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To mark Carers Week 2026, this report from Carers UK and Carers Week supporter charities shares new research about carer friendly communities. Carer friendly communities are places, spaces, services and community groups where unpaid carers are recognised, understood, and valued. The research, based on polling of over 4,000 members of the public, highlights the following key findings: Carers can often find it difficult to participate in their communities. Nearly a quarter (23%) of current and former carers said they had been unable to take part in local groups or activities while caring – an estimated 5.7 million people. A fifth (20%) said they had been unable to maintain a healthy lifestyle – an estimated 5 million people. People caring for a high number of hours per week were even less likely to feel able to participate in their community. For example, over a third (39%) of people currently/ previously caring for 50 or more hours per week said they didn’t feel able to maintain a healthy lifestyle, compared with 15% of those caring for 19 hours per week or less. Some organisations and services are seen as more carer friendly than others. Pharmacies were seen as the most carer friendly organisation/service. 67% of current and former carers who visited a pharmacy said it was carer friendly. Public transport was seen as the least carer friendly – over a fifth (21%) of current and former carers who had used public transport said it was not carer friendly. Carers said that organisations are not carer friendly if they do not have a good understanding of what caring is, or they have not considered the impact of caring. 41% of current and former carers who felt that organisations or services were not carer friendly said that this was because they do not have a good understanding of what caring is and 37% said this was because they hadn’t considered what impact caring might have on them. The impact on carers when communities are not carer friendly When communities are not carer friendly, this can have negative impacts on carers. 36% of current and former carers who felt that organisations or services were not carer friendly said this had a negative impact on their physical or mental health, and 35% said it made it more difficult to look after the person they care for. 30% said it had had a negative financial impact. Carers who felt unsupported by health and social care services were even more likely to say their mental health was impacted. 49% of current and former carers who felt that social care services were not carer friendly said that not getting the support and recognition they need has had a negative impact on their mental and physical health. Similarly, 45% of current and former carers who said their GP was not carer friendly said that not getting the support and recognition they need had a negative impact on their health Carers’ ability to work is negatively affected by employers who are not carer friendly. 44% of current and former carers who said their employer was not carer friendly said that not getting the recognition and support they need has made it more difficult to be in paid employment. The support carers would like to see More carer friendly communities would help improve carers’ health and wellbeing. Over a third (34%) of current carers said that if their role as an unpaid carer was better understood, they would feel more valued, over a quarter (29%) said they would feel happier, and nearly a quarter (24%) said they would feel less stressed about caring. 19% said they would be better able to combine caring with other things, like paid employment. More recognition and understanding from organisations and services is important to carers, as well as having more opportunities to meet with other carers. When asked what one key thing could be done to build a carer friendly community, current and former carers highlighted the following areas: more recognition of carers in communities, including better understanding of the impact caring can have more opportunities to meet locally with other carers more support from the NHS, including better identification of carers, signposting to further help more consultation with carers, and more consideration given to carers’ own health more support, flexibility and understanding from employers more financial support for carers

This blog reflects on a patient safety concern arising from the death of my late best friend. It argues that discharge decisions should not rely too heavily on point-in-time observations, early warning scores or apparent mobility when serious unresolved pathology may still exist in the background. The aim is not to assign blame, but to highlight a wider safety learning point about the need to assess the full clinical picture when deciding whether a patient is safe to leave hospital. One of the most troubling lessons I have learned from healthcare harm is that a patient can appear “well enough” for discharge on paper while, in reality, still being at grave risk. My late best friend died after a final illness in which I believe the bigger clinical picture was not given enough weight. I have already been through the formal NHS complaints route and the Parliamentary and Health Service Ombudsman. Those processes did not uphold my concerns. But what remains with me, and what I believe has wider patient safety relevance, is the reasoning pattern that I think his case illustrates. My concern is not simply that the outcome was tragic. Poor outcomes alone do not prove poor care. My concern is that short-term signs of improvement appeared, in my view, to carry more weight than serious unresolved pathology in the background. This is the patient safety issue I want to highlight: discharge decisions can become too heavily influenced by a snapshot of how a patient looks on one day, rather than by the full trajectory and unresolved seriousness of their illness. A patient may have acceptable observations, a relatively low National Early Warning Score (NEWS), the ability to mobilise and an understandable wish to go home. But none of that necessarily means the underlying risk has gone away. That distinction matters. Observations tell us whether certain physiological measurements are abnormal at a particular moment. They do not, on their own, tell us whether infection has truly been brought under control, whether worrying imaging findings have been resolved, whether organ dysfunction is still evolving or whether a fragile improvement is likely to collapse after discharge. The danger, in my view, is that “safe for discharge” can slide into meaning “not obviously unstable right now.” Those are not the same thing. This case has left me with a lasting concern that healthcare systems may sometimes over-value point-in-time indicators of stability and under-value the wider pattern of serious disease. If that happens, discharge may be judged through too narrow a lens. The patient may look acceptable in the moment, but the unresolved pathology may still be severe enough to make discharge unsafe. This is not an argument against NEWS, against discharge or against trying to help people leave hospital promptly when it is appropriate. It is an argument for clinical reasoning that looks beyond the snapshot. When clinicians are considering discharge, especially in complex patients, I believe there should be a more explicit safety question: does this patient merely look stable today or is the overall clinical picture genuinely safe for discharge? That question requires more than observations. It requires attention to imaging, unresolved infection, organ function, co-morbidities, recent deterioration and the likely direction of travel once the patient leaves the ward. For families, the distinction can be life-changing. For patient safety, it may be system-changing. My hope in sharing this is not to assign blame, but to support learning. If one lesson can come from this death, I hope it is this: the bigger picture should never be overshadowed simply because a patient appears acceptable on observations on a particular day.

