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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].

We hear time and time again on the hub about the lack of joined up care and communication within and across organisations. Patients and their families and carers not knowing who to contact to chase up a referral, having to travel miles for appointments, missing appointments because the letter didn’t arrive on time, or having to repeat the patient’s history and medications to every new healthcare professional they see because the notes haven’t been shared or clinicians "don’t have time to read them all". These issues are widespread and urgently need to be addressed if we are to prevent people falling through the gaps and suffering worse health outcomes. In this blog, Sue* shares her and her husband's experiences of trying to coordinate the healthcare system and highlights the challenges and frustrations they continuously face. Difficulties getting a diagnosis My husband Neil* has a very rare chronic condition that means unfortunately he is not managed in the area we live at as it’s a regional centre some miles away. We live in North Yorkshire, one of the largest geographical areas in the country, and we feed into various health economies. It took over 4 years and three different healthcare organisations before Neil got his diagnosis. Every time we see someone new we have to go through all of Neil’s medical history again, and then they often say that it’s not their area of expertise because they only deal directly with one area or speciality; they don't think of the patient as a whole. Whilst waiting to get the diagnosis, Neil had a heart attack so he was initially treated more locally to us but it was still over 40 miles away from where we live. When we called an ambulance for a second time he was taken to a different hospital from the first one he was treated in. So he was taken to two different geographical areas not even under the same trust. To add to this, Neil is also under lots of different specialities, i.e. rheumatology, general surgery, dermatology, respiratory and lipids. So he is being treated and has appointments in numerous places. Coordinating appointments and results With all these different specialties, even if they are within the same regional centre, none of the information is joined up or accessible, including blood results from the GP. We find that things are incorrect all the time and we spend a lot of time trying to coordinate Neil’s care and following up on test results, appointments, etc. Neil receives appointments in various ways—emails, phone calls, texts, letters, messages left on his answer phone. You might get a phone call followed by a letter, or you could get a message to say ignore the letter. You may miss a call but you don’t know which department to ring back because it usually comes up as an unknown number. Recently, Neil received a text message which said he was on a waiting list, but it didn’t say what it was for or what specialist department it was from. It said in the text that if you no longer wanted the appointment and wanted to cancel it, to follow a link, but we had no idea what the appointment was referring to or where it came from! As a patient you want to have some control over your health and be able to see all blood test results, scan results and letters from the hospitals. For example, it would be so much easier to look at Neil’s medications and patient letters if they were all in one place but you can't look at the medical records to see what's been said. The only way we can get it is waiting for the letter to be seen by the GP and then, eventually, added on to their system, but it's not always quick because again it's a different geographical area and systems that are disconnected. As a patient with a new disorder, you’re not familiar with the system. Neil was referred to other specialities from rheumatology. Unfortunately, the treatment plan. including tests or length of wait for appointments, isn’t shared directly with us. We rely on my note taking to ensure everything is completed and followed up. Often we end up going to an appointment without the tests Neil needs to have done due to the length of wait for the test, or the test being triaged and cancelled but this not communicated either to us or the referring doctor. The waiting for test results at the moment are long for some of these tests but if it was in your capacity to be able to seek or understand when you might possibly get them, you wouldn't then end up wasting an appointment. You would wait until you've had the results back or know when it might be. It could take us over two hours travelling time for a wasted appointment. We don’t want to waste our time and the time of others. Lack of communication Neil has radiotherapy coming up shortly and we've had no communications regarding it. I ended up making a phone call to inquire and was given a date. But we’ve still not received a phone call, no email, no letter or anything about it, even though they've got the date and time in their books. You can’t make plans, for example if you are trying to go away for the summer. If you’re waiting for a treatment, which on the NHS may take a while, you want to know when to expect the appointment. It’s a lot easier to manage your condition or diagnosis if you have the knowledge of when something's going to happen and you can manage your own expectations. Navigating the various healthcare apps To try and help with all of this we’ve been really keen to try and find a way to get all of Neil’s medical information, from many different organisations, together in one place and to rationalise appointments. We signed up to the NHS app which then put us on to System Online and then Neil was directed to AirMid UK. We've also found the Patients Know