Understanding patient experiences is key to delivering meaningful CF care

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As we publish the findings from our patient-reported experience surveys, Jana Witt, Clinical Quality Improvement Manager at the Trust, explores the key insights 

We are delighted to share the first findings from our patient-reported experience measures, offering unique insights into experiences of CF care across the UK both before and during the COVID-19 pandemic. Understanding patient experiences is important to make sure that care is high quality, person-centred, and equitable. Our findings highlight existing good practice and identify challenges, as well as areas for targeted improvement efforts. 

We first started our experience survey in late 2019, working with paediatric CF centres to ask children and young people with CF, or their parents, about their experiences of care in the year before. Our second survey started in late 2020 and focused on experiences of adult CF care since the first lockdown in March 2020. Together, these surveys help us to understand experiences of care just before and during the COVID-19 pandemic. 

Overall, we found that the CF community were highly satisfied with the care they received. Many respondents praised their CF teams and rated members of their MDT they had seen as good or excellent. This shows that CF teams across the UK are already delivering high quality care in many cases, innovating and adapting to address challenges and meet the needs of people with CF.  

They take care of you personally and are genuinely interested in what we have to say and how CF impacts our lives, especially during COVID. I feel as if they are not just my healthcare providers, they are also good friends.

- adult survey respondent

Virtual is here to stay 

Even before the COVID-19 pandemic, we were already seeing a rise in the use of remote monitoring and virtual consultation formats, such as phone and video appointments. In fact, the Trust was already supporting a number of research projects, such as SmartCareCF, CLIMB-CF and most recently Project Breathe, which were looking at whether using remote monitoring of health and symptoms could reduce the burden of care for people with CF. Unsurprisingly, in 2020 and 2021, many more CF centres moved aspects of care out of the hospital, for example offering virtual clinics, online exercise classes and home monitoring.  

Generally, experiences of virtual clinics were positive, with 2 in 3 respondents in our adult survey saying that they either preferred virtual formats or would want to be offered a combination of hospital and virtual appointments in future. Online physio support and exercise classes were also well received during the COVID-19 pandemic. 

The NHS Long-Term Plan includes an ambition to drive forward digital transformation and the pandemic has resulted in rapid implementation of digital solutions. As restrictions ease, it will be important to allow people with CF to have a say in which format works best for them. Based on feedback shared by survey respondents who had virtual clinics during the pandemic, it is also critical that technology used for such clinics is reliable enough to allow effective conversations between patients and clinical teams. 

Urgent need for more mental health and social worker support 

While our surveys found that many respondents had good experiences, we also identified areas for improvement. For example, support at diagnosis or when staying in hospital were rated highly in the surveys, but support with education, employment and benefits less so.  

The Standards of Care recommend that “all patients must have access to clinical psychology and social work services”. However, one consistent finding from our experience surveys is that sometimes people struggle to access this type of support when they need it. This was particularly evident in responses from our paediatric survey, where nearly half of respondents (47%) had been unable to see a social worker when they had needed one. For adults, this was 11%. Access to psychologists was better in both surveys, although 12% of paediatric and 4% of adult respondents said they had not been able to see a psychologist when they felt they had needed one.  

We also know from our staffing tool, which looks at staffing levels in CF services, that several centres report difficulties recruiting specialist psychosocial staff, with a number of long-term vacancies. A lack of access to mental health and social worker support is concerning because this kind of support is critical to address emerging complex needs and safely manage issues such as inequality, vulnerability and crisis.  

These findings are invaluable to help shape our policy work. We are now planning a project that will explore underlying issues with recruitment and retention of psychology and social work professionals in CF services. Ultimately, we hope to campaign to ensure all people with CF have the support they need, when they need it. 

We won’t stop 

While every person’s experience is different, our work in Quality Improvement seeks to reduce unnecessary variation in experiences of care. Consistent delivery of person-centred, high-quality care is vital to achieve longer, healthier lives for everyone with cystic fibrosis. 

That is why we won’t stop asking about patient experiences and sharing the insights we gather with CF centres to support ongoing improvement work, guided by feedback from those who use the service. Every centre that takes part receives tailored feedback, so they can see what people with CF under their care thought they already do well, and where improvements may be needed. Ongoing consideration of patient needs and experiences will likely become even more important with recent and expected seismic shifts in the health and therapeutic options for people with CF and the digitalisation of the NHS.  

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

Read the full Paediatric Services PREMs Report

Read the full Adult Services PREMs Report

Our Quality Improvement Working Group, made up of people with CF, family members and health professionals, helps us to deliver this work.

Find out more and get involved

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.

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