Personal and public involvement, and patient and client experience.

Contents

• Foreword
• Background
• Involvement Team
• Governance and Assurance
• Monitoring
• Patient Client Experience Monitoring
• Opportunities and Support for Involvement
• Knowledge and Skills
• What has been happening across the Trust
• Acknowledgement
• Get in touch
• Alternative formats

Foreword

I am pleased to present this year’s Involvement and Experience Annual Report, which sets out how we have worked alongside patients, families, carers, communities and staff to improve our services.

Over the past year, we have focused on building strong and trusted relationships with people and communities. At a time of increasing demand and pressure on services, hearing directly from those we serve is more important than ever. These partnerships help us not only to listen, but to learn and take action. We want the experiences of those who use our services to shape how care is planned, delivered and improved.

Across the Trust, we are increasingly using feedback to make real improvements. This includes learning from involvement activity, Care Opinion and 10,000 More Voices. This helps staff understand what matters most, reflect on their practice, and make changes that improve care. It also allows us to recognise and share what is working well.

We have seen clear evidence of how listening leads to change. Feedback has helped improve facilities, patient information and the way care is delivered. Involving people directly in service design is helping to make services more accessible, inclusive and responsive. Staff are also becoming more confident in using people’s experiences as a key source of learning.

Over the past year, we have also worked with partners and stakeholders to develop a new five-year Involvement and Experience Strategy. This will build on our progress and strengthen how we listen, learn and improve together.

I would like to sincerely thank everyone who has contributed to this work. The time, insight and honesty shared by patients, carers, families, communities and staff are vital. Their involvement ensures that what we learn leads to real and lasting improvements in the services we provide.

• Suzanne Pullins, Interim Chief Executive

A message from our Chair

As Chair of the Northern Health and Social Care Trust, and Non Executive Lead for Personal and Public Involvement, I am committed to ensuring that involvement is meaningful, inclusive and makes a real difference. Effective involvement happens when people feel supported, when their voices are valued and respected, and when their contribution is clearly reflected in decisions and service improvement. Understanding what matters most to people who use our services, their carers and our local communities is central to delivering high‑quality health and social care.

This is particularly important across the Trust’s diverse geography, where rural and urban communities can experience services very differently. Listening carefully to these experiences helps us respond more effectively to local needs and address inequalities in access and outcomes. Strong partnership working with the voluntary and community sector is essential to this ambition. These partnerships provide vital insight into the experiences of individuals and groups whose voices are not always heard and support us to design services that are accessible, responsive and inclusive.

By understanding what service users and carers want and expect, we are better placed to design services that are effective, sustainable and focused on what matters most. Bringing people with us on this journey strengthens decision‑making and supports the delivery of the best possible models of care. Service users and carers bring unique knowledge and lived experience, and I believe this expertise should be actively used to influence, shape and redesign services across the Trust.

• Anne O’Reilly, Northern HSC Trust Chair and Non-Executive PPI Lead

Background

Effective involvement is a key priority within the Department of Health’s ‘Health and Wellbeing 2026 Delivering Together strategy’. Personal and Public Involvement has been a statutory requirement in health and social care since 2009 and has been further strengthened through the Department of Health Co-Production Guidelines published in 2018.

Personal and Public Involvement describes the active involvement of service users, carers and local communities in the planning, commissioning, delivery and evaluation of health and social care services. It ensures that people who use services are meaningfully involved in shaping decisions that affect their care and support.

Patient and Client Experience standards have also been in place since 2009 and focus on ensuring that the lived experiences and voices of service users and carers lead to positive change and service improvement. Understanding patient and client experience is fundamental to delivering safe, effective and compassionate person-centred care.

The Northern Trust is currently co-designing a new five year Involvement and Experience Strategy which will set out our future vision, priorities and approach to Patient and Client Experience, Personal and Public Involvement and Co-Production. This work builds on existing good practice and aims to strengthen how involvement and experience activity is planned, supported and embedded across services, ensuring that the voices of service users, carers and communities continue to inform improvement and change.

The establishment of a central Involvement Team supports a consistent, coordinated and inclusive approach to involvement, helping to embed involvement, experience and co-production across the Trust.

Involvement Team

The Involvement Team plays a key enabling role across the Northern Health and Social Care Trust by providing strategic advice, practical support and training that strengthens involvement practice across services. We work alongside staff to embed meaningful Personal and Public Involvement, while also supporting service users, carers and members of the public to participate confidently and effectively in shaping services.

Our vision is for a health and social care system shaped by the voices of patients, carers and communities, where involvement is embedded as core business and influences how decisions are made, services are designed and improvements are delivered. We are committed to ensuring involvement is meaningful, inclusive and accessible, particularly for those whose voices are less often heard.

We believe that authentic involvement leads to better outcomes for people and communities. Lived experience provides critical insight that strengthens decision‑making, supports safer and more responsive services, and builds trust between communities and the health and social care system. When involvement is embedded early and sustained throughout decision‑making, it supports innovation, reduces inequality and drives person‑centred improvement.

Over the coming year, our focus will be on strengthening alignment between quality improvement, Personal and Public Involvement, Patient and Client Experience, reform initiatives and governance arrangements. By taking a more coordinated and system‑wide approach, we will support service transformation that is informed by feedback, experiences and partnership working, creating an organisation that listens, learns and improves together.

Governance and Assurance

Governance and Assurance Structure

• Anne O’Reilly, Northern Trust Chair, Non Executive PPI Lead
• Neil Martin, Divisional Director of Strategic Planning, Performance and ICT, and Lead Director for PPI
• Marianne Johnston, Assistant Director of Corporate Planning
• Kelly McBride, Head of Equality, Trust Lead for PPI and PCE
• Simon Darby, Shared Decision Making Project Manager
• Lynda Elliott, Engagement Manager
• Sarah Arthur, Patient Experience Facilitator
• Jan Taylor, Involvement Support Officer

We have a comprehensive range of governance, management and reporting arrangements in place to ensure that Personal and Public Involvement and Patient Client Experience is embedded across the Trust.

Assurance on compliance with statutory Personal and Public Involvement duties and Patient Experience standards is provided through the Northern Partnership and Population Health Committee. This is a standing committee of the Trust Board and is responsible for overseeing the Trust’s strategic approach to involvement and patient experience. The Committee is chaired by Anne O’Reilly, Trust Chair and Non‑Executive PPI Lead, and co‑chaired by Neil Martin, Director of Strategic Planning, Performance and ICT, who is the Trust’s Executive PPI Lead. The Committee meets quarterly and receives regular updates on involvement activity from across the organisation, providing robust oversight and assurance.

At divisional level, Trust Divisional Directors are accountable for ensuring that meaningful and proportionate Personal and Public Involvement is embedded within all aspects of their work. At corporate level, Trust Board holds overall responsibility for ensuring compliance with PPI legislation and for promoting high standards of involvement practice. Non‑Executive Directors provide independent scrutiny and challenge, ensuring that decisions are taken in the best interests of service users, carers and the public, and that due governance processes are followed.

The Trust is supported in this work by its Engagement Advisory Board, which plays a key role in ensuring that approaches to engagement reflect the needs and interests of the diverse communities it serves, with a particular focus on reaching those who are least heard or most hard to reach. The Board includes service users, carers, and representatives from the community and voluntary sector, and continues to both support and challenge the organisation to strengthen its engagement activity. Membership has also been strengthened through a targeted expression of interest process, helping to ensure broad and representative input.

Over the past year, members have been actively involved in and provided guidance on a number of key reviews and initiatives, including the Delayed Discharge Policy, the Patient Initiated Follow Up project, and the consultation and pilot of body‑worn cameras. Members have also been invited by the Trust Chair to contribute at a more strategic level and are now participating in a range of project boards, including the New Rural Transport Group, Learning for Improvement Group, Hospital and Home, and the Causeway Partnership Board. This expanded role supports stronger service user and community influence within strategic decision making across the Trust.

Monitoring

Personal and Public Involvement Monitoring

We continue to ensure that the monitoring of Personal and Public Involvement is embedded across all Divisions, with structured support available from the Involvement Team. This approach helps staff to plan, deliver and evidence meaningful involvement activity and provides assurance that service user and carer voices are reflected in service development across the Trust.

During this reporting year, a wide range of high-quality involvement activity took place across Divisions, with a total of 129 involvement projects submitted by the Trust as part of the annual monitoring return to the Public Health Agency (PHA). This is an increase of 28% from last year. The monitoring process provides assurance that the Trust is meeting its statutory duty to involve service users and carers in the planning, delivery and evaluation of services.

The data collected through monitoring supports a more consistent and robust understanding of involvement activity across the organisation. Using these data-driven insights, we are shaping an action plan that focuses on our key priorities for the year ahead, ensuring continuous improvement in how involvement is planned, supported and evidenced.