Best app which has been set up and says that you can access all your records but it seems to be only if an organisation has signed up to it. So we’ve got four apps to supposedly access the information but not one of them has all of Neil's information. We are actively looking for an online place which has all the information but none of it ties up. None of the apps give you the same information. We’ve asked our GP but he couldn’t help and hadn’t heard of some of the apps we’d found. A system that isn't working These are just a few examples of what we’re dealing with. I’m lucky as I have some medical knowledge so I know when we're missing something or waiting for something and I will chase up, but not everyone will have this knowledge. If it’s an older patient, or someone who hasn’t got family to support them, then they are on their own to navigate a very complex system. A system that isn't working. *The names in this blog have been changed to ensure anonymity. Are you a patient, relative or carer frustrated with navigating the healthcare system? Or is your GP practice or Trust doing something innovative to make it easier for patients? We would love to hear your stories. Please add to our community forum (you will need to register with the hub, it's free and easy to sign up) or email us at [email protected]. Related reading The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Margaret's story Navigating the healthcare system as a university student: My personal experience Lost in the system? NHS referrals "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023) Robust collaborative practice must become the bedrock of modern healthcare Robbie: A homeless patient’s struggles with the system Digital-only prescription requests: An elderly woman sent round the houses Lost in the system: the need for better admin Digital-only prescription requests: An elderly woman sent round the houses

Moving away from home and starting university has been a transformative experience. As an 18-year-old studying law and international relations, I’ve enjoyed the new found independence and academic challenges. However, persistent health issues have complicated my transition, leading to a frustrating journey through the healthcare system. My health struggles Since starting university, I’ve dealt with multiple colds and flu-like symptoms, some may call it ‘freshers flu’. A productive cough that lingered for over a month concerned me, but the situation took a serious turn when I started feeling dizzy and breathless with minimal exertion. Realising the severity of my condition, I knew I needed medical help. Seeking help: a series of missteps 1. Pharmacy visit My first stop was the local pharmacy. After describing my symptoms, the pharmacist suspected iron deficiency and recommended iron tablets. While this seemed plausible, my condition continued to worsen, prompting a call to my parents. 2. Exploring options: walk-in GP and NHS 111 My parents suggested visiting a walk-in GP, but I discovered none were available in my area. I then called NHS 111, hoping for guidance. They advised going to Accident and Emergency (A&E) but also mentioned they would request a GP call-back. Given the NHS’s known pressures, I was hesitant to visit A&E for what I didn’t consider an emergency. 3. Urgent treatment centre attempt My mum then suggested my local hospital’s urgent treatment centre. I mustered my energy to go there, only to be informed that I needed a GP appointment. They again suggested A&E. 4. Finally, A&E Feeling increasingly unwell, I headed to A&E. Although it felt like I was going in circles, this decision was crucial. At A&E, I was redirected to the urgent treatment centre where I finally saw an excellent doctor. I was seen quickly, diagnosed and given medication that soon began to help. A few days later, I received a message from NHS 111 stating that my request for a GP call-back had dropped off the system due to the delay. This entire experience has been eye-opening and frustrating. As a young and intelligent individual, I found navigating the healthcare system challenging. I can only imagine how overwhelming it must be for older adults, those with additional needs or those less familiar with the process. Lessons learned Navigating healthcare while dealing with a serious condition can be daunting. Here are some key takeaways from my experience that may help other university students or young adults who have moved away from home for the first time: Register with a local GP early As soon as you arrive at university, register with a local GP. It’s crucial to have access to medical care, especially when living away from home for the first time. Understand your options Familiarise yourself with the local healthcare facilities, including urgent treatment centres, walk-in clinics and A&E. Knowing where to go in different situations can save valuable time and stress. Persist and advocate for yourself Don’t be afraid to seek second opinions or alternative solutions if your initial attempts to get help are unsuccessful. Be persistent in advocating for your health needs. Stay informed about healthcare systems Understanding how the healthcare system works, including the pressures it faces, can help you make informed decisions about when and where to seek care. Moving forward Despite the hurdles, my health is now improving thanks to the excellent care I eventually received. This experience has taught me the importance of being proactive about my health and understanding the healthcare system. As I continue my university journey, I’ll be better prepared to navigate any future health challenges. If you’re a student facing similar issues, remember that you’re not alone. Reach out to university health services, friends and family for support. And most importantly, take your health