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NHS England has set a target that cervical cancer will be eliminated in England by 2040. Although progress has been made in detecting and treating cervical cancer, there are still many women who are reluctant to go for cervical screening, or who face barriers to accessing screening. These barriers include perceived discrimination, lack of understanding the risk of cervical cancer and unmet access needs. This contributes to persistent health inequalities amongst particular groups. Patient Safety Learning has pulled together nine useful resources shared on the hub about how to improve access and overcome barriers to cervical screening. 1. Cervical screening, my way: Women's attitudes and solutions to improve uptake of cervical screening This research by Healthwatch explored why some women are hesitant to go for cervical screening. Based on the findings of a survey of more than 2,400 women who were hesitant about screening, it makes recommendations to policymakers on how to improve uptake, including: improvements to the way data about the disability and ethnicity of people attending screening. producing an NHS-branded trauma card for affected women to bring to appointments. ensuring staff are effectively trained on accessibility and adjustments to care. looking at the possibility of home-based self-screening. 2. Exploring the inequalities of women with learning disabilities deciding to attend and then accessing cervical and breast cancer screening, using the Social Ecological Model Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. In this study, the Social Ecological Model (SEM) was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England. The study highlights key barriers to access for women with learning disabilities. 3. “We’re not taken seriously”: Describing the experiences of perceived discrimination in medical settings for Black women Black women continue to experience disparities in cervical cancer despite targeted efforts. One potential factor affecting screening and prevention is discrimination in medical settings. This US study in the Journal of Racial and Ethnic Health Disparities describes experiences of perceived discrimination in medical settings for Black women and explores the impact of this on cervical cancer screening and prevention. The authors suggest that future interventions should address the poor quality of medical encounters that Black women experience. 4. Top tips for healthcare professionals: Cervical screenings This article by the Royal College of Obstetricians & Gynaecologists and the My Body Back Project offers tips for healthcare professionals to make cervical cancer screening attendees feel as comfortable as possible during their appointments. Cervical screening can be very daunting for some women, and for those who have experienced sexual violence it can be triggering and cause emotional distress. The article provides tips on communication, making the environment calm and safe, sharing control and building trust with women. 5. The Eve Appeal: What adjustments can you ask for at your cervical screening? The Eve Appeal want to raise awareness of what adaptations women and people with a cervix can ask for during their screening to make the appointment more comfortable. 6. How can reframing women’s health improve outcomes? An interview with Dr Marieke Bigg Dr Marieke Bigg is the author of a 2023 book, This won’t hurt: How medicine fails women. In this interview, Marieke discusses how societal ideas about the female body have restricted the healthcare system’s approach to women’s health and describes the impact this has had on health outcomes. She also highlights areas where the health system is reframing its approach by listening to the needs of women and describes how simple changes, such as allowing women to carry out their own cervical screening at home, can make a big difference. 7. Having a smear test. What is it about? This download A4 Easy Read booklet from Jo's Cervical Cancer Trust uses simple language and pictures to talk about smear tests. It explains what a smear test is, has tips for the person having the test and has a list of words they might hear at their appointment. 8. Health Improvement Scotland: Cervical screening standards Published by Healthcare Improvement Scotland in March, the new cervical screening standards include recommendations to ensure women receive accessible letters and information about screening and healthcare professionals are trained to support women to make informed choices. 9. Cervical cancer screening in women with physical disabilities This US study explored how the cervical cancer screening experiences of women with physical disabilities (WWPD) can be improved. Interviews with WWPD indicated that access to self-sampling options would be more comfortable for cervical cancer screening participation. The authors highlight that these findings that can inform the promotion of self-sampling devices for cervical cancer screening. Have your say Are you a healthcare professional who works in women’s health or cancer services? We would love to hear your insights and share resources you have developed. Perhaps you have an experience of cervical screening or cervical cancer that you would like to share? We would love to hear from you! Comment below (register as a hub member for free first) Get in touch with us directly to share your insights

