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Call 4 Concern: the impact of a patient-and-relative-activated service

23 November 2023
Volume 32 · Issue 21

Abstract

The aim of this project was to introduce and evaluate the Call 4 Concern© (C4C) service, which provides patients and relatives with direct access to critical care outreach services (CCOS). This allows patients and relatives an additional platform to raise concerns related to the clinical condition and facilitate early recognition of a deteriorating patient. The introduction of Call 4 Concern at a district general hospital was inspired by the Royal Berkshire Hospital, where staff have been pioneering the service in the UK since 2009. They were able to demonstrate the potential to prevent clinical deterioration and improve the patients' and relatives' experiences. The project was originally inspired by the Condition H(elp) system in the USA, which was set up following the death of an 18-month-old child who died of preventable causes. Similar tragic cases in the USA and the UK have prompted campaigning by affected families, resulting in the widespread adoption of comparable services. The project was rolled out in the authors' trust for all adult inpatients. There was a 2-week implementation phase to raise awareness. Between 22 February 2022 and 22 February 2023, the CCOS team received 39 C4C referrals, representing approximately 2.13% of the total CCOS activity. Clinical deterioration of a patient was prevented in at least three cases, alongside overwhelming positive feedback from service users.

There has been widespread use of clinical systems to improve the recognition and response to deteriorating patients, including the National Early Warning Score (NEWS 2) (Royal College of Physicians (RCP), 2017) and the introduction of teams such as critical care outreach teams and rapid response services. Despite this, complications within hospitals continue to occur, resulting in patients experiencing unexpected physiological deterioration that can lead to critical illness, intensive care unit (ICU) admission, cardiac arrest and/or death (McGaughey et al, 2017; National Institute for Health and Care Excellence (NICE), 2017). Organisations vary in their ability to manage deteriorating patients (McDonnell et al, 2013), with one organisation escalating only 57% of patients with a high NEWS 2 score (Spiers et al, 2015).

The causes of missed deterioration are complex but have been attributed to a failure to assess the patient and monitor vital signs promptly, alongside potential time pressures, workload constraints, inadequate staffing or a lack of available equipment. Other causes include insufficient education on the identification and management of deteriorating patients. It was found that there was an inability to escalate the patient, either by not following protocol or not being able to use a structured communication tool, a lack of senior support and sometimes even a fear of reprimand (Chua et al, 2013; Johnston et al, 2015; Massey et al, 2017; McGaughey et al, 2017; Eddahchouri et al, 2021). It is widely acknowledged that a delay or failure to recognise deterioration can lead to worse outcomes for patients, including higher mortality rates, which is why additional resources need to be used to improve detection and management of deteriorating patients (Keogh, 2013; Johnston et al, 2015; Barwise et al, 2016).

One resource that has been largely overlooked in the identification and escalation of deteriorating patients are patients themselves and their families. The early signs of deterioration can be subtle. Given that patients and their families have an intimate understanding of their condition, they can alert healthcare providers to any changes and seek escalation earlier. However, the healthcare provider may sometimes be more inclined to await more objective signs, resulting in delayed escalation (Bucknall, et al, 2021; Chua et al, 2022).

Background to the concept

The concept of ‘Call 4 Concern©’ (C4C) was introduced at the Royal Berkshire Hospital in 2009 (Odell, 2009; 2019). The service was inspired by the Condition H(elp) system at the University of Pittsburgh's Medical Centre in the USA. Condition H(elp) was set up in 2005 (Greenhouse et al, 2006) as a result of the case of an 18-month-old child, Josie King, who died in 2001 due to hospital errors and poor communication (Josie King Foundation, 2023). Alongside examples of similar services in the USA, anecdotal narratives from relatives at conferences and local feedback from patients, relatives and staff involved with the critical care outreach services (CCOS) at a district general hospital in England, contributed to the decision to introduce the C4C initiative, which was believed to be the first of its kind in the UK. Published service reviews have provided evidence through data collection and feedback that C4C positively impacts the prevention of patient deterioration and improves the patient and relatives' experiences (Brady et al, 2015; Eden et al, 2017; Odell, 2019). The publications also provided insight into the feasibility of implementing a C4C service in acute hospital settings within the UK. They demonstrated that the CCOS team's workload is not greatly increased, and that patients and relatives highly value the service and find it useful, reassuring and empowering.