Involvement Human Library

During this reporting year, the Trust participated in the Involvement Human Library assurance process as part of the regional PPI monitoring approach. Through this process, four projects submitted via the involvement monitoring return were selected to take part in a Human Library style session with the Public Health Agency. This provided teams with the opportunity to discuss their involvement activity in more depth and to showcase how service user and carer input had shaped service design, delivery and improvement.

The purpose of the Human Library approach was to capture learning, identify examples of strong and effective involvement practice and highlight the positive difference that meaningful involvement can make. Service users contributed directly to the monitoring and assurance process, strengthening the quality, depth and authenticity of the learning gathered.

To support reflection and continuous improvement, feedback was encouraged from both staff and service users who participated in the process. This learning will be used to inform future enhancements to the monitoring and assurance approach. Projects that took part in the Involvement Human Library, along with other examples of good practice, will be shared on the regional Engage website as good news stories. This will help to celebrate involvement activity, promote shared learning and support the spread of effective practice across the Health and Social Care system.

Patient Client Experience Monitoring

Patient Client Experience within Northern Health and Social Care Trust is primarily captured through Care Opinion. Care Opinion is a safe and accessible online platform that enables patients, service users, families and carers to share their experiences of health and social care services.

Care Opinion was launched within the Northern Health and Social Care Trust on 3 August 2020. Over the past five years, the Trust has received over 4,000 stories, with 84 percent positive feedback recorded, these stories have been viewed 783,133 times on the Care Opinion website, demonstrating the significant reach and impact of patient and service user feedback. These stories form a vital part of Trust learning, quality improvement, and patient and client experience assurance.

During the past year alone, 1,245 stories of experience were published, reflecting ongoing engagement by patients, service users, families and carers across Trust services. This is a 13% increase in stories published during 2024/2025 and a 23% increase above our target.

The Trust’s commitment to Care Opinion is monitored by the Public Health Agency through the submission of an accountability framework report on a quarterly basis. These reports provide assurance in relation to the handling of feedback and focus on levels of story criticality, response timeframes, key themes highlighting what is working well and what could be improved, and evidence of learning and service improvement arising from stories of experience.

Patient Client Experience

Patient Client Experience feedback is collected through two main platforms:

• Care Opinion
• 10,000 More Voices

Care Opinion

Care Opinion was introduced in Northern Ireland in August 2020 and provides a trusted online platform where service users, families and carers can share their experiences of health and social care services. It enables real time, two way feedback and supports open and honest conversations between service users and staff. The Involvement Team continues to embed Care Opinion across the Trust as a key Patient Client Experience feedback mechanism, supporting a culture of listening, learning and transparency, and helping to build and strengthen trusting relationships between service users and service providers.

Read the Care Opinion Annual Report 2024/2025.

Over the last 12 months, the Trust received 1,245 Care Opinion stories from service users, providing valuable insight into their experiences of our services. This is a 13% increase in stories published during 2024/2025. These stories have contributed to a growing and timely source of real‑time feedback, reflecting what matters most to people who use our services and their carers.

Across the Trust, Care Opinion is now more widely recognised as a key service‑user‑centred performance indicator. It is routinely used as supporting evidence for quality improvement and assurance activity and helps services to identify both areas of good practice and opportunities for learning and improvement. Ward and departmental Care Opinion story reports are increasingly used to inform leadership walkabouts, enabling senior leaders to engage directly with lived experience and to support meaningful conversations with staff and service users about care quality and patient experience.

What has been working well

Stories of experience shared through Care Opinion highlighting what is working well and provide staff with a valuable opportunity to reflect on their own practice. This supports learning, helps staff recognise what they are doing well, and enables good practice to be replicated and strengthened across services. Care Opinion stories can also be used as supporting evidence for professional revalidation across a range of disciplines. In addition, positive feedback contributes to improved staff morale and promotes effective team working.

What could be improved

Less positive stories offer important opportunities to learn and improve, enabling services to respond openly to feedback and make changes that have a real impact on what matters to the people who matter. They help highlight where experiences have fallen short, provide insight into how services are experienced in practice, and support reflective learning at individual, team, and organisational level. When responded to well, less positive stories strengthen transparency, support a culture of listening and improvement, and demonstrate a commitment to taking people’s experiences seriously. They also help services identify recurring themes, reduce the risk of similar issues affecting others, and build trust by showing that learning from feedback leads to meaningful change.

A Staff Perspective on Care Opinion Feedback

“The impact of staff reading personal stories from women is integral to understanding what we are doing well as a team and also improvements that could be made to the service. When feedback is shared through the platform it contributes to staff well-being through understanding the positive impact to women when facilitating their care through pregnancy, birth and the early parenting period”.

• Rachel Chakravarti, Service Lead Continuity of Midwifery Care

Changes made as a result of sharing a story

Over the past 12 months changes have been made in response to Care Opinion stories. Two examples of the changes made are detailed below.

• Felt the area is not deaf/hard of hearing friendly

“On approach to the reception desk there is a perspex screen in front of the reception desk and when speaking to the receptionist you can only see the top of their head as the monitor covers the bottom half of their face, the screen and monitor creates a physical and visual barrier when trying to communicate”

Response from Audiology Lead: ‘I am happy advise that the removal of the perspex screen around reception in Audiology have been completed. Patients and staff are now able to communicate more effectively.’

Read the full story here: Care Opinion – Felt the area is not deaf/hard of hearing friendly

• Beds in day surgery

“I am wheelchair user and the beds in the day procedure unit are not suitable for anyone in a wheelchair they are too high for disabled person to transfer onto the bed the staff had to go to another ward to get a hoist as there is none in the day procedure unit.”

Response from Manager of the Day Surgery Unit: “We have been able to change our practice and make use of the profiling theatre table, available within the department, for any individuals having difficulty accessing the patient trolleys within the ward. This table is much more accessible for patients and can go lower to allow ease of access for transferring while maintaining individual independence.”

Read the full story here: Care Opinion – Beds in day surgery

Celebrating 5 Years of Care Opinion

In September 2025, the Northern Health and Social Care Trust joined colleagues from Care Opinion, the Public Health Agency, other Trusts and invited guests to celebrate the fifth anniversary of Care Opinion in Northern Ireland.

Feedback shared through Care Opinion continues to highlight the professionalism, kindness, empathy and compassion of Trust staff, alongside positive comments about communication, food quality and the cleanliness of facilities. These stories are shared across services as examples of excellence and good practice.

Less positive feedback also plays a vital role in service improvement. The lived experiences of service users, families and carers provide valuable insights that support learning and help shape meaningful changes to services. For individuals whose experiences have been less positive, Care Opinion offers an opportunity for dialogue, helping to rebuild trust and understanding.

At the anniversary event, Louisa Lapworth, Lead Nurse for Maternity Services, shared her presentation, “Care Opinion: A Catalyst to Connection.” Her story demonstrated the importance of listening and responding to feedback. Following a Care Opinion story, Louisa invited the author to discuss their experience further. What began as a telephone conversation developed into a face-to-face meeting, creating a powerful and emotional experience for both parties.

This example highlights Care Opinion in action, showing how meaningful engagement can strengthen relationships, support learning and drive improvements in care.

10,000 More Voices Projects

10,000 More Voices is a regionally coordinated Patient Client Experience programme which captures feedback through structured surveys and themed engagement activity across health and social care services. It provides an important opportunity for people to share their experience in a more structured way and supports the identification of themes, trends and learning at Trust and regional level. Feedback from 10,000 More Voices helps to inform service improvement, quality assurance and strategic planning, and complements the real time feedback gathered through Care Opinion.

The Involvement Team works in partnership with staff across all Divisions, providing advice, guidance and practical support to help services engage with feedback from both platforms and respond meaningfully. Lived experience is recognised and valued as a powerful driver for reflection and learning, encouraging staff to consider personal practice, identify areas for improvement, and develop quality improvement initiatives at ward, department and Trust wide levels.

The 10,000 More Voices programme is a regional patient and client experience initiative led by the Public Health Agency (PHA) in partnership with Health and Social Care Trusts. It is designed to capture the real experiences of people who use health and social care services across Northern Ireland, including patients, clients, families, carers and staff. The programme provides an opportunity for individuals to share their personal experiences of care, including what worked well, what could be improved, and what matters most to them.

The primary aim of 10,000 More Voices is to support a more person-centred approach to service delivery by ensuring that lived experience informs improvement, service design and future planning. Feedback is used to influence decisions at both local and regional levels, helping to shape policy, commissioning and service development.

