Improving mental health and wellbeing

kareem and yasmin

Improving mental health and wellbeing

Find out more about our campaign to improve our community’s mental health

We're uniting so everyone with CF can manage the emotional and psychological pressures of cystic fibrosis.

We want our community to have a better understanding of the mental health challenges CF might bring, access to the best support possible, and a reduced burden on people with CF and their carers.

We’re working hard to make sure the CF community is supported with their mental health and wellbeing – so everyone with CF can live a life without limits.

  • Why are we campaigning to address mental health and wellbeing issues in the CF community now?

    Lots of things over the past couple of years have radically changed the health and social conditions of our community, like COVID-19 and the cost of living crisis.

    Since Kaftrio, there’s been an increased need for psychologist support as people come to terms with a different, longer, and more uncertain future to the one they thought they may have. Some of those taking these treatments also report increased mental health issues.

    But our patient experience surveys and staffing reports show that many people with CF aren’t able to access adequate support.

  • What have we done so far?

    Our latest patient-reported experience measures (PREMs) survey and staffing report highlighted worrying trends in the level of professional support available in CF centres. We believe that access to CF psychologists and social workers is the best way to address and prevent mental health and wellbeing issues in our community.

    Through parliamentary questions, we’ve demanded the governments of all four nations explain:

    • what they’re doing to make sure support is available to people with CF and their carers
    • how they will make sure there is support in the future
    • what they’ve done to address workforce issues

    We’ve also held discussions with parliamentarians, who have worked with us to press governments on these issues.

  • What are we asking for across all nations?

    We’re demanding that everyone with CF has access to a CF social worker and clinical psychologist when they need it, not just at annual review.

    We’re calling on the UK Government to ensure that everyone with CF has access to a CF social worker and clinical psychologist. Our reports show that many CF centres don’t have these roles in their multidisciplinary team (MDT), and when they do, they often don’t have enough time to meet patient requirements.

    • 47% of paediatric respondents and 11% of adults had been unable to see a social worker when they had needed one
    • Only 31% of responding paediatric centres had a social worker in 2021, in adult centres this went up to just 57%
    • Across adults and pediatric centres  20%reported that they didn’t have a clinical psychologist.
    • The median staff time available for clinical psychologists was 0.3 Whole Time Equivalants per 75 patients. Our standards of care recommend 0.5 WTE per 75 patients. For social workers, the median was between 0.0 and 0.1.

    This is a systemic issue that must be tackled.

  • What are we asking for in England?

    We demand that the Government puts a workforce strategy in place.

    Given the likely increase in demand for both roles in the future, and the worrying trend in the decline of their provision over recent years, a workforce strategy is necessary to address this issue.

    We demand that the Government makes the provision of CF social workers and clinical psychologists in MDTs statutory, with measures in place to quickly address workforce issues if services can’t meet standards.

    Psychological and social support is an important and mandatory aspect of CF care. Despite many MDTs falling short of the minimum standard, the Government has not responded.

  • What are we asking for in Scotland?

    The Trust’s standards of care are informed by the Trust Clinical Advisory Group, directors of all CF centres in the UK, and Allied Health Professional groups. It recommends that CF centres include clinical psychologists and social workers as core members of MDTs.

    We ask that CF patients in Scotland be entitled to clinical psychologist and social worker support as part of their core MDT, not just ad hoc provision when needed.

    Services in Scotland set their own standards of care. They currently recommend access to psychologists only where required, and social workers are often omitted as a requirement of services.

    We ask that CF centres developing their own service-level agreements or specifications include reference to the Trust’s standards of care.

    The Trust’s standards of care seek to ensure all patients have equal access to the highest level of multidisciplinary specialist care. We want to make sure the same standard of care is upheld in Scottish CF services as in the rest of the UK.

  • What are we asking for in Wales and Northern Ireland?

    We demand that governments address the lack of clinical psychologist and social worker provision in CF and other specialised services.

    Last year only 9% of paediatric CF patients in Wales had access to a clinical psychologist, and one clinical psychologist post in the All-Wales Adult CF Centre went unfilled for 11 months, despite investment in recruiting. Recruitment issues in clinical psychology are endemic across Wales, and this, combined with the relatively low number of clinical psychology posts in Wales, means there are typically long waits to access psychology services.

    Similarly, in Northern Ireland only 53% of children saw a social worker in 2021/22, and only around 1 in 3 adults saw a clinical psychologist between September 2021 and October 2022. This needs to be rectified immediately.

  • What's next?

    Political campaigning

    We plan to continue to press the Government on these important matters. We will meet the new Mental Health minister to show them the issues that matter to the CF community and what they must do to help. We want to include your voice in these discussions, and you can offer your thoughts on CF wellbeing professional support here.

    Working with partner organisations

    We are working hard to bring together a coalition of partner organisations that can campaign with one, loud, unified voice on issues relating to the mental health and wellbeing of those with complex health conditions. With these partners, we will bring together new evidence on the economic value of psychological and social professionals to take to government and NHS leaders.

    Supporting our community

    We will also continue to champion the wellbeing of our community. We know there are concerns about how new treatments affect people’s mental health, and as we develop a better understanding of these, we will ensure the impacts are understood and addressed.

    In work, education and accessing benefit support, particular challenges continue to cause anxiety, depression and other mental health problems. We are dedicated to making sure these challenges are tackled, and our community are supported to live a life unlimited.

Campaigning hard

We're raising our voices to make sure people with CF are heard.

Campaigning for free prescriptions

CF is one of the few life-threatening, chronic conditions where people are still required to pay for prescriptions in England, incurring a lifelong financial burden. 

Latest news

Take a look at the latest news from the Trust as we unite for a life unlimited.

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