As UK and Scottish Government, health officials and businesses grappled with the spread of coronavirus, the outbreak highlighted the importance of effective and accessible communication, so everyone knew how to keep themselves and the community safe.
However, during the pandemic, accessible formats for blind and partially sighted people were distributed after standard documents were released, leading to health inequalities.
Around 178,000 people live with a significant degree of sight loss in Scotland, so the need for accessibility is high.
People rely on good communication to ensure that they understand their health information and needs, as well as being able to make informed choices and act independently. For most people this is achieved through printed information, but for a person with sight loss, printed information is often inaccessible.
Many blind and partially sighted people are currently receiving less support at home due to the risks posed by COVID-19. This has led to individuals being home alone for a significant number of days during which health-related letters could be potentially left for weeks unread or put in the waste as junk mail.
Accessible health information is crucial and there needs to be inclusion of the requirements under the Equality Act 2010 and Patient Rights (Scotland) Act 2011, which sets out the responsibility of the NHS to provide accessible information, including the requirement that “Communication about a patient’s health and wellbeing is clear accessible and understood”.[1]
A Charter of Patient Rights and Responsibilities[2] accompanied the Act. This summarised the existing rights and responsibilities of patients using the NHS in Scotland, setting out that “You have the right to be given information about your care and treatment in a format or language that meets your needs.”
At present, however, there is a lack of consistency when receiving accessible formats, with requests not being correctly managed or not logged centrally.
This was discovered through research for our “Communication Failure?”[3] report which found that blind and partially sighted people lacked confidence when considering requesting accessible formats from their health service. This was put down to feeling “a burden” or not wanting to be seen as “difficult”. They do not feel that they can enforce their rights to access information, as one respondent explained:
“No [I do not feel confident], because I worry I’m not worthy enough as I can just about manage with standard print for short lengths of time.”
Some respondents expressed a lack of trust in the health service and instead used their own supportive technology to make documents accessible at home, as one respondent explained:
“It’s easier to do it myself on a scanner so I don’t ask for information. If you’re ringing, they wouldn’t be there.”
People with sight loss should be informed about the accessible options available to them from the very beginning of their healthcare journey, giving them the opportunity to self-manage and control their own healthcare needs.
Accessing information online can provide blind and partially sighted people with valuable healthcare advice and empower them to better manage their health and wellbeing while supporting independent living. As more of our public services move online, digital inclusion has become more necessary than ever before.
Technology can reshape and improve services, support person-centred care, and improve outcomes.[4] Furthermore, from 2019 – every public sector website and app including those of the Scottish health boards – will need to meet certain accessibility standards under new regulations.[5]
However, a digital divide exists in Scotland.[6] This is partially due to geographic barriers with around 25 per cent of rural households experiencing poor broadband speed.[7] Those who do not have internet access at home need to use a public service computer which requires pre-planning and may mean lack of privacy.
Levels of digital uptake can be significantly lower for people with disabilities.[8] Accessing online information, for example, filling in forms online, can be very time consuming or completely inaccessible.[9] Visual barriers such as inconsistent font sizes prevent blind and partially sighted people from accessing information with ease. One respondent explained:
“Websites are very complex to navigate in general so when you have sight loss of any degree it becomes harder. It would be good to have a button to press so that the website becomes less busy and shows simple text.”
Due to a lack of awareness and understanding of what accessible health information is available to them, some blind and partially sighted people were left feeling disengaged and disempowered. More work must be done to ensure that all accessible options are clearly stated, providing people with sight loss with the information they need to manage their healthcare needs.
The effects of not receiving information in a preferred and accessible reading format should not be underestimated. This is leading to people with sight loss feeling unable to take control of their own health needs whilst their patient confidentiality can be compromised.
Laura Jones is Senior Policy Officer (Health & Social Care) at RNIB
[1] Patient Rights (Scotland) Act 2011, Scottish Government https://www2.gov.scot/Topics/Health/Policy/Patients-Rights
[2] Your health, your rights – The Charter of Patient Rights and Responsibilities, Scottish Government, 2012 https://www2.gov.scot/Resource/0040/00407723.pdf
[3] Communication Failure? A review of the accessibility of health information for blind and partially sighted people, RNIB Scotland, 2020 https://www.rnib.org.uk/scotland/reports-and-publications-rnib-scotland
[4] Scotland’s Digital Health and Care Strategy: enabling, connecting and empowering https://www.gov.scot/publications/scotlands-digital-health-care-strategy-enabling-connecting-empowering/pages/3/
[5] The Public Sector Bodies (Websites and Mobile Applications) (No. 2) Accessibility Regulations 2018 http://www.legislation.gov.uk/uksi/2018/852/contents/made
[6] Spreading the benefits of digital participation, The Royal Society of Edinburgh, April 2014 http://www.rse.org.uk/wp-content/uploads/2016/09/Digital-Report-High-Res-EQ5.pdf
[7] Superfast broadband for Scotland, Audit Scotland 2018 http://www.audit-scotland.gov.uk/uploads/docs/report/2018/nr_180920_broadband.pdf
[8] Op cit, The Royal Society of Edinburgh.
[9] Ibid.