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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

At Patient Safety Learning we believe that sharing insights and learning is vital to improving outcomes and reducing harm. That's why we created the hub; providing a space for people to come together and share their experiences, resources and good practice examples.  Dementia is an umbrella term for a number of diseases that affect the brain, with Alzheimer’s disease its most common cause. We have picked a range of resources and reflections about keeping people with dementia safe in health and care settings, and when considering medication choices. 1 Alzheimer's Society: Checklist for possible dementia symptoms This checklist has been developed by the Alzheimer’s Society to allow patients to check symptoms that could be a possible sign of dementia. Endorsed by the Royal College of General Practitioners (RCGP), it is a simple tool to help patients and their families clearly communicate their symptoms and concerns to a GP or other healthcare professional. 2 Seeing the unseen: Rethinking dementia diagnosis Across 2024 and 2025, Alzheimer’s Research UK surveyed more than 500 people affected by dementia and over 160 healthcare professionals to understand the realities of diagnosis. This report shares findings from this process and considers what works, what gets in the way, and what needs to change. 3 Health and social care support for people with dementia The Care Quality Commission (CQC) looked at people's experiences of living with dementia when using health and adult social care services, including the experiences of families and carers. It sets out the main themes that influence whether an experience is good or poor, and what health and care services are doing to improve these experiences. CQC will use the findings in this report to help shape their work to define what good care looks like for people with dementia and inform the next phase of CQC’s Dementia Strategy. 4 Keeping patients with dementia safe: an interview with Alison Keizer and Fran Hamilton When people with dementia enter a new healthcare setting, the environment may be confusing and difficult to navigate. They may be unable to use their usual coping strategies and have difficulty communicating their needs and concerns to staff. This can present a wide range of risks to their safety while accessing care. In this interview, Alison Keizer, trust-wide Dementia Lead, and Fran Hamilton, Occupational Therapist and Deputy Dementia Lead at Sussex Community NHS Foundation Trust, describe the patient safety issues affecting patients with dementia and suggest how they can be supported to reduce these risks. 5 World Alzheimer Report 2025: Reimagining life with dementia – the power of rehabilitation This report from Alzheimer's Disease International explores the important topic of dementia rehabilitation, combining expert essays and real-world case studies from multiple countries globally to examine how the concept is defined and implemented, as well as practical considerations of how to best adapt rehabilitation practices for people living with dementia in different contexts. 6 National Audit of Dementia: Spotlight Audit in Memory Assessment Services 2023/24 This report examines waiting times, access to assessments, treatment, and post-diagnostic support for people with dementia in memory assessment services. The results indicate that there is still a great deal of variation between services in key results such as average waiting time for patients, the proportion of patients diagnosed with dementia, and the provision of post diagnostic support and therapy. 7 The role of integrated care systems in improving dementia diagnosis The Alzheimer’s Society commissioned The King’s Fund to explore the development of Integrated Care Systems (ICSs) through the lens of dementia diagnosis—to consider what opportunities ICSs present to approach dementia differently and to improve diagnosis rates by doing so. The research team explored enablers and barriers to improving dementia diagnosis through interviews with stakeholders and people affected by dementia in three case study ICSs. 8 Alzheimer's Society: 'This is me' leaflet This simple leaflet was developed by the Alzheimer's Society for anyone living with dementia, or experiencing delirium or other communication difficulties. It provides a central place where those closest to the person can fill in key information about them, such as their preferred name, cultural background, routines and likes and dislikes. The leaflet can then be shown to health and social care professionals in new and unknown settings to help them better understand the person and deliver care that is tailored to their individual needs. 9 Dementia UK: Making the home safe and comfortable for a person with dementia Dementia can have a significant impact on a person’s daily life, including how well they function within their home. Memory issues or problems recognising and interpreting the objects around them can cause the person frustration or create safety issues. Dementia UK have produced a leaflet with tips and guidance on how to make the home more safe for someone with dementia. 