We won't stop: Reflecting on 60 years of Cystic Fibrosis Trust

The Information, Support and Programmes team at the Trust is responsible for making sure that the services and resources we provide for the CF community are continually evolving to meet your needs, and that we’re helping you in the way you need us to. We do this by listening to those who contact us directly, as well as the feedback we get through our involvement team, and what we hear from CF professionals. It’s our job to keep scanning the horizon, and developing our support and information to make sure it has the biggest possible impact.

Here for you 

Over the past few years, this has led to the development of new information and support. We launched our first ever employment support programme, Work Forwards, in 2023, supported by the National Lottery Community Fund. This has enabled us to provide tailored support on all aspects of work and employment and there’s more to come – over the year ahead we’ll be sharing the stories of people with CF in a wide range of jobs and careers and building our information resources for the CF community and for employers. 

A major change we’ve seen over the past few years has been a dramatic increase in the number of people with CF who are becoming parents. In response to this, we’ve recently piloted our first scheme to support new parents who have CF. This was a local initiative, based in Glasgow and operating in partnership with national parenting charity Home-Start UK, and we are now looking at how we can roll this out further.

We’ve also relaunched our online community forum when we heard from people affected by CF that you needed a safe, anonymised online space to share experiences and support each other. One of the most heartwarming parts of this new online community has been seeing new parents of babies with CF being supported by older adults with CF. 

Some with CF have seen dramatic improvements in health; others are still waiting for the game changing treatments they need and we are committed to being here for everyone. For those who don’t benefit from new treatments, we’re focused on making sure you have all you need to stay as well as possible while research continues. This group within the CF community is sometimes known as ‘the 10%’ – we don’t always use this phrase because it isn’t completely accurate and sometimes we don’t want to ‘put people in a box’ – but this is a group of people with distinct needs for support, and it’s important to recognise that. 

There is work going on by key researchers and clinicians to understand who is in this group and to use Registry data to ensure we know how to target support.

Breaking down barriers 

When we think about making sure everyone has a bright future with CF, we have to then turn to thinking about what the barriers to this might be, and be very clear that some people face more barriers than others. By identifying these barriers, we can start to address them, helping us move towards equity.

People from ethnic minority backgrounds face additional barriers in accessing services and care that has not been designed around their needs, and in CF, are also less likely than people from white backgrounds to be genetically eligible for modulator treatments like Kaftrio. We’ve been looking at how we address this in our information and support – by increasing representation in our imagery and the stories we include in our resources, introducing translation services to our Helpline, and building our understanding of the needs of diverse communities. 

In recent years, we’ve also been focusing specific grant support on low income households through the winter months to protect CF health. All of these actions are small steps, but are about recognising that it is our job as the national CF charity to be relevant, accessible and helpful for all. 

As CF changes and we want everyone to have the same opportunity to be well, we have to think about all the things outside of just ‘the medical stuff’ which can affect how well someone can manage life with CF, and from what we’re learning, neurodiversity is a key consideration in this. 

Through our grants programme, we’ve often heard from people in the community, particularly parents of children with CF, highlighting the significant challenges that can come with a combination of – for example, autism and CF. This can include extra considerations around hospital stays and procedures, sensory difficulties around types of physiotherapy, or complex issues with food. 

Just as everyone with CF is different, everyone who is neurodivergent is different and faces their own set of challenges, but it is clear from the people who’ve shared their experiences with us that managing CF and neurodiversity can be hard, and people often feel alone. A better understanding of neurodiversity and CF is likely to mean that we need to be able to change and adapt the way we do things to make sure there are no barriers to accessing our support, and it’s something many CF professionals are also very interested in considering in terms of how CF care is delivered. 

At our study day for CF professionals earlier this year, we held a discussion workshop bringing together good practice and knowledge from CF teams around the UK, and also including the voices of people in the CF community who are neurodivergent, or who care for someone who is neurodivergent.

Support through tough times 

Over the past year, the CF community has been through some difficult times: the uncertainty that came through NICE’s appraisal of modulator therapies, and the issues with the supply of pancreatic enzyme replacement therapy (such as Creon) to name just two. Our role in the Information and Support team is to keep up to date with these issues, to prepare for the questions we think the CF community will need answers to, and to work with our colleagues across the organisation to find the answers where possible. 

We also feed in the information coming from the frontline – calls, emails and messages to our Helpline are often the first place we hear of an issue that is affecting people with CF. Alongside preparing for the support you might need from us in the future, and responding to key issues that often come up unexpectedly, we also continue to deliver all our core services for people affected by cystic fibrosis – our Helpline, welfare grants, benefits advice, information resources, peer support and youth programme. 

Overall, from our data and what we’re hearing, it’s clear that the CF community needs us more than ever – you need us to be there when you need us, in the right way at the right time, so that you can get on and live your life. Ultimately that’s what we want for everyone with CF – the ability to live the life you want. We want you to be able to do that without barriers or challenges – but if you do hit bumps in the road, we want you to know we’re here to support you.

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.

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.

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