The journey home: Insights into people’s experiences of hospital discharge and follow-up care 

As the Care Quality Commission (CQC) launched its State of Care report for 2024/25 recently, we were pleased to share new research that sheds light on a critical but often overlooked part of the patient journey: what happens when people leave hospital and return home. 

As part of the development of the 2024/25 State of Care report, we were commissioned by the CQC to engage with people to find out about their experiences of follow-up care after hospital discharge. We collected 144 survey responses and conducted 17 interviews, with a particular focus on older people living with frailty and those from communities experiencing health inequalities. What we heard offers valuable insights for how the NHS can better support people to recover, stay independent, and avoid unnecessary readmissions. 

Read the full report here.

When it works, it works well 

The good news is that when the system functions as intended, patients have positive experiences. The majority of people we heard from who received follow-up care felt the care they received helped them recover, maintain their independence, and reduce the burden on family members. Many praised the physiotherapists, occupational therapists, and district nurses who went above and beyond to support their recovery and help them maintain their independence. 

Domino effect of a poor discharge process 

However, our research also revealed significant gaps that have serious consequences for patients and their friends and families. When discharge planning is poor, when coordination breaks down, or when follow-up care doesn’t materialise, the impacts ripple outward. 

Nearly one in five people told us they didn’t feel ready at the point of being discharged. A third didn’t receive the safety and welfare check they should have had on the day of discharge. For those who needed follow-up care but didn’t receive it, the consequences were stark: many ended up back in hospital, experienced deteriorating physical and emotional wellbeing, and placed increased pressure on unpaid carers – many of whom often require support themselves. 

A vicious cycle 

What struck me most was the cascading effect of gaps in care. When someone doesn’t receive the physiotherapy they need, they lose confidence in their ability to be mobile independently. That loss of confidence leads to reduced activity, which in turn leads to further physical decline and social isolation. This isolation negatively impacts mental health. Before long, someone who might have recovered well with the right support becomes increasingly dependent on others, or worse, ends up back in hospital. In addition to avoidable suffering this creates for the patient, we heard of several instances where basic aftercare was not provided or was inadequate which ended up creating additional demand on the health and care system down the line to meet more complex needs. 

The whole person, not just the patient 

Another clear message from our research is the need for a more holistic approach to follow-up care. Several people told us they felt like “a problem to be solved” rather than a whole person. Their emotional needs were often overlooked. Staff didn’t always take time to discuss both medical and non-medical concerns and the focus was narrowly clinical when what people needed was support that recognised them as individuals living full lives. 

This matters especially for people more at risk of experiencing health inequalities. We heard from people who didn’t receive interpreters when they needed them, whose nomadic lifestyle wasn’t considered in discharge planning, or who simply felt the system wasn’t designed with people like them in mind. 

The invisible workforce 

Throughout our research, unpaid carers emerged as the invisible workforce filling gaps in capacity and care provision in the system. Partners, children, and friends stepped in to provide personal care, manage medications, provide transport, cook meals, and offer emotional support. Many described feeling exhausted and overwhelmed. Some were elderly and/or frail themselves, managing their own health conditions while caring for their partner. 

When the health and care system doesn’t provide adequate support, it simply shifts the burden onto families, who often receive no training, no respite, and often no recognition of the role they’re playing. 

Key takeaways 

To address these issues, we recommend four key changes to the design and delivery of hospital discharge processes: 

1. Empower patients with clear discharge information 

2. Implement shared decision-making for discharge 

3. Co-produce neighbourhood health services 

4. Make discharge experience a quality metric 

You can read our recommendations in full here.

The emerging policy landscape, as laid out in the NHS 10 Year Plan, provides an opportunity to build a health and care system that truly supports people at every stage of their journey. Our research shows that when we get support at home right, everyone benefits: patients recover better, families cope better, and ultimately, pressure on hospitals reduces. 

But getting there requires investment, integration, and a genuine commitment to putting people, not processes, at the heart of care. The people we spoke to have shown us what good looks like, and what happens when support falls short. 

I want to thank the VCSE partner organisations who supported us to recruit participants: Friends, Families and Travellers; SmartLyte; Learning Disability England; Afrocats; and iSight Cornwall as well as Age UK, the Kings Fund and Carers UK who helped shape the project early on. I also want to thank our Lived Experience Partners Katie-Rose, Richard and Helen who helped shape the approach and findings.