Purpose

This framework sets out 5 principles to reduce patient safety healthcare inequalities across the NHS. It outlines opportunities for implementation that local teams and ICBs can take up, as well as the work NHS England is taking nationally to support and enable this. These principles align with the aims of NHS England’s Patient safety strategy and Core20PLUS5 approach for adults and for children and young people to address healthcare inequalities.

This framework is for all NHS providers and their staff, and particularly leaders, managers and educators implementing strategies to foster a culture of inclusive, safe care. We have also provided people’s stories and implementation case studies to support teams (see appendices).

In summary: Patient safety health inequalities reduction framework

Introduction to patient safety healthcare inequalities

In 2010, the Marmot Review stated that healthcare inequalities “are not inevitable and can be significantly reduced… avoidable health inequalities are unfair and putting them right is a matter of social justice”.

There are known, unfair and avoidable differences in health between groups, populations or individuals that arise from the unequal distribution of social, environmental and economic conditions within societies. They influence the risk of people becoming ill, their ability to prevent illness, their opportunities to access the right treatment when ill-health occurs, and mean some people have poorer outcomes or longer recovery times than others.

More recently, Lord Darzi’s independent investigation into the NHS in England referred to the ongoing problem of health inequalities, stating: “The impact of the deterioration in access and the challenges around quality of care have not been felt equally. As we have seen, there are important disparities in almost all aspects of care. The ‘inverse care law’ seems to apply: that those in greatest need tend to have the poorest access to care”.

When inequalities cause or increase the risk of harm to patients in healthcare, they are considered to be patient safety healthcare inequalities. Viewing healthcare inequalities through the lens of patient safety identifies an important line of action for which healthcare professionals and systems have a clear responsibility.

We know that different population groups experience patient safety events unequally (The King’s Fund, 2020) and those experienced disproportionately by marginalised patient groups exacerbate healthcare inequalities (Green et al, 2010; Chin, 2020, Wade et al, 2022).

In 2019, the NHS Patient Safety Strategy committed to develop an understanding of how we can most effectively contribute to reducing patient safety healthcare inequalities.  This work is aligned to NHS England’s Core20PLUS5 approach for adults and for children and young people to address healthcare inequalities, which identifies both the target populations and key clinical areas requiring accelerated improvement.

Awareness of intersectionality is also important. Intersectionality describes how race, class, gender and other personal characteristics ‘intersect’ with one another and different types of discrimination relating to different personal characteristics can reinforce or change their effects on each other (Crenshaw, 1989 – Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum Vol 1989, Article 8: 139–68).

This framework describes the national actions we are taking and sets out future ambitions and opportunities for implementation that local teams and ICBs can initiate to reduce patient safety healthcare inequalities. These actions have been informed by the patient safety healthcare inequalities task and finish group comprising key stakeholders with lived experience and inequalities expertise, patient safety specialists, patient safety partners and representatives from arm’s length bodies.

This framework reflects the 6 themes relating to the mechanisms driving heightened risk of preventable harm (Wade et al, 2022):

• enhancing communication
• encouraging and activating patient engagement in their own care
• reducing workforce and system biases
• enabling smooth transitions of care
• making care accessible
• empowering insightful data

We know that individuals’ stories and case studies are powerful for understanding the impact of discrimination on safe care and patient safety healthcare inequalities, and we include examples within the appendices.

Principle 1

All staff, patients, service users, families and carers have access to, information, translation and interpretation services when needed.

Ambitions

Healthcare providers have a statutory and moral responsibility to patients and the public to ensure the services provided are equitably and easily accessible to all sections of the communities served. There are known to be embedded biases in the healthcare system, the workforce and in medical practice and these drive differences in the risk of harm to patients and can be the entry point for their solution (Piccardi et al, 2015).

Ineffective communication between healthcare professionals and patients during clinical care can be a contributing factor in patient safety healthcare inequalities. For example, those with poor proficiency in English, such as asylum seekers and migrants, are at a greater risk of harm from medication errors and misunderstandings (van Rosse et al, 2016).

We have identified enhancing communication, reducing workforce and system biases, and making care accessible as the 3 main themes that underpin areas for development in patient safety culture and systems to reduce inequalities.

Improved communication with patients, service users, families and carers will provide them with relevant information about ways to access care and what that care may look like and feel for them.

Patients and others should be knowledgeable about patient safety and be empowered to be involved in their safe care. This includes having information that is relevant, up to date, understandable and accessible to them in a preferred format. Healthcare staff and students should communicate information clearly and effectively in a timely manner.