seriously—it’s the foundation upon which all other successes are built. Reflections from my mother My mother, who is a healthcare professional working in the NHS, has had her own set of frustrations and concerns for me throughout this ordeal. She shares her own reflections on my experience: Frustration and helplessness Despite my extensive knowledge of the healthcare system, I felt powerless to help my child navigate the healthcare system from miles away. It was frustrating to be unable to fix the situation quickly and efficiently. Worry and concern Being far from home, I was naturally worried about my son’s health. The distance amplified my anxiety, knowing that they were dealing with worsening symptoms without immediate access to care. Concern for others I am also deeply concerned for other students and individuals who might be in similar situations but are not as vocal or persistent. How do they cope and navigate the system, especially those without a strong support network? Emotional impact This experience left me feeling upset and distressed. As a healthcare professional, I am acutely aware of the pressures on the NHS and the potential for patients to fall through the cracks. Seeing my own son’s struggle highlighted these issues in a very personal way. Are you a student or a young adult who has moved away from home for the first time? How easy have you found it accessing healthcare. We would love to hear your stories. Please comment below (you will need to register with the hub, it's free and easy to sign up), share your story in our community forum, or email us at [email protected]. Related reading The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Margaret's story The challenges of navigating the healthcare system: Sue's story Lost in the system? NHS referrals "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023) Robust collaborative practice must become the bedrock of modern healthcare Robbie: A homeless patient’s struggles with the system Digital-only prescription requests: An elderly woman sent round the houses Lost in the system: the need for better admin Digital-only prescription requests: An elderly woman sent round the houses

We hear time and time again on the hub about the lack of joined up care and communication within and across organisations. Patients and their families and carers not knowing who to contact to chase up a referral, systems not joined up, lack of communication, having to repeat the patient’s history and medications to every new healthcare professional they see because the notes haven’t been shared or clinicians "don’t have time to read them all". These issues are widespread and urgently need to be addressed if we are to prevent people falling through the gaps and suffering worse health outcomes. In this blog, *Margaret shares her and family's experiences of trying to coordinate their elderly father's upcoming surgery. Interoperability issues My father has dementia and has a complex set of health issues, as a lot of elderly people do. He has a number of comorbidities, including vascular, heart, and cognition and memory problems, that has meant coordinating his care between the care home, his GP, the local hospital and a specialist hospital has been quite complex. There have been multiple issues but there were two that stood out. The first issue was at the diagnostic stage. My father has severe vascular problems and he needed fairly urgent and necessary surgery. In order to assess whether he was suitable for surgery, given his heart condition, he needed a scan. We have had problems in the past in getting access to scans on his heart so the GP said in order to move things on quicker it would be good to get the scan done privately. As the surgery was urgent, we paid to get the scan done at a private diagnostic centre. However, when it came to getting the information from the private diagnostic centre to the tertiary hospital where he was being treated we encountered problems. The hospital couldn’t access the scans from the private hospital because they were two different systems which meant there was an interoperability issue as the two systems ‘didn’t talk to each other’. One of the suggestions I was given was that I could drive to the private diagnostic centre, which was about a 40 mile drive from my house, with a CD, and then they would download the scans onto the CD and I could then drive back to the hospital, which was about another 35 mile drive. There were multiple calls and this was really quite distressing for our family because we knew my father needed access to the scans urgently. In the end they said they’d do another scan in the hospital. Although I don't think there were any kind of safety issues with my father having another scan, it did mean that not only did it cause delays and stress for my father and the family, it was also a cost to the NHS, which could have been avoided. Communication problems between departments Then around the same time, the hospital wanted to do another scan on my father to prepare for the surgery. Again, as it was urgent, I kept ringing the hospital asking if he had his scan yet but because my father was under the vascular and cardiac departments it was often difficult to know who to speak to because one department needed information from the other and they hadn't received it. So I’d get through to one department who then told me to phone another department, or I would be put on hold by someone from admin who didn’t know the answer and would say they’d ring back but didn’t because they were very busy. As a carer/relative you don’t know what’s happening and you become worried that your loved one is lost in the system. I persisted in phoning but, coincidentally, at the same time my sister visited my father’s house to pick up some bits for him. She saw there was a letter