INFORM: Improving care for people who Frequently call 999: co-production of guidance through an Observational study using Routine linked data and Mixed methods

End of project summary

Main messages 

People who frequently call the 999 ambulance service for urgent healthcare present an operational challenge to health and care providers internationally. Their needs are inadequately met by current service provision. There has been limited research in this area in terms of understanding who is calling the 999 ambulance service in Wales and why? The evidence is also limited on the type of care that is delivered and the perceived effects of this care by service providers and patients. 

In this mixed methods study the aim was to understand patterns of service use and health outcomes for people who frequently call the Welsh ambulance service and to work with stakeholders to coproduce a guidance for optimal care for formal testing in a future evaluation. A scoping review of the literature described characteristics of people who frequently called the emergency services and interventions to address their needs. A retrospective data linkage design, using anonymised records of people identified as high intensity users of the ambulance service was linked to routine health records. Perceptions and experiences of care and care provision were collected from people who call frequently and from care providers using qualitative interviews. Finally, the results from the study were presented to public members and stakeholders to discuss the findings and to draw implications from this study. 

Significant results:

The scoping review showed that a multiagency response had positive outcomes for this patient group, but those with complex needs required targeted care for longer periods. 981 high intensity users using the national definition of someone making more than five calls a month or 12 calls over three months were identified from Welsh ambulance service records. Nearly 50% of people calling were over 75 years of age and 1/6 had died within six months. There was an association between levels of deprivation and calling 999 (26% - most deprived, 11.5% - least deprived). Staff reported a lack of resources to address complex needs and that the threshold for referral to services such as adult mental health was too high, with most people accessing care at a time of crisis. There was often a disparity between the presenting condition and the underlying drivers which led to people calling. Patients reported feeling stigmatised by services, with services giving the impression that they did not want to see them. They reported underlying trauma and chronic ill health as reasons for calling. 

Implications:

This study raises questions about a potential mismatch between need and service provided. Early intervention and better co-ordination between services (EMS, ED and primary care) is required, supported by trained staff who are resourced to better support this patient group.