Patient Panels act as an extremely useful tool to discuss and improve parts of the patient journey. They provide an opportunity for healthcare professionals and patients to meet, so that both can genuinely understand each other’s situation and move towards a mutually beneficial service improvement or solution.
They also provide opportunities for education, which supports self-management, and to meet other patients and gain support.
Statement 1.7
Patients and parents/carers should have a voice and direct involvement in the development of the service.
Statement 7.2
Patients should be supported in self-management, as appropriate, through referral or signposting to education, groups and support.
Birmingham Children’s Hospital is unique in organising a Patient and Parent Panel, which has been running since 2010. IBD nurses from other units have attended time to time with a view to replicate the patient parent panel in their own centres.
The Patient and Parent Panel meets three to four times a year on a Saturday (usually from 11am to 2pm). On average 20-30 families attend, which means around 100 people, as siblings are very welcome. It is an informal setting where children and young people with IBD and their parents can raise issues that they are having with the IBD service and hear about changes that have been made because of previous feedback. It is an opportunity to hear from healthcare professionals about IBD, from other patients about their experiences, and from Crohn’s and Colitis UK about support on offer. It is also a forum to speak to other patients and parents and gain support.
Parents value the opportunity to speak to other parents, including those of different ethnicities, to allay fears about the impact of IBD on their child. Topics tend to include pregnancy, cancer risk and impact on job opportunities. Children and young people value the opportunity to talk about their experiences at the youth club, run by youth workers, and are also able to have an individual meeting with a member of their IBD team, if they would like to discuss something privately.
In addition to being highly valued by patients and their parents, the Patient and Parent Panel has played a key role in developing the IBD service at Birmingham Children’s Hospital. As a result of feedback there is now more emphasis on psychological provision and transition, and more afternoon clinics – which suit patients and their parents.
After a pause in 2020 due to the coronavirus pandemic, patients and their families are looking forward to these valued events restarting in 2021.
Date created: April 2021