In the UK, there have been similar tragic cases that have prompted campaigns led by patients and relatives. In 2013, Alison Phillips was involved in a head-on collision and airlifted with suspected internal injuries (Health Service Journal Events, 2019). She was admitted to a surgical assessment ward for further observations. Despite reporting excruciating uncontrolled pain, tachycardia and vomiting, the ward team treated her for constipation induced by opioids. The ward nurses and Alison's family and friends all raised concerns to the surgical team; however, no further investigations were sought. After a long period without senior review and delayed escalation, Alison's deterioration had failed to be recognised and treated. She suffered multi-organ failure and severe sepsis, requiring emergency surgery and a long, complicated stay in intensive care.

In another case, Victoria Harrison, aged 17, was treated for appendicitis. The routine appendectomy was complicated when an abdominal artery sustained a tear intra-operatively causing heavy blood loss. After moving to an acute surgical ward postoperatively, Victoria's pain continued to increase despite analgesia, and her wound continued to bleed, which was re-dressed by the nurses. The following morning Victoria suffered a cardiac arrest due to significant blood loss and did not survive despite 45 minutes of resuscitation. The hospital's enquiry into her death found 43 errors, which included absent documentation and communication of the intra-operative blood loss, little or no monitoring of vital signs overnight, inconsistent handovers between the nursing team and no discussions with family. Before her cardiac arrest, it was reported that Victoria had been messaging her mother and fiancé on several occasions, reporting uncontrolled pain and had sent photos of the large blood loss, which had not been adequately addressed or investigated by the ward team (Devlin, 2014).

It is recognised that not all patients who are becoming acutely unwell will trigger the NEWS 2 track-and-trigger system, but deterioration may still be recognised by clinical staff. Clinical judgement and health professional concern can prompt more frequent observations and earlier escalation than reliance on physiological observations (RCP, 2017). Health professionals are encouraged to escalate worries about a patient, irrespective of the NEWS 2 score, if there are other signs causing concern to them because of the health professional's knowledge of the patient (Odell et al, 2009).

Patient/relative-triggered rapid response systems are being widely adopted within NHS trusts in the UK but they remain an optional additional service. Alongside having a rapid response or critical care outreach team available in every NHS trust, C4C should be available to address variations in standards of treatment, provide additional patient safety netting and raise the quality of care being provided (NHS England/NHS Improvement, 2021). Systems for patient-and-relative-activated rapid response services are a growing priority on the national agenda and have been recognised and recommended for their role in patient safety (Subbe et al, 2019; National Outreach Forum, 2020; Intensive Care Society, 2022).

A C4C service recognises the value and significant contribution that patients and relatives can make. It empowers them to alert health professionals to subtle changes which can support the aim to prevent patients' further deterioration, avoid ICU admissions, improve patient and relative experiences, and reduce avoidable deaths. C4C has a proven track record of providing an extra level of safety within a hospital, resulting in many benefits to patients and their families. Additionally, there have been anecdotal cases where the CCOS had been informally activated by staff members because they are a patient themselves or the relative of a patient, which resulted in positive feedback.

All aforementioned factors influenced the decision to adopt the service in the district general hospital where the project leads were based.

Aims and objectives of the project

Although patient-and-relative-initiated rapid response services were already established in several other NHS trusts across the UK, C4C could still have been considered a new concept. There have been few publications on the subject in the UK, with many of the articles being largely descriptive, and few providing the quantitative evidence behind the practices. The key stakeholders decided it was necessary to introduce the service as a project to ensure its feasibility before establishing it as a permanent service. Therefore the overall aim of the project was to introduce and evaluate the service. Elements that required assessment were:

  • Impact on the Trust's Critical Care Outreach Team's (CCOT) workload
  • Potential impact on other services' workload, such as intensive care
  • Patient physiological outcomes
  • Patient, relative and service user experience.

Ethical issues

The project was presented to the relevant divisional governance panels and Trust safety committees, gaining approval before proceeding with the roll-out. The proposal was classed as a patient safety quality improvement project, so full ethical approval was not deemed necessary. Final approval was gained from the Trust's Operational Management Group.

