystic fibrosis (CF) to tell us what they want and need. Your views can help shape a new series of online events which we hope to pilot in the coming months, mirroring work we have been doing recently for young people with cystic fibrosis. Jacqueline Ali, Head of Information, Support and Programmes, talks about the background to this and explains how to get involved. 

As well as providing day-to-day support for those affected by CF, the aim of our information and support service is to identify barriers, challenges and life stages where people with CF and their families may need our support more than at other times. During these times of need we try to provide holistic support, both practical and emotional, immediately and longer-term. We regularly carry out research to deepen our understanding of the needs of the CF community, and this feedback is vital in shaping our services.

In the last year, we provided financial support, advice and information to hundreds of people with CF through our welfare grants, benefits advice scheme and Helpline. We continued to develop our information library of over 100 CF resources for the CF and clinical community, on topics such as body image, nutrition and clinical trials, to complement our existing resources on fertility, lung transplant and many more.

We also developed our youth programme, building and maintaining engagement with children and young adults with CF (aged 10 to 25). Much of our youth support is informed by research and tailored to suit their specific age and needs; however, our offering for adults has been largely focused around practical support. During the last few months, where we’ve promoted our youth programme events, many over 25s with CF have let us know they’d be interested in taking part in similar events, and we have listened to this very clear feedback and are taking this on board.

How we shape our support

Historically, we have found it more difficult to reach teenagers and younger adults and engage them in our support offering, than we have older adults and parents of children with cystic fibrosis. For example, teenagers with CF do not contact our helpline, and until very recently, did not engage with us at all on social media. We know that adolescence is a time of numerous, competing needs and challenges, during which teenagers can struggle more with CF and the limitations it places on their lives. In medical terms, adolescence can also be a dangerous period – data from the UK CF Registry shows that lung function falls in the later teenage years. It is these considerations and challenges that led us to develop a specific programme for children and young adults (aged from 10 to 25) to build and maintain engagement with this group.

Our youth programme, and other work, has been informed by research we’ve conducted with children with CF, and parents and siblings, which told us that children (and adults) are interested in peer support, but had concerns about hearing from other people in poor health. The social events we run for children with CF enable them to chat safely with each other online while engaging in fun activities, such as movie nights, as well as more structured workshops, such as the recent creative writing sessions. This means peer support is delivered informally, which evidence suggests is more effective, and CF is not the main focus.

However, it is clear that adults with CF are also keen to take part in some of the fun, social events we’ve been offering for under 25s these past few weeks. Recent months have for many, shone a light on how isolating life with CF can be. The coronavirus (COVID-19) pandemic and recent shielding period led us to increase the number of events we were offering to young people, who were feeling particularly isolated kept apart from their friends. Adults with CF have also been clear that they need us to develop ways to come together and support each other, through useful and fun online events.

Current support and involvement for over 25s

While our youth programme is targeted at a particular age range and uses funding received for that particular group, adults with CF are and always have been at the heart of our core activities. Our benefits advice service, in particular, provides direct support to adults with CF to navigate the benefits system, with a particular focus on Personal Independence Payment (PIP).

We have an active community involvement group, which includes over 30 adult members, who regularly discuss and contribute to research projects and clinical trials proposals, further increasing engagement between our community, the Trust and clinical/research teams.

However, our offering for adults has been largely focused around practical support and information resources – financial support, information provision, welfare advice, along with our core work to campaign for access to the best possible treatments, improve standards of hospital care and fund research into improved treatments that could benefit all. We know we need to go further in providing opportunities for adults with CF to get together online.

Piloting online social events for adults with CF

We are currently planning some informal social events for adults, which we hope to pilot shortly. If successful, we will include these in our longer-term planning. In the short term, as part of our new series of CF LIVE events, we’re holding a dedicated event for adults with CF on Wednesday 23 September. This event will provide information and advice about employment rights, income maximisation and benefits, which we know have been particularly relevant for many during the shielding period. You can register here.

Whatever we do, we know we need to be flexible to respond to changing needs; the COVID-19 pandemic has seen us rapidly adapt our support offering to meet some of the acute needs faced by people with CF, particularly financial needs. We continue to respond to this ever-changing situation as best we can, providing regular updates to the COVID-19 information on our website and ongoing support via our helpline.

However, there are also bigger changes on the horizon, with the imminent availability of a life-changing treatment for 90% of the CF population. This is exciting, but also presents new challenges as people with CF, their families, carers and the Trust navigate this unknown territory. And of course, we cannot, and will not, leave behind those who will not be eligible for these new medicines, who will be at the forefront of our efforts as we enter this new era together.

The importance of your voice

There is much more we want to do, and we need your input – we cannot develop events for adults with CF without hearing from adults with CF about what they want and need. So whether it’s book clubs, movie nights, practical information and support or something completely different, we’d love to hear from you via enquiries@cysticfibrosis.org.uk or on social media.

We look forward to seeing you (online) very soon.

If you would like to share your experiences of living with CF and get more involved in our work, please register for our Involvement Group.