Developing an Always Event® to improve experiences of End-of-Life Care

How did the journey start?

Hertfordshire Community NHS Trust had undertaken an annual End-of-Life survey for three years which consistently showed the same areas for improvement; patients’ knowledge of who was coordinating their care and being able to reach a healthcare professional who would listen or respond at any time of day or night. These themes were also supported by feedback from the End-of-Life care complaint investigations.

To drive improvements in these areas, the trust was keen to use a different and more innovative approach. It was decided that undertaking an Always Event®, where people using services were involved in the process, could be beneficial for improving their experiences of End-of-Life care. This approach was felt to align with the trust’s strategy of working ‘with’ patients rather than ‘for’ patients and appealed as it was a nationally recognised quality improvement methodology.

What mattered most to patients?

The first step in co-producing an Always Events® is to understand what matters most to patients and their family members/carers. Due to the sensitivity of End-of-Life care, verbal feedback was sought from people using services at an individual level, either at clinics or over the phone, rather than via a group discussion. Three areas were identified as important to people using services that should always happen within a community visit:

Knowing which healthcare professional will visit

As a multi-disciplinary team of healthcare professionals provide End-of-Life care, people using services had experienced uncertainty around who would be visiting them, such as a district nurse, palliative care nurse or hospice care. An introduction as to who was visiting was highlighted as important.

Knowing who to contact

Due to the nature of the care, it was also important for people using services to understand who they could contact throughout the day and night.

Knowing who was co-ordinating their care

As people using services saw many different healthcare professionals, it was key for them to understand who was coordinating their care.

I will always have an understanding of why I am being visited, by whom and how I can contact the service, day or night.

Vision Statement

Implementing and testing change

Having identified these three areas as being important to people using services, the Always Event team decided that the healthcare professional visiting the person should routinely ensure that they know:

• Why they are being visited and by whom
• How to make contact with the service day or night

Staff must complete this at the core assessment and indicate that people using services understand this information (identified via read codes). It was initially intended that frontline staff would record that this information had been shared with the person using services on a paper form. However, when the point of care team consulted with staff about the Always Event, they suggested the questions should instead be added to the existing core assessment that is held electronically (SystmOne). They felt this would reduce the administrative burden on them and would ensure the questions were covered in each appointment. This highlighted the importance of involving staff from the start of the Always Event so that the process for implementing the changes could be effectively embedded. Listening to the suggestions from staff also helped to engage them in the Always Event.

The inclusion of the Always Events questions in the electronic core assessment was initially piloted with one community nursing team. During the testing phase, further feedback was sought from people using services over the phone to check on the reliability of the process. This demonstrated that all people using services were being asked the three questions and were positive about their visit. Staff were also consulted about their experiences of piloting the Always Event which showed largely positive feedback; staff understood why the questions were important and that it was contributing to providing good palliative care.

The team were also able to check the reliability of implementation by examining data extracted from SystmOne. The performance information team were able to create a report each month to indicate the number of core assessments completed and the proportion that had data for the three Always Event questions. This showed an increase in the number of applicable read codes (i.e. those associated with the Always Event) used at the core assessment in the community nursing teams.

Achievements

As the core assessment was already part of working practices, this resulted in the Always Event being easily adopted by staff and becoming part of everyday work. This was particularly evident when staff working in other nursing teams started to automatically ask people using services the additional questions unprompted when they saw them in the online core assessment. The Always Event had naturally, and successfully, spread to other teams.

Since the Always started, the core assessment was redesigned and simplified to make it quicker and easier for staff to complete. Despite the core assessment being shortened, the Always Events questions remain in a standalone tab as a core element of the assessment which highlights its success in being embedded and sustained.

Feedback was gathered from people using services about their experiences of their visit through one-to-one telephone calls. This showed the introduction of the Always Event questions into the core assessment had a positive impact. All those contacted understood why they were being visited, who would be visiting them and the contact details for the service.

The point of care team also regularly sought feedback from staff involved in implementing the Always Event. Staff were asked how well they thought the process was working and what they thought about the changes being implemented. The overall feedback was positive; the changes were not felt to be burdensome and the benefits to people using services were appreciated.

The team won an award at the national NHS Elect event in December 2019 for their End-of-Life care Always Event and are working towards achieving their Level 1 recognition award from NHS England and NHS Improvement.

Key learnings

Value staff input

Consulting at an early stage with staff about the implementation of the Always Event was key to its success. Acting on staff feedback also helped to engage them with the changes.

Good visibility of Always Event

To ensure good visibility of the Always Event within the trust and get senior-level support, the team lead incorporated it into the organisation’s quality priorities. This helped to raise its profile.

Educate staff

The team lead needed to clearly communicate to staff how Always Events are a different approach to quality improvement work previously undertaken; it required a ‘shift’ in the way of working. There was a need to educate senior-level staff that this approach takes longer before results can be evidenced and that it is not a ‘one-off event’. Tailoring information to the group of staff was seen as key, in addition to regularly communicating about the work through staff bulletins and forums/groups.

Patience and time are key

It was noted that the approach takes time and patience to implement properly due to the involvement of people using services. It was recognised, however, that deep engagement with people using services can provide more insightful information to drive quality improvements.

Understand measurement requirements

The need to measure the impacts of the Always Even was a key learning for the team. It is recognised that to meet the criteria for the recognition award, evidence is needed to show how the changes improved people’s experiences and that this had been sustained.

Next steps

As it has been two years since the trust initiated this Always Event, the team are going to reassess the work as part of their trust-wide quality priority to see if improvements have been maintained. Given the impacts of Covid-19 on service delivery, the team also want to revisit what is most important to people using services about their experiences of End-of-Life care. They are keen to better quantify the data collected and to find out if there are any other areas where improvements can be made to the experiences of people using services.