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11-Jul-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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Previous comments ...

Robert Magee 16-Jul-2018 at 12:11 hrs

It is alarming to learn about the huge number of partial sighted or Blind individuals and the difficulties that they have to overcome. We really do not appreciate the difficulties until we are faced with the reality . I would fully endorse any legislation that improves situation. However I would request that this legislation be more holistic in it's approach for all person's with disability to include those with learning difficulties and mental issues. Communication is vital at all levels, I have only recently had to step to the fore for my wife post a Brain operation , and encounter numerous interface issues with medical correspondence and appointments. Whereby my wife struggle's greatly with communication however despite numerous attempts at requesting myself as the primary contact, under data protection I have to undergo lengthy debate!! Surely it is a simple matter to highlight / Red Mark key important facts on file, that is in open access to all medical professionals which would greatly streamline process for all and remove all unnecessary stress. To day I have spend from 09:ooam until 12:00pm to try and confirm admission appointment for my wife , only to be informed that unfortunately hospital staff will have to speak directly to my wife at 14:00hrs!! I rest my case , and will have to ensure that I am with my wife at said time!! If retailers can use an app to register purchase of goods, inform of collection time and date, surely we could adapt model to confirm confirmation of admission or Bed availability?

 
 

charlie lynn 15-Jul-2018 at 11:55 hrs

Just would like to say in response to your email that many of the problems mentioned I have never heard before. I often get more than one appointment for the same day at the same time which can cause a lot of hassle especially if they are hospital appointments. I do get angry sometimes when at my GP and the screen shows that up to 150 people failed to keep their appointments last month. I think these people should have to pay for their next appointment.

 
 

E.Murphy 13-Jul-2018 at 21:43 hrs

I remember when I first say my name across a screen in the GP surgery. This was to alert me that the doctor was ready to see me. I expected that my name would be called out by the receptionist also but that was not the case. I thought, what if I had a problem with my sight?I would still be sitting waiting on my appointment.

 
 

Brendan Clarke 13-Jul-2018 at 16:36 hrs

People with hearing problems and their clinicians can also have major problems in consultations about very serious conditions. It is far too easy for a patient to think they have fully understood information given to them while actually having misheard crucial elements of the discussion.

When I go to GP appointments patients are routinely called by a video screen but when I attend my frequent out-patient appointments with various disciplines I am dependant on hearing my name being called vocally.

It is incomprehensible that even the ENT out-patients do not have a screen to call patients attending because of their hearing problems.