Project outline

The project took place in a district general hospital in England between 22 February 2022 and 22 February 2023. The CCOT had been established since 2017, which further expanded to offer a 24-hour service in 2019. The provision of CCOS applies to all adult inpatients over 16 years of age, thus excluding outpatients/visitors, maternity, and paediatric patients. However, CCOT occasionally offer support to maternity and paediatric patients within their scope of practice. The CCOT also provides clinical support for adult and paediatric emergency and trauma calls. The CCOT receives approximately 160 referrals each month, and more than 3620 contacts with patients annually (including reviews, telephone advice and emergency attendance).

The project was conducted in three phases:

  • Research and project proposal design
  • Communication and approval
  • Promotion and service launch.

Phase one: research and project proposal design

The first step of the project began with research on the initiative, networking with other trusts that offered the same or a similar service and visiting the UK pioneers of C4C. During this phase, the project leads discussed the key stakeholders, what went well, along with what did not, and potential barriers to the launch. They also gained consent to use the name of the service, which is subject to copyright, alongside any promotional materials, such as the patient information leaflet.

A project proposal was written, outlining the aims of the service and how it would be delivered, with estimated impacts to existing services and associated costs. Predicted volume of activity was calculated using the 7-year service review provided by the Royal Berkshire Foundation Trust (Odell, 2019). The CCOT would also decide what data would be collected and audited via the service. The C4C service aimed to cover all adult inpatients (over 16 years old) admitted to the hospital. The patient or relative/loved one would call the CCOT directly on a dedicated mobile number from a mobile, ward telephone or home telephone. If unavailable at that time, the referrer would be able to leave a voicemail with contact details, and the team would then return the call when able.

When the CCOT received the call, they would obtain the patient's details, as well as a brief description of the problem. The team would triage the call, following a referral flow chart, ensuring the referrer had first contacted the ward team or had signposted a non-deteriorating patient call to appropriate services such as the ward manager and/or the Patient Advice and Liaison Service (PALs). An urgent problem would be prioritised and the team would visit the ward to discuss the concerns with the patient and/or relative and assess the situation. The CCOT would liaise with the ward team and other health professionals as needed, ensuring a robust plan was in place, aid communication and ensure clear documentation of the interactions. Patient consent had to be obtained before communication with the family; if the patient lacked capacity this was assessed and documented according to Trust guidelines and communication was directed through the documented next of kin. CCOT used their secure data recording system to assist with real-time quality indicators, in-depth data analysis and reports.

Phase two: communication and approval

It was anticipated that C4C would impact all adult inpatient areas, therefore the project proposal was presented at all departmental governance meetings for comments, suggested alterations and ratification.

Following discussions with the UK pioneers of C4C, it was predicted that this project would encounter the same challenges, the main one being that ward staff might have reservations about the service. In order to address these concerns, the aims and objectives of the project were widely disseminated prior to the service launch on a variety of platforms. Ward staff were given the opportunity to raise their concerns through ad hoc question-and-answer sessions, sisters' forums, departmental meetings and other learning events. This presented opportunities to assure staff that C4C provides an additional safety net for patients and is an enhancement to care. Misconceptions about the service were that it would be used to uncover bad practice, undermine parent teams or overturn plans/decisions of care. These were debunked.

Feedback was generally positive from the nursing workforce, but some reservations were shared from medical colleagues. These appeared to be based on misunderstandings of what the service entailed. Some ward doctors were concerned that a C4C referral would mean that ward treatment plans would be overturned by the CCOT and that patients or relatives would bypass ward teams and refer directly. A referral flowchart was designed and shared – this demonstrated that, in the presence of clinical concern, the referrer must have spoken to the ward team before referring to C4C. Reassurance was given that each referral would be triaged in the same way as a referral from clinical staff. A decision would be made whether an in-person review and/or physical assessment was indicated. Following the review, recommendations about a plan of care would be made, if appropriate, and communicated personally and documented in the medical notes.