from the hospital so she opened it and it was a letter inviting my father in to have an outpatient appointment scan in the hospital he was an inpatient in! I ended up going to PALS. The lady I spoke to was understanding, sympathetic, kind and highly efficient. But she told me this happened all the time as the radiology department doesn't have access to the hospital's IT system, so they wouldn't know my father was an inpatient and would have just invited him in in a timely way but they would have done that as if he was an outpatient. I coordinated between the different departments and we finally got the scan for my father, he had the surgery and survived. However, these delays could have compromised his health because the surgery was urgent and if he had deteriorated whilst waiting that may have killed him. As a family we were very conscious that time was of the essence and we had to push continuously. Lack of information given to families These are just two examples from a multiple of occasions where we as a family were trying to get information. My father was elderly and wouldn’t have questioned the doctor. And because of his cognition issues due to his dementia, and also because he was on high doses of pain medication, he becomes confused and we couldn’t always rely on what he told us. However, often the healthcare professionals wouldn’t tell us things, despite me being next of kin and with documented power of attorney, and told us to speak to my father. So as a carer or relative you are trying to join the dots and work within a health system that isn’t coordinated. What I want to see change On the face of it they may seem like quite small examples, but when they build up, they are significant in terms of risk. My father was a high-risk patient and if it wasn’t for our diligence and persistence he would have fallen through the cracks, to a significant detriment to his health. I didn’t want there to be avoidable harm, an investigation and ‘lessons learned.’ I want us to be working in a coordinated and proactive manner to recognise the risks and void any harm. And for that insight to be used to ensure systems and processes are improved for the benefit of other patients and families. Also, I want opportunities to share my experience, not as a formal complaint but for genuine interest in our family’s customer experience. Again, for learning and future preventative action not for blame. *The names in this blog have been changed to ensure anonymity. Are you a patient, relative or carer frustrated with navigating the healthcare system? Or is your GP practice or Trust doing something innovative to make it easier for patients? We would love to hear your stories. Please add to our community forum (you will need to register with the hub, it's free and easy to sign up) or email us at [email protected]. Related reading The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Sue's story Navigating the healthcare system as a university student: My personal experience Lost in the system? NHS referrals "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023) Robust collaborative practice must become the bedrock of modern healthcare Robbie: A homeless patient’s struggles with the system Digital-only prescription requests: An elderly woman sent round the houses Lost in the system: the need for better admin Digital-only prescription requests: An elderly woman sent round the houses

Navigating the healthcare system in the UK can be complex and frustrating for patients, families and carers. We hear time and time again on the hub 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 new series of blogs on the hub, patients and their relatives describe the challenges and barriers they have faced when trying to navigate the healthcare system.  Although every experience of navigating the healthcare system is different, the blogs in this series highlight some clear themes: Confusing communications and correspondence. Information not accessible across departments. Disjointed electronic systems, often not talking to each other. Concerns around the impact of delays to treatment and diagnostic tests. Near misses managed by patients and family members. Concerns for more vulnerable patients and those without advocates. The negative impact on mental health and stress levels. Not knowing who to contact to chase referrals, appointments or results. Read Sue’s story Sue’s husband Neil has a very rare chronic condition and is under the care of many different specialties. In this blog, Sue shares her and Neil’s experiences of trying to coordinate the healthcare system and highlights the challenges and frustrations they continuously face. Read David’s story In this blog, David shares his story about his elderly sister who has dementia, and a mix up with an urgent referral which led to a near miss. Read Margaret’s story Margaret’s father has dementia and a complex set of health issues. In this blog, Margaret shares her experience of trying to coordinate their elderly father's upcoming surgery. Read a university student’s story Moving to university is a big transition for many. In this anonymous blog, a student describes how persistent health issues led to a frustrating journey through the healthcare system. These stories illustrate how disjointed systems can affect patient and carer experiences and have a negative impact on health outcomes. Commenting on the issues highlighted in the series, Chief Executive of Patient Safety Learning, Helen Hughes says: “Poorly coordinated care is not only confusing and frustrating for patients but also creates safety risks that can result in serious avoidable harm. We hear many examples, such those covered in this blog series, of patients and their families facing a complex and fragmented healthcare environment. When they raise concerns about care and treatment, in too many cases they encounter an unresponsive system where they are left to ‘join the dots for patient safety’. 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.” 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]. Related reading Lost in the system? NHS referrals "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023) Robust collaborative practice must become the bedrock of modern healthcare Robbie: A homeless patient’s struggles with the system Digital-only prescription requests: An elderly woman sent round the houses Lost in the system: the need for better admin Digital-only prescription requests: An elderly woman sent round the houses