A key feature of the programme is its use of narrative methodology. Participants are invited to share their experiences in their own words through themed surveys, and these stories are analysed using SenseMaker, an innovative tool that identifies patterns, themes and insights within large volumes of qualitative data. This approach enables a deeper understanding of experiences within complex healthcare settings and supports continuous learning and improvement.

By focusing on personal stories alongside other sources of feedback, 10,000 More Voices helps ensure that services are shaped by the voices of those who use and deliver them, supporting meaningful engagement and ongoing quality improvement across the health and social care system.

Position of current 10,000 More Voices projects

• My Experience of Using Equipment to live better with a Disability

The 10,000 More Voices project, titled ‘My Experience of Using Equipment to Live Better with a Disability’, was commissioned by the Department of Health following a review of Assistive Technology and Equipment Services carried out in 2024. One of the key recommendations from this review highlighted the need to engage with service users to better understand their experiences of assessment, provision and recycling of equipment.

The project spans a range of programmes of care, including older people, adult physical disability, children’s services, learning disability, dementia, and sensory impairment. A regional working group was established with representation from all relevant services, and an engagement strategy was agreed, including regular promotion through weekly social media activity. Active promotion and engagement will continue into 2026, with the project scheduled to close on 25 June 2026.

• Do Not Attempt Cardiopulmonary Resuscitation Workshops

Building on the project’s commitment to meaningful shared decision making in sensitive clinical areas, the Involvement Team has facilitated two staff workshops focused on DNA CPR (Do Not Attempt Cardiopulmonary Resuscitation). These sessions have provided an important opportunity for staff to explore the principles of shared decision making in the context of end-of-life care planning. A further workshop involving staff and patients/carers is currently in planning, reflecting our commitment to bringing all voices to the table in these important conversations.

Shared Decision Making

Shared Decision Making (SDM) is a person-centred approach that supports meaningful collaboration between healthcare professionals and patients. It involves open, two-way conversations where clinical expertise and evidence are combined with the individual’s values, preferences and personal circumstances. Through this process, patients are supported to understand their options, ask questions, and make informed choices about their care that reflect what matters most to them. This approach promotes dignity, autonomy and partnership, and is associated with improved health outcomes, better experiences of care, and increased confidence in decision making.

Medical Director, George Gardiner leads on Shared Decision Making. During the reporting period a Shared Decision Making Project Manager was appointed, to support in line with NICE guidance (NG197).

Service user involvement remains central to the development of this work. Service users are actively contributing to the Steering Group, ensuring that lived experience informs priorities, design, and decision making.

There are plans to build on this further by increasing opportunities for wider service user and carer participation across SDM projects, helping to ensure that approaches remain grounded in what matters most to those who use our services.

Practical steps have also been taken to raise awareness and promote a culture of shared decision making across the organisation. A co-designed SDM poster, developed in partnership with service users, has been rolled out across Trust sites. This resource helps to make the principles of SDM visible and accessible to both staff and patients, reinforcing the message that care decisions should be made together. Alongside this, a programme of pilot projects and engagement activity is ongoing, aimed at understanding how SDM is experienced in practice and identifying opportunities to improve communication, support decision making, and embed SDM as a core element of everyday care.

Opportunities and Support for Involvement

Service User Panels

The Trust has developed and sustained a range of Service User Panels in partnership with service users, carers, and the community and voluntary sector. These partnerships provide a strong and coordinated infrastructure that supports ongoing stakeholder engagement, co-production, and meaningful involvement across the organisation.

Key forums, including the Carer Pathway Steering Group and the Disability Consultation Panel, are user led and chaired by a carer and a service user respectively, reinforcing the Trust’s commitment to shared leadership and lived experience influence.

Involvement Network

The Involvement Team maintains and manages a large Involvement Network of more than 300 members (service users, carers, representative groups). Staff can use this network to:

• Seek input into service planning and review
• Co-design service information, such as leaflets and information packs
• Obtain service user feedback to shape service development

The Involvement Network makes involvement easier for staff by providing a ready, diverse pool of participants. Between April ’25 and end March ’26, members were offered 100 involvement opportunities, and 325 members participated in over 32 engagement activities. Members have provided essential feedback on videos, podcasts and information leaflets aimed at improving patient experience.

They have also contributed to the development of the new Involvement and Experience Strategy. Recruitment to the Network continues through the Trust website, social media channels, and through attendance at public events and information stands in various locations throughout the Trust area.

If you would like more information or to become a member of our Involvement Network:

• Email: InvolvingYou@northerntrust.hscni.net
• Telephone: 028 2766 1377

Get Involved

The Involvement Team continues to raise awareness of Care Opinion and Personal and Public Involvement among staff, service users, carers, and communities across the Trust. During the past year, the team has engaged directly with staff and service users at Ballymena Health and Care Centre, Causeway Hospital, and Antrim Hospital.

Through this work, involvement provides people with meaningful opportunities to share their experiences, views, and what matters most to them, supporting learning, service improvement, and the ongoing strengthening of person-centred care within the Northern Trust.

Support and Resources

Meaningful involvement happens when service users and carers feel supported, respected and confident that their views are genuinely valued and make a difference. The Trust is committed to creating an environment where involvement is inclusive, consistent and impactful.

The Involvement Team plays a key role in supporting staff to meet their Personal and Public Involvement responsibilities. We provide specialist training, advice and ongoing support to help staff develop the skills, confidence and knowledge required to involve service users and carers effectively and appropriately in the planning, delivery and evaluation of services.

Service users and carers are offered the opportunity to take part in induction training, which introduces Personal and Public Involvement, outlines the Trust’s statutory responsibilities, and explains the practical and emotional support available to those who choose to become involved. This helps ensure that people feel informed, prepared and valued from the outset. A range of resources are available on the Trust’s website and staffnet to raise awareness of involvement and to support both staff and the public. These resources provide clear information on how people can share their experiences, influence service development and get involved in ways that suit them.

Engage is a regional Health and Social Care website that supports experience and involvement across Northern Ireland. It provides health and social care staff, service users, carers and the public with access to information, opportunities and resources relating to Personal and Public Involvement, co‑production and partnership working. Engage also highlights involvement opportunities, shares learning from lived experience and promotes good practice across organisations.

There are many ways to stay in touch with us, including tweets, messages, posts and comments. We continue to share involvement opportunities through our Facebook page and Twitter account. We also use YouTube to share a range of content for service users, carers and the public, such as information videos and audio interviews.

Knowledge and Skills

Care Opinion Responder Training

Each story shared on Care Opinion is securely forwarded to the relevant service and staff to ensure it is listened to, reflected upon and used for learning. Every story receives a response from a trained responder, helping to ensure feedback is acknowledged in a timely and meaningful way. Responder training equips staff with the knowledge, confidence and skills needed to respond well to feedback. This year, 56 members of staff completed Care Opinion responder training. Responses to feedback, whether positive or less positive, are expected to be personal, empathetic and respectful. Ongoing dialogue between service users and staff supports openness, builds trust and demonstrates that patient experience is valued and used to inform service improvement. The Trust will prioritise strengthening Care Opinion responses by increasing the involvement of Band 7 responders. This reflects guidance that responses should come from staff closest to frontline services.

Care Opinion Awareness Training

Care Opinion Awareness training and Framing the Ask training are shared with staff across the Trust as part of the Trust’s Patient and Client Experience approach. The training supports staff to understand the importance of capturing patient and carer feedback through Care Opinion, an independent and real time feedback platform. It aims to strengthen staff confidence to invite feedback in a meaningful and respectful way, and to use people’s lived experiences as a key source of learning to improve the quality and safety of services. During this year, 787 members of staff completed this training.

Citizen Space

Citizen Space is an online consultation and engagement platform used to design questionnaires and surveys and to gather feedback from service users and carers. It continues to be a popular and effective method for collecting views and experiences, particularly for public facing consultations. Online survey tools such as Citizen Space offer a range of benefits, including the ability to reach large and diverse audiences, provide flexibility for people to respond at a time that suits them, and support consistent and structured data collection. They also allow feedback to be analysed efficiently, helping teams to identify themes and trends and to use learning to inform service improvement. To date, 317 accounts have been set up, with staff receiving appropriate training and ongoing support.

Service User Involvement Training

Through the Involvement Team, a comprehensive training programme is delivered to support staff to understand their statutory duties, apply best practice in involvement, and embed involvement into service design, delivery and improvement.

During the year, 1070 members of staff participated in involvement training sessions. In addition to formal training, the Involvement Team delivered 44 advice clinics, providing tailored support to staff planning or undertaking involvement activity. These clinics help staff to apply learning in practice and strengthen the quality and consistency of involvement across services. Looking ahead, the Trust will further expand access to training through the use of webinars, enabling greater flexibility and reach across services. Work will also continue to promote and support service user co delivery of training, reinforcing our commitment to partnership working and ensuring lived experience is central to learning and improvement across the Trust.

