Northern Health and Social Care Trust Draft Carer Strategy 2026-2031
Foreword By Trust Chair Anne O’Reilly
“The role that carers play in the health and wellbeing of the general population is immeasurable and it is vital that they are recognised and supported. The Northern Health and Social Care Trust is committed to supporting carers in the important role they carry out and recognises that demands on carers are now greater than ever.
Over the last few years the Northern Health and Social Care Trust implemented the Caring for Carers Strategy (DHSSPS 2006), which has included a range of measures to support carers. Whilst much has been achieved, it is time to update and to develop a new Trust strategy which recognises the important role that carers play and describes how we will support carers over the next five years.
Carers have been involved in the development of this strategy. We have spoken to a number of representative groups and the priorities we have established are in response to carers’ needs. The Trust welcomes the opportunity to continue to work jointly with our carers as partners and other key stakeholders such as those in the voluntary and community sector, to implement this Strategy”.
Chief Executive, Suzanne Pullins
“As Chief Executive of the Northern Health and Social Care Trust, I am pleased to introduce this Carer Strategy, which not only recognises the immense contribution of informal carers but also outlines our priorities for supporting them over the next five years.
Informal, unpaid carers come from all backgrounds and age groups, and every caring situation is unique. While the term ‘carer’ is often associated with older adults, caring responsibilities can begin at any stage of life. All carers provide a significant and often sustained contribution, but for many young carers, this contribution can be particularly long‑lasting, with some remaining in a caring role for extended periods.
Given the vital role that carers play in sustaining the Health and Social Care system, we are committed to improving how we include, engage with, and support them. I am aware that many carers can at times feel overlooked, and we want to change that experience.
The aim of this Strategy is to ensure that carers receive improved, coordinated support from the Trust, enabling a smoother caring journey—one where they feel valued, heard, and confident in the services the Trust provides”.
Carer Pathway Steering Group
Chair Sam Bell, MBE and Deputy Chair Virginia Maxwell
“I have been the Chair of the Carer Pathway Steering Group of the Northern Trust for over 10 years and have been actively involved with a wide range carer initiatives across Health and Social Care including at Department of Health level for more than 20 years. During this time, I have witnessed significant change in both progress and ongoing challenges for informal, unpaid carers in their role and some meaningful improvements in the recognition of carers as a standalone priority group. While there remains much more that can be done at a regional level, I am encouraged by the Trust’s commitment to developing this draft Strategy, which offers an important opportunity to consider how a more connected and collaborative localised system can better support carers alongside the loved ones we care for”.
– Sam Bell, MBE, carer
“As Deputy Chair of the Carer Pathway Steering Group, I am pleased to have been involved with the development of this draft Strategy from the outset. I have been involved with the Northern Trust for over 10 years and a wide range of locality working groups such as the Local Commissioning Group and Strategic Planning Group for children and can attest to the value of the Trust working closely with and involving carers, listening to their voices and understanding a carer’s experience. I agree with Sam, that this draft Strategy is a step in the right direction by the Trust to address locally, many of the suggestions made by carers living in our Trust area. We are experts in our own caring roles and our experiences should be regarded as central to shaping services that are effective and responsive for both carers and our loved ones”.
– Virginia Maxwell, carer
Northern Health and Social Care Trust Area
The Northern Health and Social Care Trust is one of the five Health and Social Services Trusts in Northern Ireland. The Trust area covers 1,733 square miles, with a population of 479,000 and over 56,000 unpaid carers, it is Northern Ireland’s largest geographical Trust. The geographical area covered by the Trust is – Antrim, Ballymena, Ballymoney, Carrickfergus, Coleraine, Cookstown, Larne, Magherafelt, Moyle and Newtownabbey.
Our Vision, Values and Objectives
Our vision and values
Our vision is ‘to provide compassionate care with our community in our community’.
Our staff are guided by the Health and Social Care Values for All – Working Together, Excellence, Openness and Honesty, and Compassion.
Our objectives
Our corporate objectives are to:
- Build Northern partnerships and integrate care
- Continue to improve outcomes and experience
- Deliver value by optimising resources
- Nurture our people, enable our talent and build our teams
- Improve population health and address health and social care inequalities
Who is a carer?
A carer is someone who, without payment, provides help and support to a family member or friend who may not be able to manage without this help due to disability, illness or frailty. Carers can be adults caring for other adults, parents caring for children with disabilities or young people under 18 who care for another family member. The most common age for someone to take on a caring role is 45-59 years meaning that for some people, they can be sandwich carers, caring for an older person and a dependent younger person. Many sandwich carers are also juggling caring with employment. The legislation in Northern Ireland defines a carer as ‘someone who provides or intends to provide regular and substantial care on an informal (unpaid) basis’ [The Carer and Direct Payments Act 2002]
There are over 56,000 informal, unpaid family carers living in Northern Trust area according to the 2021 census. [Northern Ireland Statistics and Research Agency, Census 2021: Provision of Unpaid care]
Involving Carers and Young Carers
Young carers are represented by Barnardo’s Young Carer Service on the Carer Pathway Steering Group and some Young Carer Champions attending the Carer Listening Forum.
