Access to medical testing for children: insights from Birmingham families

Every year, thousands of children require medical tests for diagnosis and monitoring. But how do families feel about current testing services, and what would make them more accessible?

The NIHR HealthTech Research Centre in Community Healthcare (NIHR HRC) recently engaged with over 100 Birmingham families to explore these important questions.

Understanding current challenges is crucial because medical tests, including blood tests and imaging (like x-rays) play a vital role in clinical decision making, supporting diagnosis, monitoring illness and guiding treatment. Currently most medical testing for children is carried out in hospital-based laboratories and imaging facilities. Work by some of our colleagues (https://doi.org/10.1136/archdischild-2023-325550) on data for Oxfordshire showed a decline in laboratory testing for children between 2005 and 2012 but then an apparent increase between 2012 and 2019; although hospital inpatient requests for tests were steady, the increase appeared to come from outpatient and general practice settings.

Conventional sampling and testing methods present several challenges, including the time it can take for results to become available and the invasiveness of some methods of sample collection which can cause distress and anxiety. The necessity to attend hospital for the collection of samples may be more disruptive to family life than if sampling and even testing could be carried out in community settings such as the GP.

To better understand families' needs, Umasha Ukwatte and Phil Turner from the NIHR HRC hosted a stall that exhibited examples of modern medical tests that could be used outside a traditional hospital environment. They focussed on two key questions:

1. What makes it difficult to get blood tests and other kinds of medical tests for your children? 
2. If your child needed a medical test, where would you prefer to get it done? 

These questions were proposed by Sparkbrook Children’s Zone paediatrician and NIHR HRC theme co-lead Dr Chris Bird as he was interested to understand barriers and challenges faced by families when navigating medical testing for their children, and preferences if alternative models of testing were available. For location preferences, the team proposed four locations, including GP clinics, hospital, at home, or a community testing centre.  During discussions, community pharmacies emerged as another potential location suggested by attendees.

The team gathered feedback through interactive posters, with attendees adding post-it notes of their thoughts and experiences for the first question and selecting options for the second question using child-friendly coloured stickers. This approach enabled rich discussions about families’ reasoning behind their answers. 

The session identified a number of challenges and barriers experienced by families when accessing medical testing for their children, especially for tests requiring conventional blood samples. We have summarised some of the main learnings below.

Key findings: time and access barriers

One of the most significant challenges identified was limited availability of appointments, long waiting times for more routine appointments, and requirements for separate appointments for testing and results.

These time-related barriers proved especially problematic for parents needing to take time out of work and children out of school to accommodate appointments. Some families reported that local waits for non-urgent blood tests were commonly reaching around 3 months.

Psychological impact on children

The anxiety and distress induced by conventional medical testing was a major concern. Contributors explained that young and special needs children are often distressed by sample collection methods that cause discomfort, particularly as it is hard or not possible to explain the need for these procedures to them.

During discussions at the HRC stall, carers expressed a very clear preference for finger-prick blood sample compatible testing over conventional blood tests, believing this method would be better tolerated and less traumatic for children.

Testing location preferences

Many carers favoured home testing options (such as home visit or parent/self-testing) and GP clinic testing over hospitals and testing centres. Both were seen as more convenient, with the familiarity of the location perceived as likely to mitigate child anxiety associated with testing.

Families noted that hospital settings can be particularly distressing for children, especially those with special needs, due to the unfamiliarity of the environment and long waiting times.

Additional hospital-related challenges included insufficient parking options, conflicting caring duties, inadequate staffing, and perceived poor cleanliness of children’s waiting areas. However, some carers preferred hospital testing, citing greater confidence in hospital staff expertise.

Notably, pharmacies were suggested as an additional testing location, with attendees highlighting pharmacists’ increasing capability to provide testing services and help address NHS capacity gaps.

Moving forward

This community engagement has revealed clear preferences for more accessible community-based testing options, including through GP clinics, pharmacies or athome. Point-of-care tests with minimally invasive sample collection methods could offer a promising solution to improve both the accessibility and acceptability of medical testing for children.

Next steps 

The HRC team will be pursuing projects to identify and define specific needs for community-based testing for children that address these highlighted challenges. They are currently working on several projects to evaluate testing for children using minimally invasive sampling methods.  Readers can stay up to date and informed about the projects undertaken by the HRC Paediatrics theme by visiting our website at Infections and Acute Paediatrics — NIHR HealthTech Research Centre – Community Heathcare

About the event:

These insights were gathered at the Sparkbrook Children's Zone Family Health Day on January 25th at St Christopher's Church, Birmingham. The event, funded by the Birmingham and Solihull Integrated Care Board, provided health checks to 71 children through the Sparkbrook Children's Zone paediatric care team.