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In this blog, Siân Slade shares how, through her research interest into the difficulties of navigating the healthcare system in Australia, she created a policy and advocacy project: #NavigatingHealth. The aims of the project are to streamline the silos and address the fragmentation of healthcare by bringing together all those who are developing solutions to enable patients and carers to better navigate healthcare journeys.  Background About 10 years ago, I listened to a friend’s experience navigating cancer and puzzled over the challenges encountered. These made me question my prior assumption of 'patient-centricity' across healthcare. In 2015, the Organisation for Economic Co-operation and Development (OECD) released a report highlighting the complexities of the Australian healthcare system. This led me to realise that while we do have patient-centred care, it is often provider dependent, not system-wide, and relies on the patient (or carer) to navigate the system; a time when individuals are at their most vulnerable. Given 'the standard you accept is the standard you walk past”, I decided to do 'my bit' to address this. I enrolled in a Master of Public Health, researching healthcare navigation in Australia. I found there was a fragmented approach to try and address an already fragmented problem. This led me to embark on a PhD as well as develop a policy and advocacy platform: #NavigatingHealth. Setting up a national network and community of practice My focus has always been on a practical approach that solves problems for individuals but also seeks to understand how to scale these at a systems level to sustain change in the long-term. If this was a known problem, why was nothing being done to address it? Surely this was something government were addressing... or there must be an app? I spoke to lots of people—patients, carers, speakers at conferences, those who had written books of their healthcare experience and, yes, those developing apps. Everyone agreed it was a problem, but nothing was addressing the totality of the problem. The problem was not just in navigating healthcare, but also the challenges navigating related systems, such as those for people with disabilities, or for aged care, as well as social services and education. #NavigatingHealth started life as two, 60-minute webinars held in mid and late September 2021, supported by the Australian Disease Management Association. The inaugural webinar speakers provided vignettes across a life journey—from childhood through to getting older—based on their own lived-experiences as patients, carers or professionals (not-for-profit, health services and government). The positive reception of the webinars led to setting up a bimonthly national network and community of practice in Australia that ran until the end of 2024. The meetings were deliberately not recorded to build a safe space for people to share ideas, build tacit (word of mouth) knowledge and a like-minded solutions focused community. Summaries of all the events and speakers are available on the #NavigatingHealth project page. In health, information and projects evolve. Building an online community was low-cost and accessible to everyone. The success of the Australian approach led to a series of global webinars using the same format of expertise provision from individuals in research, policy, and advocacy and health services. The first global webinar was held in 2022 attracting over 20 countries. Connecting and collaborating The 'glocal' community continues to grow. Projects are constantly evolving, elevating and expanding as well as exiting often impacted by funding constraints. In the spirit of a complex adaptive learning health system, core to our success is the community knowledge built through relationships, trust, like-values and non-linear interactions. Taking an approach that is resourceful versus one requiring constant resourcing (we use accessible tools such as LinkedIn and more recently Bluesky) to provide an effective, free platform to keep individuals in touch with one another. Our dedicated #NavigatingHealth project page on the Nossal Institute for Global Health website at the University of Melbourne acts as a central hub for events and resources. The genesis during the pandemic and expansion virtually through Teams and Zoom, as well as in-person post-pandemic, has enabled different ways to expand the national community, the global network and we welcome all-comers. The project is voluntary and our success is based on linking people, developing relationships, sharing expertise, maintaining momentum and the opportunity we all have to impact into #NavigatingHealth. The annual forums, 2024 #NavigatingHealth Simplifying Complexity and 2025 #NavigatingHealth Enabling Patients, System-Wide, focused on bringing together colleagues nationally in Australia. The in-person workshops created the opportunity to build community, share ideas, leverage learnings and also provide educational content. These collaborations have allowed development of materials for curriculum and teaching, and an evolving conversation about the importance of systems-thinking. We developed a short global project collecting stories from individuals who are happy to be involved. Our video, NavigatingHealth - why this matters, provides a glimpse of our approach. Looking forward The Future of Health Report published in 2018 highlights that our health systems, locally and globally, will change from 'one size fits all' to one that is personalised. The challenge is how? Future of Health Report, CSIRO 2018. The 'secret sauce' is that by working collaboratively we can all be part of evolving and effecting systems change. The work is underpinned by equity and a focus on enabling early access to care, addressing barriers, such as financial or cultural constraints, and helping to make visible information asymmetries and power imbalances to ensure effective collaboration and co-production. Building on the success of our past forums, planning for 2026 is underway. Block out 1 April 2026 in your calendar for the inaugural #NavigatingHealth Day! Our collective expertise is our power—let’s do this! Want to know more? Please get in touch with Siân at [email protected] or via LinkedIn. Further reading on the hub: The challenges of navigating the healthcare system How the Patients Association helpline can help you navigate your care Lost in the system? NHS referrals

