New research commissioned by the Royal National Institute of Blind People (RNIB) has found that patient safety, confidentiality and choice are routinely compromised as 95 per cent of blind and partially sighted people are never asked which reading format they require by NHS staff providing healthcare information. RNIB's campaign to change this situation, 'Losing Patients', launches in Sheffield on 17 July with the support of Sheffield Royal Society for the Blind (SRSB).
Research also found that 72 per cent of blind and partially sighted people reported that they are unable to read information from their GP and 81 per cent are unable to read medicine instructions and safety notices. Details from appointment letters to instructions for taking medication are consistently provided in standard print. Patients must then purchase aids to read it or lose their privacy and find someone else to read it to them.
Sheffield resident Sarah Bryan, 25 is registered blind. Following a cervical smear test at her GP surgery, a nurse offered to send Sarah's results in braille. Three weeks later she received a phone call telling her this wasn't possible and that a standard print letter would be posted which she could ask someone else to read to her! Sarah told them this was totally unacceptable. She says: "Why can't I get my personal health information with the same independence and confidentiality as a sighted patient? I was particularly offended by the assumption that I had a carer or someone to read my letter for me. It isn't the first time I've encountered difficulties. Three separate departments within the Sheffield health service have all been unable to provide me with letters that I can read."
A month after the test, and after several frustrating phone calls, Sarah finally received her results by email. She added: "A sighted patient would have received the results within a fortnight. Chasing my results was extremely stressful and time-consuming. I was becoming angrier by the minute at the lack of accessibility to visually impaired patients. I received congratulations cards in braille from friends when I got married in 2008, why can't I get information from health services?"
SRSB and RNIB are leading the first 'Losing Patients' event, taking place in the city on Friday 17 July. They have brought together blind and partially sighted people, NHS representatives, local politicians including Sheffield MP Nick Clegg, and other stakeholders to discuss the issues and find solutions fast.
Sheffield MP and Vice President of RNIB, Rt Hon David Blunkett MP says: "I support RNIB's Losing Patients campaign because I believe visual impairment isn't the problem, the problem is the culture of giving ordinary print to people who cannot read it. No patient should feel it's too much trouble to ask for accessible information or that a special effort is needed to secure their right to read. No patient should be forced to ask someone else to read their private test results out loud to them or be left with no choice but to take prescribed medicines without being supplied with an accessible label."
Steve Winyard, Head of Campaigns and Policy at RNIB says: "RNIB's research found both a lack of knowledge and understanding of the issue. NHS commissioners and managers must develop clear policies to meet the health information needs of blind and partially sighted people, and contractually oblige service providers to meet these. While frontline staff need training and clear processes in place to assess people's reading needs and then meet them."
Furthermore, failure to provide accessible information is also likely to be a breach of the Disability Discrimination Act (DDA) 1995.
RNIB will work with local associations in Sheffield and across the country to support blind and partially sighted people to find out about their legal rights in this area and to feel empowered to ask for information in a format they can read.
For more information read more about RNIB's losing patients campaign.
[End of media release]
For further media information please contact RNIB Press Office on 020 7391 2223 (out of hours mobile: 07968 482812).
Notes to editors
The research
RNIB commissioned Dr Foster to investigate the experiences of 600 blind and partially sighted people across the UK who had used NHS services in the last twelve months. The study also investigated the views of healthcare professionals in both primary and secondary care. Dr Foster conducted the study between July and November 2008. The Losing Patients campaign is based on the findings of this research.
Headline findings
95 per cent of blind and partially sighted people said they were not asked by NHS staff what format they required when they were given information.
81 per cent said they did not get information about their prescribed medicines, such as dosage instructions and warnings, in a format they could read.
72 per cent reported the information they received from their GP was not in an accessible format.
22 per cent said they had missed an appointment because the appointment letter was not in an accessible format.
Only one per cent of blind and partially sighted people said they wanted written information given via a carer or relative but 28 per cent of health professionals wrongly thought blind and partially sighted people wanted information in this way.
73 per cent of healthcare professionals either said their organisation does not have a clear policy on the provision of accessible information or they did not know if it did.
Further notes to editors
1. Every day another 100 people in the UK will start to lose their sight. There are around two million people in the UK with sight problems. RNIB is the leading charity working in the UK offering practical support, advice and information for anyone with sight difficulties. If you or someone you know has a sight problem, RNIB can help. Call the RNIB Helpline on 0303 123 9999.
2. Sheffield Royal Society for the Blind is the largest local independent provider of services to the 'sight impaired' people of Sheffield. Many services are provided at no cost by a dedicated team of staff and volunteers. For more information call 0114 272 2757.