On the 13 February 2025, the Health Services Safety Investigations Body (HSSIB) published a report exploring how patient safety is managed across different organisational boundaries. This forms part of a series of reports looking at Safety Management System principles and their application to health and care. In this blog, Patient Safety Learning sets out its reflections on the findings of this investigation. 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 patient safety issues across organisational boundaries, by exploring the safety management activities of Integrated Care Boards (ICBs).[1] An ICB is a statutory NHS organisation responsible for bringing NHS and other partners together to plan and deliver services in an Integrated Care System (ICS). ICSs are partnerships that bring together organisations in specific geographical areas—there are currently 42 across England.[2] This HSSIB investigation focuses on the experiences of Ros and her husband and carer Norman, using their case to demonstrate the gaps in patient safety management when patients’ care is managed across multiple providers in an ICS. Reflecting on the findings of this report, in this blog we focus on four key subject areas: safety management systems reporting and learning from patient safety incidents ICBs and ICSs patients still having to join the dots of patient safety. Safety management systems The HSSIB report forms part of a series looking at the application of a safety management systems (SMSs) approach to health and care. HSSIB define this as: “A safety management system (SMS) is a proactive approach to managing safety that is used in other industries. It sets out the necessary organisational structures and accountabilities to manage safety risks. It requires safety management to be integrated into an organisation’s day-to-day activities.” There is a growing debate about the potential benefits of moving towards a SMS approach in healthcare, which is widely used to manage safety in different industries. HSSIB states that such an approach has four key components: Safety policy—establishes senior management's commitment to improve safety and outlines responsibilities; defining the way the organisation needs to be structured to meet safety goals. Safety risk management—which includes the identification of hazards (things that could cause harm) and risks (the likelihood of a hazard causing harm) and the assessment and mitigation of risks. Safety assurance—which involves the monitoring and measuring of safety performance (e.g., how effectively an organisation is managing risks), the continuous improvement of the SMS and evaluating the continued effectiveness of implemented risk controls. Safety promotion—which includes training, communication and other actions to support a positive safety culture within all levels of the workforce.[3] However, as the findings of their report highlight, we are currently a long way removed from such an approach in our health and care system. Emphasising this, it states: “There are no overarching principles that all healthcare providers and ICBs can use which enable a consistent and collaborative approach to the management of patient safety.” The report notes a particular gap around the role of ICBs, referencing the NHS Oversight Framework, which describes how oversight of NHS trusts, foundation trusts and ICBs operates. It highlights that this does not specify the day-to-day patient safety management activities to be undertaken by ICBs. The report’s key recommendation in this area is as follows: “HSSIB recommends that the Department of Health and Social Care, working with NHS England, uses the findings of this report to inform the development of the 10 Year Health Plan and NHS Quality Strategy. The intent of this recommendation is to encourage further exploration of how the safety management principles described in this report might be applied in health and care settings to improve patient safety.” Patient Safety Learning supports this recommendation. We think that a country-wide SMS would have the potential to provide a more structured and joined up approach to patient safety strategies, involving all the national bodies. We believe that integral to this is a standards-based framework to ensure safety, quality patient care, consistently delivered.[4] A patient safety standards framework helps organisations understand ‘what good looks like’ for patient safety and where more action is needed for improvement with clearly defined safety aims and goals. Such a framework will enable organisations and regulators to demonstrate a risk-based approach to patient safety and evidence achievement. It can provide assurance that patient safety sits at the organisation’s core, improves performance through increased effectiveness, and enables patients and families, staff, funders and communities to identify and differentiate good safety providers. This is a point we recently highlighted in our submission to the independent review of patient safety across the health and care landscape being led by Dr Penny Dash.