Specialist Training Sessions to Support Involvement

Plain English Training supports staff to understand what Plain English is and why it is essential when communicating with service users, carers and the public. It focuses on simplifying language, avoiding jargon and writing in a clear, accessible way. The session also explores how document layout, structure and presentation can improve understanding and encourage better engagement with service users and carers. Practical examples are used to help staff apply Plain English principles to everyday documents, reports and communications.

Facilitation Training helps staff to develop the skills and confidence needed to plan and facilitate meaningful involvement activities with service users, carers and the public. It covers good practice in designing and running focus groups, meetings and wider engagement events, with an emphasis on creating safe, inclusive and supportive spaces for discussion. The session also introduces a range of facilitation tools and techniques and considers the use of technology to support effective facilitation, recognising the ongoing use of both in person and online involvement activities.

During the year, 40 members of staff took part in these specialist training sessions.

What has been happening across the Trust

Involvement and Experience Strategy Engagement

The Trust is developing a new five-year Involvement and Experience Strategy. This new Strategy will set out our priorities and how we will continue to involve and listen to service users, carers and communities. This work supports our legal duty under the Health and Social Care (Reform) Act (Northern Ireland) 2009 to involve people in decisions about their care and services.

The Involvement Team led a programme of divisional Involvement and Engagement workshops to help shape the Strategy. A total of 168 staff attended, representing a wide range of roles and services across the Trust. The workshops gave staff the opportunity to reflect on what is working well, share examples of good practice, and highlight challenges. They also reinforced that involving service users, carers and communities is essential to delivering safe, high quality, person-centred care.

Feedback from these workshops showed that staff value involvement and want to do it well. They highlighted the importance of making involvement part of everyday practice, rather than an add-on. Staff also identified a need for more practical support, simple tools and ongoing training to help them involve people effectively and capture feedback in a consistent way. This reflects the wider role of the Involvement Team in supporting staff through guidance, resources and training.

Alongside this, a survey was carried out with service users, members of the Involvement Network and our service user groups. This asked for views on how the Involvement Team can better support involvement and experience work across the Trust. The survey focused on how to make involvement more meaningful, inclusive and effective, and how we can improve the way we gather and learn from feedback and lived experience, including through approaches such as Care Opinion and 10,000 More Voices.

The feedback from service users and carers highlighted what matters most to them. This included being listened to, being involved at an early stage, having clear communication, and seeing that their feedback leads to real change. This work complements the feedback gathered from staff and helps ensure the Strategy reflects both professional experience and lived experience.

All feedback gathered through the workshops and the survey will be used to identify the key priorities for the new Strategy. This will help ensure the Strategy is based on real experiences and supports the Trust to continue improving services in partnership with staff, service users, carers and communities.

Live Patient Feedback

Live patient feedback means getting views from patients while they are still in care or soon after they use a service. This helps the Trust respond quickly, deal with any issues straight away and recognise good care, instead of waiting for survey results later. It supports a culture of listening and responding. Feedback can be used at ward, team and individual level to make improvements. Patient experience is seen as an important part of safe, high quality care, alongside clinical treatment.

Live patient feedback helps involve patients and families as active partners in care. It can also act as an early warning system by highlighting problems such as poor communication or unmet needs before they become more serious. It also supports openness and good governance, including meeting the Duty of Candour and promoting a fair and learning culture.

The Involvement Team first tested live patient feedback in the Causeway Ambulatory Unit in December 2025, using a simple survey. Weekly dashboards were shared with ward staff to show the feedback.

A second pilot then took place with emergency surgical patients in Causeway and Antrim hospitals. Staff and service users worked together to design a survey specific to surgical care, so that the questions were relevant and meaningful.

The survey ran for four weeks from 30 March to 27 April 2026. It was available using QR codes and paper copies. There were 105 responses in total, with 69 from Antrim and 36 from Causeway. The Involvement Team monitored feedback and shared weekly updates with surgical teams. Results were very positive, with high levels of satisfaction. In Antrim, 96% of patients said they were satisfied or very satisfied with their safety, and 94% said staff treated them with compassion, respect, privacy and dignity. In Causeway, 97% felt safe and all respondents reported positive, compassionate and respectful care.

In 2026 we will continue to pilot Live Patient Feedback, moving on to Cancer Services and then expanding into community services. We will also introduce a “You Said, We Did” approach to show how feedback has led to changes and improvements. Our main focus will always be on making real improvements, not just collecting data.  Most importantly, patients and their families will be fully involved. They will be included in improvement work and have a voice at every stage of planning, design, and delivering services.

This is Our Health

The Health Minister, Mike Nesbitt, launched a new engagement programme, ‘This is our Health’, aimed at developing an agreed “health and care deal” between the public and Health and Social Care services in Northern Ireland.

The initiative focuses on listening to people’s views on what they need from health services and the role they can play in improving them.

This represents a shift from traditional approaches, placing greater emphasis on public input and shared responsibility. The programme aligns with the Reset Plan and the Neighbourhood Model of Care, supporting efforts to build a more sustainable, responsive, and effective health system.

The Involvement Team were part of the beta testing event at Ballymena Health and Care Centre which started the conversation with our service users and carers on what they need from health services and the role they can play in improving them.

Involving Hard to Reach Groups

The Involvement Team, working with the Engagement Advisory Board, has taken an exciting step forward in improving how we connect with hard to reach and underrepresented groups.

A Trust wide survey highlighted the importance of stronger partnerships, trusted community outreach, accessible non digital communication and culturally tailored support. Building on this momentum, we brought survey participants together in November 2025 for an event focused on sharing good practice and strengthening inclusion across our communities.

One of the most positive outcomes has been the co-designing of a new engagement toolkit created in partnership with the organisations and individuals who understand these challenges best. The toolkit aims to enhance the reach to those seldom heard voices.

Carers and staff share experiences on Carers Rights Day

Carers Rights Day brought carers and staff together for a morning of Café Conversations to inform the development of the new Carer Strategy and Action Plan. The sessions created a supportive space for focused discussion, enabling participants to share experiences, reflect on challenges and listen to one another. Linked to the theme “Know your rights, use your rights,” carers were encouraged to use their voice and speak openly about their experiences of health and social care services. Discussions highlighted that navigating a large organisation can feel overwhelming for many carers, reinforcing the importance of recognising carers as valued partners and taking time to listen to their experiences. There was mutual understanding of both carer and staff challenges, with recognition that improved internal connections between services and access to the right support can significantly enhance carers’ experiences.

The session outlined key priorities identified through regional and local engagement, including carer identification, communication, access to information, carers’ health and wellbeing, advocacy, navigating services, and transitions. The Trust emphasised the importance of hearing from a wide range of carers to ensure the strategy reflects lived experience alongside the realities faced by staff.

Feedback from the event also highlighted the need for greater community outreach, increased awareness of available supports, and a stronger focus on supporting staff to improve the experience of carers and service users.

The event was well attended, with 70 carers contributing despite challenging weather, and demonstrated strong commitment from both carers and staff. The café conversation approach has helped lay the foundation for a co-produced model to inform and support the implementation of the Carer Strategy going forward.

Refurbishment of Ballymoney Child Development Centre

The refurbishment of Ballymoney Child Development Centre has been shaped by feedback from service users, parents and carers, ensuring that improvements reflect lived experience and what matters most to families. This has informed the development of enhanced accessible facilities, including specialist equipment, and improved clinical spaces that support safe, dignified care.

As a result, the Centre now offers a more inclusive, welcoming and family‑friendly environment, alongside improved use of space and a calming setting that supports wellbeing and the delivery of high‑quality, person‑centred care.

Crisis Resolution and Home Treatment Team

The Crisis Resolution Home Treatment Team (CRHTT) continues to promote meaningful engagement with carers and service users through monthly carer information sessions. These sessions provide a supportive forum to share information on available resources, increase understanding of the service, and gather valuable feedback to inform ongoing service development and improvement.

A co-production approach within this forum has supported the development of Service User and Carer Information leaflets, designed to provide clear, accessible information about the CRHTT and how it delivers acute mental health care in the home. These resources aim to improve understanding of the service, support informed involvement, and enhance the experience of care during periods of crisis.

Building on this work, the team is contributing to the “My Journey” project through the development of a patient information and awareness video. This resource will help raise awareness of the Home Treatment model, highlighting its role in providing intensive support at home as an alternative to hospital admission, and in facilitating early discharge where appropriate—supporting improved outcomes and reduced length of stay.

This ongoing work reflects the team’s commitment to embedding service user and carer voice in service design and delivery, ensuring care remains person-centred, accessible, and responsive at times of greatest need.