The Carer Hub acts as a central point of contact in the organisation for informal, unpaid family carers and staff for information, signposting, connection, to receive peer support through the carer support programme.
The Carer Hub connects with carers through the carer support programme which is based on the Take 5 Steps to wellbeing and is co-produced with carers.
Carer Pathway Steering Group
Meets quarterly, Carer Led, Chair and Deputy Chair both carers. Made up of carers, Trust staff and Barnardo’s.
Carer Listening Forum
Meets twice a year, facilitated by Trust Chair and Chief Executive to meet with carers and young carers.
Northern Partnership Population Health Committee
Meets quarterly, Trust-wide accountability group made up of staff, community sector and carer reps.
Carer Connections
Ongoing engagement with local carers through the carer support programme.
Carer Strategy 2026-2031 Stakeholder Engagement and Project Key Milestones
January 2024
Carer survey. Output a number of themes of what matters to carers.
March 2024
First Carer Listening Forum with CEO and Trust Chair – action plan to address themes and improve service and experiences.
June 2024
Carer Engagement workshop re: support
October 2024
Second Carer Listening Forum – theme: transitions
January 2025
DOH Caring for Carers (2006) review. Themes aligned with local identified themes
April 2025
Third Carer Listening Forum – theme: equipment and identification of carers
June 2025
Carers Week: Caring About Equality event – what matters to you? Feedback
August 2025
Update to Northern Partnership and Population Health Committee
September 2025
Staff workshop – a call to action
October 2025
Listening Forum update on stakeholders’ feedback and initial bringing it all together
November 2025
Carers Rights Day – café conversations co-producing the Carer Strategy
December 2025
Draft Carers Strategy 2026 to 2031 to Carers Pathway Steering Group
January 2026
One Sub Group with carers and one Sub Group with Barnardo’s held to finalise draft Strategy
February 2026
Draft Carers Strategy to Northern Partnership Population Health Committee for approval
February 2026
Public consultation process opens
What Matters to Carers
Carer engagement – Many carers have been involved in informing and co-producing this draft Strategy. From initially identifying the key themes and priorities to co-producing the carer support programme and the ongoing partnership working with the Trust throughout each year as members of engagement groups such as the Carer Pathway Steering Group, the Carer Listening Forum and Northern Partnership and Population Health Committee.
“Communicating clearly with the carer is important and being involved in the information given to the cared for person.”
“Having some guidance and advice given regarding future provisions for daughter with severe learning disability.”
“Two-way communication is vital – being told by services what action will be taken – any communication at all good and bad.”
“Earlier support for me, as a young carer and also for my family, would enable me to focus on my education and future”
“At times we are in a minefield of services, supports, things available – what is available, who do we get in touch with and for what? The Carer Hub is great for signposting us to other supports outside of the Trust.”
“Transitions between special school and adult services. We need somewhere for them that is similar to school structure.”
“The importance of face to face engagement with social work staff cannot be over emphasised.”
“Visits are so important to clients and carers. They ease the situation and help with carers mindset – I am not forgotten”.
“Getting time to deal with my own health concerns as a carer.”
Staff Workshop – what our staff told us
Various staff representing all the Division across the Trust attended a focused workshop. This was a valuable day presenting the key themes identified by carers to staff and discussing what challenges staff face while embracing the enthusiasm of staff to work together to make change over the next five years.
- Multi-carer identification points used
- Provision of service specific leaflets, packs, panels
- Various transition points outlined
- Improve awareness of services and supports across system
- Impact of service changes on our Teams
- Make signposting and referral pathways easier to find
- Strengthen skills across Teams
- Better information sharing between services
Young Carers
A young carer is someone under the age of 18, who provides care and support to a family member or loved one with a long-term illness, disability, mental health issue, or addiction. Their responsibilities can include a wide range of tasks such as personal care, household chores, emotional support, and managing appointments, often balancing these duties with their own education and social activities. Young carers may face challenges such as emotional strain, social isolation, and the need for additional support services. A young carer is defined in The Children Order (NI) 1995 as ‘A child who provides or intends to provide a substantial amount of care on a regular basis for a person aged 18 or over’.
Barnardo’s Young Carer Service delivers the young carer service in the Northern Trust area supporting young carers in this age group who are negatively impacted physically, socially, educationally or emotionally by the caring role.