[5] Reporting and learning from patient safety incidents In the last couple of years, the NHS has been transitioning to a new system for recording and analysing patient safety incidents. The former National Reporting and Learning System (NRLS) has been gradually phased out, with organisations moving onto the new Learn from Patient Safety Events (LfPSE) service.[6] This HSSIB investigation highlights a number of concerning issues relating to how effectively the LfPSE service supports the identification and management of patient safety risks across organisational boundaries. The report notes difficulties accessing and using data from the system with less analysis tools available compared to the previous NRLS. Worryingly, it states: “ICBs suggested that they needed to be building a picture of ICS risks, including those which involved cross-organisational boundaries, but they could not currently do this because of the usability of the LFPSE service and data.” The report does note that in response to these concerns some ICBs have developed local adaptations to compensate for this lack of visibility of patient safety risks within providers. It also says that NHS England has indicated it is developing a new Recorded Data Dashboard for LfPSE that will allow for greater analysis of incident records than was possible with NRLS. Considering these concerns, HSSIB makes the following safety observation: “Health and care organisations can improve patient safety by working together to identify the challenges with the practical use of the Learn from Patient Safety Events service to enable the identification of risks that span multiple providers. This is intended to identify the requirements and support needed to improve risk management.” On these issues, we feel more robust action is required. Sharing learning from patient safety incidents is a fundamental component of improving patient safety and delivering safe care. That LfPSE is not currently providing the means to analyse and share cross-organisational learning represents a significant missed opportunity. As the findings of the report demonstrate, local fixes, which may not be applied consistently across the NHS, are now required because of ICBs lack of visibility of patient safety risks within providers. At Patient Safety Learning we also have related concerns about the availability of LfPSE data beyond ICBs. Currently, individual trusts can see reports of their own data but not system-wide information to help them assess risk or engage with others. This can create a siloed approach where individual trusts or departments may benefit from their data but fail to contribute to a wider culture of safety improvement. We are also troubled that the outputs of local learning responses and safety incident investigations under the new Patient Safety Incident Response Framework (PSIRF) are not widely shared either within or across ICBs. We understand that the new initiatives, PSIRF and LfPSE, are intended to align so that there is a comprehensive and system-wide analysis with reports on the causes and contributory factors of avoidable harm and action needed to make improvement. However, this alignment is not currently reflected in practice. This is not an acceptable situation. The existing gaps in the LfPSE service are not simply a technical issue with a new digital service. They will result in missed opportunities to identify patient safety risks, learn from them and ultimately prevent avoidable harm to patients. We believe the Department of Health and Social Care and NHS England must now prioritise the development and improvement of LfPSE and its integration with PSIRF. Integrated Care Boards and Integrated Care Systems A theme that runs throughout the HSSIB report is the lack of clarity around the roles of ICBs and ICSs in patient safety. Its key findings highlight this, noting: “There is a difference in the perception of how patient safety is managed between ICBs and national health and care stakeholders, including the lines of safety accountability.” This lack of clarity can also be seen in a number of other examples in the report: Inconsistency in how ICBs have reported processes and responses when escalating safety risks to NHS England. If these do not fall within existing programmes of work, responses were described as “hit and miss”. Uncertainty about whether ICBs have oversight of provider collaboratives in relation to patient safety. This was described by an NHS England respondent as a “big black hole”. Varying approaches to safety management activities by ICBs. The report notes that while some undertake assurance visits, “these are limited by capacity and ICBs described a reliance on more reactive activities such as responding to incidents which had already occurred”. In a further example of this lack of clarity, at one point the report notes: “… a senior manager at NHS England told the investigation that while there is an expectation that ICBs will manage cross-organisational safety risks, NHS England “have not told ICBs they have to” do this or “flagged this” in planning or operational guidance. The investigation acknowledges that PSIRF guidance refers to management of cross-organisational safety risks. However, this does not direct how cross-organisational safety risks should be managed more generally outside of PSIRF.” Patient Safety Learning believes action is required to create clarity about the role of ICBs and ICSs in patient safety. We set this out previously in in our report, The elephant in the room: Patient safety and Integrated Care Systems.[7] One means of addressing this gap could be through implementing a SMS approach in health and care, with ICBs and ICSs tasked with a clear leadership role for system safety. This is another point we recently highlighted in our submission to the independent review of patient safety across the health and care landscape.