Involvement Human Library has a story to tell

The Northern Health and Social Care Trust’s Involvement team, along with the Public Health Agency, recently held an Involvement Human Library event.

The Human Library is a safe space for service users, carers and staff to share their lived experience of their involvement journey – how they found it, the challenges, benefits and the impact it made.

It was a chance to bring to life the amazing involvement work of service users, carers and staff, that might not otherwise be captured, shared or celebrated.

Four projects were selected to showcase their involvement with service users and carers:

• Co-design of Macmillan Information and Support Centre new build
• Development of advanced cancer health and wellbeing toolkit
• Medicine and Emergency Medicine (MEM) service user engagement panel
• Connect North

Co-design of Macmillan information and support centre new build

The Trust, in partnership with Macmillan, is working on a new-build £3.2m Information and Support Centre at Antrim Area Hospital to support cancer patients and their families.

The stand-alone, split level centre will be built between Fern House and Maple House within the Antrim hospital grounds. It will have public-facing areas including a lounge and information hub, two therapy rooms, two quiet rooms, a family room, and group room. There will also be workspace for healthcare staff.

Over the last six years, Macmillan’s information and support service has supported more than 9000 people living with cancer, their families and carers. Without a dedicated space for events and in-person activities, much of this support is currently offered off-site or online. The centre will also improve access to cancer support services for young people who have received a cancer diagnosis themselves or who are supporting a family member.

Service users and carers have been involved at each stage of the project development; feasibility stage, business case stage and now pre-construction, ensuring that this is a co-produced approach to involvement.

Moyra Mills,  Macmillan Service Improvement Lead said: “Our service users have been invaluable to this project, ultimately we are designing a building for them, so we recognised that we needed their input from the outset.  Their comments and views at each stakeholder event have been incorporated in the new build design to ensure we have a building that meets their needs.”

Development of advanced cancer health and wellbeing toolkit

Cancer Services informed the Palliative Care Service Improvement Team (SIT) of feedback received from a service user after a breast cancer health and wellbeing event. The lady, who had secondary breast cancer, said that it felt like it didn’t really meet the needs of people living with advanced cancer. The SIT scoped existing health and wellbeing resources for people living with advanced cancer, and found there was nothing regionally and limited information nationally.

The team met with the service user, who turned out to be a former nurse and lecturer. With her help, an amazing focus group of local people living with advanced cancer was formed and work on the resource began.

The Advanced Cancer Toolkit was formally launched in 2024 with the help of our service users. The resource will continue to grow as more topics are addressed. We were contacted by the Department of Health and are now working with NICaN, the PHA, other organisations and, of course, service users, to develop it as a regional resource.

Alison Craig, Macmillan Palliative Care Service Improvement Facilitator said: “Our service users bring their lived experiences which gives credibility to this work and reassurance for those accessing it. They also bring a range of skills, enthusiasm and reality which keeps us as professionals focussed and reminds us of the value of this work. It has been a privilege to partner with them.”

MEM Service User engagement panel

The division of Medicine and Emergency Medicine (MEM) engages with service users on an ongoing basis in relation to various services and topics. The MEM service user engagement panel is a key part of the process of designing, reviewing and improving services.  The overall aim of the panel is to ensure personal and public involvement on the development, design and improvement of medicine and emergency medicine services within the Trust.

The purpose of service user and carer involvement in the panel is to:

• provide input into plans and decisions
• utilise the expertise, knowledge, and skills of service users and carers
• inform, shape, and influence plans and decisions
• discuss projects within the Division of Medicine & Emergency Medicine.

Engagement with our panel has led to improved service quality, better outcomes for our service users and has provided opportunities to reflect on Trust practice and learn directly from our service users. Through the service user engagement panel the MEM division has embedded service user involvement, fostering a culture of continuous improvement, working in partnership to better meet the evolving needs of our community.

Recently we have worked with the panel to co-produce a patient information and communication leaflet for the discharge lounge. Panel members’ expert advice was integral when developing this leaflet, to ensure the information is accessible, relevant and truly meets the needs of those it is designed to support.

Connect North

The Connect North service was co-designed with service users and carers to support those experiencing a range of social, practical and emotional needs.  Clients and carers continue to be regularly involved in resource and service developments.

The service designed and piloted a Community Appointment Day (CAD) to assess, engage and connect clients and their carers to helpful community based services and supports within one single appointment and without impacting waiting times.

Feedback from the event highlighted a need to continue to invest in the often underrated aspects of care which matter most to our clients and their carers; timely access to appropriate help and support, easy to understand information, client/carer led care, personalised care, relaxed atmosphere, professional personnel and a warm and friendly approach to care provision.

The CAD was a huge success with clients and their carers reporting that they felt comfortable, listened to, involved and better informed following their connection with our service.  All participants reported that they would recommend the service and event to others.

This feedback identified a need for our service to expand the CAD initiative for clients and their carers.  The team is currently gathering feedback from clients on our usual care pathways to further inform service improvements.

2nd July 2025