Intensive care colleagues were concerned that the service would result in an increase in workload and admissions for them. The concerns were alleviated by clarifying that a referral to the C4C service is not an automatic request for an ICU admission; the referral would be taken and followed according to the predefined flow chart. If the reviewed patient was considered by the CCOS to require higher levels of care, they would be escalated to the ICU registrar, following the routine Trust process. In addition, testimonials were provided by ICU consultants from other trusts around the impact the service had had on them and how valuable they had found it.

The final project proposal was presented to and ratified via the trust Operational Management Group, enabling progression to the next phase and launch of the service.

Phase three: promotion and service launch

Local promotion of the service began with a manned information stand at the main entrance of the hospital to allow staff and visitors to review and ask questions as needed. Posters with the referral criteria and service contact details were placed outside all adult inpatient wards and in public areas such as the main hospital entrance and lifts. Patient information leaflets were designed and, following approval from the Trust's appropriate panel, were printed and distributed to all adult inpatient areas, added to the Trust's online patient information leaflets and left in the critical care unit to be handed out for patients stepping down to lower levels of care.

The team and Trust's social media platforms were used to promote the service launch to a wider audience. The launch was identified and publicised by the online patient safety platforms, the Patient Safety Learning Hub.

Following discussions with the Trust executives and the Media Team, it was deemed inadvisable to publicise the service launch in the local press. There were concerns that the service's aims might be misunderstood and perceived as an admission of failings in care. Nevertheless, it was agreed that a dedicated page would be designed for the Trust's public website to advertise and explain the scope of the C4C service, setting out the process for referral and contact information.

Evaluation

Assessing the value and impact of C4C as a resource and service is complex and therefore it cannot be solely measured quantitatively. One of the key aims for the service was to improve patient and relative experience. This was evaluated through service user feedback. An online survey link was sent to each referrer's mobile phone via text alongside a standard message following the discharge of the patient from the service. Any feedback was provided anonymously, however, recipients were given the option to provide contact details and consent to be contacted in the future for further testimonials.

The feedback has been largely positive. Figure 1 shows feedback from 11 respondents. The wording of the text clearly stated that the evaluation was on the C4C service alone and not on the entire hospital experience; however one responder who had posted a negative response had also provided negative comments, which were directed at the Trust and not the service. Analysis of written feedback was very positive. Some typical phrases used by respondents included ‘wonderful service’, ‘listened to my concerns’, ‘kind, positive and efficient’ and ‘helped us at a difficult time’.

Figure 1. Patient/relative feedback on Call 4 Concern (n=11)

Despite initial reservations, there has been positive feedback from medical colleagues, reporting that C4C helps them to manage patient/relative concerns. One doctor commented:

‘I have found Call 4 Concern extremely helpful when addressing concerns that a relative had raised. I used the clear documentation by CCOT to instigate further communications with other departments, address any internal actions and to directly feedback on the points to the patient's relative.’

Results

Number of referrals

Statistical data were gathered from the referrals that came through the service for analysis and evaluation. In the review period a total of 1827 referrals were received by the CCOT, of which 39 were C4C referrals (2.13%), relating to a total of 33 patients (Table 1). Most patients were referred only once, some had multiple referrals, the most being three referrals during their hospital stay. Twice as much activity as expected was received. A 7-year service review by Odell (2019) reported that only 0.8% of all referrals were C4C.


Table 1. Number of referrals to the Critical Care Outreach Team
First year review period Total number of CCOT referrals Total number of C4C referrals % of total referrals which were C4C
Month 1 103 5 4.85
Month 2 127 2 1.57
Month 3 111 4 3.60
Month 4 143 0 0.00
Month 5 151 2 1.32
Month 6 156 4 2.56
Month 7 164 2 1.22
Month 8 180 1 0.56
Month 9 184 3 1.63
Month 10 174 8 4.60
Month 11 186 4 2.15
Month 12 148 4 2.70
Total 1827 39 2.13

Sources of referral

Referral data demonstrated overwhelmingly that those using the C4C service were the female relatives (79%) of adult inpatients, only three of the referrals received were from patients themselves.

C4C referrals came from a range of areas within the Trust, including paediatrics (n=1) and ICU (n=1), and there was a relatively even split between surgical (n=19; 51%) and medical wards (n=17; 49%), which contrasts with the general CCOT activity, where the majority of referrals come from the medical wards/urgent care.

