Hospital discharge should mark the beginning of recovery and stability – not the start of confusion, stress and unanswered questions. Yet for many unpaid carers and families, the transition from hospital to home can feel disjointed, poorly communicated and overwhelming.
Through the IMPACT Network on involving people with lived experience in strategic decision making, coordinated by Changes Plus, carers, people drawing on care and support, families and healthcare staff came together to examine this critical moment of transition and ask an important question…
How can we improve the hospital discharge process through co-production?
The Network began by gathering and sharing real experiences of hospital discharge. What emerged was a picture of inconsistency, delays and missed opportunities to plan effectively.
Carers described situations where:
- Discharge planning began too late, or created unrealistic expectations.
- People were sent home without the right equipment or adaptations in place.
- Assessments were duplicated, poorly coordinated or not completed at all.
- Carers were presumed to be able to cope without being consulted.
- Occupational therapy input was delayed – in some cases for months.
- Communication between hospitals and social services was fragmented.
- Complaint processes were unclear or difficult to navigate.
While policy and websites suggest that joined-up systems are in place, participants reported little evidence of this working consistently in practice.
Identifying practical solutions
Importantly, the Changes Plus Network did not stop at identifying problems. Together, members co-produced a series of practical, achievable solutions.
1. Start discharge planning at admission – realistically
Planning should begin early, when someone is admitted to hospital, not at the point of discharge. Early conversations can help gather information about home circumstances, equipment needs and carer capacity. However, this must be managed carefully to avoid creating false hope about discharge dates.
2. Introduce a named discharge lead
Participants strongly supported the idea of a dedicated, named discharge officer to take ownership of the process. A clear point of contact would reduce confusion and help families feel supported rather than passed between services.
3. Improve joint assessments for patients and carers
Carers’ needs are too often overlooked. The Network called for genuine joint assessments that recognise carers as partners in care – not assumptions that they can “cope.” This includes better access to occupational therapy and appropriate equipment, fitted correctly and delivered on time.
4. Strengthen coordination across services
Members highlighted the need for a more efficient single assessment system between hospitals and social services – similar in principle to the “Tell Us Once” service used after bereavement. Better information sharing, while respecting confidentiality, could prevent repeated questioning and reduce delays.
5. Improve access to advocacy
Independent advocates play a vital role in supporting patients and carers, but funding pressures mean support is often unavailable or arrives too late. Strengthening advocacy provision was seen as essential.
6. Learn from mistakes – including near misses
The network stressed the importance of creating a culture where reporting issues leads to learning and improvement. An “as long as no harm was done” approach was seen as a missed opportunity to reflect and improve systems.
Understanding the complaints landscape
Participants also shared experiences of reporting concerns. While the Patient Advice and Liaison Service (PALS) was generally viewed positively, other routes, including ward managers, local authorities, and the Care Quality Commission, were described as slow or difficult to navigate.
Clearer information about who to contact and what to expect from the process was identified as a key need.
What can carers and families do now?
Alongside system-level recommendations, the network also reflected on practical steps individuals can take:
- Report issues as soon as possible and keep records.
- Seek advice and support – don’t manage concerns alone.
- Ask for updates and follow up when needed.
- Understand and defend your rights.
- Speak up – services cannot learn from problems they do not know about.
- “Value yourself and the person you care for”.
Empowerment is not about confrontation – it is about being informed, prepared and confident to ask questions.
From discussion to action: creating a leaflet for change
The Network chose to focus on the theme:
“Co-production to enhance the delivery of health and social care in the community and the transition from hospital care to care in the community.”
As a first step towards change, members co-produced a practical leaflet aimed at unpaid carers and families. The leaflet:
- Explains what carers are entitled to.
- Highlights key questions to ask during discharge planning.
- Provides information on where to seek support.
- Signposts routes for raising concerns or making complaints.
The goal is simple but powerful: to equip carers with the knowledge and confidence to navigate discharge processes more effectively.
The power of co-production
This work demonstrates the value of bringing lived experience together with professional insight. By creating a space where carers, service users and staff can speak openly and equally, the network has generated solutions rooted in reality.
Hospital discharge affects thousands of families every year. Small improvements – better communication, earlier planning, clearer accountability – can make a significant difference.
Through co-production, those most affected are not just sharing experiences; they are shaping change.