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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

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.

Stephen Heard is a Patient Safety Partner at Norfolk Community Health and Care Trust. He is also, as an RAF veteran himself, employed by Arden and GEM Commissioning Support Unit as one of a small part time team of regional leads for the Royal College of GPs (RCGP) veteran friendly accreditation scheme. In this blog, he explains how GP practices can support veterans and their families in ensuring they are and remain safe after transiting from the services into civilian life. He lists a number of services that veterans (anyone who has served at least one day in HM Forces) can be signposted to as part of their civilian care. Stephen emphasises that many veterans are vulnerable on transition and access to these programmes preferably via a veteran friendly GP practice can be critical to their safety. Research has shown that the first port of call for a veteran seeking help will often be the local GP practice. I would like to emphasise to you and your colleagues the significance of the Royal College of General Practitioners Veteran Friendly Accreditation Scheme for primary care, as endorsed by NHS England in alignment with the Armed Forces Covenant. The Veteran Friendly Accreditation Scheme shows staff at GP practices how to handle queries from the 2.4 million veterans nationally (+3m dependents) and signpost them to the most appropriate pathway or support group as per the list below: Op Restore: The Veterans Physical Health and Wellbeing Service provides specialist care and support to veterans who have physical health problems as a result of their time in the Armed Forces. https://www.england.nhs.uk/commissioning/commissioned-services/ Op Courage: The Veterans Mental Health and Wellbeing Service is a dedicated mental health service for individuals leaving the Armed Forces (those within 6 months of leaving the military in England), veterans and reservists. NHS commissioning » Nationally commissioned services (england.nhs.uk) or [email protected] Op Nova: Provides one to one non clinical support to veterans who are at risk of being arrested or already have been, are due to leave prison or have been released from prison. Op NOVA | Forces Employment Charity Op Community: Provides care navigation and signposting to the wider Armed Forces community with a specific focus on Serving families. www.armedforcesnetwork.org/armed-forces-community/families/single-point-of-contact/ Op Fortitude: Delivers a centralised referral pathway into veteran supported housing. www.riverside.org.uk/care-and-support/veterans/opfortitude/ Op Sterling: Programme to help older LGBT+ veterans, service personnel and their families. www.ageuk.org.uk/our-impact/programmes/how-we-deliver-advice/operation-sterling/ Veterans Prosthetics Panel (VPP): Funding on a named veteran basis to NHS Disablement Service Centres (DSC) to ensure that veterans who have service attributable limb loss can access high quality prosthetics. www.nhs.uk/nhs-services/armed-forces-community/veterans-service-leavers-non-mobilised-reservists/ Integrated Personal Commissioning for Veterans Framework (IPC4V): Delivers a personalised care approach for the small number of Armed Forces personnel who have complex and enduring physical, neurological and mental health conditions that are attributable to injury whilst in Service. www.england.nhs.uk/commissioning/armed-forces/integrated-personal-commissioning-for-veterans-ipc4v/ Personalised care for veterans. NHS England and the MOD have published a new personalised care approach for those veterans who have a long-term physical, mental or neurological health condition or disability. www.england.nhs.uk/personalisedcare/ipc-for-veterans/personalised-care-for-veterans/ There are also the following linked programmes: Veteran Aware: Operated by the Veterans Covenant Healthcare Alliance (VCHA) to improve NHS care for the Armed Forces community by supporting trusts, health boards and other providers (Acute, Community and Mental Health) to identify, develop and showcase the best standards of care. https://veteranaware.nhs.uk/ Step into Health: NHS Employers scheme to facilitate employment for service leavers and their families. https://www.militarystepintohealth.nhs.uk/ Veteran Friendly Framework: Designed to accredit care homes to improve their awareness of the needs for veterans. https://www.britishlegion.org.uk/get-involved/things-to-do/campaigns-policy-and-research/campaigns/veteran-friendly-framework Many Veterans are vulnerable and access to these programmes is critical to their safety. Integrated Care Boards will often have Veterans within the Core20plus5 NHS England Health Inequality Improvement framework, designed to reduce healthcare inequalities.

NHS Resolution’s Safety and Learning team in collaboration with the NW panel law firms, are hosting a virtual forum series on learning from claims to promote reflection and improve patient care. The purpose is to raise awareness of the support offered by NHS Resolution as your General Practice indemnifier along with the North West panel firms; Weightmans, Hempsons and Hill Dickinson. This will be of interest to both clinical and non-clinical staff involved in patient care across primary and urgent care . The format is interactive, with presentations followed by questions and panel discussion. Session 1: Seeking support for claims The session will explain how NHS Resolution, and its panel firms, will support you in responding to claims along with an overview of the legal tests used to determine a claim and the steps involved. Event programme: Introduction to the GP Indemnity scheme and clinical negligence Q&A panel discussion Contributors: • Patricia Roe - Partner | Hempsons • Dr Anwar Khan - Senior Clinical Advisor for General Practice, NHS Resolution Register

In this first webinar of the Changes in Primary Care series, Dr Claire Fuller, Medical Director of Primary Care at NHS England will discuss the new reception team alongside frontline general practice staff. Register for the webinar

During the pandemic, reports of abuse directed at doctors’ surgery staff and community pharmacy teams across West Yorkshire have increased. In response, the West Yorkshire Health and Care Partnership has launched a new insight driven campaign called ‘leaving a gap’ to make people think about the consequences of abusive behaviour. Co-produced with staff and patients, the campaign recognises that services are extremely busy, and it can be frustrating for people accessing care. The campaign reminds people we’re all here to help each other and the importance of all round understanding and kindness. A series of striking images created as part of the campaign aim to make people think about the gap that will be left if staff leave their role due to abuse. Please share the 'Leaving a gap' campaign message by displaying it in your public spaces, publishing it on your website and via social media. You can use the assets provided on this page to help; there are A4 and A5 size posters as well as social media images, a website banner and hero image and an animated video you can download.