My Health, My Business – An Accessible Health Information Standard For Northern Ireland

11th July 2018

My Health, My Business – An Accessible Health Information Standard For Northern Ireland

A lot of us take for granted the information we receive from the hospital or our GP, such as appointment letters, test results or information leaflets – but what if you’re unable to read the information you’ve been given? This week Paula Beattie, Policy and Campaigns Manager at RNIB tells us the difficulties blind and partially sighted people in Northern Ireland have with health information and what they think needs to be done about it.

In Northern Ireland there are at least 31,000 people who are blind or partially sighted.  As our population grows older this number will rise.  Recently the RNIB conducted research that shows the majority of blind and partially sighted people cannot read the information they are given, including that from health and social care services.

People tell us that they feel like second class citizens, having missed medical appointments because they haven’t been able to read their appointment letter or have been taking medication incorrectly because the directions label is too difficult to see.

“I don’t want to have to rely on my family and friends to read my medical information to me.”

“My privacy and independence are being compromised.”

These comments reveal the stark reality for people living with sight loss in Northern Ireland.  Through engagement with the sight loss community we have discovered that:

  • 72% cannot read personal health information given to them by their GP.
  • 22% said they had missed an appointment due to information being sent in an inaccessible format.
  • 65% had not heard of any legislation or policies designed to protect them from discrimination in receiving health information.

We also spoke to healthcare professionals:

  • 73% said that either their organisation did not have a clear accessible health information policy or were unaware if one existed.
  • 28% wrongly believed people prefer to receive information relayed to them by others.
  • 71% agreed a lack of training in meeting accessible health information needs.

The consequences of inaccessible health information can be serious.  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, by medication being taken incorrectly.  Patient privacy is also compromised as blind and partially sighted people often have to ask a friend or family member to read correspondence to them.

Inaccessible information is a barrier to patient choice, so what do we believe is the solution?

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

At RNIB we are calling for the introduction of such a Standard in Northern Ireland to ensure a consistent and specific approach to identifying, recording, flagging and sharing accessible information needs.

Blind and partially sighted people here 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.”

To learn more about the campaign and how to get involved please contact Paula Beattie, Policy and Campaigns Manager on 028 9032 9373 or email paula.beattie@rnib.org.uk

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