Time of day of referrals

The vast majority of referrals were received between 8am and 8pm, which correlates with when referrers are expected to be awake or have visitors. Surprisingly, activity spikes occurred at 11am and 4pm, with the majority occurring on weekdays (90%). It would be expected at these times that parent teams were on the wards and available to manage any clinical concerns that relatives might have.

Reason for making a C4C referral

Using the free text data from the C4C database, causes of concern were categorised into four themes (Figure 2). These were:

Figure 2. Breakdown of categories of concern (n=39)
  • Clinical condition. This included pain management, breathlessness, and new confusion
  • Communication issues. These included a lack of explanations or inconsistency in what was communicated, delays in investigations, and discharge delays
  • Non-clinical concerns, including perceived attitudes and behaviours of ward staff, dislike of hospital food, and absence of flexible visiting arrangements
  • Other. Other referrals included complaints about individual personnel.

The most common C4C category was for clinical condition (n=19; 49%), which correlates with the service aims and may reflect the accuracy and detail of the promotional materials. The second highest C4C category was communication issues (n=14; 36%), which was as expected. Often this related to the absence of more senior medical teams to provide relatives with the information they requested, whereas, on other occasions, the referral could have been to seek a second opinion or extra reassurance.

Responses to referrals

The CCOT member taking C4C referrals triaged the calls and determined the response needed (Figure 3). Given that most referrals related to a patient's clinical condition, it is unsurprising that the most common response was a clinical review of the patient. This meant that the CCOT practitioner was able to assess the patient, manage any deterioration on the ward, initiate appropriate interventions and ultimately prevent the need for higher levels of care. This also meant the practitioner had all the information available to update the referrer.

Figure 3. Response by CCOT to Call 4 Concern referrals (n=39

The second biggest response was providing reassurance to the referrer. The Trust uses multiple electronic systems, which meant that the CCOT practitioner was able to ascertain current vital signs and trends along with an up-to-date handover and the status of any referrals.

Referral outcomes

After exclusion of the 9 patients (23%) who did not require any level of review, the majority of patients referred to CCOT via C4C were discharged from the service once the CCOT practitioner was assured that the current ward care was adequate (n=18; 60%), a small number had interventions initiated by the CCOT practitioner that improved the patient's condition (n=3; 10%) and only 1 patient required admission to a higher level of care (3%) (Figure 4).

Figure 4. Patient outcome following C4C referral (n=39)

Discussion

Implementation of change initiatives are notoriously challenging within health care. Multiple factors can influence the success of changes, including leadership, motivation, timescales, organisational cultures and finance, among others (Carvalho et al, 2019; NICE, 2023). For healthcare-based change initiatives to succeed, it is vital to ensure there is a shared vision throughout the organisation, preventing resistance from members of the workforce that may jeopardise the success of the project (Ogbonna and Wilkinson, 2003). This project proposal encountered points of resistance from both medical and ICU colleagues. The project leads were able to dispel myths and provide testimonials from other organisations that offer this service. They were able to use their passion and knowledge of the service proposal to affect the pockets of resistance, which is vital to change management, and ultimately achieved the required approval for project launch (Northouse, 2012).

Despite having publications and examples of implementation available to guide the project leads, this change process did not come without its own challenges, some of which were specific to the organisation. The CCOT at the hospital where the project was undertaken does not have a dedicated clinical lead to guide service development, which meant that all transformations are entirely nurse driven.

At the research and proposal phase of the C4C project the CCOS that were provided at the organisation only included a 7-day-a-week, daytime-only service (8am-8pm). Following analysis of the 7-year service review produced by the Royal Berkshire Hospital (Odell, 2019), it was evident that the majority of referrals came in out of hours. The project leads felt that it would be unfair to offer a service that patients and relatives cannot always access and that this might add to any feelings of anxiety or frustration that were prompting the C4C referral. Following business case approval, the Matron and senior CCOT members were able to recruit additional team members to be able to launch a 24/7 service.