Tissue Viability Team

In the last year, our Tissue Viability Team Lead collaborated with a service user to enhance patient involvement in pressure ulcer prevention and management education, with a particular focus on shared decision making.  The service user delivered a powerful and poignant presentation at the Tissue Viability Network Northern Ireland in November 2025, where they shared their lived experience of pressure ulcers with health care professionals involved in pressure ulcer care. This provided valuable insight into the real-life challenges patients face and highlighted the importance of incorporating patient perspectives into education and clinical practice.

Building on this, the Tissue Viability Team Lead delivered a session at the Society of Tissue Viability Conference in April 2026, centred on shared decision making in pressure ulcer prevention and management. A recorded patient narrative was used as a key component of the session, enabling delegates to better understand the complexity of balancing clinical recommendations with an individual’s personal priorities, independence, and quality of life.

Through this lived experience, the session demonstrated how collaborative clinician–patient discussions can support more meaningful, individualised care planning. The sessions emphasised the importance of open dialogue, active listening, and co-creating prevention strategies that respect the individual’s lifestyle and preferences, rather than relying solely on rigid, clinically driven interventions.

Feedback from both events was extremely positive, with participants describing the sessions as impactful and emotionally powerful. One delegate reported that the presentation brought them to tears. This approach reinforced the value of patient involvement in education, improving understanding of pressure ulcer prevention while promoting engagement, adherence, and person-centred care by recognising patients as equal partners in decision making.

Raising Awareness of Inflammatory Bowel Disease Through Lived Experience

To mark World Inflammatory Bowel Disease Day, the Trust worked in partnership with the Causeway IBD Patient Panel to raise awareness and encourage seeking help earlier. Service users played a central role by sharing their personal experiences of living with IBD, helping to reduce stigma and promote open discussion about bowel health.

Panel members described the challenges of diagnosis, treatment, and living with long term conditions, while also highlighting the positive impact of accessing the right care and support. Their messages reassured others that they are not alone, encouraged people to speak openly about symptoms, and reinforced the importance of seeking advice without embarrassment.

By placing lived experience at the heart of this work, the Trust supported more open conversations and increased confidence among individuals to seek help at an earlier stage.

The Parents’ Forum

The Parents’ Forum was established in January 2024 to support meaningful engagement between Children and Young People’s Services and parents and carers with experience of using services. The forum provides a regular, structured opportunity for service users and staff to share experiences and identify areas for improvement.

Service users are actively involved in shaping services through feedback on key processes, including Child Protection, and on information materials such as leaflets and parental contribution forms. Their lived experience has directly informed changes to ensure processes are more accessible, transparent and user friendly.

The forum includes parents with a range of experiences across children’s services, ensuring diverse perspectives are represented. A supportive approach has been adopted to enable participation, including neutral venues, practical supports and clear communication.

Feedback from service users has already led to tangible improvements, including the development and revision of key documents and greater consideration of how services are experienced by families. Importantly, this feedback has been acted upon and has also contributed to staff learning and development through training.

This work demonstrates the value of meaningful involvement in improving service design, communication and experience, particularly within services that can be complex and emotionally challenging.

Food is Medicine

Service users and carers played a central role in informing and shaping this quality improvement initiative. At the outset, direct engagement with patients was undertaken to understand their experience of nutritional care while in hospital. This included structured feedback on snack provision and perceived weight loss during admission. Findings highlighted that while snacks were offered, these were often limited in variety and nutritional value, with many patients reporting concerns about weight loss. This early engagement provided a clear evidence base for improvement.

In addition to quantitative feedback, qualitative insights from patients further strengthened the case for change. Service users, including those with specific dietary needs such as dysphagia, shared their experiences of limited choice and repetitive options. These lived experiences provided valuable insight into gaps in current provision and helped to identify priority areas for improvement.

Service user feedback directly informed the design and development of interventions. A patient-centred approach was adopted, ensuring that changes to snack provision reflected the needs of different patient groups across clinical areas. In particular, feedback from patients with swallowing difficulties led to a significant expansion of modified texture snack options, improving both choice and accessibility.

Engagement with patients and carers continued throughout the implementation phase. Ongoing feedback supported continuous refinement of the initiative, ensuring that improvements remained responsive to patient need and experience. This included feedback on new snack options and enhanced nutritional supports, which informed further developments within the project. As a result of this involvement, patients and families have reported improved satisfaction with nutritional care and overall experience. Feedback indicates enhanced comfort, greater enjoyment of food, and improved dignity, particularly for individuals receiving end of life care. Improvements have also supported a more equitable experience for patients with eating, drinking and swallowing difficulties.

This work demonstrates the value of meaningful service user and carer involvement in identifying issues, shaping solutions, and evaluating impact. The integration of lived experience has been fundamental to delivering improvements in both patient outcomes and experience.

Lessons from an Elephant

This initiative aimed to raise awareness of palliative care, grief and bereavement among Year 8 pupils in Dunclug College. It was developed through a collaborative, co‑production approach involving education staff and young people.

Service users, in this case pupils, were actively involved in shaping the project. A focus group with students contributed to key decisions, including the naming of the project and informing the design of the workshop. Their input helped ensure the content was relevant, age appropriate and accessible. Pupil feedback also influenced the format and delivery of the sessions, which combined education, discussion and creative activities.

The inclusion of artwork, which captured personal memories and was displayed within the school, provided an opportunity for pupils to express their experiences and encouraged wider peer engagement.

Engagement extended beyond the classroom, with resources designed to support conversations at home with families, helping to broaden awareness within the community. Feedback was gathered from pupils, teachers and parents, supporting ongoing learning and refinement of the approach.

As a result, the project demonstrated improved understanding among pupils and supported open and meaningful conversations about grief and bereavement. It highlights the value of involving young people in the development and delivery of initiatives that impact on their learning and wellbeing.

Development of New Carer Group ‘Nourish’

Social Workers within the Older People’s Social Work Team identified that some carers were experiencing difficulties accessing local carer support services. This lack of access was impacting on their emotional wellbeing, particularly due to reduced opportunities for social engagement and peer connection. In response, a co-production approach was adopted to develop a new peer support group for carers in the Mid-Ulster area, open to anyone with a caring responsibility.

The group, ‘Nourish’, provides a welcoming space for carers to connect with others, focusing on their own wellbeing, as well as engage in a range of activities and opportunities. It aims to foster a supportive, inclusive, and empowering community.

Since its launch in January 2026, the group has been meeting on a fortnightly basis. Activities to date have included afternoon teas, information sessions delivered by various voluntary and community organisations, flower arranging, and healthy eating workshops-arranged in partnership with Mid Ulster Council and Mid Ulster Loneliness Network.

It is hoped that Nourish will continue to be a sustainable, long-term initiative within the area. Moving forward, there are plans to further embed the co-production model by supporting carers to take an increasingly active role in the planning and delivery of the group.

New members are always welcome; a quarterly newsletter is sent out in advance to advise of upcoming dates/ plans.

Pain Management Programme

The Pain Management Programme (PMP) multidisciplinary team continuously engages service users in the evaluation, design, and redevelopment of our 11-week group programme. In 2025-26, we approached this with a renewed emphasis on feedback during our midpoint and endpoint individual reviews; collating comments from live sessions; and revising our service user experience survey to be sent at the point of discharge.

Based on the perspective of our service users, we identified a gap in provision relating to information or support tailored to Carers and Family members of individuals experiencing chronic pain. Beginning with a scoping literature review exercise, we started asking “What might good carer and family involvement look like?” Alongside this, we incorporated materials into our psychology-led sessions on emotional wellbeing in the context of boundaries and interpersonal relationships. We restarted our focus group opt-in initiative, and we plan to run a series of workshops in 2026-27 to establish a deep understanding of the needs of service users, carers and families prior to full implementation of the new project.

Carers Creative Writing

“We are more than just carers, we are writers. This project has allowed us to come together, to share experiences and help others, and to take some time out to write and to think. It’s been really therapeutic. Writing has given us an identity and purpose outside of caring.”

A creative writing group made up of carers presented a collaborative piece of artwork to the Northern Trust Board, which will go on display at Trust headquarters in Antrim.

Established in 2021 and supported through group sessions and mentoring, the initiative has enabled carers to share their experiences, connect with others, and develop their creative skills. Participants described the group as therapeutic and empowering, helping them to feel less isolated and to build an identity beyond their caring role.

The project culminated in the creation of a textile artwork, developed with a local artist using meaningful materials contributed by group members. The initiative highlights the value of providing safe, supportive spaces for carers and reinforces the Trust’s ongoing commitment to recognising and supporting their vital role.

Caring About Equality

During Carers Week 2025, with the theme ‘Caring About Equality’, a conference was held to bring together carers from across the Trust area to highlight the inequalities experienced by unpaid carers. Carers of all ages often miss out on opportunities in education, employment and their personal lives due to their caring responsibilities.

