Working with service users to improve inpatient learning and disability services

How the journey started

Working in collaboration with their service users, and involving them in decision-making, was already integral to staff working within the learning disability nursing services at Humber Teaching NHS Foundation Trust. With co-production being at the heart of Always Events®, the clinical lead for inpatient services believed this approach would provide the ideal framework to help drive improvements in their services. Participating in a national programme, and working towards achieving a recognition award, was also felt to add credence to their quality improvement work.

Three frontline members of staff attended the NHS England and Improvement (NHSE&I) cohort training. They shared information about the Always Event approach with other staff working in the inpatient service via low key events or ad-hoc conversations so that it filtered through the unit. A point of care team was established to lead the Always Event which included both staff and service users.

What mattered most to service users?

Different approaches were used to find out what mattered most to service users who were inpatients in the unit to ensure that everybody had the chance to share their views. It was recognised that whilst some service users enjoyed coming together to discuss what could be improved about their inpatient care, this more formal ‘meeting’ approach was not appropriate for some, such as those with more complex learning disabilities and/or autism. Support was therefore provided to fund the employment of a patient experience nurse who could individually support service users to effectively share their experiences and views. Having the support from the patient experience nurse was vital for ensuring that all service users were included and that the feedback gathered was valuable.

A clear area for improvement identified by service users was the ability for them to contact their family or other people important to them when they wanted to. This was important to service users as not being able to contact people at a critical time increased their anxiety, particularly when in a new environment. Many people with learning difficulties often rely on facial expressions, vocal sounds and body language to communicate so service users can feel separated from their lives when admitted to hospital if they do not have the means to communicate through their chosen medium.

We will always be able to contact people who are important to us, 24 hours a day.

Vision statement

Implementing and testing change

To fulfil their Always Event vision statement, the point of care team recognised that service users would need access to telephones and/or laptops in order to contact people who were important to them at any time of the day. The team invited senior-level staff to a meeting to discuss their work on the Always Event and to secure their buy-in. Hearing directly from the service users was key for demonstrating the importance of the Always Event and the team were successful in acquiring equipment (such as laptops, handheld tablets and phones) for the inpatient wards. In each unit an additional landline was fitted and a mobile phone was provided.

To contact someone important to them, service users could approach any member of staff and request the use of the new equipment. Previously service users had to potentially wait for a phone to be freed up from use by staff or use their own equipment which had to be PAT tested before being used which could take time. As part of the Always Event changes initiated, the team provided free internet access on site for service users and their carers separate to the staff internet access.

The point of care team conducted many one-to-one discussions with service users, held meetings, and carried out surveys to review how well the Always Event changes were being implemented. As a result of this review, unlimited time access to the service user wifi was applied and additional boosters and hotspots to the system were established.

How improvements were co-produced

Service users co-produced the Always Event by being members of the point of care team, participating in meetings and actively involved in making decisions about the improvement changes. They were fully involved throughout the process, including presenting at the North East Regional Always Event conference in York. To ensure service users could work in full partnership with staff to implement the Always Event the meeting minutes and other information (such as on display boards) was put in a more accessible format using Widget symbols (widgitonline.com) Service users worked with staff to develop accessible materials by choosing designs and symbols that were meaningful to them. This included information about the Plan-Do-Study-Act cycle.

What helped with implementation?

Staff time

The point of care team lead was able to allocate one day a week to working on the Always Event.

Central support

The launch event and subsequent support from NHS England and Improvement was seen as a key facilitator to implementation.

Informing staff about the approach

Clear communication with senior level staff about how the Always Event approach differs to other quality improvement work was important to manage expectations about the length of time to deliver outcomes. It was emphasised to staff that Always Events are not a ‘project’ that end but that they become embedded in day-to-day work.

Resourcing

Funding to employ a patient experience nurse to support service users’ involvement in the Always Event was key to ensuring everybody had a voice.

Achievements

To measure success in achieving the aim of their Always Event, the team used a tally sheet to collect evidence through observing and counting the number of requests from service users to contact someone important to them and whether this was met within 5 minutes. It was the responsibility of the member of staff to whom the request was made to record this information. This supported the participation and continued engagement of frontline staff across the team. The information was collected daily over a two-week period before the Always Event and then at several time points since implementation. The information was collated in an excel spreadsheet.

Before the Always Event changes were implemented less than half (48%) of service user’s requests for equipment to allow them to contact people important to them were met within 5 minutes. The aim statement was not reached by 31st March 2018 largely because the team needed to move at a pace which service users could manage and feel comfortable with, including being able to contribute to all parts of the process. However, the aim statement was achieved in May 2018 and further measurement has shown this improvement has been successfully sustained. Since April 2019, the team has continued to review progress against their aim statement through verbal feedback from patients, carers and staff as part of an existing forum (the Patient Reducing Restrictive Intervention Group). As awareness of the Always Event spread within the organisation, the Business team visited the unit and provided more equipment (tablets) for service users.

Positive impact on service users

Positive feedback about the Always Event changes was gathered from service users and their relatives via a survey and directly through conversations. Service users valued being able to contact someone that is important to them when needed which has reduced their anxiety and improved their wellbeing. Similarly, relatives have valued being able to contact the service users more easily whilst they are an inpatient in the unit.

The value of working in partnership with service users not only ensured the changes reflected what was most important to them but it led to unexpected benefits for those involved. Their involvement in the Always Event activities, such as presenting, had a positive impact on their wellbeing, increased their confidence and enabled them to meet new people. Service users in the unit also developed new skills in learning how to use the equipment which created opportunities for them, such as online shopping, using Skype to contact
relatives and printing pictures.

Positive impact on staff

Staff were asked about their experiences of the Always Event through meetings and a survey. Whilst staff were initially concerned that the changes would involve additional work once they understood the aims of the Always Event and that the tasks were not onerous their buy-in was secured. The positive impacts the Always Event had on service users in turn led to improvements for staff due to improved relationships with each other, less incident reporting, improved communication with families and carers and help with writing care plans.

A positive unexpected outcome of the Always Event was an increase in collaborative working with staff working in other teams within the organisation, not only within the learning disability services but also with mental health services who want to use the Always Event approach to quality improvement.

The team has embarked on a second Always Event which is focusing on how staff and service users can have effective care meetings. Whilst progress has slowed due to the impacts of Covid-19, the skills learnt by service users in using the equipment as part of the first Always Event has helped with implementing this second one.