[5] We believe that there is potential at an ICS level to develop an integrated and coordinated approach to safety, reflecting patient care pathways across systems and ensuring consistency and collaboration. Patients still having to join the dots of patient safety 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 changes and in holding the system to account. We identify this as one of our six foundations of safer care in our report, A Blueprint for Action.[8] The importance of patient feedback is reflected in the HSSIB report, which notes that: “Patients and carers are an important source of feedback to ICBs about patient safety risks across organisational boundaries. However, this can create inequities as some people are more able than others to make their voice heard.” There is no doubt that insights and feedback from patients and carers can provide ICBs with valuable information on patient safety risks, within organisations and across organisational boundaries. However, this must be accompanied by a structured and resourced framework for gathering these insights otherwise the visibility of these insights are likely to favour those patients and carers who are more adept and confident at making their voices heard. As noted by Norman in his own reflections on his carer role for Ros: "Norman told the investigation that he was getting the care Ros needed through his actions and that he was aware of other patients whose families did not have as strong an advocate as him. He said this affected their ability to get the care they needed, and that 'there are a lot of us out here trying to look after patients'.” While points around safety management systems, LfPSE and ICB/ICS roles and responsibilities can appear detached from day-to-day care, ultimately their impact comes back to the patient. As noted by the First Do No Harm report of the Independent Medicines and Medical Devices Safety Review, patients impacted by avoidable harm and unsafe care often have to ‘join the dots of patient safety’ in response to systemic failures.[9] If we fail to address these systemic failures, they will result in patient safety risks that come with a very real human cost. References HSSIB. Safety management systems: accountability across organisational boundaries, 13 February 2025. NHS England. What are integrated care systems? Last accessed 10 February 2025. HSSIB. Safety management systems: an introduction for healthcare, 18 October 2023. Patient Safety Learning, Standards: What Good Looks Like, Last accessed 10 February 2025. Department of Health and Social Care, Review of patient safety across the health and care landscape: terms of reference, 15 October 2024. NHS England. Learn from patient safety events (LFPSE) service, Last accessed 10 February 2025. Patent Safety Learning. The elephant in the room: Patient safety and integrated care systems, 11 July 2023. Patient Safety Learning, The Patient-Safe Future: A Blueprint For Action, 2019. The IMMDS Review, First Do No Harm: The report of the Independent Medicines and Medical Devices Safety Review, 8 July 2020.

Effective communication is key to patient safety in healthcare, where clear, consistent exchanges among professionals help prevent medical errors and improve outcomes. Miscommunication—often due to high workloads, time constraints and hierarchical barriers—can lead to treatment delays, errors and even harm to patients. Healthcare facilities that foster open dialogue, use structured protocols (like SBAR) and implement technologies, such as electronic health records, can significantly reduce risks. By promoting a culture that encourages team input, training in active listening and the use of secure messaging, healthcare providers can create safer environments and build trust with patients. Communication is an essential component of delivering high-quality healthcare. In busy environments, where every minute counts, effective interactions between healthcare professionals can significantly affect patient safety, leading to better outcomes and better working environments. Importance of effective communication in healthcare Effective communication is critical in healthcare, where the margin for error is small and the stakes are high. Every interaction between healthcare professionals—whether during handovers, in critical decision-making moments or routine patient care—relies on clear, accurate communication to ensure patient safety. Inconsistent or unclear communication can lead to misunderstandings, such as medical errors, treatment delays and, ultimately, harm to the patient. In fast-paced environments like hospitals, where multiple disciplines and professionals must work in tandem, the ability to communicate effectively ensures that vital information is passed accurately and in a timely manner. This includes everything from verbal exchanges during patient handovers to the use of electronic health records and written communication. Communication in patient safety can be divided into two categories: Preventing adverse events: This involves effective communication among healthcare providers and between providers and patients to prevent errors that could harm the patient. Responding to adverse events: This involves clear and timely communication to address adverse events, including coordination among medical teams, discussions with patients and their families, and implementing changes to prevent similar incidents in the future. Meeting these needs requires all healthcare providers to have solid written, verbal and non-verbal communication abilities. Furthermore, teams must have access to effective electronic communication tools, which can include secure messaging platforms, nurse call systems and specialised two-way radios for hospitals and healthcare facilities. Institutions that implement effective communication benefit in the following ways: Transparent, timely communication reduces errors and misunderstandings that lead to adverse patient outcomes. Solid communication practices result in better and faster decision making. Improved information flow leads to great patient satisfaction and continuation of care where required. Effective communication between healthcare workers reduces stress and increases job satisfaction, leading to higher levels of care. The link between communication and patient safety Poor communication in healthcare settings can compromise patient safety through errors and misunderstandings. In the worst cases, it can even result in harm, leading to a significant loss of trust. Indeed, a recent systematic review protocol suggested that ineffective communication contributed to over 60% of hospital adverse events in the USA.