Culturally competent and sensitive communication requires:

• delivering messages in an authentic, relatable way from credible and relatable voices
• ensuring messages are culturally appropriate and given in the right tone and/or language
• considering whether translation and/or interpretation services are needed
• engaging with groups that know the target audience to co-create messages and content when designing services and programmes, following the Healthcare Inequalities Improvement Planning Matrix

Translation and interpretation services should be accessible to all staff, patients, service users, families and carers as needed in all healthcare settings. Healthcare staff and students should be knowledgeable and enabled to access these services. This is in line with the recommendation “that NHS England develops and implements a standard for healthcare providers on supplying written appointment information in languages other than English” by the Health Services Safety Investigation Body (HSSIB) in Clinical investigation booking systems failures: written communications in community languages (June 2023),

Patients and service users should be able to have private and confidential conversations about their healthcare needs – that is, without the need to involve families or carers as translators.

Opportunities

Improve every interaction between patients and healthcare staff

There were an estimated 600 million patient contacts with GP, community, hospital, NHS 111 and ambulance services in 2023/24. This is equivalent to 1.7 million interactions with patients every day (The King’s Fund, 2023). Each of these contacts involved communication between staff and patients, as well as between staff. However, we know from incident investigations that communication failure is common  and therefore there are opportunities to improve interactions (Improving safety critical spoken communication).

Make communication at all levels culturally and linguistically appropriate

This requires awareness of healthcare disparities and the impact of socio-cultural factors on health. Communication planning requires co-design, co-production, engagement and awareness of the risk of digital exclusion. NHS England has already identified 6 key areas that pose challenges to spoken communication. The report “Much More Than Words” provides advice for effective communication between clinicians, patients, service users, carers and families.

Make information clear and accessible

All organisations that provide NHS care or publicly-funded adult social care are legally required to give due regard to the Accessible Information Standard (AIS) to ensure people receive information they can access and understand, and where needed that they receive appropriate communications support to assist their understanding. This standard is targeted at the communication support needs of patients, service users, carers and parents with a disability, impairment or sensory loss, and advocates for the availability of multi-lingual information, including British Sign Language (BSL). Simplifying communication makes healthcare information more accessible to everyone and particularly for those whose first language is not English. Thus, promoting this standard as part of good practice should help reduce patient safety healthcare inequalities.

Many adults in the UK have low health literacy skills. Over 4 in 10 adults struggle with health content intended for the public and over 6 in 10 have difficulty with health content that includes numbers and statistics (Health literacy, NHS digital service manual). Disadvantaged groups are more likely to have limited health literacy (Nutbeam and Lloyd, 2021; Muscat et al, 2021) and this can prevent them from making informed health decisions. Interventions designed to address inequalities can improve outcomes (Durand et al, 2014). Poor health literacy is a key indicator of health inequalities and health literacy geodata helps inform decision-making about tackling health inequalities.

Alongside the AIS there are opportunities for healthcare organisations to sign up to Communication Access UK and the Patient Information Forum (PIF) tick, which support inclusive communication for all. Health literacy guidance based on research data is available on how we can help people understand healthcare information.

There is also guidance on interpreting and translation in primary care and integrated care boards (ICBs) are responsible for ensuring these services are available for patients accessing primary care. To support ICBs there is guidance for commissioners on how to improve the quality of these services.

Minimise the risk of digital exclusion

The introduction of digital technologies for communication with healthcare services improves access for many people, and experience for people and staff by making care more person- centred. But it also risks exacerbating inequalities through digital exclusion. According to the Digital inclusion for health and social care report (2023), 11 million people (20% of the UK population) lack basic digital skills, or do not use digital technology at all, and these people are likely to be older, less educated and in poorer health than the rest of the population.

The King’s Fund (2023) defined digital exclusion as the lack of access, skills and capabilities needed to engage with devices or digital services that help people participate in society. The key barriers to digital inclusion include access, skills, confidence and motivation, particularly when people have no awareness of the digital products or the products are not easily accessible or useable.

As digital technologies are increasingly used in healthcare, these introduce further inequalities for those who lack digital skills or are not digitally connected – for example, those over 75 or for whom English is a second language, especially if digital platforms are used as the default to access services and information. The development of Inclusive digital healthcare: a framework for NHS action on digital inclusion is a step towards enabling the NHS to provide the systems that support digital access.

Working with the voluntary, community and social enterprises (VCSE) sector will help to support patients in acquiring digital skills.  Some of this work includes libraries who are helping people access the NHS App  (Libraries supporting more people to use NHS App).

Practical steps for supporting digital inclusion locally include understanding the rates of digital exclusion, and working on a plan involving everyone including community representatives, patients and staff. There are some useful tools such as the digital exclusion heatmap (2017), which shows overall likelihood of digital exclusion by local authority. The Designing for inclusion report includes information for ICBs, providers, local authorities and voluntary organisations on how to provide accessible online services.

