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On the 10 April 2025, the Health Services Safety Investigations Body (HSSIB) published a report looking at how care is co-ordinated for people with long-term conditions. In particular, the investigation considered the role of ‘care co-ordinator’ to understand how care is co-ordinated within the existing workforce. In this blog, Patient Safety Learning sets out its reflections on the findings and recommendations in this report. HSSIB investigates patient safety concerns across the NHS in England and in independent healthcare settings where safety learning could also help to improve NHS care. Their latest report looks at primary and community care co-ordination for people with long-term conditions, specifically considering the role of ‘care coordinator’ in this context.[1] While language around the care coordination is varied, the role of care co-ordinated is defined by NHS England as follows: “Care co-ordinators help to co-ordinate and navigate care across the health and care system, helping people make the right connections, with the right teams at the right time. They can support people to become more active in their own health and care and are skilled in assessing people’s changing needs. Care co-ordinators are effective in bringing together multidisciplinary teams to support people’s complex health and care needs.”[2] In this blog we set out our reflections on the findings and recommendations in this HSSIB investigation. Challenges navigating the healthcare system Navigating the healthcare system in the UK can be complex and frustrating for patients, families and carers. At Patient Safety Learning we hear time and time again about the lack of joined up care and communication within and across organisations. Failing to share the right information at the right time can create significant patient safety risks. Poor communications, both with patients and between healthcare professionals, can result in misunderstandings and mistakes resulting in poor outcomes and potentially patient harm. In a recent series of blogs published on the hub, patients and their relatives shared with us the challenges and barriers they have faced when trying to navigate the healthcare system.[3] The concerns and issues raised in this HSSIB investigation echo many of the key themes we identified in our new blog series. Confusing communications HSSIB’s report refers to the case of a child prescribed anti-epileptic medication by a specialist hospital to reduce the number and severity of their seizures. It then details the difficulties the parents subsequently found in getting this medication through their GP or consultant. The parents highlighted concerns about the lack of communication between the separate services, with the report noting: “The parents told the investigation that they were ‘exhausted’ because of the effort they had had to put in over the years to connect services together, having to tell the same story over and over again, while having to provide care for their child.” Delays to treatment The investigation report also highlights the case of a middle-aged professional working man who suffered a stroke. He received hospital care to treat and manage his healthcare needs; however, once discharged he encountered significant difficulties when seeking appropriate support for his additional healthcare needs. HSSIB highlighted how he had told them it required significant effort from him directly to ensure the right level of care was maintained for his needs. Recounting his experience, the report states: “He said that these multiple agencies ‘all operate in their own silos’ and not as a team, and that ‘there was nobody to create that team [a cross-system team aware of all his health and care concerns]’. The way that he and his wife cope with this situation is that they ‘manage the team’ to connect the individual parts of the system and get the care he needs.” Impact on mental health HSSIB also spoke to a man in his late seventies who is the main carer for his wife. She has multiple long-term conditions that require primary, secondary and community care. Reflecting on the impact that coordinating her care had on their lives, the report noted: “The husband explained that his role of care co-ordinator had placed a considerable burden on him, which led him to ‘feel overwhelmed’. He said that because he needing to act as her ‘co-ordinator’ he was unable to spend time with his wife as her husband. He also described having to administer medication and dress his wife’s wound which caused her considerable pain.” HSSIB’s investigation also highlights broader areas of concern relating to the coordination of care in the healthcare system, again mirroring themes raised we heard from patients in our recent blog series. Difficulties sharing information The investigation highlights a recurring concern around problems sharing patient information and the negative impact of this on coordinating a patient’s care. It highlights both issues of digital systems in different organisations not being compatible with one another and other barriers, stating: “Healthcare professionals described the challenges in information sharing. Digital patient records could not be viewed across primary, community, secondary and tertiary care because information technology systems are unable to ‘talk to each other’. They also said that sometimes they were unsure whether patient information could