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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

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

Following the launch of the Patients Association’s guide and animation providing patients with the knowledge and tools they need to be prepared to get the most out of their care, this webinar will also focus on how patients can be supported before, during and after appointments. This includes ensuring how as a patient, you: are prepared can prevent things going wrong understand what steps you can take at each stage of your journey through the health and care system. This will be chaired by Prof. Alf Collins, Patients Association trustee and previous National Clinical Director for personalised care at NHS England. He will be joined by: Sarah Tilsed, Patients Association's Head of Partnerships and Involvement Adam McDonald, a patient Curie Freeborn, a patient. Register

For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? This blog from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid, and encourages the patient community to share their experiences. What is ME and why is accessing care difficult? ME (myalgic encephalomyelitis, sometimes referred to as ME/CFS) is a complex, chronic condition affecting multiple body systems.[1] Symptoms include debilitating cognitive dysfunction and post exertional malaise (PEM)—the exacerbation of symptoms following exertion, which can sometimes lead to a long-term deterioration—the cardinal symptom of ME. Patients with ME have one of the worst qualities of life of any disease: lower than various forms of cancer, multiple sclerosis or chronic renal failure.[2] The most severely affected patients are reliant on full-time care, sometimes becoming unable to speak or swallow, and may require hospital care to avoid dehydration and malnutrition. Since 2020 at least two million people in the UK have been affected by Long Covid. Approximately half of those affected meet the criteria for ME (though not all have been formally diagnosed), alongside those who have developed other long-term health issues following Covid infections.[3] For people with ME and Long Covid, accessing healthcare, whether for these or other conditions, can be challenging. PEM means that it can be difficult to receive care without risking a deterioration in symptoms, especially when reasonable adjustments are not made to minimise the exertion involved. A lack of knowledge, misunderstanding and stigma around the conditions exacerbate the issue, sometimes making patients reluctant to seek care and clinicians unlikely to understand the adjustments that are needed. Together, these and other barriers mean that people with ME and Long Covid may avoid, delay or be completely unable to seek the care they need, creating risks for patient safety. Difficulties accessing care at home A 2023 public consultation highlighted failures in the health service that included the accessibility of NHS care for people with ME—particularly for housebound or bedbound patients.[4] This was echoed by a 2024 #ThereForME survey of over 300 people with ME and Long Covid (and their carers).[5] Two-thirds of people responding to our survey said that the NHS had not been there for them when they needed it. The overall accessibility of care was highlighted as a core concern. Housebound patients answering our survey reported struggling to get access to home visits for monitoring and routine screenings or even remote/phone appointments. Patients reported delaying or avoiding seeking care as a result, or in some cases turning to private care as the only option to facilitate routine investigations. Learnings from care for other conditions can show how similar barriers have been addressed—for example, progress in care for people with learning disabilities.[6] Hospital systems and environments People with ME and Long Covid often experience difficulties navigating energy-intensive NHS systems and hospital environments. For many, the process of arranging and receiving medical care may go well beyond their limited energy envelope. This includes challenges like inflexible booking systems, appointments that are changed or cancelled at short notice, long journeys to medical appointments or needing to coordinate with multiple referrals and clinicians. Patients may delay seeking care, even in emergencies, due to the toll that a busy hospital environment is likely to take on their chronic symptoms. Particularly in A&E and inpatient care, busy waiting rooms and hospital wards may exacerbate sensitivity to noise, light and movement. Patients may be unable to sit upright in waiting rooms for long periods of time without their symptoms being exacerbated. While reasonable adjustments are key to accessibility,[7] and the 2021 NICE Guideline for ME/CFS outlines some adjustments that may be needed,[1] knowledge of the Guideline is limited in the NHS and the majority of NHS Trusts and Integrated Care Boards are not implementing it.[8] More widely, limited knowledge about ME, and similarly Long Covid,[9] means that patients don’t receive treatment that is sensitive to their symptoms—and, crucially, that avoids exacerbating them—because clinicians lack basic knowledge. People with ME and Long Covid, who are often particularly vulnerable to infections, may also avoid seeking healthcare due to concerns about acquiring infections. Many people with Long Covid report deterioration after Covid reinfections,[10] as the pandemic continues far from the headlines and with few measures in place to prevent airborne transmission. This may also impact the ability of family carers to access healthcare themselves, fearing acquiring an infection which could set back their loved one’s health. Trauma in healthcare Traumatic experiences in healthcare also play a role. Many patients with ME and Long Covid have experienced feeling dismissed or disbelieved, sometimes discouraging them from seeking care in future. The 2024 #ThereForME survey documented multiple cases of patients who said that, due to such experiences, they would be reluctant to seek NHS care even if experiencing life-threatening symptoms, expressing a sentiment that they would ‘rather die at home’ than seek healthcare in an emergency.[5] ME is significantly more common among women,[11] meaning that experiences of stigma linked to the condition overlap with gendered experiences of healthcare,[12] including how pain among women is routinely dismissed. Sharing your experiences We hope this blog has shone a spotlight on some of the challenges people with ME and Long Covid face when accessing care. If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences: Have there been times where you delayed or were unable to access the care you needed due to these or other challenges? Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare? What would make the biggest difference to you to make care more accessible? Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care? We’ll be collating the experiences shared and exploring what can be done about it. You can share your experience by posting in the Comments field below or join our conversation in the Community area of the hub. References NICE. Myalgic encephalomyelitis (or encephalopathy)/chronic794457 fatigue syndrome: diagnosis and management. NICE guideline [NG206], 29 October 2021. Falk Hvidberg M, et al. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLOS One, 2015; https://doi.org/10.1371/journal.pone.0132421. Dehlia MA, Guthridge MA. The persistence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) after SARS-CoV-2 infection: A systematic review and meta-analysis. J Infection, 2024. Department of Health and Social Care, Department for Education and Department for Work and Pensions. Consultation outcome. Improving the experiences of people with ME/CFS: interim delivery plan, 9 August 2023. ThereForME. Building an NHS that’s there for Long Covid and ME, July 2024. Anderton M. Exploring deep sedation at home to support people with learning disabilities to access medical investigations with minimal distress. Patient Safety Learning, 17 July 2023. Brar P. Diagnostic safety: accessibility and adaptations–a (un)reasonable adjustment? Patient Safety Learning, 19 September 2024. Action for M.E. Patchy, Misunderstood and Overlooked Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in England Freedom of Information Findings Report, May 2023. Patient Safety Learning. Long Covid: Information gaps and the safety implications. Patient Safety Learning, 7 June 2021. WHO. Knocked back by COVID-19 reinfection – the experience of Abbie, a British nurse living with long COVID. World Health Organization, 30 November 2023. DecodeME. Initial findings from the DecodeME questionnaire data published, 24 August 2023. Anonymous. One hour with a women's health expert and finally I felt seen. Patient Safety Learning, 7 November 2024.

The Patients Association have launched a new animation and guide to help you feel more prepared and confident when managing your care. They cover what to do before, during, and after appointments, with tips on communicating with healthcare professionals, sharing important information, and avoiding issues. These resources were co-designed with patients from diverse backgrounds to ensure they’re practical and useful.