Reduce communication barriers

A key aspect of communication is the exchange of names and introductions. Dr Kate Granger MBE highlighted this in 2013, which resulted in the #hellomynameis campaign for more compassionate care that has made over 2.5 billion impressions since its conception and is used across a variety of healthcare settings.

Treating people with respect and dignity also includes calling them by their preferred name and understanding what pronouns they prefer to use. In 2021, the #Callme Because Names Matter campaign was launched on the back of the finding that 31% of hospital patients use a different name to the one in their records.

Everyone in healthcare can use these simple approaches when initiating conversations.

Principle 2

All healthcare staff receive undergraduate patient safety training, ongoing training, and accessible resources that improve their awareness and understanding of healthcare inequalities related to patient safety risks.

Ambitions

It is important that training and education in reducing patient safety healthcare inequalities is embedded in undergraduate, postgraduate and staff curricula. Education and training should address the needs of the global majority, including those with protected characteristics and health inclusion groups.

Healthcare staff and students should undertake training on conscious and unconscious bias to help minimise the risk of biased clinical practice against marginalised groups. They should feel skilled, confident and empowered to recognise discrimination and effectively escalate or directly challenge discrimination if required.

Healthcare staff will receive targeted resources for improving patient safety healthcare inequalities to support them in their individual roles in keeping everyone safe. Patients, service users, families and carers should be empowered to be involved in their safe care, or to support others to be safe.

Opportunities

Improve training

With the introduction of the free online NHS patient safety syllabus training levels 1 and 2 in 2021, all staff have the opportunity to improve their understanding of patient safety, including risks related to healthcare inequalities. Alongside this, other educational resources include: Healthcare inequalities syllabus training e-learning,  NHS England’s Health Inequalities platform, health inequalities case studies from the Royal College of Speech & Language Therapists, Fairhealth modules on inequalities in primary care, and Mind the Gap showing what dermatological clinical signs look like in black and brown skin.

Training is also available on recognising, reacting to, and interacting when risks to patient safety healthcare inequalities are identified. This includes modules on Unconscious bias training , Active bystander training, Restorative Just and Learning Culture (4 short modules from Mersey Care NHS) and Anti-racism in speech and language therapy programme of learning.

Develop a repository of accessible resources

Currently, there is no easily accessible repository for information, links, evidence and improvement ideas for patient safety healthcare inequalities reduction. Educational resources such as e-learning for health’s Healthcare Inequalities Syllabus training and the Royal College of Speech & Language Therapists: Anti-racism in speech and language therapy – Learning materials and Fairhealth, while useful are not focused on patient safety inequalities that can result in harm.

The patient safety team at NHS England plan to co-create a patient safety healthcare inequalities handbook with staff and patients, and for use by individual clinicians, organisations, patients and communities.

Principle 3

Accurate and complete diversity data are collected for protected characteristics and inclusion health groups on digital platforms. This work includes making disaggregated data available so evaluation can drive improvements in patient safety healthcare inequalities.

While this principle refers specifically to digital data collection, it applies equally to other types of data collection, including focus groups and surveys. For example, all patient safety improvement work should include a review of local population diversity to routinely identify marginalised groups. This focuses future improvements on those groups with the greatest need.

Ambitions

Exposing the unequal risks of harm from healthcare across different population groups is hindered by the lack of patient safety data disaggregated by protected characteristics, ethnicity, health inclusion groups and socio-economic status (Sivashanker et al, 2020). Only by identifying who who is experiencing disproportionate harm can we start to understand the necessary improvements needed.

The public and staff should understand the benefits of accurate collecting and utilizing diversity data, including for inclusion health groups that are not covered by the protected characteristics.

Staff should be confident and competent in asking for and recording accurate patient and service user self-reported ethnicity, nationality, citizenship status and other inclusion data to support personalised care better.

Patients and service users should be aware they can review and update their protected characteristics data whenever they interact with healthcare, be it through their GP, an outpatient appointment or directly via the NHS App.

ICBs and healthcare trusts should collect, analyse, publish and use information on health inequalities, and comply with the legal duty to provide a statement on information on health inequalities within their annual reports.

The Learn from Patient Safety Events (LFPSE) service will be developed to include more protected characteristics, and these fields should be completed accurately and fully by providers. This will mean that we can start to identify when patient harm is more common in specific groups of patients and look at ways to address this.

Safety-related data capture systems such as clinical audits should develop mechanisms to capture and analyse diversity data. MBRRACE-UK: Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK and the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) have already started to collect and review more data on inequalities.

Opportunities

Use data on health inequalities to improve safe care

In 2023, NHS England published its first statement on information on health inequalities setting out our views on how ICBs, trusts and foundation trusts should collect, analyse, publish and use information on health inequalities. These NHS bodies have a legal duty to include a review of the extent to which they have exercised their functions consistently with this statement in their annual reports.