be shared as it was ‘protected information’. This was a particular problem when trying to share information between health and social care.” A complex and confusing system The report also reflects more broadly on how accessing and navigating health and care services can be difficult and complex, and potentially overwhelming for patients. This was highlighted by examples such as this from the investigation: “A GP practice told the investigation that it had tried to put together an easy-to-read document explaining the care pathway for patients with dementia, including contact numbers and ways to access services. The GP practice went on to say that the system was so complex that it was unable to bring together all the information. It stated: ‘We are healthcare professionals and we can’t do this, so how can patients cope?’” Safety recommendations A theme that runs throughout HSSIB’s investigation is that there is a clear need and support for the role of care co-ordination. It highlights that while patients and carers can, and often do, themselves act in this role, when they are unwell or unable to do so a patient’s care can be significantly impacted. The report states that the availability of care co-ordination varies widely across the system. This is a particular issue for those living with multiple long-term conditions as there is no single centralised care co-ordination function to span across primary, secondary and tertiary care. Concluding its investigation, HSSIB recommends that: NHS England/Department of Health and Social Care, working with other relevant organisations, reviews and evaluates the implementation of the care co-ordinator role. This is to ensure that all patients with long-term conditions have their care co-ordinated and that they have a single point of contact 24 hours a day, 7 days a week, to help them with any queries or concerns that they may have. The Department of Health and Social Care works with NHS England and other stakeholders to develop a strategy that ensures that all diseases are given parity and that all people with a long-term condition in primary, secondary, tertiary and community or social care have their care effectively co-ordinated across multiple agencies. This is to ensure that people with long-term health conditions have co-ordinated care plans with effective communication between services and a single point of contact for concerns or questions. Patient Safety Learning agrees that there needs to be greater time and investment into care coordination. On the first recommendation, we would note that seeking to ensure all patients with long-term conditions have a single point of contact 24 hours of day, 7 days a week, would be a significant shift from the status quo. This would require a clear commitment of both financial and workforce resources from NHS England and the Department of Health and Social Care to deliver. In considering how this might be approached, it would also be important to consider: How this can be flexible depending on the long-term condition in question. Different conditions will require different levels and types of coordination. Systemic barriers that result in many of the difficulties navigating the care system would not be addressed by implementing this recommendation. For example: – We would continue to have various digital systems in primary, secondary and tertiary care that lack interoperability (the ability of computer systems or software to exchange and make use of information). – Non-digital communication barriers that prevent cross-organisational sharing of information in the NHS, ranging from data sharing restrictions to cultural attitudes within organisations, would also remain. On the second recommendation we agree with the principle of this, that there needs to be parity for people with a long-term condition and an expectation that their care is effectively co-ordinated across multiple agencies. Poorly coordinated care is not only confusing and frustrating for patients but also creates safety risks that can result in serious avoidable harm. Concluding comments The challenges of navigating the healthcare system discussed in this report are not a new issue, but a long-standing set of problems that do not have a simple solution. Their impact on patient experiences and outcomes is exacerbated in the current environment, when our healthcare system that is under increasing pressure and in a “critical condition”.[4] Patient Safety Learning believes that care co-ordination should form an important area of focus for the UK Government’s forthcoming 10 Year Health Plan. If it is to achieve its strategic ‘shift’ of moving the future of the NHS from "hospital to community" this will require a healthcare system where patients aren’t simply left to "join the dots for patient safety".