New guidelines for UK cystic fibrosis clinical psychologists published

Cystic Fibrosis Trust’s goals are to support people to be physically well, mentally well and fulfilled. In the 2024 Your Life and CF survey, 90% of respondents told us they worry about the future, with 43% saying they were worried every day, so we know how vital emotional and psychological care is to people with CF and their families. On 9 July 2024, we published new psychology guidelines to set out what should be provided by specialist CF clinical psychologists in all UK CF centres. 

Why are CF psychologists an essential part of UK CF care? 

Living with CF can be stressful and can affect emotional health. International research has shown higher rates of anxiety and depression in both those with CF and in their carers. CF psychologists can work with people on these and on many other emotional health issues including coping with different aspects of CF, self-esteem, confidence, body image and relationship issues, to mention just a few.

While CF psychologists can help with emotional wellbeing, they also have other important roles. Psychologists are experts in behaviour and can work with people with CF or their parents on managing CF treatments, living well with CF, and making lifestyle changes when needed. The CF psychologist also works closely with others in the CF team so that psychological care is an integral part of the whole CF service provided. 

Why are the new guidelines important?

Although these guidelines are new, CF psychologists have been part of CF teams in the UK for a long time – over 30 years in some centres, in fact. UK Standards of Care for CF state that all CF centres should include clinical psychologists as a core part of the multidisciplinary team (MDT), and that all those receiving CF care must have access to CF psychologists.

CF social workers and CF psychologists make up a specialist CF ‘psychosocial’ (psychological and social) team who help ensure that UK CF care is holistic. The new guidelines will help CF psychologists monitor what is needed in their services and what can be improved. 

What’s in the guidelines?

The new psychology guidelines have been written by experienced CF psychologists from the UK Psychosocial Professionals in CF Group (UKPPCF) and may be most useful to CF psychologists themselves. People with CF, parents/carers of those with CF, and CF professionals were also consulted during development.

For the wider CF community there is a short summary of the key roles and areas of work of the CF psychologist on pages 7–9 of the main guidelines. We have also created a separate, shorter document aimed at people with CF and their loved ones:

Download: Information for people with cystic fibrosis and their families/carers

This explains what a clinical psychologist is, what they do in CF services, and other psychological services that might be useful.

Another short document has also been produced for CF services:

Download: Summary information for commissioners of CF services and CF clinical directors

What if my centre doesn’t have a CF psychologist?

The new guidelines should help inform the whole CF community about what psychological care can and should be provided to all those with CF. They should also be useful in centres where new or increased CF psychology services are needed. 

If you have any questions about how to access a CF psychologist yourself, talk to your CF team. 

The Trust is currently looking at gaps in psychology staffing in UK CF centres, so we would encourage you to contact the Helpline to share any concerns you have about access to CF psychology services in your centre. 

Download: Guidelines for UK clinical psychology services in cystic fibrosis

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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