95 per cent of blind and partially sighted people are never asked and rarely receive confidential information from NHS staff in large print, email, Braille or other formats they can read, says research from the Royal National Institute of Blind People (RNIB).
Blind and partially sighted people from North London believe they are being treated differently than other patients as their safety, confidentiality and choices are routinely compromised.
Harjinder Jutle, 43, is registered blind and works in North London. She has lost faith in the NHS's ability to communicate with her. Mother of two, Harjinder is the Managing Director of the Eastwards Trust housing association. At work and home she reads large print and email when receiving and sending letters.
As a patient at one of the UK's leading eye hospitals, Moorfield's in London, Harjinder has on two occasions unnecessarily missed important appointments for assessments for specialist (magnification) equipment that supports her at work and at home. She also missed her GP's reminder letter for a cervical smear test that failed to arrive in large print.
Harjinder Jutle said: "Continuing to miss important medical appointments, for example my cervical smear test, creates an unnecessary risk to my health. I no longer wish to hear excuses about why I can't receive important medical information in large print, email or by 'talking text', which isn't a problem when I'm at work or at home. I routinely receive confidential information in those formats from my bank and others which I can read without asking for assistance from anybody else. I want the NHS to stop failing me and to start providing me with the same service that other patients receive.
Harjinder depends on specialist equipment that she needs to do her job. She added: "Failing to send my hospital appointment letters in large print or by email has meant two important assessments I needed to attend for low vision equipment were unnecessarily cancelled. For me one missed appointment leads to a wait of up to eight months. I no longer wish to jeopardise my health or ability to continue to work. I've lost faith in the NHS's ability to communicate with me."
Research from RNIB's Losing Patients campaign also found that, 72 per cent of blind and partially sighted people said they are unable to read information from their GP. Eighty-one per cent are unable to read medicine instructions and safety notices. Only one per cent wanted their health information given to them by a carer or relative. Details from appointment letters to instructions for taking medication are routinely provided in standard print that is, for too many people, unreadable.
RNIB, Enfield Vision and the Haringey Phoenix group have joined forces and set up an event in Enfield today (20 November) that brings together blind and partially sighted people, NHS representatives, local politicians and other stakeholders who will discuss problems and ways to find solutions.
Hugh Huddy from RNIB, who leads the campaign said: "RNIB's research shows the NHS is failing to communicate with blind and partially sighted people and is treating them less fairly then other patients. Within the NHS, the needs of patients who speak other languages are quite correctly taken seriously. The same can't be said of people whose sight problems don't allow them to read standard print. Health service providers are under an obligation to provide patients with equal access to health information. The majority of them are failing to meet that obligation."
Health service providers failing to provide accessible information are likely to be in breach of the Disability Discrimination Act (DDA) 1995.
In a joint statement, Diane De Jersey, Chairperson of Enfield Vision, and Tom Stapleton, Manager of Haringey Phoenix Group, said: "We support RNIB's 'Losing Patients' campaign because we know, only too well, that blind and partially sighted people in our area receive important health information in formats that they cannot read. Blind and partially sighted people are being denied their right to receive accessible information from health organisations who are under a legal obligation to provide it.
They added: "Many - if not most blind and partially sighted people have to rely on other people to read confidential and highly sensitive health information out loud. And as for prescribed medicine - who would want to take it without first being able to read the label? We at Enfield Vision and Phoenix Group are working hard with RNIB to give blind and partially sighted people that choice."
RNIB will work with local associations from across the country to support blind and partially sighted people to help them to find out about their legal rights in this area and to feel empowered to ask for information in a format they can read.
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For further media information please contact Bill Alker or Yashoda Sutton at RNIB Press Office on 020 7391 2223 (out of hours mobile: 07968 482 812).
The event is taking place at: Enfield Vision, Park Avenue Disability Centre, 65 Park Avenue, Enfield, EN1 2HH between 11am and 12.30pm, 20 November. Telephone 020 8351 7259.
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:
For more information visit www.rnib.org.uk/losingpatients <http://www.rnib.org.uk/losingpatients> .
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.