Hearing from young carers in our Trust area is vital as many have told us they feel invisible when statutory services interact with the person they care for. They have identified four priorities:
- Improving identification, recognition and referral of young carers by Trust staff and services
- Effective multi-disciplinary working to support and meet the needs of young carers (whole family approach)
- Develop appropriate young adult carer support during the transition from young carer services
- Continued involvement of young carers in decision making across statutory services.
Themes
Six themes were identified by local carers and young carers through the Trust’s Carer Listening Forum and Carer Pathway Steering Group. The themes are:
- identification,
- carer health and advocacy
- information
- communication
- navigation
- transitions
These themes form the base of creating the priorities for the draft Strategy for the next five years.
- Identification
Being recognised as a carer is the first step in accessing information that may help in the caring role.
Carers have told us that they often see themselves as a spouse, partner, sibling or parent before recognising they are a carer, ‘51% of carers said it took over a year to recognise their caring role’. [Carers UK, 2022]
Young carers have told us they need identified by adult services and recognition of the impact of caring responsibilities on young carers, including the impact on their aspirations and development.
Caring can take on many forms and not all caring situations are the same.
We would like to improve identification of carers including young carers across all Trust services.
- Carer Health and Advocacy
Carers have told us that over time and as they age, their own health needs are affected by caring. Carers are vital partners in care in supporting their family members and we want to ensure carers own health needs are prioritised.
‘35% of carers say their mental health is bad or very bad at the moment with 30% of carers stating their physical health is bad or very bad’. [Carers UK, State of Caring October 2025]
Carers have told us that at times they are exhausted speaking up for their own needs as well as the person they care for. Advocacy can help a carer find their voice and provide additional support while caring.
- Information
Information for carers should be readily available. Whether from Trust services or the community sector. Information should be accurate and up to date to reduce confusion. Carers should have access to trustworthy information at any time.
The right information should be provided to a carer at the right time, this includes; at the point of entry to a Trust service, whether at hospital admission, by a GP or at assessment in a community team.
A whole-system approach to providing information on support and care that includes all services for the carer and the person receiving the care.
- Communication
It is vital that the Trust communicates effectively between its services and from those services to family carers.
Carers have told us that communication from services is important, especially at key points in the caring role such as moving between services, admission or discharge from hospital. Staff have told us that they strive to communicate effectively with carers but would like to see an improvement in this area.
Carers and young carers also value the opportunity to communicate with the Trust by being involved in various Panels, Forums and Boards.
- Navigation
The Trust is a huge organisation to try and navigate. It is made up of various acute and community based services.
Carers have told us that they find it difficult at times to find out information, the right person to speak to or know what to expect from services or appointments.
Staff have told us that they provide what information they can but with a changing landscape this can be difficult.
We want to see services connect and share information to provide a streamlined journey through services for carers.
- Transitions
When patients and service users move between services, this is called transition.
Carers have told us that this is the time when they feel they need the most support, communication and information.
Staff have highlighted to us the various transitions that can take place in the caring journey such as; admission to and discharge from hospital, moving from children’s services to adult services.
Young adult carers need support during the transition from young carer services.
We want to see clearer transition pathways in the Trust so carers are supported effectively.
Strategic Priorities 2026-2031
- Earlier identification of carers
- Involve carers
- Integrate care pathways
- Promote carer centred communication
- Improve navigation
- Create a transitions framework
- Provide accessible health checks
- Give carers a voice through advocacy
- Develop a multi-format resource library
Our Strategic Priorities for 2026-2031
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Earlier identification of carers
Why have we chosen this priority?
Unidentified carers and young carers often miss essential support which leads to poorer wellbeing and can in turn impact the cared for person. Earlier identification will enable all carers to receive the right information and support at the right time.
How we will do it:
- Raise awareness with staff of the caring role and ensure use of the term carer instead of next of kin.
- Staff to ‘Think Young Carer’ when working with a family
- Promotion of carer support at relevant Community Appointment Days
- Partnership with community sector organisations who support carers in condition specific services and with Primary care
We will measure our progress by:
Seeing an increase in carers registered with the Trust, through a proactive, system wide approach to identifying carers and young carers, to ensure they receive support at the earliest opportunity possible.
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Involve Carers
Why have we chosen this priority?
Carer involvement is important in all we do. Our carers are expert partners in care and should be treated as such. ‘Unpaid carers are genuine experts by experience. In many cases, there are none who better understand the needs of a sick or disabled person than the carer supporting them every day, but too often these voices are excluded from decision making and care planning’ [Carers NI, 2023]
How we will do it
- Ensure carers and young carers are involved in any panels/forums/engagement opportunities across Trust services.
- Promote Care Opinion to ensure carer experiences are captured.
We will measure our progress by:
Through the Personal and Public Involvement (PPI) monitoring process which ensures carers are involved in the planning and delivery of Health and Social Care Services.
