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John Bradley Williamson was a spinal surgeon whose work later became the subject of investigations and reviews following concerns raised by former patients regarding surgical outcomes and complications. Many of his patients experienced long-term health problems, additional corrective surgeries, chronic pain, and lasting physical and psychological harm. The case has since received national media attention and prompted wider discussions around patient safety, oversight, follow-up care and how concerns are communicated to patients. Simon Wainwright, a former patient affected by the spinal surgery carried out by John Bradley Williamson, has lived with the long-term complications that have required multiple corrective operations across several hospitals. Simon reflects on the gap between the recommendations made in investigation reports and the realities patients face, and how patients like himself are often left to navigate the long-lasting complications largely on their own.  Over the years, there have been formal reviews and reports into what happened to patients operated on by consultant spinal surgeon John Bradley Williamson, and many recommendations made.[1][2][3] Although these processes are important, there remains a gap between the recommendations written in these reports and the reality patients continue to experience years later. Although there are processes described on paper that sound reassuring, many patients still feel they are left to navigate ongoing complications, uncertainty and fragmented care largely on their own. One example of this is the concept of a “patient-initiated review.” A patient-initiated review essentially means that patients themselves are expected to come forward if they have concerns about the care or surgery they received. In theory, this sounds positive—giving patients the opportunity to come forward if they have concerns, ask questions or seek reassessment. However, in practice, it raises an important question: how will patients even know this option exists? Many patients are not routinely followed up long-term, may have moved areas or may not realise that the symptoms they are living with could be connected to a previous surgery. By relying on patients to initiate this themselves, without proactive communication and outreach, there is a real risk that affected patients remain unaware that support or review pathways are available to them at all. There is often an assumption that primary care services will help identify and support these patients, but the reality is more complicated. GPs may not have access to a patient’s complete historical surgical information, particularly when treatment occurred many years ago or across multiple hospitals. This means some patients can easily fall through gaps in the system unless there is a coordinated and proactive approach. For patients like me, the impact is not limited to a single procedure. It is ongoing—affecting physical health, independence, mental wellbeing, family life, the ability to work and live normally, and confidence in the healthcare system itself. In my own experience, the consequences did not end after the original surgery. I have required multiple corrective operations across different hospitals and continue to live with the long-term physical and emotional effects. What has been difficult at times is feeling that patients are expected to coordinate much of this themselves; patients are often left chasing information rather than being actively supported through the process. I would like to see genuine commitment to patient safety and learning, with communication clear, proactive and accessible. Patients should not have to discover reviews through the media, search online for information themselves, or rely on chance conversations to understand what support may be available to them. Affected patients should be directly contacted wherever possible, given clear information in accessible language, and offered appropriate long-term clinical and psychological support. This is not just about past events – it is about ensuring that patients are not left behind in the process of reviewing and learning from them. Real accountability is not just about producing reports. It is about ensuring patients feel informed, listened to and supported long after the headlines disappear. References tps://www.northerncarealliance.nhs.uk/about-us/nca-independent-report-previous-management-concerns-regarding-consultant-spinal-surgeon?q=%2Fabout-us%2Fnca-independent-report-previous-management-concerns-regarding-consultant-spinal-surgeon https://www.northerncarealliance.nhs.uk/application/files/5516/8985/5202/SPSLBR_Report_Final_060623_redacted.pdf Spinal-diagnostic-Final-report.pdf

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

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

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