Patients with vision or hearing loss frequently encounter difficulties accessing vital health information, medication instructions, and effectively using medical devices. This report for the Patient Safety Commissioner for England, commissioned from Professor Margaret Watson, highlights serious gaps and deficiencies in the way that people with visual and/or hearing impairment or loss (referred to as sensory impairment) are able to access and use medicines and medical devices safely. This report presents the results of a short-term study to explore the challenges experienced by patients with sensory impairment in relation to their safe and effective access to and use of medicines and medical devices. This study was conducted from September to December 2024. The primary data that were generated were derived from three sources: Focus groups involving individuals with visual impairment or loss, including people with diabetes. Key Informant responses to an electronic survey. Medicines and Healthcare products Regulatory Agency (MHRA) Yellow Card reports. Patients reported distressing experiences due to inaccessible packaging, unreadable patient information, inadequate communication about medication changes and a lack of suitable reporting mechanisms for issues. The report makes the following recommendations: The MHRA needs to review – working alongside patients – whether their current guidance and regulations for the licencing and packaging of medicines goes as far as is possible to enable their safe use by those with sensory impairment. The Association of the British Pharmaceutical Industry (ABPI), MHRA and Department of Health and Social Care (DHSC) should work together to restart work – alongside published milestones – to digitise paper-based patient information leaflets via the existing UK Electronic Patient Information Task Force (ePIL). As part of this restart, ePIL – working with patients – should examine how to maximise the benefits of this work for patients with sensory impairment. NHS England’s Diabetes Programme Team should launch a patient reference group to assess, understand and mitigate the barriers and enablers to the safe and effective roll-out of medical devices and other education programmes for the management of diabetes (such as DAFNE) for those with sensory impairments. DHSC and NHS England need to ensure the work announced to improve and expand the NHS App in ‘Reforming elective care for patients’ includes an assessment – conducted with the input of patients – to determine whether further accessibility improvements are required, especially for people with visual impairment. In a number of other areas, the report states that the Patient Safety Commissioner wants to make observations to a number of bodies – highlighting the outcome without specifying the solutions, in keeping with the ethos of the recent Health Services Safety Investigations Body (HSSIB) report ‘Recommendations but no action: improving the effectiveness of quality and safety recommendations in healthcare.’ The report makes the following observations: A patient’s medical record needs to include a prominent flag of accessibility needs and detailed information about these needs to ensure that the healthcare professional can provide any required reasonable adjustments. All relevant healthcare professionals – including community pharmacists – must have sufficient access to these patient records and flags. Healthcare professionals, particularly community pharmacy personnel and others involved in the direct supply of medicines and medical devices, must have sufficient funding to support the additional time and resources required by to undertake assessments of patient needs and provide the required ‘reasonable adjustments’ for medicines and medical devices. With the anticipated increase in prevalence of sensory impairment amongst the general population, further guidance is required to promote evidence-based practice by health and social care professionals in terms of the medicine journey of people with sensory impairment. It is also crucial that there is provision of training to healthcare professionals (ideally within the undergraduate curricula) regarding the needs of people with sensory impairment. People with experience of sensory impairment should be included in the design of medical devices, as well as user information and instructions to accompany their supply and use. Manufacturers need to provide more resources to facilitate the demonstration of the effective use of medical devices, especially for people with visual impairment.

In this blog, Laura Evans discusses the lack of protection against Covid-19 for vulnerable patients when going for a GP appointment or into hospital. She shares her personal experience of being dismissed when asking for basic patient safety measures to be put in place. Imagine you are in hospital waiting to be taken down for surgery. You are informed the surgeon does not like wearing gloves, mask or headwear and says it is their personal preference. You are also informed that the operating theatre has not been cleaned since the patient before you. What do you do? Do you say something, politely reminding people of your right to be kept safe in hospital? Or do you remain silent to avoid being ridiculed or made to feel like there is something wrong with you? Of course, this scenario would never happen. It would not be tolerated by society. There are safety regulations and protocols in place to prevent, as far as reasonably possible, spread of disease in healthcare settings. However, where spread of Covid-19 is concerned, this genuine fear is the lived reality for millions of people attending healthcare appointments where their vulnerability is neither checked nor proactively catered for. Many people do not have the confidence, in some cases the wherewithal, to ask people to be careful around them in healthcare settings. Those who do ask for their needs to be met, like myself, have been condescended to and, in some instances, shouted at when arranging appointments. The only exception being when arranging appointments on the cancer pathway, where there is an acceptance that the immune system may be compromised. It is astonishing. What is it about this particular C word? Covid-19 is responsible for the deaths of over a quarter of a million people in the UK and the mass disablement of millions lucky enough to survive it but who are now living with Long Covid. There are also over a million people who shielded during the pandemic restrictions, whose clinical vulnerability has not suddenly gone away. Even if the basic human response leaves a lot to be desired, it has become an economic imperative to prevent so many people being sick. The World Health Organization only declared the emergency phase of the pandemic over, the virus itself continues to devastate lives. The number of people unable to work full time, or even work at all, since the start of the pandemic is rising sharply.