10 Alzheimer's Society: Tips for carers - questions to ask the doctor about antipsychotics Antipsychotic drugs may be prescribed for people with dementia who develop symptoms such as aggression and psychosis. This webpage from the Alzheimer's Society provides information on the prescription of antipsychotic medications for people living with dementia. It describes their potential side effects and includes a list of helpful questions that carers should ask healthcare professionals before the person they care for is prescribed antipsychotic medication. 11 Assessment, diagnosis, care and support for people with dementia and their carers: A national clinical guideline These national clinical guidelines from Health Improvement Scotland, the first to be published in nearly 20 years, provide recommendations on the assessment, treatment and support of adults living with dementia. It calls for greater awareness of pre-death grief for people with dementia, their carers and their loved ones, as they fear the loss of the person they know. To accompany the guidelines, a podcast has been produced by Health Improvement Scotland speaking to professionals, including Dr Adam Daly, Chair of Healthcare Improvement Scotland’s Guideline Development Group and a Consultant in old age psychiatry, and Jacqueline Thompson, a nurse consultant and the lead on pre-grief death for the guideline. 12 Alzheimer’s Society: Improving access to a timely and accurate diagnosis of dementia in England, Wales and Northern Ireland A formal diagnosis of dementia can help people living with the condition and their families gain a better understanding of what to expect and help to inform important decisions about treatment, support and care. This report from the Alzheimer's Society highlights the barriers to accessing a timely and accurate dementia diagnosis and advocate for practical changes and tangible solutions to overcome them. 13 The current state of dementia diagnosis and care in England The current dementia care system remains fragmented, underfunded, and difficult to navigate, leaving many individuals and families unsupported. In response to these systemic challenges, Care England, in partnership with Dementia Forward and care providers, conducted a national survey in January 2025. This initiative aimed to capture the experiences of people living with dementia, their families, and care staff. The findings highlight significant gaps and inequalities in the dementia care pathway and inform a set of urgent policy recommendations. 14 Raising awareness of normal pressure hydrocephalus: an often misdiagnosed condition Normal pressure hydrocephalus (NPH) is a progressive neurological condition that comes under the dementia umbrella. In NPH, the cerebrospinal fluid-filled ventricles within the brain expand and distort the surrounding tissues. This process causes the neurological symptoms of NPH. Unlike other forms of hydrocephalus, NPH does not result in significantly raised intracranial pressure. NPH is often misdiagnosed as it is similar to neurodegenerative conditions such as Parkinson’s disease and other causes of dementia, such as Alzheimer's disease. However, unlike these other conditions, if diagnosed early there is an effective treatment that can significantly slow disease progression and potentially improve, or even reverse, symptoms in some people. 15 The training gap: a hidden injustice in dementia care and how to fix it This report from Alzheimer's UK reveals huge gaps in dementia training across social care: half of staff receive just one to two hours of dementia learning despite 70% of care home residents living with the condition. It argues that these shortfalls in training are leaving social care staff unprepared, unsupported, and putting people with dementia at risk of inadequate care. It calls on the government to build a bold and ambitious dementia plan, which includes mandatory dementia training for care staff. 16 Alzheimer's Society: Unlocking the door to dementia diagnosis and treatments Systems designed to diagnose and support people with dementia are struggling to keep pace, with delays, inequalities and missed opportunities far too common. Too many people have a poor experience, wait too long for a diagnosis and receive less treatment and support than clinical guidance says they should. Everyone with dementia has the right to an early and accurate diagnosis and the best available treatments. Alzheimer's Society’s two 'Unlocking the door' reports lay out a stark reality – and a clear programme of reform for England, Wales and Northern Ireland. For more resources, take a look at our Dementia area of the hub. Do you have a resource or story to share about dementia or a related condition? Could your insights or experiences help improve patient safety? Leave a comment below (join the hub for free first) or contact us at [email protected].

