1388 Evaluation of availability of specialist psychological services for paediatric cystic fibrosis patients in district general hospitals and tertiary centres. Archives of Disease in Childhood

Published Date: 11th October 2021

Publication Authors: Prasad A

Background
Cystic Fibrosis (CF) is a life-limiting genetic disorder. Given the chronic, progressive and disabling nature of CF, it is well recognised that living with CF can have an emotional and psychological impact. A significant number of CF patients report experiencing stress, anxiety, low mood and difficulties in managing their treatments. The morbidity and mortality factors pose cognitive, emotional and behavioural challenges for many children with CF and their families. NICE (National Institute of Clinical excellence) guidelines recommends that the specialist cystic fibrosis multidisciplinary team should include Specialist Clinical Psychologist (SCP) who have specialist expertise in managing psychosocial problems in children and young people with CF.

Objectives
We conducted an online national survey across England to evaluate the services available for psychological assessment of CF patients in District General Hospitals and Tertiary Paediatric Respiratory Centres.

Methods
We contacted paediatric tertiary centres (n=21) and District General Hospitals (n=33) CF specialist teams across England. A questionnaire exploring current psychologist services was emailed to them.

Results
5/21 tertiary hospitals and 14/33 DGH participated in this survey. Of the 19 (n) responses, 5 (26%) were tertiary hospitals and 14 (74%) were DGH.

All respondents from the tertiary hospitals revealed they had availability of Specialist Clinical Psychologist (SCP) who participated in all CF meetings including MDT (Multi-Disciplinary) and Annual Reviews.

3/14 DGH (21%) had availability of SCP locally who saw patients in CF Annual reviews and MDT meetings.

In another 3/14 DGH (21%), CF patients had no access to SCP either locally nor in tertiary hospitals. These patients were referred to CAMHS locally for psychological concerns or a Diabetes Psychologist if patient had Cystic Fibrosis Related Diabetes (CFRD).

In the remaining 8/14 DGH (58%), CF patients had no access to SCP locally but out of these, SCP from tertiary hospitals visited CF clinics in 2 DGH. CF patients from the remaining 6 DGH visited tertiary hospitals to access psychology services.

Conclusions
From the analysis of the results from the online survey, we concluded that very few DGH have local SCP services. Where SCP services are not available, patients have to rely on tertiary hospitals or local CAMHS services. It is known that patients with long term physical health problems are likely to have mental health problems. NHS England highlights that prevention of mental health problems is the most cost-effective service that can be provided. Hence, it is recommended that all children and young people with CF should have access to psychological services so that they benefit from early psychological intervention and improved health outcomes through improvement in wellbeing. Our survey indicates that there is an unmet need to develop psychological services within DGH. A major limitation of this survey is the low response rate which we attribute to the work and capacity pressures from COVID-19.

Wajid, L; Prasad, A. (2021). 1388 Evaluation of availability of specialist psychological services for paediatric cystic fibrosis patients in district general hospitals and tertiary centres. Archives of Disease in Childhood. 106 (Suppl 1), A349-A350

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