RNIB Northern Ireland

My Health, My Business

Blind and partially sighted people have a

right to read their own health information

“I am unable to read any information that comes to me regarding my health. I am totally blind. All the information comes to me in print. I have to rely on my daughter to read this information to me.”

Margaret Mann

The Stark Reality

At least 31,000 people in Northern Ireland are blind and partially sighted, and this is set to rise as our population ages.

Research shows that the majority of blind and partially sighted people cannot read the health information they are given (RNIB, 2009).

We each have the right to manage our own health affairs with the same level of confidentiality. We are concerned that the health information rights of people who are blind or partially sighted are

being denied.

People with sight loss

72 per cent reported they cannot read personal health information given to them by their GP

22 per cent said that they had missed an appointment due to information being sent in an inaccessible format

65 per cent had not heard of any legislation or policies designed to protect them from discrimination in receiving health information

Healthcare professionals

73 per cent reported that either their organisation did not have a clear accessible health information policy or were unaware if one

existed

28 per cent wrongly believed people prefer to receive information relayed to them by others, such as relatives or carers

71 per cent reported a lack of training in meeting accessible health information needs

The Consequences

Inaccessible health information can have serious consequences:

• Patient choice is central to the health service agenda, yet

inaccessible information is a barrier to patient choice

• Health information is too often delivered verbally and so the responsibility is shifted to the patient to remember information accurately

• Patient safety is compromised, for example, medication taken incorrectly

• Loss of independence as people are forced to rely on friends, family and carers to read information to them

• Patient privacy compromised

• Blind and partially sighted people are missing important

medical appointments.

“The most important thing is that I get information in the format I

have asked for. In the past year, I have missed important medical

appointments. This makes me feel like a second class citizen.”

Mark Bridgeland

The Solution: An Accessible Health Information Standard in Northern Ireland

In July 2016, the NHS Accessible Information Standard came into force in England. It mandates that all healthcare providers must provide information in a format their patients can read.

RNIB calls for the introduction of such a Standard in Northern Ireland. It would ensure a consistent and specific approach to identifying, recording, flagging and sharing accessible information needs.

NHS England has taken a major step forward in trying to solve this failure. It’s time we did the same in Northern Ireland.

People have been waiting too long for this vital issue to be resolved.

“ If healthcare providers met the Accessible Health Information

Standard, I would be able to make my own decisions, and decide what to tell other people and what not to tell them.”

David Mann

You can help effect change to ensure that people with sight loss receive health information they can read. To learn more about the campaign and how to get involved

please contact:

RNIB Northern Ireland Campaigns team

on 028 9032 9373 or email

#MyHealthMyBusiness

National Helpline 0303 123 9999

facebook.com/rnibnorthernireland

twitter.com/rnibni

rnib.org.uk/campaignsni

charity number 205913 (England and Wales)

SC040050 (Scotland) and 1203 (Isle of Man)

RNIB registered charity number 226227

(England and Wales) and SC039316 (Scotland)