Training to support the development of expertise involving patients, families, carers and staff when things go wrong, in line with NHS guidance, based upon national and internationally recognised good practice. To include the duty of candour and ‘being open’ principles. This course covers the end-to-end systems-based patient safety incident response based upon the new NHS PSIRF and includes: Duty of candour regulations. Being open and apologising when things go wrong. Challenges/complexities associated with cases where there is more than one investigation. Effective communication, including dealing with conflict and difficult conversations. Effective involvement of those affected by a patient safety incident throughout the incident response process to ensure a thorough and richer investigation. Sharing findings. Signposting and support: including loss, trauma and stress. Who should attend? Lead investigators conducting patient safety incident investigations. Executive and service lead for duty of candour. Executive and service lead for patient safety. Executive and service lead for the supporting response to patient safety incidents. Investigators supporting patient safety incident investigations. Register hub members receive a 20% discount. Email [email protected] for discount code.

How the Patient Safety Framework and related investigations should work when serious incidents happen Join Making Families Count for a new series of lunchtime online seminars for families, carers, and health professionals. These free one-hour sessions bring together expert speakers with family carers to explore key issues in mental health care, patient confidentiality, suicide bereavement, and patient safety. Each event will include the opportunity to submit questions in advance. Whether you are supporting a loved one, working in health services, or seeking to better understand these issues, these sessions aim to provide practical insight, clearer understanding, and greater confidence. Led by: Ashley Windebank-Brooks, Head of Patient Safety at North Bristol NHS Trust Respondent: [Name to be confirmed] About this session This session will explain how the Patient Safety Framework and related investigations should work when serious incidents happen. Topics will include: What patient safety investigations are for. What families should be entitled to expect. What good practice looks like. How learning and accountability should be handled. A valuable session for anyone wanting to better understand how safety investigations should support learning, transparency, and improvement. Register

Families often struggle to give and get information about a loved one’s care “because of confidentiality” - find out how it should work Join Making Families Count for a new series of lunchtime online seminars for families, carers, and health professionals. These free one-hour sessions bring together expert speakers with family carers to explore key issues in mental health care, patient confidentiality, suicide bereavement, and patient safety. Each event will include the opportunity to submit questions in advance. Whether you are supporting a loved one, working in health services, or seeking to better understand these issues, these sessions aim to provide practical insight, clearer understanding, and greater confidence. Led by: Dr Sarah Constantine, Caldicott Guardian at Avon and Wiltshire Mental Health Partnership NHS Trust Respondent: Sam Robinson, MFC Lived Experience Director Families are often told they cannot receive information about a loved one’s care “because of confidentiality” — and often struggle to have the information they want to provide taken seriously. This session will explore: How confidentiality should work in mental health care What information families want to share and why it matters How families can and should help influence care and safety planning What best practice looks like in real life Ideal for: families, carers, clinicians, and mental health professionals. Register