The conference included an expert panel made up of carers, young carers and staff who are also carers. They shared their lived experiences, outlining the barriers and challenges they face, along with the positive aspects of their caring roles. The carers’ writing group also contributed by reading pieces that reflected their personal experiences of caring. The event was hosted by Paul Clark MBE, with Professor Suzanne Martin delivering the keynote address, sharing insight from her own experience as a carer.  Approximately 200 carers attended the event. Participants were asked ‘what matters to you?’ in relation to their caring role. Feedback gathered on the day has informed the development of the draft Carer Strategy for the next five years.

Co-designing Comfort from Day One

On World Mental Health Day 2025, Mental Health Acute Services launched Service User Admission Packs across inpatient wards. These packs were co-designed with service users and carers, using lived experience to ensure that people feel informed, reassured, and treated with dignity and compassion from the moment they are admitted.

The packs include clear, easy-to-understand information about what to expect during admission, alongside details of key services involved in care such as Occupational Therapy, Physiotherapy and Psychological Services. They also contain essential comfort items, including toiletries and hygiene products, to support individuals who may arrive without personal belongings. This helps to promote dignity, equality and a sense of care from the outset.

By explaining ward routines, safety measures and available supports in a simple and compassionate way, the packs aim to reduce anxiety and build trust between patients and staff at what can often be a difficult and uncertain time. Feedback from service users has been very positive, highlighting the packs as a meaningful step in improving the inpatient experience and helping people feel valued and respected.

This initiative is a strong example of co-production in action, with service users and carers directly shaping improvements based on what matters most to them. Building on this success, further work is underway through the “My Journey” project, including the development of a patient information video and a formal feedback survey. These will help ensure that service user voices continue to guide ongoing improvements and support a more responsive, person-centred approach to care.

Care Opinion Acute Mental Health Services

Within Acute Mental Health Services in September 2025 as part of the Scottish Improvement Leader course one of our Service Improvement Managers initiated a project to improve feedback from service users and carers across our 4 mental health inpatient wards.

People with lived experience made a significant and highly valued contribution to this QI project to introduce the use of Care Opinion across four mental health inpatient wards. Their involvement helped ensure that the project remained person centred and grounded in the experiences of service users and carers. Individuals with lived experience played an important role in supporting discussions about Care Opinion during awareness sessions with ward staff, service users and carers.

They also engaged directly with service users and carers to explore their experiences of providing feedback, helping to identify both the barriers and enablers to using Care Opinion within inpatient settings. This included identifying concerns relating to confidence, accessibility, anonymity, digital access and fears around how feedback may be received or responded to. Their insights were instrumental in shaping improvement ideas on how feedback is promoted, received and responded to across wards.

This has included influencing the language used in patient information, supporting more accessible approaches to how feedback is collected and promoting a culture where feedback is viewed as an opportunity for learning and improvement. They also captured positive feedback from service users who were unsure how to provide feedback and supported them to be able to share their stories. The contribution of people with lived experience greatly strengthened the project and highlighted the value of meaningful co-production in service improvement initiatives.

Mental Health Liaison Service

The Mental Health Liaison Service (MHLS) continues to actively seek and utilise service user feedback to inform and improve care delivery for individuals presenting at times of acute crisis and vulnerability, including those attending Emergency Departments or admitted to general acute hospital settings.

A structured Patient Satisfaction Survey has been implemented to capture the experiences of service users and, where appropriate, their families or carers. The survey focuses on key aspects of care, including timeliness of response, communication, involvement in care planning, and the provision of information and crisis support. It also explores whether individuals felt listened to, understood, and treated with compassion and professionalism during their interaction with the service.

Importantly, the survey provides opportunities for qualitative feedback and invites participants to engage further through focus groups, supporting deeper service user involvement in shaping service development. Insights gathered through this process are used to identify areas of good practice and improvement, ensuring that the service remains responsive, person-centred, and aligned to the needs of those experiencing mental health crisis. This work reflects the service’s commitment to continuous improvement through meaningful engagement with those who use the service at critical points in their care journey.

Safety Intervention Champions

Since November 2025, the Safety Intervention Training team has worked alongside a Service User by Experience who attends all sessions involving holding skills and restrictive practices.

His contribution has had a significant impact on training quality. He shares his experiences as a former inpatient, offering insight into relationships with staff, ward roles, interactions with other patients, and the importance of meaningful activity in supporting wellbeing. He also discusses his ongoing recovery, helping staff understand the longer-term impact of care.

Staff feedback has been consistently positive, with many highlighting how his input refocuses training on the patient experience and deepens understanding of the emotional impact of restrictive practices.

He also attends Safety Intervention Champion meetings, where he supports staff to promote least restrictive approaches and develop person-centred crisis plans. His combined lived and professional experience provides valuable insight, supporting more informed and compassionate practice.

Healthy Starts at Home Public Health Dietitians and Paediatric Dietetics Teams

Healthy Starts at Home is a pilot 12-week healthy eating and lifestyle programme for families of children aged 4–11 years referred to paediatric dietetics for weight management. Delivered in partnership by the Public Health Dietitians team with funding from NHLP CTLB, the programme was developed in response to the recognised need to support families to “wait well” while awaiting dietetic appointments, ensuring earlier access to guidance and support.

Personal and Public Involvement (PPI) was central to development. A Microsoft Forms survey (Nov–Dec 2025) gathered responses from 56 service users via social media, partner organisations, and direct contact. Findings highlighted preferences for a family-focused programme combining face-to-face and virtual support, with an emphasis on overall health rather than weight. Families valued engaging children’s activities, parent education, regular digital contact, and practical resources such as recipes and reward charts. Service users also selected the programme name.

These insights directly shaped the pilot (Feb–May 2026, with 18 families). The programme included weekly supportive texts with videos and activities, two face-to-face sessions, two online evening workshops, and a resource pack. The programme concluded with celebration events held in Antrim and Coleraine, where participating families came together to recognise their achievements and received certificates for completing the programme.

Early feedback is very positive, with all respondents indicating they would recommend the programme, felt supported to make changes, and were confident in maintaining these changes.

Overall, embedding PPI ensured the programme was relevant, acceptable, and supportive, improving engagement and enabling families to adopt sustainable lifestyle changes while waiting for specialist care.

Healthy Bones

Public Health Dietitians were asked to update the existing Healthy Bones leaflet, which is provided by Public Health Nursing during the Primary 1 health appraisal.  This project was undertaken by Nutrition Student, Laura McLoughlin and funded by NHLP.

To inform the redesign, a Microsoft Forms survey was distributed to both staff and service users. The survey was promoted through Trust social media channels and partner organisations and ran over a set period (insert dates). To encourage responses, participants were entered into a draw to win a family swim voucher. In addition, a colouring competition was held, inviting children to design a logo.

Feedback indicated that users wanted:

• A child friendly resource
• Clear, easy to read content with less text and more visuals
• Information on dairy alternatives
• Signposting to a supporting information video
• A simple A4 information leaflet format

Based on this feedback, a colourful and engaging leaflet was developed using child-friendly characters:

• Captain Calcium
• Molly Milk
• Benny Bean
• Jumping Jackie
• Danny D

Each character represents key elements needed for maintaining strong, healthy bones.

A children’s colouring page was also included, with the winning design featured on the back cover alongside signposting to the Public Health Dietitians’ YouTube channel.

During the final stages of design, the leaflet was presented to the young people in the YMCA in Larne for feedback, which was very positive.

To date, feedback from Public Health Nursing has been extremely positive, with particular recognition of increased user engagement with the leaflet. This project further highlights the value of involving service users in development, encouraging innovative approaches and helping teams to think creatively.

Captain Calcium

Public Health Dietitians updated the Healthy Bones leaflet, distributed during Primary 1 health appraisals. The redesign was undertaken by Nutrition student Laura McLoughlin and supported by NHLP funding.

A survey of staff and service users, alongside a children’s colouring competition, informed the redesign. Feedback highlighted the need for a child-friendly, visual fact sheet style resource with less text, information on dairy alternatives, and links to a supporting video.

During the final stages of design, the leaflet was presented to the young people in the YMCA in Larne for feedback, which was very positive.

The final leaflet uses engaging characters (e.g. Captain Calcium, Molly Milk) to promote key bone health messages, includes a colouring page and sign posting to short information videos on the Public Health Dietitian ‘Eating Well’ YouTube channel.

Feedback Public Health Nursing has been very positive, with increased user engagement noted. This project demonstrates the value of involving service users to create more engaging and effective resources.