1 of the 5 National Healthcare Inequalities Improvement Programme’s key priority areas is ensuring datasets are timely and complete. Systems have been asked to continue to improve the collection and recording of ethnicity data across primary care, outpatients, emergency departments, mental health, community services, prisons and specialised commissioning. Systems should also implement mandatory ethnicity data reporting in primary care to enable demographic data to be linked with other datasets and support an integrated approach to performance monitoring for improvement.

When launched in 2021 the LFPSE service included 3 protected characteristics fields: sex, ethnicity and age. In 2024, ‘gender matches that of birth’ was added. Completion of these fields is not mandatory as the information is not always available at the time of recording; however, where it is possible to do so, the importance of completing these fields accurately and systematically cannot be over-emphasised.

Principle 4

Representatives of diverse communities are involved in the design and delivery of improvements to reduce patient safety healthcare inequalities. This co-production involves drawing on the knowledge and experience of patients, service users, carers, families, communities and staff.

This principle is reflected in the National framework for the NHS – action on inclusion health, which is primarily aimed at NHS bodies and emphasises the importance of all system partners working together. It provides practical information to support delivery on health inequalities priorities for socially excluded groups.

Ambitions

Patient safety partners (PSPs) should be established in regions, ICBs and providers in line with the Framework for involving patients in patient safety (2021). PSPs must be as representative as possible of their local populations and communities and should be involved in identifying patient safety healthcare inequalities and in co-designing relevant improvements.

Involving people, including through the VCSE sector, in the co-production and delivery of patient safety healthcare inequalities improvements, will mean that these are tailored to the needs of the people who require them.

Understanding the potential barriers to accessing safe care, including digital access, must be developed. Partnership working between the VCSE sector, local government and the NHS should increase as we know this is fundamental for improving care, in line with Working in partnership with people and communities statutory guidance (2022).

A diverse, inclusive and intersectional workforce has been shown to have a positive impact on patient care, enhances our ability to improve and innovate, and results in better productivity and staff engagement (Kline, 2018).

Monitoring the diversity of everyone (staff, patients and others) involved in co-designing patient safety initiatives needs to improve. Their demographics should be compared with the local population to enable the identification of any gaps in representation of certain groups, so that these can be addressed.

Opportunities

Involve patients and diverse communities in developing patient safety improvements  

Organisations should recruit and work with PSPs to co-design new initiatives that reduce patient safety healthcare inequalities locally.

The toolkit: building equitable primary care (2023) provides practical steps to help primary care decision-makers address inequalities in health and healthcare. For patient safety, we have co-produced the film Simple steps to keep you safe during your hospital stay. This is aimed at patients, is available with subtitles and could be shown in GP and other waiting rooms.

NHS England published best practice on enabling co-production in 2021 along with an animation: The world of co-production and QI, which explores how co-production and quality improvement can be aligned to improve quality of care. The PSP role showcases this type of co-production partnership, where trusting relationships are built and power is shared.  This genuine co-production is also described in Developing an engagement and health inequalities improvement framework for integrated care systems (Care Quality Commission).

As part of the implementation of the Patient Safety Incident Response Framework (PSIRF) NHS England, HSSIB and Learn Together worked with patients and families to co-design the guidance Engaging and involving patients, families and staff following a patient safety incident (2022). This describes the systems and processes that establish strong foundations on which an effective involvement process can be built, and the process for engaging those affected by patient safety incidents and supportively involving them throughout a learning response.

Principle 5

Improve the understanding of patient safety healthcare inequalities and drive improvement through identifying priority areas for research.

Ambitions

More investment in research is needed to understand the mechanisms that underpin and drive ethnic inequalities in healthcare, as described in the 2021 report from the NHS Race and Health Observatory, Ethnic health inequalities and the NHS.

Medical research is a crucial tool for change in health disparities. Priority areas for patient safety healthcare inequalities research must be identified to inform improvement strategies.

Opportunities

Identify and enable research

Patient safety healthcare inequalities research aims to understand whether change is worsening or improving inequalities. For example, the NHS Race and Health Observatory highlighted that pulse oximeter readings from Black and minority ethnic people can be seriously misleading. It called for specific research in this area. both quantitative and qualitative research need to be co-designed and co-produced with people with lived experience from diverse backgrounds, and clinical trials need to recruit an appropriately diverse cohort and conduct relevant stratified analyses that determine effectiveness and safety of drugs and devices in groups with different characteristics (Wade et al, 2022).

NHS England published the National patient safety strategic research needs 2022/23 and we have since developed inequalities research questions (see Appendix).

There are already areas of healthcare inequalities research at NIHR within Policy research programme – health inequalities. However, these studies are not targeted at patient safety, so targeted research will help us focus on those areas where there are the greatest challenges and opportunities for patient safety healthcare inequalities reduction.