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

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

Parkinson’s is the fastest growing neurological condition in the world. It can affect young or old, and in the UK, around 153,000 people are living with the condition. With population growth and ageing, this figure is estimated to increase by 20%, within the next ten years. At the moment, there is no cure for Parkinson’s, but medication plays a vital role in managing symptoms and preventing deterioration. People with Parkinson’s face a number of specific patient safety issues when accessing healthcare including communication difficulties and risks associated with medication delays. In this blog, Patient Safety Learning has pulled together 14 useful resources about Parkinson’s shared on the hub. They include guidance for patients and their families about hospital stays and medication, and awareness-raising resources for healthcare professionals about the patient safety issues people with Parkinson’s face. 1. Keeping patients with Parkinson’s safe in hospital: 4 key actions for staff Dr Rowan Wathes, Associate Director of the Parkinson's Excellence Network at Parkinson's UK, recommends four key actions that healthcare workers can take to improve safety for people with Parkinson’s while they are in hospital. 2. Parkinson's UK: Parkinson's Away-From-Home Kit This kit from the Parkinson's UK Excellence Network comes from 3 years of collaboration with people with Parkinson’s and carers to understand the challenges they face when going into hospital and how we can help. People with Parkinson’s can choose from a range of tools to create a kit that works for them. Every item is designed to support them, and those who care for them, to advocate for their Parkinson's medications to be administered on time, every time. 3. Nurses leading the way: enhancing Parkinson's care in nursing homes In this blog published by the Royal College of Nursing, Jean Almond, Programme Manager at Parkinson's UK, discusses improving the delivery of time critical Parkinson’s medication to care home residents. 4. Preparing to go into hospital – tips for people with Parkinson's and their carers In this blog, Laura Cockram, Head of Policy and Campaigning at Parkinson's UK, talks about how people with Parkinson’s can prepare their medication to go into hospital. 5. Time-critical Parkinson’s medication: the human cost of delays and mistakes In this blog, Joanne explains how delays to her mother’s time-critical medication in hospital led to her condition deteriorating. 6. Time critical medication guides for health professionals The Parkinson’s Excellence Network has produced three practical guides to support UK health professionals to deliver time critical Parkinson’s medication on time in hospital: a guide for NHS ward staff, a guide for hospital pharmacists and a swallowing guide for the nurse in charge and ward staff. 7. Electronic prescribing: how it can improve the delivery of time critical medications This resource describes how NHS Ayrshire & Arran hospitals improved their rates for administering patients' Parkinson's medications on time, sharing case studies and tips on how other hospitals might be able to replicate their successful e-prescribing system. 8. Improving the delivery of time critical medications at Bradford Teaching Hospitals NHS Foundation Trust A best practice case study showcasing a quality improvement project at Bradford Teaching Hospitals NHS Foundation Trust. 9. Ask the expert: How to spot fake Parkinson’s medicines online Falsified, fake or counterfeit medicines are medicines disguising themselves as authentic, and they can pose significant health risks. This blog highlights the issue of counterfeit Parkinson's medications being sold illegally online. Mike Isles, Executive Director of the Alliance for Safe Online Pharmacy in the EU describes their high prevalence and gives tips for people with Parkinson's on how to stay safe when buying medicines online. 10. My Parkinson's passport This tool from the Parkinson's Association of Ireland allows people with Parkinson's to record their essential medical information in an easy to access format, should they need assistance or medical treatment. 11. Parkinson's awareness: a 15-minute online presentation for ward staff This 15-minute training video by the Parkinson's Excellence Network pulls together the key symptoms and issues that can affect a person with Parkinson's and their care when admitted to a hospital ward. It aims to help ward staff understand the most important considerations when caring for people with Parkinson's. 12. Medication delays: A huge risk for inpatients with Parkinson’s This blog examines the serious health implications of delayed medication in people with Parkinson’s. It highlights evidence that this is a widespread safety issue and outlines the challenges, barriers and solutions to ensuring patients receive their medication on time. 13. Parkinson’s UK Tech Guide Parkinson’s UK created the Tech Guide so that people with Parkinson’s, and their families, friends and carers, can make the right decisions for themselves about all the devices and apps that claim to be able to help improve their quality of life. To do this, they provide trusted reviews based on the lived experience of people with Parkinson’s, and maintain a catalogue of the various products that are on the market. This is backed up with information about Parkinson’s and evidence-based articles that will help you decide what’s right for you, in your unique circumstances. 14. NHS Northumbria Healthcare: Improving the care in hospital for people with Parkinson’s In this blog, consultant geriatrician, Dr James Fisher, talks about a project at NHS Northumbria Healthcare to improve the experience of Parkinson’s patients by focusing on medication. Have your say Are you a healthcare professional who works with people with Parkinson’s? We would love to hear your insights and share resources you have developed. Do you have, or do you care for someone with Parkinson’s? Please share your experience of health and care services with us. We would love to hear from you! Comment below (register for free here first). Get in touch with us directly to share your insights.

