All health and social care services are required to meet people’s needs for accessible information and care if they have a disability or sensory impairment. Yet findings from Your Care, Your Way – a campaign led by our Healthwatch service – shows these needs are still not being met consistently.
This is despite the NHS Accessible Information Standard (AIS) — a national framework that has been in place for more than a decade to help services meet people’s communication and access needs.
Following feedback from more than 100 people with a visual impairment, we’re asking services and commissioning bodies to look again at how well they are meeting the requirements of the AIS and to demonstrate meaningful improvement.
You can find the report and key learning at www.healthwatchsuffolk.co.uk/your-care-your-way/visurvey.
Note: This report has been delivered by our Healthwatch service – a statutory service that captures and shares feedback from people in Suffolk about using health and social care services to shape, influence, and improve standards of care.
Key survey findings
People’s responses highlighted how visual impairment affects daily life in ways that are often invisible — and how health and care systems can make things harder.
1. Inaccessible information is still causing anxiety and potential harm
Although most people felt services generally met their communication preferences, nearly half had experienced a negative impact because of inaccessible information. This included missed appointments, not being able to contact a service, and difficulties with medication.
Common avoidable challenges people faced included:
- inaccessible appointment check-in systems
- poor communication about using medications
- dazzling lighting
- inaccessible signage in services
- low awareness of people’s needs amongst staff
- letters or results shared as images unreadable by screen readers
- reliance on paper-based tools for monitoring conditions or participating in services.
The small print on medication packaging was a particular challenge for some, leading to confusion or uncertainty about the correct dosage and how to take medicines safely.
2. People’s needs were not always recognised or supported
Most people praised staff for being helpful and caring.
Respondents particularly valued staff who were friendly, willing to spend time supporting them, and proactive in recognising their needs. This included practical help such as completing forms, showing people where to sit or wait, opening doors, collecting patients from waiting areas, and giving clear verbal directions about where to go and who they were seeing.
However, this level of support was not consistent. Staff were not always available, aware of people’s needs, or confident in how best to support them. Some made assumptions about people’s abilities, while others did not ask about preferred formats for receiving information. Several respondents felt their needs were overlooked, and some said that alternative formats were not always provided – even when they requested them.
This left many relying on partners or support workers to access services and engage with staff – a loss of independence that some found disempowering, especially when staff spoke to their companions or partners instead of directly to them.
Wendy Herber (Independent Chair, Knowing Works CIC) said:
“Feedback suggests services are getting better at meeting people’s needs, and many people praised staff for being patient, compassionate, and helpful. Technology and text messaging has also made a difference — but they are not a one‑size‑fits‑all solution and can themselves be inaccessible, as this report shows.
“Despite advancements, some parts of the NHS remain reliant on physical copies of documents. We continue to hear stories of people with total sight loss being sent multi‑page forms to complete. This kind of inaccessibility causes stress, removes independence and privacy, and leads people to disengage or be excluded from their proper care.
“Our local health and care system aims to be ambitious, collaborative and kind and this report shows how they are delivering on those values – and how they can do even more. Change doesn’t have to be difficult or expensive. Many issues can be resolved through greater awareness of visual impairment, involving people with lived experience in service improvement, and taking committed action to meet the Accessible Information Standard.
“We are calling on all services and commissioners to review their AIS compliance and take meaningful steps to reduce the inequality, cost and delays caused by inconsistent accessibility.”
What needs to change
There is no question that advancements have been made to improve accessibility of information and care, but people’s experiences remain inconsistent.
The RNIB has shared three critical areas that need to be addressed for information to be accessible to blind and partially sighted people, which our Healthwatch findings support. They are:
- Fit‑for‑purpose NHS and social care IT systems: Systems must be able — and required — to record, flag and update people’s communication needs, and share this information appropriately across services.
- Better staff training: Providers must ensure staff understand the importance of accessible information and have the skills to deliver it. Training should be mandatory and co‑created with people who have communication needs.
- Stronger oversight of AIS compliance: Clear, consistent monitoring of the NHS Accessible Information Standard (AIS) is essential. Without local accountability, progress is difficult to track or sustain.
The NHS Accessible Information Standard (AIS) provides all the information and resources needed for services and organisations to meet people’s needs. The Standard, which was recently updated, includes clear expectations that all health and social care organisations should:
- appoint a senior named role responsible for overseeing the Standard being put into practice.
- complete annual improvement plans to assess how well they are meeting the Standard, which can be done using the NHS provider self-assessment tool.
For change to happen, we need to see coordinated action to promote AIS compliance consistently across all services in Suffolk. The Integrated Care Board has clear responsibilities to ensure this happens under the AIS guidance.
This includes:
- ensuring that NHS and social care providers in their area follow the Standard.
- appointing a senior named role at board level, with responsibility for the Standard within their portfolio.
To find the provider self-assessment tool, and more information about the AIS, please visit the NHS website at www.england.nhs.uk/accessible-information-standard.
Discover Your Care, Your Way
These latest insights add to those already shared by our Healthwatch service to influence standards of local care and support. Please visit the campaign page (www.healthwatchsuffolk.co.uk/your-care-your-way) to find:
- Our insights and top tips for improving accessible care for d/Deaf and hard of hearing people and communities.
- Information about what people should expect from services and local resources.
- And more.
Plus, watch our videos with Simon, who shares his experiences of living with the total loss of his eyesight. That includes the impact of his diagnosis, as well as insights into his experiences using health and social care services.
Start with our video below and watch the full series at www.healthwatchsuffolk.co.uk/news/ycyw-simonsexperience.
“There is life after sight loss. I found it.”