Under-representation of diverse groups among research participants is recognised as important for research development and there is a good practice guide for engaging with underrepresented groups.

Appendix 1: Patient, service user, family and carer stories

1. Enhancing communication: Oliver McGowan’s story

Oliver McGowan developed mild hemiplegia, focal partial epilepsy and mild learning disability following bacterial meningitis as a baby. He was also autistic. Oliver lived a happy and inspiring life and was training to become a Paralympian.

As a teen, Oliver had admissions to hospital with focal seizures. Staff did not listen to Oliver or his family. The clinicians did not make reasonable adjustments for Oliver’s learning disability and autism, and did not read his hospital passport or notes. They did not recognise symptoms due to diagnostic overshadowing. This led to inappropriate care and treatment, medical complications and Oliver’s avoidable death.

His family set up Oliver’s Campaign and developed The Oliver McGowan Mandatory Training on Learning Disability and Autism for health and social care staff, now a requirement in the Health and Care Act 2022.

2. Reducing workforce and system biases: Ayeesha’s mum’s story

Ayeesha recalls how her mother’s health started deteriorating a few years ago. Her mother felt really tired all the time because unusual body pains, often in her legs but really all over, were stopping her from sleeping most nights, all night. This affected her social and family life. She could no longer look after her home as she would like, and everyday things like shopping and meeting her friends became too tiring. She visited her GP frequently, and they advised painkillers and that the pain would resolve.

Ayeesha said: “Looking back, one occasion really sticks out. Having not slept all night, feeling really unwell, mum waited a long time on the phone to finally get an appointment to see the GP. What is really sad is that she was told that she was over exaggerating…to calm down and pains are part of ageing. It left her feeling that she shouldn’t bother the doctors with her problems and that her issues are trivial. I remember mum crying on her way home, that no-one believed her.”

As her mother’s symptoms worsened, she was increasingly reluctant to go to the doctors. She had a number of blood tests and each time was told to “eat more healthily” but given no clear explanation for why she was getting the symptoms or the results. Ayeesha said: “This continued for 2 or 3 years, until mum saw a new GP, who finally listened and reviewed mum’s case. Looking back at test results it was clear mum had Type 2 diabetes, which should have been diagnosed years ago. But this wasn’t picked up or communicated to her in a way she could understand. She also has coronary heart disease, but they just fobbed her off with painkillers”. Ayeesha’s mum is now waiting to have heart surgery.

Ayeesha wonders whether her mum’s experience and suffering was due to “bibi-itis, Mrs Bibi/Begum syndrome”. The term stems from the common south Asian surname, and implies that south Asian women, usually older women, tend to exaggerate their symptoms.

Story from a member of the Patient Safety Inequalities Task and Finish Group

3. Reducing workforce and system biases: Seni Lewis’ story

Seni Lewis was a university graduate, a son, a brother, an uncle, a grandson, a friend. He was loved and known as a kind, loving and easy going individual who would always make time for people.

Aged 23, Seni voluntarily admitted himself into hospital for mental health treatment on 31 August 2010, having suffered his first – and only – episode of mental ill-health. There was an inadequate risk assessment and failure to acknowledge the calming influence of family members. When he became agitated medical staff called the police, who used excessive, disproportionate and unreasonable force – in the form of prolonged restraint, pain compliance techniques and multiple mechanical restraints. This contributed to Seni’s death according to the conclusions reached by the inquest jury.

Justice for Seni Law to prevent use of force in mental health settings

4. Empowering insightful data: James’ eating disorder story

From the ages of 17 to 27, I experienced both anorexia and bulimia nervosa, as well as undiagnosed depression and social anxiety. I was so fearful of going out, meeting friends and going to work, that I essentially locked myself up in the house for 10 years; even a chat with a supermarket cashier was difficult. I knew that getting better required doing these ‘normal’ life things, so I remember feeling like I was stuck in a catch 22. At my worst point, my parents had to sign a ‘do not resuscitate’ form when I was in hospital. I spent 3 months in an eating disorder (ED) unit when I was 22.

I was only allowed to go to the ED unit as a day patient, instead of an inpatient like everyone else. This was because there were only female residents in the unit, and they couldn’t separate the ward in terms of gender. I only knew one other guy who had eating difficulties and the stigma really affected my recovery. I’d think to myself: if this is a ‘female’ disorder, why me, why have I got it?

1 in 4 men: James’ eating disorder story (rethink.org)

5. Making care accessible: Deaf parent’s story

I contacted NHS 111 via SignVideo (a video relay service) after my son became unwell. NHS 111 said they would contact me within 24 hours. I reminded them to contact me via text, email or use SignVideo as opposed to calling me. Upon waking the next morning, I saw they had tried to call me at around midnight which I wasn’t aware of because I am deaf and can’t hear or use the phone.

