Case Study

Within Health and Social Care Northern Ireland (HSCNI) the Public Health Agency (PHA) is the major regional organisation for health protection and health and social wellbeing improvement. With a workforce of approx. 400 the PHA is a multi-disciplinary, multi-professional body with a strong regional and local presence. A key function within the PHA is to support the citizens of Northern Ireland to be involved with services in Health and Social Care, from design to implementation and evaluation. This includes learning from experience and feedback through the Regional Patient Client Experience (PCE) Programme, led by the PCE team within the Directorate of Nursing & AHP. To support learning across the whole of Northern Ireland the PHA partners with the six Health and Social Care (HSC) Trusts (including Northern Ireland Ambulance Service) to engage with the experience of service users, families & carers through the vital support of Trust PCE Facilitators.

Accessibility to health and social services is of fundamental importance yet despite efforts there remain significant challenges for many groups in our population. Patient experience becomes a vital learning tool for a system that aspires to be proactive in this mission to address accessibility issues. Improving accessibility is a priority within the annual business plan of the PHA Regional PCE Programme. In 2023 the PHA co-designed a process with the deaf community to provide a method for sign language users to share their feedback through an Online User Feedback Service (OUFS) using sign language. The OUFS, Care Opinion, is embedded across the HSCNI system and provides a way for service users to share in their own words the experience of their journey of care. The small number of stories submitted on the website relating to the deaf community demonstrated the difficulties that sign language users can experience, with particular reference to effective communication. In collaboration with the British Deaf Association (BDA) the PHA committed to empower sign language users to share their experience in their own language. The design of the process for sign language users was co-designed with four deaf clubs across Northern Ireland an in partnership with HSC Trusts.

The aim of this project was to develop a process for sign language users to share feedback on health and social care services on the Care Opinion website. The website already includes many features to enable accessibility, but it assumes the story teller can engage with the written word. Within the deaf community there are low literacy levels meaning that the method of sharing feedback in the written word directly on the website has access barriers. Through Care Opinion it is also possible to receive a response from the service, demonstrating that the service is listening. This too is in the format of the written word. Care Opinion can translate stories and responses into other languages, both in the written format and with audio functionality however this does not support the needs of sign language users. In Northern Ireland the 2 main sign languages used are British Sign Language (BSL) and Irish Sign Language (ISL). This project has enabled a method for people to share feedback in BSL and ISL and to view the responses by services in BSL and ISL following translation that is provided by PHA (www.careopinion.org.uk)

This project enshrined partnership with service users and stakeholders at each stage:

Engagement

Stakeholder liaison was the cornerstone of this project and the PHA worked in partnership with the BDA. At the planning stage the wider stakeholders were identified and meetings organised to ensure that service users and carers supported the design through to final outcome. We connected with the Sensory Support Services and Equality teams within HSC Trusts. These teams were pivotal to facilitate links with the deaf community groups. The process was co-designed with the Belfast Sign Language Forum, the Derry User Group, the Lurgan Deaf Club and with the stakeholders listed in February 2023. This involvement provided critical points on what was essential within the process and what challenges that the delivery of the process would have to consider. Meetings were also held with Strategic Planning and Performance Group (SPPG) within the Department of Health, Royal National Institute for Deaf people (RNID) and National Deaf Children’s Society (NDCS) to support implementation of the process.  Sign Language Interactions (SLI) was identified as a key partner to enable the sign language user to share their experience anonymously through the Care Opinion telephone number.

Testing

The process was tested at workshops with the Belfast Sign Language Forum and the Derry User Group in March 2023. The testing stage provided learning for all key organisations necessary in the delivery of the feedback method set out in the process, including PHA, Care Opinion, SignVideo (video relay service from SLI), and the translation supplier. Stakeholders were informed about the outcome of the testing and helped agree the finalised process.