[5] This will require organisational and leadership commitment to take forward the issues raised in this HSSIB investigation. The needs of patients should be central to improving health and care services, actively listening and acting on their experiences and insights when things go wrong for safety improvement. References HSSIB. Workforce and patient safety: primary and community care co-ordination for people with long-term conditions, 10 April 2025. NHS England. Care co-ordinators, Last accessed 10 April 2025. Patient Safety Learning. The challenges of navigating the healthcare system, 24 February 2025. UK Parliament. NHS: Independent Investigation, Hansard, Volume 753, 12 September 2024. Department of Health and Social Care, Independent report: Review into the operational effectiveness of the Care Quality Commission, 15 October 2024. Related reading Digital-only prescription requests: An elderly woman sent round the houses How the Patients Association helpline can help you navigate your care Lost in the system? NHS referrals Navigating the healthcare system as a university student: My personal experience The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Sue's story Share your story What has been your experience of navigating the healthcare system? What is and isn’t working? How does it feel as a patient or carer when you hit barriers? Has your health been affected? Share your story in our community forum or contact our editorial team at [email protected].

At Patient Safety Learning, we believe listening and learning from different perspectives, expertise and experiences is essential in understanding the complexities, challenges and potential solutions around patient safety issues. Reducing avoidable harm in health and social care cannot be done in isolation; collaboration is key.  In this blog, we reflect on some of this year’s activities and celebrate people who are working together for safer care and recognising the value of different perspectives.  Background In 2019 we launched a free online platform for anyone interested in patient safety - the hub – designed to help people share learning. Since then, the hub has had over 1.4 million visitors, and today it is a thriving, global community of people. By connecting patients, frontline staff, managers, families, researchers, medtech companies, regulators, policy makers, patient safety partners and many more, the hub offers a unique space for people to work together to improve patient safety. More recently, the hub has also provided an online space and support for several networks of people involved in patient safety. We are helping to facilitate deep and psychologically safe conversations among peers about some of the most challenging and inspiring aspects of patient safety. Discussions are varied, with members exploring topics like how to engage with patients and families following an incident, building a just culture, and how best to collaborate for safety. Celebrating collaborative working Experts in a room Electronic patient records (EPRs) are a way of managing clinical information with the intention of making it more easily accessible to both healthcare professionals and patients. EPR systems have the potential to improve quality and safety, patient treatment, increase efficiency and reduce the costs of healthcare. However, it has become increasingly evident that introducing EPR systems comes with serious patient safety risks. In June, Patient Safety Learning held a virtual roundtable session with a group of experts who had been affected by EPR issues. Together, they discussed the patient safety risks and avoidable harm associated with these systems. Those collaborative conversations became a catalyst for our new report, in which we set out ten principles that aim to put patient safety considerations at the heart of the design, development and rollout of EPR systems. The report gained interest across digital publications, social media and national news, and crucially with key stakeholders in healthcare. A great example of how the collaborative discussions from a roundtable event can help instigate further debate. Earlier in the year, we worked with AQUA to facilitate a workshop (hosted by the Royal College of Surgeons of Edinburgh) for Patient Safety Partners and their managers. With the Patient Safety Partner role only being introduced recently, we wanted to gather those who had rapidly become experts through experience, to share their early insights and learning. Conversations were rich and varied, but the overall focus of the day was to start to identify ‘what good looks like’ in relation to embedding the role effectively. A number of themes were covered including recruitment and induction, role clarity, influencing and impact. We captured these conversations in a series of blogs which have now formed part of our recently published Patient Safety Partners toolkit of resources. We have received overwhelmingly positive feedback on the toolkit, designed to help Patient Safety Partners, their managers and anyone interested in embedding the role well. The power of community the hub is home to a growing number of networks for people involved in patient safety, including patient safety managers and specialists, Patient Safety Partners and organisational leaders with patient safety expertise and responsibility. These communities of interest are forums that provide peer support, sharing of knowledge, and examples of good practice from the ‘patient safety frontline’. Building on conversations taking place in the network meetings, we worked with the Patient Safety Management Network and the Patient Safety Education Network to plan an event. In the autumn this came to fruition, and we held our first Patient Safety Symposium focused on implementing the Patient Safety Incident Response Framework (PSIRF) tools and methods. We also launched a new book at the event - ‘The emerging applications of safety science’, a wonderful collaboration with many contributors. The event provided a fantastic opportunity for people to come together and have more of those energetic network