Notwithstanding these challenges, C4C was launched at the hospital on 22 February 2022 and has seen a higher-than-expected response rate. More than twice as many referrals have been made than what was expected based on data from the Royal Berkshire Hospital and other studies (Bogert et al, 2010; Brady et al, 2015; Albutt et al, 2017; Odell, 2019). The reason(s) for this are unknown; however, comparing the criteria for referral to C4C (queries or questions relating to clinical condition and/or plan of care following conversation with parent teams) and definitions of patient/relative complaints (considered an expression of grievance or dispute within a healthcare setting (Reader et al, 2014)), it could be suggested that there is a link between commissioner quality rating and number of referrals. Every UK acute hospital trust is regularly inspected by an independent regulator (the Care Quality Commission) which monitors and regulates services, publishing its findings. It aims to ensure healthcare providers are giving safe, effective and high-quality care to patients.

Analysis of the referral data demonstrated overwhelmingly that the people using the C4C service were female relatives (79%) of adult inpatients, only 3 of the referrals received were from patients themselves, which is in line with reports from other studies (Rainey et al, 2015; Odell, 2019). This could be a result of the publicity strategy. From an inpatient bed one would not have access to the referral posters and, due to illness, patients are unlikely to be searching for the services via the internet. Other contributing factors could include patients' level of confusion, frailty and/or clinical condition, resulting in patients not being able to recognise their own deterioration.

The majority of C4C referrals related to a clinical concern, which suggests the service is being appropriately used, in line with the service aims, a point echoed by others (Bogert et al, 2010; Hueckel et al, 2012; Odell, 2019). One patient required admission to critical care following C4C referral, but due to severe illness later died. Clinical deterioration of a patient was prevented in at least three cases, alongside overwhelmingly positive feedback from service users, demonstrating that the service has had a positive effect on patients and relatives.

Limitations

The change project and subsequent 1-year review was conducted in a single-site hospital with a 24/7 CCOT. The project was fully nurse led due to the absence of a dedicated medical lead. There has been no correlation to overall patient outcome data, morbidity or mortality, which could lead to questions on the impact of the service. Alongside this there are local organisational, structural and cultural factors that may influence the outcome of this project and its transferability to other hospital trusts.

Despite these limitations, the findings of the review are mirrored by others who have either studied this type of service or have adopted it within their own trusts, who agree that services such as C4C are essential tools that enhance patient safety (Miceli and Clark, 2005; Greenhouse et al, 2006; Ray et al, 2009; Vorwerk and King, 2016; Odell, 2019; Bucknall et al, 2021).

Conclusion

Drawing on the intimate knowledge of patients' relatives to help identify the subtle and early signs of deterioration and empowering them to call for help is an important element of patient safety. The need for healthcare settings to be able to offer patient-and-relative-activated critical care outreach services has been recommended by many organisations and is growing in importance on the national agenda.

This 1-year review builds on the previous and pioneering work in the field of patient-and-relative-activated rapid response services, and it describes the design and launch process to others who may wish to launch a similar service. This review has demonstrated that C4C provides patients and their family members with much needed reassurance and improves their overall hospital experience. Furthermore, services such as C4C have a proven record of improving the clinical condition of patients. They are essential tools to enhance patient safety and to empower patient and relatives.

Future plans

The following plans are ongoing:

  • Evaluation of service, including quantitative and qualitative outcomes
  • Networking and sharing of experience and resources to support other trusts interested in introducing the initiative
  • Promotion locally to ensure continued and appropriate use of the service
  • Exploring ways to raise awareness of the service in the adult inpatient population
  • Feedback of service evaluation to key stakeholders, governance, and patient safety groups
  • Continuing to offer this valuable service.

KEY POINTS

  • Introducing Call 4 Concern (C4C) generates a small manageable uplift in total Critical Care Outreach Team (CCOT) activity
  • C4C has an overwhelmingly positive impact on the patient and relative experiences
  • Offering C4C can reduce clinical deterioration for patients, decrease unnecessary ICU admissions and prevent avoidable deaths
  • Involving and enabling patients and their relatives to recognise and escalate deterioration is an important additional element of patient safety, the requirement for this is growing on the national agenda

CPD reflective questions

  • What barriers might you encounter at your organisation if you wanted to set up a similar service, and how might you overcome these?
  • How do you recognise and empower patients and relatives to be active participants in their care?
  • Are the concerns of patients and relatives taken as seriously as those from health professionals? If not, how can this be improved?