Video production

The focus of this project was accessibility and it was of vital importance that the information and promotion of this process is accessible to sign language users. The BDA supported the PHA to produce a video in both BSL and ISL for this purpose. During planning for the video in April 2023 an invitation was extended to the 2 groups that had supported the testing of the process to ask for their participation. Service users kindly accepted and with good humour became actors within the videos as part of their continued involvement to support this project. The video was filmed in the two languages in May 2023 and the video production, led by the BDA, should be complete by the end of July 2023.

Promotion

From July 2023 the video will be made widely available to promote this new process across the deaf community to BSL and ISL users.

This project addresses the issue of accessibility and highlights importance of supporting all users of health and social care services in Northern Ireland to be able to share their experience through feedback, to have an open dialogue with HSCNI services, and to contribute to learning and improvement across the system.

This project demonstrates that services can make best efforts to communicate effectively with sign language users, that solutions to barriers can be co-designed, and that to learn it is essential to listen.

The outcome of this project is that sign language users have a continued method to be able to share experience on health and social care services in Northern Ireland in BSL and ISL². The impact of this is two-fold:

1. Service users will know that the system values their feedback, is listening through responses in sign language, and is addressing communication barriers
2. The services within HSCNI can engage with feedback from sign language users, have a robust method to facilitate this, and use the learning for meaningful action through an open and transparent platform.

The co-design approach adopted in this project built good relations and led to a method that was approved as fit for purpose by the deaf community. Sign language users and advocates have shaped the design of the process, tested the method in practice, and supported the positive promotion of the method.

Stakeholders conveyed during the project discussion that the deaf community has faced ongoing difficulties related to communication issues. The approach taken by this project is transferable in that services can involve service users in improving services and make efforts to build relationships with stakeholders.

²Process for Sharing a story on Care Opinion through SignVideo

The method for sharing experience through the OUFS, Care Opinion, is an established process for HSCNI and a priority for the Programme for Government (Department of Health). It is integrated as a key element of the PCE Programme for Northern Ireland which is led by the PHA in partnership with HSC Trusts. At an organisational level there is a commitment by the Senior Management teams of each HSC Trust to promote the OUFS and maintain a rolling programme of awareness, training and promotion with staff at a service level. This will include the process for sharing experience using sign language.

From the beginning, the project engaged with and listened to sign language users and stakeholders within the deaf community. The project was open to all comments in a supportive manner and is a good example of co-design. At the first meeting the frustration by service users on repeated issues they experienced and little sign of change despite promises of learning was clear. The project emphasis on building relationships and co-design in turn led to a conducive environment for design and improvement. The PHA in this project has highlighted the importance of accessibility for sign language users and has provided an ongoing platform for sign language users to participate in the conversation. Northern Ireland are the first nation to embrace a region wide OUFS which is accessible to people who use sign language.

The partnership between the PHA and BDA was vital to the project success in that every action was scrutinised to advocate for the deaf community, invitation to meetings and fora were facilitated, and the quality of the communication strived for excellence. Service users were engaged at each step and provided a meaningful contribution to the project, and their continual involvement is recognised and is the factor that makes this project stand out.

1-    Early engagement with stakeholders & partnership approach: Listening to and being guided by those that have lived experience and those who advocate provided an informed process and enabled solutions to challenges to be sought.

2-     Continual involvement & relationship building: The process was developed, then tested in workshops, and then filmed to create an informative video with the continued support from service users of 2 sign language groups, the HSC Trusts of these localities and BDA. The supportive relationships contributed to the feeling of inclusion and to the high quality of the outcome.

3-     Effective communication: It was important that information was made accessible during the project to everyone involved. There were 3 different languages that were used and this required sensitivity to each other, and logistical planning to ensure everyone was communicated with in their first language, e.g. Interpreter services, Participant Information in easy read³, video in BSL and ISL to explain method and promote how to share feedback.

4-     Integration into core service: The outcome of the project delivered a method for sign language users to share their experience and contribute to learning within HSCNI as part of the online user feedback core service already established in the system.