Eating Disorders Awareness Week takes place 23 February - 1 March 2026 Eating disorders are complex mental health conditions that affect an estimated 1.25 million people in the UK. There are many unhelpful myths about who eating disorders affect, what the symptoms are and how to support people in recovery. Alongside a current lack of appropriately trained staff and capacity in mental health services, this can make it challenging for people with eating disorders to access the help and support they need. Patient Safety Learning has pulled together 15 useful resources shared on the hub to help healthcare professionals, friends and family support people with eating disorders. They include awareness-raising blogs, practical tips for patients and their loved ones, and clinical guidance for primary, secondary and mental health providers. 1 Hope Virgo: What needs to happen to stop people with eating disorders being failed by the healthcare system? In this blog, Hope Virgo, author and Secretariat for the All Party Parliamentary Group (APPG) on Eating Disorders, examines the crisis that continues in eating disorder services in the UK and the devastating impact this is having on patients and their families. She highlights how failures in services lead to avoidable deaths. Hope shares the key recommendations from a new report by the APPG and calls for adequate funding and attention to ensure people with eating disorders receive the help they need to recover. 2 Beyond stereotypes: A lived experience guide to navigating support for disordered eating Disordered eating can affect anyone, but it can be confusing to understand and recognise it in our own personal experiences. This guide, published by East London NHS Foundation Trust, is a snapshot of how adults in East London have navigated those experiences of uncertainty while seeking support for disordered eating. For many of the contributors, preconceptions about what an eating disorder is (or isn’t) have previously acted as a barrier to seeking or receiving support. It also contains advice on how to seek support for disordered eating. 3 ARFID: A brief evidence review Avoidant/restrictive Food Intake Disorder (ARFID) is a severe feeding and eating disorder marked by food avoidance and/or restricted food intake. Individuals with ARFID can restrict the amount of food eaten, and therefore do not get enough calories, or they can restrict the range of foods eaten and therefore do not get all the nutrients needed for maintaining health. The charity Beat has produced an evidence review on ARFID. 4 Leaflet - Seeking treatment for an eating disorder If someone suspects they may have an eating disorder, their first step in getting treatment is often a visit to their GP. This leaflet contains guidance for people who have, or suspect they may have, an eating disorder, as well as information for GPs and other people who may be supporting them. It’s based on the guideline on eating disorders from the National Institute for Health and Care Excellence (NICE), which GPs should use when making decisions about patients’ healthcare. 5 Feeding or eating disorders hub (NHS England) The NHS England MindEd all-age eating disorders hub is aimed at all professionals, from universal to specialist. It contains key trusted evidence-based learning, curated and approved by an expert panel. You can find information on NHS policy guidance, professional bodies' guidance, professional associations' reports, charities, NHS learning and good practice, legislation and reports, and key and influential texts. 6 People with eating disorders should not face stigma in the health system and barriers to accessing support - a blog by Hope Virgo People with eating disorders often find it difficult to get help and treatment from the health system because of pervasive stigma, misinformation and stereotypes around eating disorders. This blog by eating disorder survivor and mental health campaigner, Hope Virgo, looks at the barriers people face when they try to access support for eating disorders in the UK. She talks about her own experience of being told she was ‘not thin enough for support’ and calls for long-overdue action on funding, training and awareness of eating disorders within the NHS. 7 Medical emergencies in eating disorders (MEED): Guidance on recognition and management To tackle the serious harms, up to and including death, associated with eating disorders it is crucial that more is done to identify them at the earliest stage possible so that the appropriate care and treatment can be provided. This guidance by the Royal College of Psychiatrists provides a comprehensive overview of the latest evidence associated with eating disorders, including highlighting the importance and role of healthcare professionals from right across the spectrum recognising their responsibilities in this area. 8 I survived diabulimia, the world’s most dangerous eating disorder Sarah Rainey talks about her experience of type 1 diabetes with disordered eating (T1DE), which is thought to affect up to 40% of women and 15% of men with type 1 diabetes. People with T1DE, sometimes also called diabulimia, limit their insulin intake to control their weight, which can have life-threatening consequences. Olivia describes how the stress of living with type 1 contributed to her developing T1DE, and how when she finally received treatment and support in her 30s, she was able to deal with her disordered eating and see her health and wellbeing improve. 