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

This constructive commentary reflects on two recent related publications, the Healthcare Safety Investigation Branch (HSIB) report, Variations in the delivery of palliative care services to adults, and an article from Sarcoma UK, Family insights from Dermot’s experience of sarcoma care. Drawing from these publications, Richard, brother-in-law of Dermot, gives a family perspective, calling for a more open discussion around how we can improve palliative care and sarcoma services, and why we must listen and act upon family and patient experience and insight. Update (9 August 2023): how patient stories are used is the subject of a current 'discovery phase' project led by the NHS Learn from patient safety events (LFPSE) service. See comments below this blog for more information. I believe it needs urgent attention, given my experience below, by ‘innovative’ bodies like HSIB who are meant to be exemplars- much more needs doing involving patients and families at the heart. Please participate. When my brother-in-law Dermot died from sarcoma, an aggressive cancer, the family were shocked at how fast it progressed, and the difficulties palliative services had in making a difference to his suffering. We wanted learning to come from our experience so that others need not go through the same trauma. We had never wanted a media scare story and we were not ‘complaining’ about the valuable NHS and associated services, which we know are on their knees with numerous resourcing and organisational challenges. We referred Dermot’s experience to HSIB because we wanted an investigation to be carried out by this novel, innovative, expert body to learn lessons at a general service system level. HSIB concluded their findings from the investigation in a report, Variations in the delivery of palliative care services to adults, which we welcome and support. The report touches on a real part of Dermot’s story and does provide a damning indictment of how much palliative services need to improve to provide a key national care service for anyone to access, wherever they live. However, due to the narrow scope and the methodology it uses it misses, in our opinion, many key issues of Dermot’s experience, all despite hours of our work as a family reading the medical notes, drafting and feeding back our perspectives, many times, over the course of two and half years. Our voice, insights validated by some experts in the field, recollections of what really happened, witness testimony, questions and suggestions, were harder to get fully and authentically expressed in the report. The family were disconcerted and frustrated that there were some key events that were either omitted, misrepresented or post hoc rationalised by services so as to create a story that does not wholly reflect what happened and the effect it had on Dermot and the family. Moreover, what is missed is what the family believe needs to happen to prevent a repeat trauma for others. Because of the complexity of Dermot’s case, we do not believe the report findings if implemented would make a significant enough difference to others with equally complex journeys. Fortunately, during Dermot’s sarcoma journey, the family made contact with two charities that had a patient advocacy and advice focus from trained staff with clinical nurse specialist experience. One was a local cancer charity that really understood the local services available to us, and the other was Sarcoma UK that understood sarcoma. Both encouraged open feedback and discussion from patients about what has to be done better and, vitally, the sharing of this more widely. Sarcoma UK has published our account in the article, Family insights from Dermot’s experience of sarcoma care. It covers many additional issues that were not in scope for the HSIB report, but are closely related to it – for example, patients’ experiences of services from early in the care pathway, which significantly impact their whole experience, and also the quality of care received. These cannot be neatly compartmentalised and definitely played a role in Dermot’s suffering. The family has profound regrets that this fuller experience has not been fully investigated despite detailed work by the family and correspondence and discussions with some national experts. We really hope this account starts useful and fruitful discussions with its positive and constructive suggestions. Our main recommendations examine in a clear accessible way issues like the dynamic nature of the diagnostic and prognostic process; post-surgical symptom monitoring, and the nature of expert support that is needed to enable timely, appropriate interventions should the illness deteriorate; and, finally, what implications these types of aggressive unpredictable illnesses have for delivery of all post-surgical services, including palliative services. It is designed for service providers looking at cross-service communication, but also highlights issues patients may want to consider on their journey, particularly post-surgery. Since the publication of the report, we have had correspondence with an eminent palliative expert who has suggested that the role of hands-on-specialist palliative staff and sarcoma experts does require more clarity and attention, which is not highlighted in the HSIB report but alluded to in our experience. We want to contribute our suggestions and our insights to inform service reflection and change. The NHS needs defending and resourcing, but it also needs an open, patient-centred learning culture. There is literature on ‘work as done’ and ‘work as imagined’, which is used to analyse professional work in the safety learning field. Our contribution suggests more work has to be done on ‘work as experienced by patients and families’ and ‘work as requested and needed by patients and families ‘ and how these interrelate to the ‘service-centred’ perspective, which we believe overly governed the investigation process. Are patient-centred investigations so unacceptable to the system learning process? They may, after all, provide real challenge to system-controlled processes which led to harm. We are grateful for Sarcoma UK for facilitating the expression of an alternative viewpoint at the same time as the important HSIB report, and for HSIB for giving space for a family statement in the report.

Unsafe medication practices and medication errors are a leading cause of injury and avoidable harm in health care systems across the world. WHO Patient Safety Flagship has initiated a series of monthly webinars on the topic of “WHO Global Patient Safety Challenge: Medication Without Harm”,. The main objective of the webinar series is support implementation of this WHO Global Patient Safety Challenge: Medication Without Harm at the country level. Considering the huge burden of medication-related harm, Medication Safety has also been selected as the theme for World Patient Safety Day 2022. With each transition of care (as patients move between health providers and settings), patients are vulnerable to changes, including changes in their healthcare team, health status, and medications. Discrepancies and miscommunication are common and lead to serious medication errors, especially during hospital admission and discharge. Countries and organizations need to optimise patient safety as patients navigate the healthcare system by setting long-term leadership commitment, defining goals to improve medication safety at transition points of care, developing a strategic plan with short- and long-term objectives, and establishing structures to ensure goals are achieved. At this webinar, you will be introduced to the WHO technical report on “Medication Safety in Transitions of Care,” including the key strategies for improving medication safety during transitions of care. Register

From the perspective of a service user, interactions with health and social care are often exceedingly difficult to navigate. The NHS’s traditional to approach to managing patient pathways has involved letters, appointments at set times, and stress for an individual needing to communicate that a planned consultation is no longer needed – or is needed more urgently. Knowing which service to access, and how to do so swiftly, can be particularly challenging. All this is inefficient and can lead to poor patient experience. As the service seeks to manage the backlog of care, and to meet the continuing demands of an unpredictable pandemic, that becomes particularly problematic. So how might healthcare organisations help move from patients who are passive participants in pathways to active partners, able to regularly communicate as their needs change? How might self-referrals and patient initiated follow up processes be more widely rolled out? What unpinning technology would be needed to make such a shift? This HSJ webinar, run in association with Salesforce, will bring together a small panel to discuss these issues. Register