conversations and share valuable insights in person. Together, attendees were able to work through, and learn how to apply those ‘how to’ tools. It was great to have such a diverse range of participants at this event. One table featured student nurses, a representative from NHS England, a GP and a senior director from an independent trust. This was a genuine and much valued flattened hierarchy that enabled confident engagement and shared learning. Feedback was very positive with many people highlighting the value of working collaboratively on the day, and beyond. “It was an excellent networking opportunity, and I have since been in contact with a new peer. We have shared our current Patient Safety Incident Investigation reports and provided a critical friend approach to each other.” Attendee. Feedback on being part of the Patient Safety Management Network also highlights the impact of their regular meetings: "The network has been an excellent platform to learn from peers across the country. I have not come across any other platform such as this. I use it as my go-to for practical problem-solving ideas and there are always plenty of them, for all sectors.” Patient Safety Specialist at an Integrated Care Board. The collective wisdom and innovative thinking that emerges from the networks highlights the power of community when it comes to making progress in patient safety. It is unsurprising perhaps that we are increasingly being approached by NHS England and other key patient safety stakeholders who are seeking to collaborate with the networks we support. This presents valuable opportunity to feed that collective frontline wisdom into wider policy development. Patient focused collaboration At Patient Safety Learning, we believe that patients should be engaged for safety at the point of care, if things go wrong, in improving services, advocating for change and in holding the system to account. Our editorial team has worked with many people who have been directly or indirectly impacted by unsafe care and want to share their insights to inform positive change. Their voices and experiences provide a powerful source of knowledge, and we are grateful that so many have felt able to share these with us through the hub. With an increased emphasis on patient and family involvement in patient safety in the NHS, we are beginning to hear more examples of staff and organisations actively seeking ways to listen to the views and insights of patients. Embedding the Patient Safety Partner role will be key to enabling this. In a presentation for the hub, Lea Tiernan, Patient Safety Engagement Manager, and Armine Afrikian, a Patient Safety Partner, explain how they have worked together to develop the role at Imperial College Healthcare NHS Trust. It provides an excellent example of how trusts can work truly collaboratively with Patient Safety Partners and support them to influence safety at a strategic and operational level. There are many people and organisations working hard to evidence the power of engaging patients in safety improvements and research. This year, we spoke to Anthony O’Connor, who explained the benefits of co-production and listening to lived experience, in two blogs for the hub. We also worked with UK charity Sands, to shine a light on their listening project. Julia Clark and Mehali Patel from their research team draw on the project to illustrate the value of working with bereaved parents. Julia and Mehali explain why hearing and amplifying these unique insights is vital to developing safer, more equitable neonatal and maternity care. In a blog for the hub, Miriam Levin from Demos highlighted the findings from their report “I love the NHS but…” Preventing needless harms caused by poor communication in the NHS. The report looked at everyday harms caused to people as they move through the NHS and try and get the care they need. Demos spoke to 2000 patients and staff about their experiences of health and care, and poor communication from the NHS came out as a significant issue for many people. Summary It is clear that a variety of voices, experiences and expertise is hugely beneficial when it comes to making progress in patient safety. At Patient Safety Learning we continue to proactively seek opportunities to collaborate with others, share individual and collective insights through the hub, and influence key stakeholders and policies. Over the coming months no doubt the networks and the hub will continue to thrive, fuelled by the power of collaboration and the many voices that contribute. As people come together to address patient safety challenges, our collective understanding and knowledge around potential solutions can only deepen and refine – paving the way for a patient-safe future. Join the hub Do you have insights to share around patient safety? Are you a member of the hub? Why not join our global community today (it’s free and easy to sign up). When you’ve registered, you’ll be able to submit an article, share a resource, start conversations in the forum and collaborate with other members. You’ll also have the option to request to join the networks we support. Related content Developing the Patient Safety Partner role: Imperial College Healthcare NHS Trust share their approach Patient engagement resource section on the hub Collaborating for safety: We need to make space for each other NHS England and NHS Improvement: Framework for involving patients in patient safety (29 June 2021)