I then took my son to A&E. At reception, I wrote down that we would need a BSL interpreter to communicate. We went into triage and waited for someone to come and check my son. Staff refused to remove their masks for me to lip-read them, nor did they change their masks to clear masks. I could see from the movement on their masks that they were still speaking and repeatedly asked them to stop, because I could not hear what they were saying. I also repeatedly asked them to write down what they were saying instead of speaking. They also tried to talk directly to my deaf son, which confused and distressed him. This made me very upset and angry, and so I video called my sister for assistance. She explained to the staff that it wasn’t acceptable to rely on her for communication because she is not a qualified BSL interpreter, and it is unethical to rely on family members to interpret. I could see the nurse/doctor were taken aback, and only then began to write down information for me.

My son had a blood test, and they told us to wait for an hour. We waited another 2 hours, at which point my son was desperate to go home after 6 or 7 hours in the hospital. Eventually, one of the nurses agreed to let us go home and said they would contact me with the blood test result and asked if they could call my sister instead of me. I questioned why they were stripping me of my independence because I am his mother. Surely there are other means to contact me, via text or email. I gave my contact details, they apologised. While we were waiting for the results at home, I called the hospital via Text Relay UK. They said they had never said they would contact me at home, only if something was serious. They also said that BSL interpreters weren’t working on Boxing Day, which I know to be untrue. They also said that I had voluntarily discharged my son from hospital against their advice, which also wasn’t true. I would have never left without their consent and medication. This all demonstrated a complete lack of deaf awareness.

Case study from SignHealth Review of the NHS Accessible Information Standard

6. Encouraging and activating patient engagement in their own care: Sean’s story

Sean tells his story about needing to take more and more painkillers after his hernia operation left him with chronic pain. The severe side effects from these eventually led Sean to seek advice from his GP to find alternative ways to help him manage his chronic pain effectively. From this, the chronic pain project in Cornwall was started and there are now pain cafes across the county, providing communities for patients to join and learn to live well with pain.

7. Reducing workforce and system biases: Don’t call me ‘Bibi’ story

In this article Dr Fizzah Ali, neurologist, explores how casual racial stereotyping and discriminatory language used in the healthcare setting leads to unrecognised bias, further marginalising disadvantaged groups.

“Bibi-itis or Mrs Bibi is a derogatory term, derived from the surname Bibi….Usually, the term is applied to older [south Asian] women with limited English. It’s also used more widely, referring to seemingly inexplicable complaints in south Asian women … In part, the use of the term is compounded by the belief that older Asian women express psychological distress through physical symptoms. The term serves as an example of casual clinical stereotyping that can cause unrecognised bias leading to missed diagnoses, delayed treatment, and preventable unwanted outcomes. Consider, for example, the dogged pursuit of tuberculosis in an Afghan woman. A biopsy eventually shows a rare tumour affecting her central nervous system, but also poor prognosis, ethambutol-induced optic neuropathy, and disability … [This] illustrates how women from minority groups within the medical workforce can be marginalised and how this in turn can translate into the marginalisation of women patients.”

Don’t call me Bibi—or anybody else, for that matter, The BMJ

8. Reducing workforce and system biases: No one’s listening – sickle cell care

Jaspreet Kaur told us that during her friend’s admissions as an inpatient “overdue pain relief was the norm”.

Angela Thomas described waiting “in A&E for 2 to 3 hours while my pain got steadily worse until I was screaming out in pain.”

Another patient referred to an incident in which they were left in “paralysing pain” for almost 24 hours. They had been informed that their care plan medication was not available but when a new doctor came on shift discovered it had been available all along.

Kye Gbangbola told us: “Every time I have been in hospital, I have constantly suffered more pain than necessary due to ward staff not responding to my medical needs,” including pain relief.

Sickle Cell Society No one’s listening – A report

Appendix 2: Example patient safety healthcare inequalities reduction research questions

Ethnic groups

Example research questions:

• What is the scale, nature and reasons for disparities in patient safety between patients who identify as White and patients who identify as other ethnicities?
• Are ethnic minority groups more vulnerable to anaphylaxis? If so, why and how can it be mitigated with harm reduction approaches, especially in relation to anaphylaxis from medication?
• How can efficient take up of pain management be improved in people of different ethnicities?
• What are the interpersonal and structural factors that shape care and experiences? Such as ineffective communication, biases and prejudices, clinical education, clinical trials, guidelines and treatment designed around White middle class populations as the norm.

Patient safety

Example research questions:

• Which causes of patient safety healthcare inequalities should be prioritised for greatest potential safety improvement?
• What mechanism(s) underpins and drives patient safety inequalities in healthcare? What are the differences in risk of harm to the different protected characteristics and how can the risks with the greatest impact be addressed?