The Palliative Care Service Improvement Team

The Palliative Care Service Improvement Team continues to engage with service users in a wide range of improvement activities. The overall aim is to improve the care for people living with a palliative condition and support for those important to them. In addition, the team engage with the public to improve understanding of palliative and end of life care so they are better equipped to support people in their community who are at end of life or bereaved. Some new initiatives:

What to expect when someone is in the last days and hours of life

Information for families and caregivers

This booklet is to support and prepare families and carers of those who are dying to help them understand what they may see and provide practical ways to support the person at this stage. Service user feedback helped steer the sensitive wording required and their endorsement also gave professionals confidence to introduce it.

Compassionate Schools Work

A Marie Curie Compassionate Schools report, 2024, highlighted a lack of support in the school system for children who are anticipating or experiencing bereavement. A Compassionate Schools working group was established to explore the experience and needs of school staff in our Trust area. The SIT joined with other Trust staff from palliative care, HWB, CAMHS and bereavement services. Community and Voluntary and Education sectors are represented. There is also input from local teachers and a service user with lived experience.

Through an initial survey local schools identified areas where they lacked confidence and wanted help with supporting children either anticipating or experiencing a bereavement. The team developed a road map of key training, resources and best practice examples, designed specifically for local school staff. This is to be hosted soon by the CYPSP (Children and Young People’s Strategic Partnership) and Bereaved NI website to be available regionally.

When Someone Dies

This project developed an accessible bereavement resource, ‘When Someone Dies’, to support people with learning disabilities, alongside guidance for families, carers and staff. The work was informed by evidence highlighting the exclusion of people with learning disabilities from conversations about death and bereavement. Service users were centrally involved through a co-production approach. Members of the Adult Learning Disability Service User Forum contributed directly to the development of the booklet, providing feedback on language, images and overall accessibility.

Their lived experience ensured the resource was relevant, understandable and appropriate to their needs. Service user input shaped key aspects of the resource, strengthening its usability and supporting a person-centred approach. Their involvement also highlighted wider barriers, including communication challenges and the need for staff confidence in discussing bereavement.

In addition to co-design, service user perspectives informed how the resource would be implemented in practice. This included recognising the need for clear guidance and staff training to support consistent and sensitive use.

As a result, the resource has supported improved confidence among staff and carers in having open and honest conversations about death, and has contributed to more inclusive, equitable bereavement support for people with learning disabilities.

This work demonstrates the value of meaningful service user involvement in co-producing accessible resources and improving person-centred care for individuals with additional communication needs.

‘Breast Cancer Now’ Support Group

A co-designed initiative was developed in partnership with Breast Cancer Now, NHSCT oncology and palliative care staff, and a service user, in response to the identified lack of local support for people living with secondary breast cancer. The group is open to anyone across the Trust area with advanced breast cancer.

A steering group, including service users, worked collaboratively with Breast Cancer Now to establish and shape the service. The group now meets monthly in Ballymena and is accessible to anyone who is able to travel. Sessions are facilitated by a trained therapist, providing a supportive and safe space for peer support, shared experiences, and emotional wellbeing.

This initiative reflects a strong commitment to meaningful involvement, with service users playing a key role in identifying need, shaping the response, and supporting ongoing delivery.

Co-design of the new Macmillan Information and Support Centre

Service users and stakeholders have been actively involved in the co-design of the new Macmillan Information and Support Centre at Antrim Area Hospital since 2023. Engagement has taken place at each key stage of the project, including feasibility, business case development, pre-construction, and the current construction phase.

At the fifth engagement event on 18 May 2026, five service users worked in partnership with staff to review and provide feedback on proposed furniture options, including colour and style. Their input directly influenced final design decisions and will help ensure that the environment is welcoming, comfortable, and responsive to the needs of those who will use the service.

This ongoing approach demonstrates a strong commitment to meaningful involvement, ensuring that lived experience informs service design from planning through to delivery.

The project has also been recognised as an example of good practice in involvement. It was highlighted by the Public Health Agency, and in June 2025 one staff member and two service users contributed to the Involvement Human Library event, sharing their experiences of co-design and the value of partnership working in shaping services.

Community Kids Wellbeing Day

NHSCT, in partnership with the Mae Murray Foundation, delivered a Community Children’s Health and Wellbeing Day at the Joey Dunlop Centre, engaging 78 families.

The event provided families of children with disabilities, complex health needs and developmental concerns with informal, direct access to a broad range of statutory services and community organisations in one accessible setting. Families were able to explore information stands, attend practical workshops and engage with professionals in an environment designed around their needs.

Feedback from attendees was highly positive, with 100% of respondents stating they would recommend the event. A total of 84% reported increased awareness of available services, while 76% felt more confident in supporting their child’s health and wellbeing. Workshop sessions on topics such as sleep, nutrition, continence and emotional wellbeing demonstrated significant improvements in parent confidence, in some cases increasing from no confidence to over 80% following a single session.

All 14 participating services and organisations received positive feedback. Feedback highlighted the value of a supportive, inclusive environment where families felt understood and children could engage comfortably. The event was described as providing meaningful connection, accessible information and renewed confidence for families navigating complex systems of care.

Minor Injuries Awareness

In partnership with the Medicine and Emergency Medicine (MEM) Service User and Carer Engagement Panel, an information poster was co-designed to improve awareness of Minor Injuries Units across Antrim Area, Causeway and Mid Ulster Hospital sites. The poster provides clear information on opening hours, methods of access and guidance to support appropriate use of services.

Panel members contributed throughout the process, shaping the content, layout and messaging to ensure the information is accessible and relevant.

Their lived experience also informed decisions on how and where the resource should be shared to reach local communities.

A range of dissemination methods was implemented based on the Panel’s recommendations. This included distribution of posters and leaflets across hospital sites and pharmacies, promotion through schools, Libraries NI and local council networks, engagement with community and sports groups, and sharing through Primary Care. Pop-up banners were also displayed in Emergency Department waiting areas.

This work highlights the value of working in partnership with service users and carers to develop and share information in a way that is meaningful, accessible and wide reaching.

Respiratory Patient Information Leaflet

A patient information leaflet was co-produced in partnership with the Medicine and Emergency Medicine (MEM) Service User and Carer Engagement Panel to support patients attending the Respiratory Ambulatory Care Unit. The leaflet provides clear and accessible information to help patients understand what to expect while waiting for their appointment.

Panel members played a key role in shaping the leaflet, contributing to decisions on font size, layout and the flow of information to ensure it is easy to read and user friendly. Their input also informed the format and print design to improve accessibility.

This work demonstrates the value of involving service users and carers in the development of patient information, helping to ensure resources are clear, relevant and responsive to patient needs.

MEM Service User and Carer Engagement Panel

Work is currently underway to introduce digital information screens within the Emergency Departments at Antrim Area and Causeway Hospital sites. These screens will provide patients and visitors with key information, including waiting times and health and wellbeing messages. The MEM Service User and Carer Panel will be involved in shaping the content and layout to ensure information is clear, accessible and relevant to those using the service.

In addition, early development has begun on a project to create a standardised patient admission pack for inpatient wards across Antrim Area and Causeway Hospitals. This resource aims to support patients throughout their journey from admission to discharge, providing consistent and easy to understand information.

This work was informed by shared learning from a similar initiative within Mental Health services, reflecting a collaborative and cross-service approach. The MEM Panel will continue to play an important role as the project develops, helping to ensure the resource meets the needs of patients and carers.

Rathlin Floating Support Scheme

The Rathlin Floating Support Scheme provides personalised, community-based support to older residents on Rathlin Island, helping to reduce isolation and promote wellbeing. The current scheme supports 15 service users, all aged over 55, and facilitates regular opportunities for social engagement and involvement through a weekly ‘Tuesday Club’.

These sessions are shaped by the interests and preferences of participants, who select activities and speakers that are meaningful to them. Activities have included art classes, digital skills and online safety sessions delivered by Supporting Communities, home safety talks from local PSNI officers, and informal social gatherings such as shared lunches. This approach promotes active participation, supports social connection, and ensures that information shared is relevant and responsive to the group’s needs.

The service plays a vital role in addressing the challenges associated with rural and island living, where access to services can be limited. In addition to group-based activities, the Floating Support Worker provides regular one-to-one engagement with service users to assess needs, offer practical support, and ensure access to appropriate services. This includes home safety and benefits entitlement checks, as well as support with shopping and transport where required.

Through a person-centred and preventative approach, the service enables individuals to remain living independently and safely in their own homes for as long as possible, while also ensuring their voices and preferences are reflected in the support they receive.

Parents helping to shape Children’s Speech & Language Therapy Service

A pilot project has been running in Ballymoney to deliver twice weekly speech therapy for children with severe speech sound disorders (SSD). This more intensive model results in a shorter therapy journey overall, reducing the negative impact the SSD has on their social, emotional and educational development.

