InFORM: improving care for people who Frequently call 999
Research type
Research Study
Full title
InFORM: Improving care for people who Frequently call 999: co-production of guidance through an Observational study using Routine linked data and Mixed methods
IRAS ID
250693
Contact name
A Khanom
Contact email
Sponsor organisation
Swansea University
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
Research Summary
Background: People who frequently call the 999 ambulance service – at least five times a month - may have long term problems rather than a medical condition requiring urgent treatment. They need the right help but calling 999 may not work best for them or others trying to access emergency care. Some ambulance services are exploring different ways to help these callers such as multidisciplinary case management, but without fully understanding the problem or how it benefits the patient.
Aim: To understand patterns and health outcomes of frequent calling and to work with stakeholders to create guidance for formal testing in a future evaluation.Methods: In this mixed methods study we will first carry out a scoping review of literature. We will then identify two groups of patients 12 months retrospectively who meet the frequent caller definition (Phase 1). Group 1 will be identified from an area where multi-disciplinary case management is in place to address the needs of patients, and group 2 from an area where usual care such as flagging on system is used with no or limited intervention. Twelve month health outcomes for both groups will be explored by linking patients anonymously to their health records. We will also examine the views of patients and staff using qualitative Bio-photographic interview method with a follow up interview at six months and focus groups (Phase 2).
Results: Findings will include follow up of eligible patients (n=400); successful data matching and data linkage of patient health records; retrieval of health outcomes within 12 months. Outcomes will include: adverse events, deaths, emergency admissions to hospital; 999 ambulance attendances. Qualitative findings will report results from Bio-photographic patient interviews with completed scrap books (n=36); and staff focus group interviews (n=22).
Output: We will work with stakeholders(Phase 3)to co-produce a 'Guidance of Care.'
Summary of Results
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 3 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 6 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.REC name
Wales REC 7
REC reference
19/WA/0083
Date of REC Opinion
26 Mar 2019
REC opinion
Favourable Opinion