Specific services

Example research questions:

• What is the scale, nature, severity and the reasons for avoidable harm in mental health services? Who is harmed (including groups with protected characteristics and other health inequalities groups)?
• ·To what extent are ethnic minorities involved in clinical research? How do we address the gaps and improve involvement and engagement in research?
• What are the reasons for avoidable harm and deaths in maternity services for Black women?
• What are the reasons for delayed dialysis and kidney transplantation for Black people?

Medical devices and medications

Example research questions:

• What is the scale, nature, severity and the reasons for avoidable harm related to medication error and medication-related harm in particular sectors, treatments or interventions with high harm potential?
• What is the scale, nature, severity and the reasons for avoidable, in relation to CYP2C19 metabolised medicines?
• Who is harmed (including groups with protected characteristics and other health inequalities groups)?
• Is there racial or other bias in the use, efficacy or accuracy of vital signs monitoring devices, and what are the reasons for it?

Communication

Example research questions:

• To what extent does appropriate health information for different groups experiencing healthcare inequalities make their healthcare safer?
• What education for healthcare professions would best enable this? This should include reference to Culturally sensitive communication in healthcare: A concept analysis.
• What extent do different groups experiencing healthcare inequalities have access to translation and interpreting services? To what extent do these translation and interpreting services meet their needs, and how will this enhance patient safety?

Transitions of care

Example research questions:

• What is the scale, nature, severity and the reasons for avoidable harm in children and young people? Who is harmed (including groups with protected characteristics and other health inequalities groups)?
• What are the challenges affecting patient safety healthcare inequalities for children and young people when transitioning to adult services for mental and physical health?
• To what extent does a liaison role, such as the patient liaison officer role initially created in primary care or the family liaison officer role created during COVID-19 in inpatient settings, improve patient safety for different groups experiencing healthcare inequalities?

Appendix 3: Implementation case studies

Enhancing communication

1. Supporting non-English speaking families (RCSLT)

The Royal College of Speech & Language Therapists (RCSLT) case studies showcase good practice in meeting the needs of under-served groups and delivering quality care to service users who may be particularly vulnerable to health inequalities. One study examines how support is provided to a non-English speaking family, with consideration of their cultural beliefs around mental health.

2. Bilingual medication information on pharmacy dispensing labels

London North West University Healthcare NHS Trust serves an ethnically and linguistically diverse demographic, and requires interpretation services for over 40 languages, mostly South Asian, Middle Eastern and Eastern European. Ealing Hospital started using Written Medicine in its outpatient pharmacy in 2016. This service provides bilingual dispensing labels in patients’ language of choice. Now pharmacies across London are benefitting from the support of Written Medicine.

Digitising pharmacy – Bilingual medication information on pharmacy dispensing labels

3. #CallMe

The #CallMe campaign was launched in 2023, because names matter. The aim is to ensure that all patients are asked what they like to be called and that their preferred name is recorded in an easily identifiable way, for example on the patient identification wrist band and in the patient record. At least 30% of patients prefer to be called by another name to that recorded in their healthcare record.

Encouraging and activating patient engagement in their own care

4. Case study 4: Tackling chronic pain in Lambeth

Lambeth Together works to improve the care received by patients living with chronic pain who are socially deprived and from ethnic minority backgrounds. The Pain: Equality of Care and Support in the Community (PEACS) has co-designed a pathway that delivers a culturally competent chronic pain offer.

Chronic Pain – Lambeth Together

5. Project SMiLE in North Bristol

Community leaders from North Bristol Trust and Shahporan Islamic Centre undertook focus groups to understand the experiences and perspectives of antenatal care for women from global majority communities in North Bristol. ‘Knock and wait’ signs were among the quality improvements identified.

FutureNHS collaboration platform: BNSSG Project Smile – NHS Patient Safety

6. Health coaches working with GPs in Yeovil

Local GPs and Yeovil District Hospital NHS Foundation Trust together designed and set up their enhanced primary care service to deliver better outcomes for people living with long-term conditions and manage demand on healthcare services. Initiated and managed by Symphony Healthcare Services, the service had a broader ‘skill mix’ than primary care, including musculoskeletal and mental health practitioners, to enable focus on people with long-term conditions. Health coaches are a key role within this service. They try to understand patients’ lives holistically, use personalised coaching techniques to build up their motivation to change, and then support them to realise their own goals.

Health coaches working with GPs to help people with long-term conditions in Yeovil

7. Patient safety partner involvement in patient safety healthcare inequalities reduction

This Patient safety healthcare inequalities reduction framework was co-designed with clinicians, patient safety specialists, people with lived experience or expertise in inequalities, and our lay patient safety partners. In this podcast our PSPs describe their backgrounds and reasons for helping the national patient safety team and outline how they have contributed. They describe how they were able to be a voice for people from ethnic backgrounds that are often not heard; to shape future NHS services making them more inclusive and safer; using ‘real time insight’, to help to close the gap in health inequalities and provide more equitable access to services. As part of the team, they were able to challenge perceptions of barriers and explore solutions.