Following intervention, parents were asked to complete a survey, and also to give their views on leaflets developed to explain each therapy approach.  Comments from parents are helping to identify potential barriers, as well as how we might overcome them, as we seek to roll this evidence-based approach for children with severe SSD in more areas.

We hope that parents’ comments about the impact of this intervention will encourage others that the level of commitment required is well worth it.

LIVED (Living Insights, Voices & Experience in Dementia)

NHSCT staff have supported the co-development of LIVED (Living Insights, Voices and Experience in Dementia), a new regional involvement group bringing together people living with dementia and their carers. Through a structured approach to engagement, a project group worked to promote, recruit and establish the group, ensuring representation from those with lived experience.

The group is currently co-chaired by NHSCT staff and provides a meaningful platform for people with lived experience to have their voices heard. LIVED aims to ensure that people living with dementia and their carers are actively involved in shaping the planning, delivery, monitoring and ongoing improvement of dementia services.

Importantly, the group acts as a key link between lived experience and system leadership, providing a formal mechanism for service users and carers to influence decision making across a range of organisations, including Health and Social Care Trusts, the Department of Health, the Strategic Planning and Performance Group, the Public Health Agency, and the community and voluntary sector.

Young onset dementia Study

Mental Health Older People Services, in partnership with Social Services Learning and Development, supported a family carer to take an active role in peer research with other carers of people diagnosed with young onset dementia. This approach placed lived experience at the centre of the research process, ensuring that the voices and perspectives of carers directly informed the work.

The findings from this co-produced research have been published and shared widely, including with the Regional Dementia Project Board, the NHSCT Carers Listening Forum and at the Alzheimer’s Disease International conference.

Importantly, the learning has been used to inform service development and improvement. This has included the establishment of a Young Onset Dementia Champions Forum within Mental Health Older People Services, creating further opportunities for carers and staff to work in partnership to shape and enhance services.

HUG (Helping You Grieve)

HUG was established in 2021 following a noticeable increase in referrals from widows and widowers to the MDT Social Work Teams in the GP practices in Coleraine where their health and wellbeing was declining. Some were using alcohol to dull the pain of their grief whilst others had totally withdrawn from society and often went days without speaking to anyone or eating a proper meal.

Many of our patients struggle with feelings of loneliness and social isolation, they often don’t feel like they have the ability to go out, meet with their friends and enjoy life. At HUG we are dedicated to making our patients feel empowered, develop a new way of living, by building confidence and knowledge, developing life skills, improving fitness and making friendships thereby enabling participants to make healthier choices and be inspired to live their life to the full, whilst celebrating their lost loved ones.

HUG uses an innovative model that assists individuals in their personal and collective journeys through grief by offering those with lived experience the opportunity to contribute towards personalised, compassionate care and support for other widow/widowers.  It prioritises targeted intervention, targeting widowed patients who were at risk and were struggling with their physical, emotional and mental health, and were socially isolated and lonely.  In the 2025-2026 the HUG group met a total of 21 times, with an average of 33 people attending.  The most we had at a session was 42 participants.  Sessions include a range of activities from storytelling, quizzes and darts to floral art.  There are significantly more female participants but we have a core group of males who attend and help provide a male perspective.

The goal of HUG is the facilitation of the grieving process and, implicitly or explicitly, the prevention or alleviation of the detrimental consequences of bereavement.

Feedback included hard-hitting statements like:

• “I thoroughly enjoyed meeting with people who have been bereaved. Very helpful”
• “Hug broke my isolation and gave me a new lease of life and a purpose”
• “The best things I have joined since being on my own. Great activities, made new friends where we go places outside HUG. Would never have happened if I wasn’t in HUG – all friends”
• “Has been very interesting, good fun, lovely company and a reason to come out of my own four walls. Lonely is not a good place to be and coming here gives us a new lease of life”.
• “HUG has given me a reason to live”

As the project has developed, we have witnessed real and meaningful friendships forming where we have heard participants starting to share their stories of grief and loss. We have a number of participants who have met and have went on to holiday together including a trip to the Christmas markets in Scotland, a cruise on the Norwegian Fords and a trip to Italy.

JACK (Joint Approach to Community Connectivity)

Coleraine Bowling Club in partnership with Mountsandel Medical Centre facilitated an eight-week lawn bowling project, beginning on 9th July 2025. Nineteen different individuals participated in the project, learning new skills and enjoying social interaction with others.  They went on to facilitate an eight-week short-mat bowling project from November 2025 – February 2026 where twenty different individuals participated in the project.

JACK aimed to use bowling as a catalyst for social connection, fostering camaraderie and community building among individuals of all ages and backgrounds.  Lawn and carpet bowls is an exceptional sport that promotes interaction among people of all ages, genders, and backgrounds. It is a sport that is accessible to all ages and levels of ability/mobility.  It’s one of the few activities that can facilitate competitive and social engagement across the generations, crucial for mental health and social well-being, helping to combat social isolation, loneliness and fostering meaningful intergenerational connections. Bowling brings people together, promoting friendships, teamwork, and a sense of belonging improving overall health and wellbeing. This is evident in the evaluation findings of the project.

Figure 1 depicts some of the positive changes reported by participants following completion of the project, with eighty-five percent of participants reporting an improvement in all areas and fifteen per cent indicating no change.  This feedback is very positive and taken in conjunction with the feedback from July 2025 reinforces the rationale that bowling is an inclusive sport for people of all ages and abilities, with multiple health and wellbeing benefits.  Figure 2 depicts the Changes reported by participants following completion of the project in July 2025. Whilst some participants have changed, the core majority have remained the same, which shows that continued participation in projects like this can have a significant positive impact on and individual’s health and wellbeing.

*This does not taking into consideration other factors other than participation in the bowling project.

AWARE/AWARE+ (Advancing Wellbeing in A restorative Environment)

AWARE/AWARE+ works with people who have chronic health problems or disabilities, and those that haven’t been accessing any other forms of support who may have become isolated socially. We encouraged participants to be pro-active in promoting positive social, mental & emotional well-being through a series of six social and therapeutic workshops held at the Ashes to Gold horticultural premises in Coleraine.

The aim of AWARE/AWARE+ is to help build social-emotional skills, including coping strategies, empathy, attention, confidence, relationships, mindfulness, and self-awareness for the participants.  Groups are kept small with up to 8 participants per group and we have facilitated 3 groups in total.  After the initial 6-week AWARE programme participants move onto the larger AWARE+ group who meet periodically throughout the year, encouraging participants to build on the foundations established through the AWARE project. The project is centred on real-life contexts and experiences and participants work together to resolve issues and appreciate their diverse perspectives. We have observed this directly within the group as they openly discuss personal issues and potential resolutions whilst working on their practical activity, which encourages communication and openness in a non-threatening way.

Social and therapeutic horticulture (STH) can benefit people in a number of ways:

• It can be part of a person’s rehabilitation process, to help them recover and ‘find their feet again’ after an illness or a difficult time in their lives
• It can help people recover from a wide range of conditions
• It can help people to learn new skills

It can help slow down the deterioration seen when someone has a degenerative illness.

Community Addiction Service

In June 2024, the Community Addiction Service established a service user group to ensure that the voices and lived experiences of those accessing the service could meaningfully inform how care is delivered. Since this time, a committed group of members has met monthly, generously volunteering their time, insight, and compassion to support others and enhance service delivery. To date, the group has provided valuable feedback on the inpatient addiction unit, contributed perspectives to research exploring stigma and alcohol use, and is currently developing information leaflets aimed at reducing stigma and encouraging engagement with the service. The group has also established connections with regional service user networks, extending shared learning and collaboration beyond the local service.

Importantly, the group offers a supportive and empathetic environment where members uplift one another. Their welcoming approach fosters a strong sense of belonging and shared purpose for new members. Through their ability to connect, empathise, and engage meaningfully with one another, they build trust and relationships that are essential to the recovery journey. The group exemplifies our core values of collaboration, excellence, openness, and compassion. Their courage, motivation, and generosity highlight the powerful role of lived experience in improving services and inspiring hope, reinforcing the belief that recovery is possible.

Acknowledgement

We would like to sincerely thank all those who have contributed to Personal and Public Involvement, and Patient Client Experience activity during the year. The time, commitment and shared experiences of service users, carers, members of the public and staff continue to play a vital role in informing, improving and shaping the development of our services.

Get in touch

For more information about our work, or to find out how you can get involved, please contact the Involvement Team or join our Involvement Network.

• Telephone: 028 2766 1377
• Email: InvolvingYou@northerntrust.hscni.net

PPI is underpinned by Equality and Rural Needs considerations.

Details of the Trust Equality Scheme can be found on the Northern HSC Trust Website

Alternative formats

Involvement and Experience Annual Report 2025/2026 (PDF, 8MB)