Ninety-fiev per cent of blind and partially sighted people are never asked and rarely receive confidential health information 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 the Batley and Dewsbury area believe they are being treated differently than other patients as their safety, confidentiality and choices are routinely compromised.
Patients like David Quarmby, who is 60 years old and registered blind due to retinal deterioration. David works for West Yorkshire Probation as a manager in the Wakefield office. Occasionally he has received tablets that were labelled in Braille, but supplied minus any instructions in Braille on how to take them. His continued requests for important health information by email or in Braille is effectively being ignored.
David Quarmby said: "All my requests for health information to be communicated to me by email or Braille have been ignored. Recently I had to undergo two operations to remove cataracts. Prior to the first operation, I was given a leaflet in standard print which I couldn't read and asked to sign to say I'd read and understood the leaflet! Through no fault of my own, I've missed hospital appointments and subsequently been written off the waiting list because I haven't received appointment letters.
He added: "Whilst the quality of care I received during the operations was good, what followed wasn't. I haven't received any further information from the hospital in a format that I can read. If I received information by email I could answer the following questions. Were the operations a total success? What is my prognosis? Will I need to attend another appointment? Without such information I don't know the answers and will unnecessarily have to waste my GPs time finding out."
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 consistently provided in standard print that is, for too many people unreadable.
RNIB and The Society for the Blind of Dewsbury Batley and District have combined to set up an event in the Whitfield Centre in Batley that brings together blind and partially sighted people, NHS representatives, local politicians and other stakeholders who will discuss problems and ways to find solutions.
Health service providers failing to provide accessible information to blind and partially sighted people are likely to be in breach of the Disability Discrimination Act (DDA) 1995.
RNIB campaign officer for Yorkshire Roy Ruddick 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."
Hilary Schreiner, Chief Executive of The Society for the Blind of Dewsbury Batley and District says: "We support RNIB's Losing Patients campaign because we know blind and partially sighted patients from our area don't receive important health information, appointments and prescribed medicine labels in formats they can read. Members of our Society repeatedly tell me that they would like to be able to understand their own confidential health information without having to ask a friend or family member to read it out loud.
She added: "Blind and partially sighted people's choice on how they receive health information is taken away from them. The Society for the Blind of Dewsbury Batley and District and the RNIB are working hard to raise awareness of this issue and to ensure that blind and partially sighted people will always receive health information in their chosen format in the future."
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, RNIB Press Office on 07791 276 790 or 020 7391 2223 (out of hours mobile: 07968 482 812).
The event is taking place at: The Whitfield Centre, 180 Soothill Lane, Batley, WF17 6HP on 20 November, from 2pm till 4pm. Tel 01924 445 222.
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.
Seventy-three 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.
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