Improving clinic attendance and reducing health inequalities in children and young people

A UCLH rheumatology team is leading an exciting project to help understand the reasons for young people missing their hospital appointments and find ways to improve this.  

Over recent years, the adolescent and young adult rheumatology team noticed that there was a particularly high rate of non-attendance for clinic appointments within their service, with between 10 and 15 per cent of children and young people missing them. This was not only having an impact on the quality of care the service was able to provide, it was also costing the NHS money and affecting staff morale.  

Rheumatological conditions, such as arthritis and lupus, can be challenging for people of any age but young people can often be particularly affected by the emotional and physical toll that they take. Young people with these conditions often need regular check-ups in hospital, or they may need to come in to receive treatment such as an infusion. 

Rheumatologists, Dr Aicha Bouraoui and Professor Debajit Sen, felt they needed to take action as missed appointments were affecting the quality of patient care, and staff morale. They successfully applied for a Health Foundation grant, and the ‘Pathway to Equity’ programme began with a focus on adolescent and young adult rheumatology and paediatric outpatient services. 

The aim of the programme was to not only identify who is most at risk of non-attendance, but also to genuinely understand the reasons for non-attendance and what the service can do to help, so that both patient care and service efficiency will improve.  

The first step was to use a data prediction model which could proactively identify patients at risk of non-attendance. This data analysis demonstrated that deprivation and distance from hospital are the two main drivers of clinic non-attendance. 

But the team understood that knowing which patients were most likely to miss appointments was only one part of the pathway to equity and improvement. They wanted to take a deep dive into the reasons, looking at health inequalities and psychosocial reasons that may get in the way of children and young people accessing care.  

In order to achieve this, they knew that they had to get young people genuinely involved in the process and the solutions. They carried out interviews with young patients and their guardians, and then invited a group of young people to an engagement event at the hospital. The event was co-designed and co-facilitated by the young people themselves and called the ‘Hangout Space’. It featured interactive sessions, role play and creative art activities. 

One of the young people attending said:

“It was interesting to look at things from the perspective of a medical professional, and thinking about how they have to balance getting the answers with the limited time and resources available. It was also nice to hear from the medical professionals themselves about their view of what the big problems with the system are.” 

Learning from the ‘Hangout Space’ event, the team also visited a number of local secondary schools where clinical staff worked with a group of students on health inequalities, barriers to attending hospital appointments and how we can rebuild young people’s trust in the NHS.  

Since then, they have worked with five local secondary schools, delivered four workshops and worked with over 90 students. 30 of the young people volunteered to continue to work on the programme as Quality Improvement community partners.  

Following the events, several steps have been taken within the team to help improve attendance at appointments and address health inequalities, including: 

• Continuing to identify and proactively telephone patients at risk of clinic non-attendance 

• Employing a peer support coordinator to support young people with care navigation 

• Providing travel guidance for staff to support patients travelling to hospital 

• Working with health champions in schools to set up a ‘health space’ and providing peer support on health promotion supported by teachers and NHS professionals. 

Dr Aicha Bouraoui, rheumatology consultant and Pathway to Equity programme lead, said:  

“Non-attendance is a long-standing issue for the NHS, and we wanted to truly understand the reasons amongst young rheumatology patients behind this. I have loved working with both the clinical team and the young people themselves to tease out some of the issues and work together to find solutions to non-attendance.  

“The Pathway to Equity programme has demonstrated that collaboration between health systems and educational institutions is a key to transforming the lives of our future generations.” 

The Arts and Heritage team commissioned artist and designer Liv Cleverley, who specialises in creating illustrations with textured and abstract shapes, to create artwork that reflected how the young people who took part in the ‘Hangout Space’ felt about having their voices heard in healthcare. Read more about this and view the artwork that was created.