Nearly half of children with cystic fibrosis unable to access support from social workers

News - 09/06/2022

Nearly half (47%) of children, and 11% of adults with cystic fibrosis have reported being unable to access a social worker. Cystic Fibrosis Trust calls on the Government to ensure everyone with CF has access to a CF social worker in light of the ‘concerning’ NHS staff shortages.

New insights into the experiences of people with cystic fibrosis (CF) reveal that a significant proportion have not been able to access vital social support when they needed it.

Survey findings published today by Cystic Fibrosis Trust offer the first ever insights into how people with CF experience care in the UK. While overall experiences of care were positive, with over 85% of respondents in each survey rating their care as ‘good’ or ‘excellent’, responses reveal a concerning lack of access to social workers and psychologists, a critical part of CF care.

The survey on children’s care took place before the pandemic from September 2019 to March 2020, and the adult survey ran during the pandemic from December 2020 to March 2021.

While care guidelines recommend that all patients with CF should have access to clinical psychology and social work services, nearly half (47%) of parents reported that before the pandemic, their child was unable to see a social worker, with 12% unable to see a psychologist when they needed support. In addition, one in ten (11%) adults reported a lack of access to social workers, and 4% had been unable to see a psychologist during the pandemic.

A snapshot of staffing levels at CF centres in 2021 also revealed variation in staff availability. More than two thirds (69%) of UK child CF centres and nearly half (44%) of UK adult CF centres reported not having a social worker in their Multi-Disciplinary Team (MDT). In addition, around one in five centres reported that they had no dedicated CF psychologist in their MDT (23% for child and 17% for adult centres. Across child and adult CF centres, 75% of vacant social worker posts had remained unfilled for over six months.

It’s very concerning that many children and adults with cystic fibrosis have not been able to access support from a social worker or psychologist when they needed it most. This support is crucial to ensure that everyone with CF, and particularly those with the most complex needs, can live long and fulfilling lives.

With the pandemic exacerbating staffing shortages and CF services continuing to face challenges, the results demonstrate an urgent need to tackle the widespread variation in staffing levels at CF centres across the UK. It is vital that governments across the four nations prioritise making sure everyone with CF has access to a social worker and the full package of care and support they need to live a life without limits.

David Ramsden, Chief Executive at Cystic Fibrosis Trust

As a CF social worker, I have seen first-hand the challenges that living with a chronic condition such as cystic fibrosis presents. CF social workers are in a unique position to help people with CF understand and navigate the challenges they face. It’s worrying that many people with CF and their families do not have access to crucial support to help them cope with the practical, emotional and financial issues associated with having a chronic condition.
Fiona Dowdall, cystic fibrosis social worker at the Manchester Adult Cystic Fibrosis Centre

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. 