Podcast: How patient safety partners have helped to shape Patient safety healthcare inequalities reduction

8. Keeping pregnant people with epilepsy safe

The risks of maternal and neonatal death are much higher for people with epilepsy. Epilepsy Action and the North West regional maternity team have collaborated to create a new service specification, clinical guideline and benchmarking toolkit to ensure safe and comprehensive care is delivered to pregnant people with epilepsy and those planning a pregnancy. These documents were coproduced with service users and a wide range of relevant healthcare professionals, and tested within the North West region.

Pregnancy and epilepsy – Epilepsy Action

Reducing workforce and system biases

9. Black maternity matters

Black Maternity Matters is a ground-breaking collaboration supporting midwives to reduce the inequitable maternity outcomes faced by Black pregnant women and their babies. It offers peer support, education and training, and coaching in quality improvement.

10. Inclusive Pharmacy Practice (IPP) Bulletin

IPP is a joint initiative by NHS England with the Royal Pharmaceutical Society and the Association of Pharmacy Technicians UK and 13 other national partner organisations. Read more about IPP on our webpage and register for the Future NHS workspace. You can subscribe here for more updates about IPP.

Enabling smooth transitions of care

11. NCEPOD’s Review of Health Inequalities

The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) reviewed past studies and its report identifies how data capture revealed inequalities. One of the key messages relevant to the care of children and young people highlighted in this report is that the divide between paediatric and adult healthcare services is well known and can lead to children and young people experiencing a gap in care at the point of transition.

NCEPOD. How data captured by NCEPOD supports the identification of healthcare inequalities a review – 2022

Making care accessible

12. CardMedic

CardMedic is a multi award winning communication tool designed to improve the transfer of vital information between healthcare staff and patients, across any barrier – whether visual, hearing or cognitive impairment, foreign language or personal protective equipment.

13. Narrowing oral healthcare inequalities in Yorkshire and the Humber

People experiencing homelessness, looked after children and vulnerable migrants are among those groups being supported by initiatives to improve access to dental services for underserved communities in Yorkshire and Humber. In Leeds, a programme supporting people experiencing homelessness to access dental care is helping to narrow healthcare inequalities in the area. In general, people experiencing homelessness have poorer dental health and experience higher levels of tooth decay and gum disease. The dental public health and dental commissioning teams in West Yorkshire worked with dental care providers, local homelessness charities and other partners to establish 2 designated “homeless friendly” dental practices offering dedicated sessions for those experiencing homelessness. As part of this, local charities work with the practices to book patients into appointments and support them to attend.

NHS England » Narrowing oral healthcare inequalities in Yorkshire and the Humber

Empowering insightful data

14. Research into ethnic variation in access to treatment for eating disorders

This NIHR West Midlands is exploring ethnic variations in pathways to care, admission, clinical presentation and treatment for specialist eating disorder services in England. The main objectives include understanding any ethnic variations in the offer and uptake of treatment, and whether there are any ethnic differences in eating disorder admissions and clinical presentation.

Ethnic variations in access to treatment for eating disorders in multicultural England

15. National Clinical Audit and Patient Outcome Programme audits (NCAPOP)

Addressing health equality in the NCAPOP audits (2020) highlighted challenges in investigating inequalities: some patient characteristics are widely collected in national audits and others not at all. Furthermore, where data is collected, its use in meaningful analysis is variable. This report recommended that patient characteristic data is collected, analysed and reported in future NCAPOP audits – as a minimum, age, sex, postcode/geographical region and ethnic origin. Furthermore, the report recommended that where data analysis demonstrates health inequalities, future reports highlight this.

16. Understanding Clopidogrel drug-resistance disparities for some ethnicities

Pharmacists in the North West Region Genomic medicine service alliance are piloting a programme to implement the evidence and NICE guidance to address disparities in stroke outcomes. Disaggregated data in research studies show: stroke risk is twice as high in the most deprived groups compared to the least deprived; 80% of stroke patients come from lower socio-economic groups; strokes happen more often in people who are from Black African, Black Caribbean, or South Asian family backgrounds; Clopidogrel resistance (CYP2C19 LOF alleles) are present disproportionately across different ethnic groups and people with these variants have a 46% increased risk of recurrent stroke when taking clopidogrel compared to those without them.

NICE Guidance CYP2C19 genotype testing to guide clopidogrel use after ischaemic stroke or transient ischaemic attack and North West Genomics Medicine Service Alliance

Publication reference: PRN00672