The Cheshire and Merseyside Cancer Alliance (CMCA) were finalists in the 'Partnership Working to Improve the Experience' category at the Patient Experience Network 2025 Awards. In this blog, CMCA explain how patient stories are deliberately integrated into their governance, learning and pathway redesign, and how this approach transforms storytelling from passive listening into active improvement. Beyond data—listening to lived experience Modern healthcare systems are built on measurement. We track waiting times, referral-to-treatment targets, survival rates and performance indicators. These metrics are essential and tell us whether services are efficient, timely and clinically effective. Yet some of the most powerful drivers of improvement do not originate from a dashboard—they begin with a story. Cancer care is one of the most complex, emotionally charged and high-risk areas of healthcare delivery. A single cancer journey may span primary care, diagnostic services, multidisciplinary team (MDT) discussions, surgery, treatment, supportive services and palliative or end-of-life care. Along the way, patients navigate multiple appointments, handovers between teams and often life-altering decisions. Delays in diagnosis, unclear communication, fragmented pathways and missed escalation opportunities can have profound consequences. A cancer patient’s story does more than recount a sequence of clinical events. It reveals what mattered most to them in moments of uncertainty. It highlights where systems worked well—and where they did not. It brings into focus inequalities, access barriers and communication gaps. The question is no longer whether patient stories matter. It is how we use them responsibly, consistently and systematically to improve care. From patient story to structured improvement To create measurable impact, storytelling must move beyond powerful listening sessions. It must be embedded into structured quality improvement and safety culture. At CMCA, patient stories are deliberately integrated into governance, learning and pathway redesign. Stories are shared across meetings, events, training sessions and improvement programmes. Rather than treating stories as standalone testimonies, they are used to strengthen systems thinking. Each story prompts structured reflection: where were the faults in the pathway? what safety nets failed or were absent? how did workload pressures or process design contribute? were there missed opportunities to escalate concerns and could this scenario happen in our service today? This approach transforms storytelling from passive listening into active improvement. When patients see that their lived experience leads to tangible change, storytelling becomes partnership—not performance. On 23 May 2022, CMCA invited its first patient storyteller to a team away day. Hearing a personal cancer journey directly from someone with lived experience had a profound effect. It shifted conversations from abstract targets to real human impact. Since then, colleagues across the Alliance have increasingly invited patients to share their experiences to inform pathway redesign and programme development. Between 2022 and 2025, 73 patient stories have been shared. As a result, six significant changes have been implemented. These include improvements to the accessibility of diagnostic testing and the development of a patient engagement checklist for the pathology transformation programme. Other impacts are less immediately measurable but equally meaningful. Stories often leave a lasting impression, influencing how leaders think about service design long after the meeting ends. Empowerment through partnership For many patients, sharing their story is both courageous and empowering. Storytellers remain fully in control of what they share and how they share it. CMCA offers multiple formats—written narratives, audio recordings, video submissions or in-person presentations—ensuring that individuals can choose what feels safest and most authentic. One storyteller reflected: “Oh my word, it's always so amazing to know people hear what I say and take it in.” Another, a CMCA Patient Representative, shared: “Sharing a patient journey can feel daunting at first, but the team at CMCA have been empathetic, kind and supported me every step of the way. Knowing that my words can help others in some way gives me hope and helps me to heal.” Storytelling has also opened further opportunities for patient involvement. Some storytellers have joined project groups, contributed to service redesign or been connected to additional support services. What begins as a story can evolve into ongoing collaboration. Embedding the patient voice in leadership and education The influence of storytelling at CMCA has expanded beyond frontline teams. Patient stories are now a standing agenda item at Board and Diagnostics Board meetings, ensuring that strategic decisions remain grounded in lived reality. At one recent Board meeting, a storyteller who is both a wheelchair user and a cancer patient described the physical and systemic barriers they encountered across their pathway. The account was powerful and specific. It prompted Board members to commission a system-wide accessibility review—a direct example of lived experience shaping strategic action. Patient stories have also informed education. They became the foundation of the 123 Health Inequalities training programme, a CPD-accredited e-learning course developed by the CMCA Health Inequalities and Patient Experience team. Built from both staff and patient voice, the programme uses real experiences to illustrate how inequality manifests in everyday practice—and what professionals can do differently. As Jenny Brazier, Patient Engagement Senior Project Officer at CMCA, explains: “Listening to and acting on lived experience teaches us how to deliver better care and improve services for others. When we truly understand what matters most to patients and their loved ones, we create more equitable, person-centred care.” Conclusion: listening as a safety intervention In cancer care, success is often measured through survival rates, treatment standards and clinical outcomes. These are vital—but they do not tell the whole story. Safety is also about how patients experience their care. Did they feel heard? Were things explained clearly? Were they treated with dignity and supported during an incredibly vulnerable time? Patient stories are not just emotional accounts. They are practical tools for improvement. They help uncover risks that data may miss, reveal gaps in communication or coordination, and highlight where systems create barriers or inequalities. When listening is built into leadership and improvement work, it becomes a powerful safety intervention—helping ensure cancer care is not only effective, but truly centred on those who receive it. The Cheshire and Merseyside Cancer Alliance (CMCA) team. Further reading on the hub: How authentic patient stories can shift systems thinking and improve care Digital storytelling: Learning opportunity or reputational risk? Catching cancer early: what more can we do as GPs?

This webinar will bring together global experts and patient champions to explore how meaningful engagement of children, parents, and families can improve safety in newborn and child care and help reduce avoidable harm. The webinar will focus on: Why engaging children, parents, and families is essential for safe newborn and child care How Goal 1 can be implemented in practice at the point of care What health care workers, leaders, managers, and policymakers can do to enable meaningful engagement This webinar series is co-hosted by the World Health Organization, the International Pediatric Association, and the Child Health Task Force. One webinar will be organized each month, with each session focusing on a specific World Patient Safety Day Goal. Register