[1] The number of people moving to part time work or unemployment to care for someone has also risen in the last few years.[2] A BMJ study found people living with Long Covid have lower quality of life than stage 4 lung cancer patients.[3] Covid-19 has profoundly debilitating effects on aspects of normal life, such as walking, talking, cognitive function, bathing and dressing, personal relationships with friends and family, and employment. There is a lot of rhetoric about preventative medicine; why is more not being done to protect people from these devastating consequences? It is not just Covid-19 that spreads easily when basic protections are not proactively put in place. Patients are still swabbed for MRSA in pre-op checks despite the MRSA outbreak being two decades ago. Clearly proactive prevention works. Yet, there is no routine testing for Covid and a large proportion of positive cases are hospital acquired. My local NHS Trust, Mersey and West Lancashire Teaching Hospitals, has been exemplary across its Southport and Ormskirk hospital sites wherever patients request safety precautions. Nothing is too much trouble. However, interactions with other Trusts have resulted in an appalling lack of respect and dignity, and an unnecessary battle for safe practices and care pathways. There is a worrying ‘survival of the fittest’ narrative pervading this matter, harking back to times when sick and disabled people were treated as socially embarrassing and a burden, to be hidden away and kept quiet. Anyone with the privilege of a robust immune system should ask if you would allow a medical practitioner to treat your open wound without gloves if you knew they were carrying a bloodborne infection? Any reasonable person would doubt such lapses in judgement. So why is Covid-19 different? Why should a vulnerable person be expected to tolerate lack of protections against Covid-19 and why is the NHS not compelled to put basic patient safety measures in place as they are expected to prevent spread of disease? It makes no sense. References House of Commons Library. Research Briefing. Labour Market Statistics. UK Government, 18 February 2025. Office for National Statistics. Employment in the UK: February 2025. Estimates of employment, unemployment and economic inactivity for the UK. 18 February 2025. Walker S, Goodfellow H, Pookarnjanamorakot P, et al. Impact of fatigue as the primary determinant of functional limitations among patients with post-COVID-19 syndrome: a cross-sectional observational study. BMJ Open, 2023. We would like to hear your experiences Are you a vulnerable patient? What is your Trust or GP doing to make you feel safe? You can share your experience by posting in the Comments below or join our conversation in the Community area of the hub. Related reading on the hub: “A perfect storm”: The global impact of the pandemic on patient safety Promises of Long Covid support have not materialised (a blog by Clare Rayner) Covid-19 : A risk assessment too far? A blog by David Osborn - Questions around Government governance Exploring the barriers that impact access to NHS care for people with ME and Long Covid Patient safety concerns for Long COVID patients

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.

Learning Disability Week is the third week of June every year. The event, organised by the charity Mencap, is an opportunity to raise awareness about different learning disabilities and challenge some of the barriers people who have learning disabilities face. According to Mencap, a learning disability is a person's reduced intellectual ability, meaning they can face difficulty with everyday activities. People with a learning disability can sometimes need extra support to learn new skills, understand complicated information or interact with other people. It can be particularly challenging for people with learning disabilities and their families when accessing healthcare services. To mark Learning Disability Week, we are sharing 14 resources, blogs and reports from the hub for patients, their families and healthcare professionals on breaking down these barriers. 1 Exploring the inequalities of women with learning disabilities deciding to attend and then accessing cervical and breast cancer screening, using the Social Ecological Model Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. In this study, the Social Ecological Model was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England. The authors suggest that multiple methods to reduce the inequalities faced by women with learning disabilities are needed, and that these can be achieved through reasonable adjustments. 2 Pharmacists can do more to bridge the safety gaps for people with learning disabilities People with learning disabilities are more likely to be taking multiple medicines, but labels are not designed with them in mind. This article in the Pharmaceutical Journal looks at a project run by a team at Leeds and York Partnership NHS Foundation Trust. The team ran exploratory workshops to listen to how people with learning disabilities engaged with information on medicines at home, at the doctors and at the pharmacy. The project highlighted that it is time to move away from standard labels and look towards more personalised medicine labels, actively promoting ways to support people with learning disabilities in taking their medicines. 