Crucial insights from our patient experience survey of children’s CF care

While everyone’s experiences are personal and different, the survey helps us highlight existing good practices and things people with CF appreciate about their care. It also provides useful insights into aspects of care that could be improved and people’s preferences of how care should be delivered in the future.

Between November 2022 and March 2023, we worked with paediatric CF teams across the UK to ask children with CF and their families about their care experiences. Excitingly, we received over 800 survey responses, which means nearly one in five families in paediatric CF care shared their experiences. Often, the surveys were completed by parents on behalf of their children, though some were also completed by children or young people with CF themselves.

One of our key findings is that most children with CF and their families are very happy with the care they receive. Many respondents praised their CF teams and rated most aspects of their care as excellent. This tallies with findings from our first paediatric experience survey back in 2019 and clearly shows that children’s CF clinical teams have continued to provide high-quality CF care despite the pandemic, staffing issues and other challenges.

Hospital appointments preferred by many families

Given the significant changes in how care is delivered, including the rise in use of technologies for remote monitoring and virtual care, the survey asked how children with CF and their families would like to be seen in future. Nearly half of respondents said they preferred in-person hospital appointments, with a further 40% saying they would prefer a combination of virtual and hospital appointments.

Many respondents who wanted to be seen in hospital said they gained reassurance from a physical examination by their CF team. Several also said that younger children were more engaged during face-to-face appointments and that it was easier to build and maintain relationships with CF staff when they saw them in person. Similarly, those who preferred a combination of appointment formats valued the benefits of occasional in-person appointments but also mentioned the advantages of virtual clinics, such as reduced travel and less disruption to routines, including school.

These findings suggest that paediatric CF teams need the capacity to continue delivering hospital as well as virtual clinics and that families’ preferences should be considered when arranging appointments, as one size does not fit all.

The survey results also highlight a few challenges and areas for improvement with regard to equity of access to some staff and services.

Access to CF specialist psychology, pharmacy, and social work services

Our original survey of paediatric CF care in 2019 found that nearly half of respondents (47%) who had needed a CF social worker had been unable to see one, as no one was available. For CF clinical psychologists, this figure was 12%. Encouragingly, the proportion of respondents saying that they had been unable to access these specialists was lower in the most recent survey, although some still reported issues. Of those who needed support, 28.3% said they were unable to see a CF social worker, and 10.5% said they were unable to see a CF psychologist. There were also some survey responses indicating a lack of consistent access to CF pharmacists.

“Our clinical psychologist retired […], and we have had no replacement available. The team could only offer a referral to the psychology team (for which there was a 4-month waiting timeline). I eventually sought support privately. It was distressing and upsetting for all parties involved.”

- survey respondent

“With minimal social work support, I am having lots of issues getting school to allow [my child] on school trips and getting into issues with attendance…”

- survey respondent

“There have been a few occasions where we’ve discussed meds, and it would have been handy to talk to a specialist CF pharmacist.”

- survey respondent

It is concerning that some children with CF and their families continue to have issues accessing certain specialists when they need them. The reasons for this can vary, including limited availability of existing staff, temporary vacancies or no roles for such specialists in CF multidisciplinary teams (MDTs). We know that some services struggle to recruit to open positions within their CF MDTs, particularly for clinical psychology, as evidenced in our CF service resourcing report. We also know that there are some CF MDTs that don’t have embedded social worker, pharmacy or psychology roles and, therefore, have to refer their patients to general hospital or community services.

“There simply aren’t enough CF specialist social workers available, particularly in paediatric care. It’s such a shame, because we can help with so many issues, including adjustment to CF, general functioning, housing, school, lifestyle, family issues, finances, referrals to local community services, and more. We know that difficulties encountered in childhood can impact health and wellbeing for the rest of someone’s life. Having access to CF specific social work support can prevent, manage and enable children and families to overcome a whole host of practical and emotional issues that could become more complex and impactful in adulthood.”

- Marie Donnelly, CF social worker in paediatrics

Having psychology, pharmacy and social work embedded in CF MDTs supports the delivery of holistic care and is particularly important given the recent introduction of modulators, as well as the increasing cost of living and complexities of managing CF. Several of the key recommendations from our patient experience survey, therefore, focus on equitable access to clinical psychologists, social workers and pharmacists, including at annual review. These sit alongside other recommendations generated from the survey data, on aspects of CF care ranging from communication to infection control.

Access to specialised medications

For the first time, our survey also explored experiences with specialised medications at home, including modulators. While most families in the survey had positive experiences with specialised medications, some said they occasionally faced issues getting these. For example, several respondents reported nearly running out of medication due to delayed home deliveries, while others said they faced long wait times to collect treatments from hospital or community pharmacies.

Our Policy and Public Affairs team are collecting more information to explore this and have submitted evidence to a House of Lords inquiry into homecare medicines services. The inquiry is ongoing, and the team are also engaging with NHS England to ensure that the issues experienced by people living with CF are understood.

What happens next?

It’s incredibly important to look at real-life experiences of CF care to understand what works well and highlight areas for improvement. While CF teams are doing a fantastic job overall, some experiences and preferences vary. Additionally, a few issues were raised in the survey that could be addressed through quality improvement.

One of the goals of Cystic Fibrosis Trust’s Quality Improvement team, which manages the patient experience surveys, is to reduce unnecessary variation in experiences of care. We have provided each CF team that took part in the survey with a bespoke summary of their responses and are offering ongoing support to help them review their findings and take action locally where this may be needed.

We will re-run the survey again in a few years to help us monitor experiences, needs and preferences over time and to provide regular feedback to CF teams to help them reflect on the care they provide and the impact of any changes they made in response to these latest results. We will also continue to publish our findings more widely to provide a record of how experiences of CF care and patient preferences change with time and to inform future service planning.

We are very grateful to all the families who share their experiences and to the CF centres that support us with this work, now and in future.

Read the full Paediatric Services PREMs Report

Cystic Fibrosis Trust offers a range of CF-specific support services for children with CF and their families to help with practical and emotional issues. Our Helpline is there 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, and our Work Forwards programme aims to boost confidence and tackle barriers to work.