Getting advice lines right

Over the past two years we have delivered a programme of training to ensure that IBD nurse specialists at hospitals around the UK provide the best service possible through their advice lines.

We know that the advice lines run by IBD teams are a vital resource for people living with Crohn’s and Colitis, and that they have become even more significant during the coronavirus pandemic. In early 2020, 25% of services saw a doubling of the calls to their advice line and some services have experienced an even greater increase.

“The positive to come out of that is that it shows how essential these services are to patients,” says Crohn’s & Colitis UK IBD Nursing project manager Lisa Younge. “It gives us an opportunity to look at our services and make sure that they are adequately supported, and they have got the infrastructure around them to ensure that they can be delivered.”

This year, our advice line training has gone virtual. In April, Lisa held the first in a series of online sessions for IBD nurse specialists. She was joined by two other IBD nurse specialists, a doctor and members of our helpline team. One of our volunteers also ensured that the patient perspective was included. The next session will take place in July.

“We’ve collected feedback and there has been a lot of positivity. Attendees said that the training helped them re-think their advice lines and the role they play in follow-up care for people with Crohn’s and Colitis,” says Lisa. “IBD nurse specialists also said that they are feeling better about giving their advice line the time it deserves, rather than trying to answer calls in between everything else on their job plans.

“These sessions are aimed at helping people to reflect on their advice line service and giving them the tools to have the right conversations, with the right people, about how things could be managed going forward.”

Our audit in 2019 showed that, of around 400 IBD nurse specialists in the UK, virtually all did advice line work but only 10% had received  any formal training in advice lines. Eventually, we would love to reach all those nurses with our training and we hope that running these sessions online will help us to get closer to that goal.

“It's really important that we get this aspect of care right. So much of what we want to do in chronic disease management is around minimising unnecessary contact and allowing people to get on with their lives, living with their conditions,” explains Lisa.

“To do this effectively, it is essential that when people do need their IBD team, they can get hold of them in a reliable way. You have to have that bit working properly, so that people have the confidence to be able to go off and be themselves.”

The IBD Standards recommend that calls to advice lines are returned by the end of the next working day, but the priority for IBD teams must be people who ring up because their disease is flaring. Lisa’s recommendation for anyone who needs to speak to their IBD team is to reach out sooner rather than later if you need help.

“It’s much better for us if we know that you’re there and that you’re struggling. Don’t leave it to 4.50pm on a Friday afternoon. Call us early in the week so we can get hold of you and offer support and help.”