[1] Some of the most frequent communication mistakes led to medication errors, treatment delays, and even wrong-site surgery. Standardised communication devices are also instrumental in coordinating patient transfers and emergency responses, as well as dealing with security threats in a timely fashion. Common communication barriers in healthcare settings Several factors hinder effective communication in healthcare settings. Here are some of the most common barriers. Time constraints Healthcare professionals operate in busy environments, with understaffing a massive issue in many institutions. Operating under these conditions can lead to rushed communications and misunderstandings, which can directly impact patient health. High workloads High levels of stress and burnout are sadly all too common in healthcare. These problems can impact the quality of patient care, leading to communication errors. Environmental factors Lighting, PPE equipment, physical distance, and excess noise are just a few of the environmental factors that hinder communication, potentially contributing to compromised patient safety. Language differences The healthcare system's diverse mix of nationalities and cultures can lead to communication difficulties. These problems can occur between staff and patients, with both scenarios impacting patient safety. Hierarchical bias Hierarchical differences between staff and disciplines can affect patient safety. For example, many junior doctors feel too intimidated to report safety concerns to senior colleagues, while some physicians ignore input from nurses. Communication strategies within healthcare disciplines Solving communication issues in healthcare requires a mix of open dialogue, training, and technology. Additionally, healthcare institutions must also introduce standardised communication protocols. Let’s explore each element below. Open dialogue Fostering open dialogue can help improve patient safety. Establishing a culture that encourages input from all team members is important, as is training on active listening and inclusive leadership. Training Training has a huge role to play in patient safety. Adequate training and education can have a big impact on a wide variety of issues that obstruct effective communication. Teaching time management and prioritization techniques can reduce errors made under pressure. Additionally, as a recent study shows, educating doctors on the benefits of taking a seat while talking to patients enhanced doctor-patient experiences.[2] Furthermore, hospital administrators must provide suitable support for staff and encourage the development of effective workflow management strategies and a bigger focus on wellness and resilience in the face of stress. Technology Technology can solve many of the issues surrounding poor communication in healthcare settings. Electronic Patient Record (EPR) systems can offer a single source of truth, radio-powered communication devices can overcome environmental barriers, and HIPAA-compliant secure messaging platforms can help providers share information in real-time. Communication protocols Establishing clear protocols around communication can measurably improve patient health. Some of the most impactful ideas here include: Using structured communication like SBAR (Situation, Background, Assessment, Recommendation). Clearly defining which roles are responsible for specific types of communication. Standardising how information is shared among co-workers and during handovers. Outlining clear escalation protocols to ensure timely interventions. Promoting a culture of safety by encouraging staff to “speak up” about issues. Closing thoughts In summary, effective communication is fundamental to patient safety, requiring robust protocols, open dialogue, and the integration of technology and training. A recent co-report from the Patients Association and the Practice Managers' Association titled “I Love the NHS, but…” highlighted the severe consequences of poor healthcare communication, revealing that more than half of respondents had experienced communication failures within the NHS, with one in ten indicating adverse health outcomes as a result.[3] To create safer healthcare environments, it is crucial for all stakeholders to advocate for improved communication practices. By fostering transparency and collaboration, we can enhance patient care and build a healthcare system that prioritises safety and trust. References Howick J, Solomon J, Nockels K, et al. How does communication affect patient safety? Protocol for a systematic review and logic model. BMJ Open 2024;14:e085312. doi:10.1136/ bmjopen-2024-085312. Golden BP, Tackett S, Kobayashi K, et al. Wall-mounted folding chairs to promote resident physician sitting at the hospital bedside. J Hospital Med 2024; https://doi.org/10.1002/jhm.13271. Burton-Douglas T, De Costa A, Gomez G, et al. “I love the NHS, but... Preventing needless harms caused by poor communication in the NHS. November 2023.