Diagnostic safety: accessibility and adaptations– a (un)reasonable adjustment?

Summary

Pavi Brar is Senior Policy Advisor at National Voices, a coalition of over 200 health and care charities. In this blog, Pavi explains why accessibility needs and adaptations must be taken into account and addressed to enable everyone to access diagnostic services. 

This blog has been published as part of a series for World Patient Safety Day 2024 and the theme of Improving diagnosis for patient safety. #WPSD24, World Patient Safety Day 2024, WPSD 2024.

Content

Everyone has the right to be able to access health information, services, and diagnostic tests in a way, and at a time that works for them.

Sometimes, people may need adjustments and/or adaptations to help them access the healthcare they need. This can include meeting specific communication needs, in compliance with the Accessible Information Standard, but should also include addressing and taking into account:

• digital exclusion
• financial barriers such as travel and other costs associated with attending appointments
• reasonable adjustments which enable disabled people to fairly access medical equipment, for example during diagnostic tests.  

In our most recent report, People’s experiences of diagnosis, we were shocked to hear the impact that a lack of reasonable adjustments and adaptations can have on a patient’s experience of diagnosis. It is timely that World Patient Safety Day 2024 is on the theme of ‘improving diagnosis for patient safety’ with the slogan ‘Get it right, make it safe!’

The impact on patients

Equipment

A failure to meet people’s requirements for access can have serious consequences, delaying or preventing diagnostic tests or associated treatment.

National Voices member, Sex With a Difference (SWAD), is a training organisation, specialising in the area of disability and sex. They told us some people have had prostate cancer tests whilst kneeling on the floor of a GP surgery, as they were unable to get onto the couch. Another person was three years late in having a smear test as an accessible couch was not available to them. Patients with accessibility needs should not be forced to choose between prompt or dignified care.

SWAD have launched a campaign, Better Access for Better Access, which aims to have at least one hoisting system and a set of leg supports on an examination couch, in every sexual health clinic and GP surgery in the UK, by the end of 2024.

Travel

Getting to and from health appointments is essential for accessing diagnostic services, but we know this doesn’t always run smoothly. A blog from Kidney Care UK, also a member of National Voices, highlights how arriving late, or being unable to park or pay for parking can all negatively contribute to what may already be a stressful occasion. Relying on public transport can make this even more challenging as some groups, such as older people, may not be able to access public transport at certain times of day making it more difficult for them to reach appointments. Disjointed transport links can also increase travel times significantly, causing people additional anxiety and distress on top of what can already be quite a scary time in their health journey.

Communication

Through our work on accessible and inclusive communication, we also heard numerous examples of how a lack of suitable adjustments and adaptations can negatively impact people’s experience of diagnosis. Health literacy and accessible communication is key in making sure people are able to recognise symptoms. Informed decisions are key in the diagnostic process so a person can access the essential treatment and wider support they need. Without accessible and inclusive information, people can be left feeling uninformed, unheard and stranded during what is already a stressful time. It is wholly unacceptable that a family member or carer may be left to break the news of a life-changing diagnosis to their loved one simply because an appropriate translator was not arranged.

National Voices’ member, The Thomas Pocklington Trust (TPT), highlights that three quarters of people with accessible information needs said they rarely or never receive health information in alternative formats. Through their #MakeHealthAccessible campaign, TPT are calling on NHS England, and all health and associated social care bodies, to ensure the Accessible Information Standard guarantees people who are blind and partially sighted receive health information in readable formats.

Are services duty-bound to act?

It is completely unacceptable that so many people are still experiencing challenges in access despite the policy and legislation in place.

Under the Equality Act 2010, all organisations are required to promote equality for disabled people in every aspect of their work, including access to buildings and services. Public sector bodies are also required to take proactive steps to ensure that disabled people have full access to buildings and service, under the Public Sector Equality Duty.

There is a wide range of legislation and guidance which reinforces the importance of meeting people’s diverse communication and access needs and outlines how to do this, which we highlight in our ‘Accessible and inclusive communication within primary care: What matters to people with diverse communication needs’ report.

Our recommendations to improve accessibility and inclusion

Throughout National Voices’ work and engagement with members and people with lived experience, including our Visions for the future of primary care and diagnosis, we hear three recurring recommendations that have the potential to radically improve people’s experiences of care:

1. For NHS England to work with patients, professional bodies and the Voluntary, Community and Social Enterprise sector to improve training for staff.

NHS England must work with professional bodies and patients to improve training for primary care staff. Training modules for all staff should be co-produced with people who require reasonable adjustments to meet their communication needs.  This should be provided to all administrative and front-of-house staff, as well as clinicians. This training should also include a focus on communication that is meaningful, with a person focused understanding of needs.

2. To improve the flagging of access and communication needs on NHS electronic health records

Electronic Health Records must improve the flagging of specific access needs and reasonable adjustments. This will help to prevent people from showing up for hospital appointments, only to be told they need to reschedule as the translator or the appropriate equipment they need isn’t available. NHS digital bodies should work with people with lived experience to review how digital tools could be better used to support the flagging of communication needs, paying attention to the prominence of flags as well as the information recorded; ensuring these are interoperable with automated systems (e.g. for letters and texts); and ensuring that systems support appropriate data sharing across care providers.

3. To ensure that providers are encouraged to meet access and communication needs, and to strengthen accountability for services who fail to meet these.

Finally, NHS England should work with Integrated Care Systems and commissioners to ensure they have the tools they need to commission for access and inclusion. This should include updated guidance on commissioning communication support (e.g. translation) as well as around ensuring providers are committed to inclusive communication. To strengthen accountability for services who fail to meet communication needs, the Care Quality Commission should review and strengthen their approach to regulating services, giving greater prominence to understanding whether services have effective processes in place to meet the communication needs of diverse groups of people.

Final thoughts

While people will respond and cope in different ways, being diagnosed with a health condition, whether treatable or not, can be a life-changing time. It is a process filled with anxiety and fear of the unknown. It is therefore imperative that people are well supported and empowered throughout the process and beyond.

A lack of accessibility and necessary adaptations can not only hinder the diagnostic process, as people are unable to access the tests they need or make fully informed decisions about their health and care, but delay it. Especially in the context of elective waiting lists and already delayed pathways, delays in diagnosis can be detrimental to patient safety, experience and could even prove fatal.

Equitable access to health information and services should be a pillar of our health and care system, and it is imperative that everyone is able to access health information, services, and diagnostic tests in a way, and at a time that works for them.

Share your insights

Do you have insights to share around accessibility and adjustments in health or social care? Perhaps you're a patient or family member with experiences to share around accessibility or adaptation needs not being met? Or maybe you are a healthcare professional who has made improvements in this area that could be shared for wider learning?

Get in touch with the team at [email protected] to explore how we can help you share your thoughts through the hub. 

Have you been affected by a delayed, incorrect or missed diagnosis? Add your comments to our community forum page. 

About the Author

Pavi is Senior Policy Advisor at National Voices. Pavi works across the breadth of policy and external affairs projects at National Voices, with a special interest in primary care and digital exclusion. In all her work, Pavi is committed to tackling health inequalities to make sure health and care services are accessible and inclusive for all. Prior to joining National Voices, Pavi completed a Master’s degree in Global Health and Social Justice and has previously worked in community pharmacy and an international pharmaceutical group.