Carers, transitions and co-production (from October 2024-April 2025)

The Context

Transitions, including service transitions (such as from hospital; from children’s to adults’ services and into a residential care setting) can be experienced as ‘shocks’ or as stressful both for the person experiencing them and those who care for them.

This Network will focus on carers (unpaid or ‘informal’ as opposed to care workers) and how they can be better involved during periods of transition. Sometimes carers are ‘forgotten’ or ‘taken for granted’ in the processes and decision-making, and the aim of this Network is to explore how they can be more involved in ways that align with the values of ‘co-production’.

Discussion Materials

Before the first Network meeting, IMPACT carried out an evidence review of research, lived experience and practice knowledge.

Definitions of ‘transition’ vary but most agree it involves people’s response during a period of change
Transitions may be in relation to care services and settings (eg into/out of hospital); age groups (eg childhood to adulthood); or health (eg full to partial physical mobility)

Why is this an important issue?:

Care involves many types of transitions, often aligning with shifts in a person’s life stages and health
Transitions may involve upheaval to living arrangements, requiring adaptations to the home or relocation to another area entirely
As people make transitions they may experience stress, anxiety, frustration and anger if the right support is not available to them
Transitions also impact carers who may experience significant changes to their lives as a result of their caregiving role
Every year 12,000 people become carers and evidence indicates that it can impact both their mental and physical health
Evidence also indicates that it is crucial to include carers as partners in care planning
Yet current care planning around transitions often exclude cares. Few interventions target or include carers and often fail to recognise their challenges at individual, interpersonal and systemic levels.
The House of Lords Adult Social Care Committee calls for a shift in attitudes and advocates for co-production which would see people and carers as the experts and active participants in their care rather than as passive recipients

This evidence review was used as ‘discussion material’ in the Networks, designed to spark conversation and ideas. It’s a helpful way to surface more evidence, with people in the Networks sharing their own practice knowledge and lived experience

Discussion Materials (PDF)

Easy Read Discussion Material (Word)

Networks are meeting across the UK, coordinated by:

In England:
Reading Borough Council
National Development Team for Inclusion (NDTi)

In Northern Ireland:
Brain Injury Matters
Carers NI

In Wales:
Swansea University

Each Local Network included people with lived experience, carers, commissioners of services, providers and support services.

At the first Local Network meeting, Local Network Members discussed the evidence review and their experiences of caring and/or being cared for.

Key Themes Discussed

Emotional Impact: Carers often experience trauma and grief due to significant life changes, leading to feelings of loss and emotional distress.
Employment and Financial Strain: Many carers leave their jobs to provide care, resulting in financial difficulties, especially with additional costs like home modifications.
Fragmented Support Systems: Lack of coordination between health and social care sectors forces carers to navigate complex systems, causing delays and added stress.
Lack of Recognition: Carers frequently feel invisible, with their roles unacknowledged and their input overlooked in care planning.
Advocacy Fatigue: The need to repeatedly share their stories with various services can lead to exhaustion and re-traumatization.
Power Imbalance: Decisions are often made for carers without their involvement, using bureaucratic language that alienates them from the process.
Information Gaps: Limited access to information hampers carers’ ability to make informed decisions about care options.
Challenges in Co-Production: Collaborative care planning is difficult due to time and resource constraints faced by both carers and organizations.

What Works

The Networks also identified some positive examples of good practice, which included:

Parents Action in Northern Ireland calls for greater visibility of parent carers and children, young people and adults with disabilities/additional. The organisation promotes effective and meaningful multidisciplinary and interagency partnerships with all public services.
Perth and Kinross Council in Scotland operate a Carer’s Emergency Plan and Carer’s Card which are designed to support a carer should they have an emergency and be admitted to hospital.
When an older person is discharged from hospital following a procedure and during their recovery it can be helpful to receive short-term support services for household tasks. Networks praised the North East Lincolnshire Home from Hospital service for providing this type of support and hope it can be replicated.
The PIVOT Hospital at Home scheme in Pembrokeshire, Wales is a preventative scheme which aims to support people for longer in their own homes and avoid unnecessary hospitalisation.

Broader examples of what good practice looks like were also identified:

Good communication through the use of plain language and having a regular point of contact for carers during hospital visits.
Respite services are valued for allowing carers to have some time to themselves.
Peer support was also identified as an important resource for carers. Sharing experiences has been recognised as an essential source of information and emotional support.

During the second and third meetings the networks identified areas for improvement and had begun to discuss potential actions and best practice.

A Care System that acknowledges carers

Carers felt invisible in the system and this was reflected by the lack of support and information being provided.
Potential improvements include a carers passport scheme which identifies who is a carer and offers ways that they may be supported.
An app like the ‘about me’ app used in Wales could also recognise a person’s care needs and the role of carers
Storytelling could be integrated into care records (e.g. digital postcards) which explain a carers’ story to improve their visibility.
Online diaries can also increase visibility and public awareness. A similar project for people with dementia is currently online (see Dementia Diaries).
A lack of clear information could be partly addressed by using plain language and other forms of communication such as short videos to explain services.
A complaints system that guarantees anonymity.
Compulsory training for carers could empower and inform by signposting to different services, increase understanding of caring experiences and improve advocacy skills.
A carers emergency card which carers can have in their possession at all times would let services know that they are a carer in an emergency situation. Edinburgh City Council currently offer this.

Direct Payments, Personal Assistants and Other Staffing Issues

There is a lack of information around direct payments and the process of recruiting PAs can be difficult. For this reason, carers often decide not to proceed along this route.
Potential improvements include clearer information about becoming an employer of PAs. Care agencies can also assist with this.
PA databases such as PA Database and Find a PA can help with identifying trusted PAs and generating better matches between PAs and people looking for their services.
Adopting a values-based recruitment strategy may also help identify PAs who are a better match
Policies affecting other professional staff could also be improved. Notably, social workers can often be unavailable or inconsistent and rigid guidelines for occupational therapists can generate impractical and inefficient solutions that do not fit real-life needs

Peer Support, Respite and Advocacy

A lack of resources and high levels of fragmentation in service provision has forced carers to seek information and support from peers.
There is not enough information for new carers about how life will change for them. Organisations such as Parent Action recruit experienced carers to provide advocacy and peer support for new carers
Dementia UK have created the role of ‘Admiral Nurses’ who provide support for unpaid carers of people with dementia.
In Reading, the Carers Partnership can also provide support and advocacy around key issues.
The Walton Parish Nursing service can also offer support with practical help and wellbeing checks in people’s homes.
Respite services are another vital resource but these can be hard to source. Better information and more diverse opportunities on the basis of a carer’s specific needs and desires is very important. The Accelerating Reform Fund (ARF) accessible via local authorities can offer respite services amongst other priorities.

Hospital Discharge and Housing

Better information and more integration between health and social care could improve the experience of transitions.
The Progression Model, used by Flintshire County Council, which emphasises the importance of maintaining a person’s independence, has been cited as a successful approach to designing services, particularly for younger people.
Poor discharge planning can lead to patients being sent home without adequate support. Necessary adaptations to the home may be either incomplete, half-completed or completed badly and this creates barriers to access and comfort within the home. Social housing is not always appropriate for individual needs and can require moving home again which can cause instability and stress.
The social security system does not seem to recognise the economic challenges that carers may face related to housing. Instead, it is assumed that carers can self-fund any necessary adaptations plus their upkeep costs.