9 London Assembly Health Committee: Eating Disorders in London In June 2023, the London Assembly Health Committee launched an investigation into eating disorders in London, following reports that referrals for eating disorder services have increased in recent years and performance against waiting time standards dropped during the COVID-19 pandemic. The aim of this investigation was to understand what is driving the increase in referrals, how services are responding to this additional demand and to explore people’s access to, experiences of, and outcomes from treatment services. The report makes 12 recommendations for change. 10 SAPHNA - Eating disorder toolkit This toolkit was co-produced by the School and Public Health Nurses Association (SAPHNA) with school nursing services, mental health campaigners, eating disorder experts, education colleagues and young people with lived-experience of eating disorders. It provides information and guidance for school nurses on how to identify and support students with eating disorders and their families, addressing issues such as consent, confidentiality and referral to specialist services. 11 Tips poster: First signs of symptoms of an eating disorder When someone has an eating disorder, getting early support and treatment can make a huge difference to their recovery. That’s why it's important that everyone can spot the first signs and symptoms of an eating disorder. This poster by the charity Beat Eating Disorders offers tips to help you spot the very first signs of an eating disorder. 12 Eating disorders: a guide for friends and family This booklet from Beat Eating Disorders is for anyone supporting someone with an eating disorder. It covers information about eating disorders and treatment, and offers guidance on how you might approach the subject if you’re worried about someone you know and how to support them after diagnosis, as well as looking after yourself. 13 Medical emergencies in eating disorders: Guidance on recognition and management People with eating disorders can reach a crisis point where their condition becomes a medical emergency resulting in serious harm or even death. This guidance from the Royal College of Psychiatrists makes a series of recommendations for primary care, secondary care and mental health services that aim to make preventable deaths due to eating disorders a thing of the past. There are specific recommendations focused on the needs of children with eating disorders, recognising the physiological differences between adults and children. 14 In conversation with Hope Virgo: “The withdrawal of treatment from people with eating disorders is a national crisis that’s being ignored.” A growing number of patients with eating disorders are reporting having treatment withdrawn by services, often without notice and without their consent. We spoke to eating disorder campaigner Hope Virgo about how pressures on services, enduring stigma around eating disorders and dangerous new narratives are leading to the practice of treatment withdrawal. Hope explains how this is affecting vulnerable patients and highlights that as the number of people developing eating disorders increases, the risks to patient safety will only get worse. 15 National Audit of Eating Disorders Service Mapping Report 2025 The National Audit of Eating Disorders (NAED) is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England as part of the National Clinical Audit and Patient Outcomes Programme. In 2025 the NAED team conducted a comprehensive mapping of eating disorder service provision across England. This report provides an in-depth overview of NHS-funded and independent sector services for children, young people, and adults. Have your say Are you a healthcare professional who works with people with eating disorders? We would love to hear your insights and share resources you have developed. Perhaps you have received treatment for an eating disorder—what was your experience of healthcare services? We would love to hear from you! Comment below (register for free first) Get in touch with us directly to share your insights

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