Staffing levels in cystic fibrosis services

With these shifts in the needs of the CF community, and in how care is delivered, we wanted to support CF teams to explore and monitor their staffing levels, to help them identify and address staffing challenges. We also wanted to find out about any innovative ways to deliver and improve CF care that teams have implemented, so that we could share these ideas and approaches with others.

Why do we carry out a staffing survey?

Since 2019, we have asked CF centres across the UK to share an annual snapshot of what their CF MDT looks like, as well as any challenges they are experiencing, and any changes they have made to improve care delivery. We then give them bespoke feedback on their local staffing levels, alongside national average levels, to help them see how they compare, and to provide evidence of potential gaps. CF services do not have to take part in the survey, but we're pleased that the majority do.

Now in its fourth year, our staffing survey gives us an annual snapshot of CF MDTs. The latest findings published today show:

• median staff time available in paediatric centres was similar compared to adult CF centres in our sample for most staff groups
• however, there was a lot of variation in staffing levels and staff availability between individual centres, and some services reported gaps in staffing
• similar to the NHS overall, CF services are facing issues with vacancies and recruitment; a higher proportion of vacancies in CF centres for children remained unfilled for six months or longer, while centres for adults reported more overall vacancies
• only a quarter of services in the survey felt satisfied with their staffing levels.

Our survey also finds that CF teams continuously adapt and innovate to meet staffing and other challenges. Teams are committed to providing the best possible care to people with CF. And we know from our patient experience surveys that the vast majority of people with CF and parents of children with CF are highly satisfied with their care and with the staff looking after them.

However, the staffing survey shows that many CF teams remain stretched and that there may be some gaps in provision. We repeatedly found that not all people with CF have consistent access to a full MDT as recommended in the Standards of Care and NHS Service Specification. This is true for children as well as adults with CF. While CF specialist doctors, nurses, physiotherapists, and dietitians were usually available at all centres, several services in our survey said that they had no clinical psychologists or social workers with specialist CF knowledge within their teams. Sometimes this was because a specialist role was vacant at the time of the staffing survey, so the gap was likely only temporary, but other times, it was because there was no funding for a specialist psychologist or social worker within the MDT.

Why is access to specialists so important for people with CF?

Access to specialists who are familiar with the complications and challenges of CF is important to ensure people with CF have the support they need to stay physically and mentally well. This should include clinical psychologists and social workers with expertise in cystic fibrosis. Clinical teams themselves recognise the value of such roles and, where these are not available, often report this as one of their staffing challenges in our survey.

It has proven extremely difficult to recruit to the psychology position. This has an impact on patients when they experience poor mental health, and an impact on staff wellbeing when managing distressing situations with little support.

- Adult CF service

Not having social work is a disservice with a large ethnic and deprived patient cohort. Our nurses’ valued time is being used to fill this gap. We have a large number of patients and not enough staff time in each discipline.

- Paediatric CF service

CF teams without access to CF clinical psychologists or social workers may be able to refer to non-CF teams, such as community social work or the hospital’s general psychology service. However, staff from such teams often do not have a detailed understanding of cystic fibrosis, and we know from the CF community that familiarity with the condition matters.

I was recently diagnosed with low mood and anxiety... a process which has given me access to counselling... While I am incredibly grateful to my counsellor, it is difficult to need to explain my condition in order for them to understand why I feel the way I do. It all felt like a two-step process where I'd need to give the medical context before explaining my problem. I wish I had someone to speak to who already knew the small details about how CF can affect someone, so they understand before I need to say anything.

- Adult with CF

What does the Trust plan to do with the information we got from the survey?

The staffing survey provides a vital picture of what CF teams look like and what some of the key staffing challenges are. We are exploring with CF services what is behind any issues they face and offer support to address these, to ensure that everyone with CF can access the expert advice and support they need when they need it.

We will be running the staffing survey again later this year and in future, to help CF teams explore and monitor their staffing levels and challenges, and to enable us to share best practice and innovation. This will be especially important in light of evolving needs of the CF community and ongoing changes and challenges within the NHS as a whole.

We also offer a range of CF-specific support services for people with CF and their families, providing direct help with emotional and practical issues and lifting some of the worry that life with CF can bring. Our Helpline offers a listening ear for anyone affected by CF, and we provide safe spaces for the community to share experiences through our online forum, peer support and youth programme.

Our financial support services, including welfare grants and specialist benefits advice, can help relieve worry and stress around financial issues. We've also just launched a new employment programme, Work Forwards, which aims to boost confidence and tackle barriers to work, helping people affected by CF to access secure, fulfilling employment. All our support services can be accessed via our Helpline.

To find out more about our staffing survey findings, download the staffing report.

Download the full report

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.

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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