3 Exploring deep sedation at home to support people with learning disabilities to access medical investigations with minimal distress In this blog, Mandy Anderton, a Clinical Nurse specialising in learning disability, explains how they are using shared decision making and reasonable adjustments to implement a new care pathway, where patients with a learning disability needing to undergo a medical investigation can receive deep sedation within their own home. Working with patients, carers, relatives, anaesthetists and others, the aim is to improve access to important medical investigations with minimal distress, where other avenues have been exhausted. 4 NHS England: Ask Listen Do – feedback, concerns and complaints Ask Listen Do resources are designed to support organisations to listen, learn from and improve the experiences of children and adults who are autistic or have a learning disability, their families and carers, and make it easier for people, families and paid carers to give feedback, raise concerns and complain. 5 NHS England: Guidance to support implementation of the Mental Capacity Act in acute trusts for adults with a learning disability This guidance supports trusts and community providers in enabling frontline staff to fulfil their legal requirements under the Mental Capacity Act (MCA) 2005, specifically when supporting people with a learning disability. Leadership within Trusts have been asked to ensure they understand the guidance, take the actions indicated and make these resources available to all frontline staff. 6 Tommy Jessop: Why I investigated hospital care for people like me People with a learning disability are more than twice as likely to die from avoidable causes than the rest of the population. Actor Tommy Jessop and BBC Panorama investigated some of the stories of families who say they were let down by their medical care. 7 How can GP practices help improve health outcomes for people with learning disabilities? In this Patient Safety Learning interview, Mandy Anderton explains some of the barriers people with a learning disability face in accessing safe care and how adjustments can be made within GP practices to improve outcomes. Mandy lists national improvements that she believes would reduce health inequalities in this area. 8 Making reasonable adjustments for patients with a learning disability is G.R.E.A.T. Developed by David Havard, this poster shows a number of ways in which reasonable adjustments can easily be made for patients with a learning disability. 9 HSSIB: Caring for adults with a learning disability in acute hospitals The aim of this investigation and report is to help improve the inpatient care of adults with a known learning disability in acute hospital settings. It focuses on people referred urgently for hospital admission from a community setting, such as a person’s home or residential home. 10 Video: The Oliver McGowan Mandatory Training on Learning Disability and Autism This animation aims to help staff and employers across health and social care understand Oliver's Training and why it is so vitally important. It was co-designed and co-produced with autistic people and people with a learning disability. Oliver McGowan died aged 18 in 2017 after being given antipsychotic medication to which he had a fatal reaction. He was given the medication despite his own and his family's assertions that he could not be given antipsychotics, and the fact that this was recorded in his medical records. The animation tells his story and highlights the increased risks facing people with learning disabilities and autism when accessing healthcare. 11 Palliative Care for People with Learning Disabilities The Palliative Care for People with Learning Disabilities (PCPLD) is a charity created to ensure that patients with learning disabilities receive the coordinated support they need throughout their life. The PCPLD Network brings together service providers, people with a learning disability and carers working for the benefit of individuals with learning disabilities who have palliative care needs. 12 Nobody left behind: Improving the health of people with learning disabilities and reducing inequalities across primary care Mandy Anderton talks in depth about the cross-system programme they launched in Salford to improve the health of people with learning disabilities and reduce inequalities across primary care. Mandy shares their award-winning poster, summarising the programme’s activities and outcomes, and gives her top tips for delivering a successful patient safety improvement project. 13 Reasonable adjustments and designing services for patients and people with learning disabilities Caring for people with learning disabilities in an acute hospital setting can be challenging, especially if that patient has transitioned from children’s services to adult services. The experience in children’s acute care differs to adult acute care; this difference in processes of care can cause great anxiety for the patient and their family and carers. The reasonable adjustments that were perhaps made and sustained in children’s services may now not exist. The purpose of this blog is to demonstrate the importance for services to be designed around patients’ needs with patients, families and carers. If we get this right, the quality of care given will be improved, patient satisfaction increases and, in turn, a reduction in patient harm. 14 Journey home to a rightful life in the community: Richard's story part 2 Richard has a learning disability and has spent time in hospital. His mum shares his story through this video about their journey to find the Right Care in the Right Place.