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Integrate Care Pathways
Why have we chosen this priority?
Better, collaborative support for carers through Health and Social Care will ensure a smooth caring journey, one where carers are confident in services.
How we will do it:
- Strengthen communication internally between Trust services and externally from services with GPs
- Services to share updated information internally
- Appropriate service specific information to be shared with carers and families
We will measure our progress by:
Increasing staff confidence in knowing what is available for carers across the Trust so they can share information appropriately with carers.
-
Promote Carer Centred Communication
Why have we chosen this priority?
Carers have told us about the uncertainty around who they should contact and that fragmented communication between services leaves them feeling uninformed about decisions, processes and outcomes.
How we will do it
- Engaging staff to ‘think carer’ and take a carer centred approach to communication ensuring all methods of communication are structured and coherent
- Communicate information to carers in their own communities/Trust localities through Community Appointment Days
We will measure our progress by:
Collaborating with staff to promote services and opportunities. Analyse stories from Care Opinion relating to carers. Use Trust social media effectively with targeted carer posts.
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Improve Navigation through Services
Why have we chosen this priority?
Carers have told us they need reliable pathways to understand where to go for help. To enable carers, families and young carers to navigate health and social care effectively, services must prioritise clear information and coordinate signposting.
How we will do it:
- Recognising that the beginning of the caring journey is different for everyone
- Providing the right information at the right time whether caring comes through birth, illness or life-stage
- Increase visibility of the Carer Hub and Connect North services
- Ensuring that information on Self Directed Support and short breaks (respite) is readily available for carers to make informed choices
We will measure our progress by: our bi-annual reporting from services through the designated accountability forums in the Trust and use real time feedback tools such as Care Opinion to monitor carer experience.
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Create a Transitions Framework
Why have we chosen this priority?
Carers have told us that they need to be brought into the planning of a move earlier. Being unsure of the transitions process can leave carers feeling unsupported and navigating different parts of the system at the one time. Staff have told us that fluctuating services and staff changes can impact on the transition process which is frustrating for staff.
How we will do it:
- Map and clarify the changes that carers will face at each age or stage of caring
- Provide structured support to carers and young carers at this key point
We will measure our progress by:
having clear guidance available for carers to access on all transition points such as; admission and discharge from hospital, from hospital to home or short term or long term care, from Children’s to Adult Services.
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Provide Accessible Health Checks
Why have we chosen this priority?
Navigating services should not be a dual, exhausting process where carers have to manage both their needs and those of the person they care for without support. Many carers report that the effort required to advocate for the needs of the person they care for is so overwhelming that they are unable to speak up or prioritise their own needs.
How we will do it:
- Collaborate and work in partnership with other statutory sector as well as community sector providers to offer health checks to carers
- Increase promotion of the carer assessment through services and ensure staff receive carer assessment training to allow carers wellbeing needs to be captured in the assessment process
- Promote Self Directed Support and Direct Payments to staff and carers to encourage offer and uptake.
We will measure our progress by: reporting on and monitoring staff attendance at carer assessment training. Providing data and reporting on the number of carers accessing short breaks, Self-Directed Support/Direct Payments. Reporting on data of the number of carers who access Trust Carer Support Programme.
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Give carers a voice through advocacy
Why have we chosen this priority?
Navigating services should not be a dual, exhausting process where carers have to manage both their needs and those of the person they care for without support. Many carers report that the effort required to advocate for the needs of the person they care for is so overwhelming that they are unable to speak up or prioritise their own needs.
How we will do it
- Introduce a carer advocacy service to support carers when they feel they need extra assistance
- Using a specialised service to inform you of your rights and encourage your cooperation with professionals in the care of your loved one.
We will measure our progress by:
Using surveys or evaluation of the implementation of carer advocacy and how it has been utilised across the areas of the Trust.
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Develop a Multi-format Resource Library
Why have we chosen this priority?
Carers have told us that they need a consistent, accessible and innovative information library that young and adult carers can benefit from. Carers have told us that the information packs provided by the Carer Hub are invaluable but should be available digitally and non-digitally.
How we will do it
- Map current information available for carers and co-design with carers ensuring accurate information that is relevant is included
- Collaborate with services to ensure all relevant or condition specific information for carers is held in one place
We will measure our progress by: Reporting on the information provided by service areas twice a year and auditing with our carers via the Trust’s Carer Pathway Steering Group if the information is accessible, useful and current.
Acknowledgements
The Northern Health and Social Care Trust would like to acknowledge the following groups who contributed to the development of this draft Strategy:
Carer Pathway Steering Group
Carer Listening Forum
Barnardo’s Young Carer Service
Informal, unpaid family carers who attended ‘Caring about Equality’ event
Northern Health and Social Care Trust Draft Carer Strategy 2026 to 2031 (PDF)
