Question:  Have you received healthcare information in a format that was not accessible for you?

Results:

Yes – 90% (145 respondents) No – 10% (17 respondents)

Your comments:

“I have missed 2 appointments because I couldn’t read what the letter said and by the time my family visited it was too late. I am still waiting for a new appointment. My family asked them to send the appointment to them but they were told they can only send it to my home address.”

“I have been waiting over a year for an appointment just to discover I had missed it because it hadn’t been emailed to me and I can’t read printed letters. I did discover this as I was emailed by the hospital to say I was being removed from the appointment list as I hadn’t attended. I’m now on the list again but at the back of the queue. My sighted partner has to read all the appointment letters as most clinics refuse to email me even though there is The Patient’s Charter saying you have the right to accessible communications. This will only happen if it’s enforced by law or government. “

“The letters are always really confusing. I normally get someone to read it for me and tell me what I need to do and when. Not great. Is easy read an option and larger print? Can we reduce the letter to no more than 1 A4 page of information and can we use text alerts more please? Likewise please make the information leaflets that come with letters more inclusive and accessible (easy read would again help) as I can’t make head nor tail of them.”

“Can the letter include journey planning that goes beyond calling Traveline Scotland as they can’t help and you can’t plan an accessible journey using their online facilities or app if you are disabled. My family have tried and failed numerous times so ended up taking unpaid time off work to take me to my appointment. “

“I have asked for documents to be provided in an accessible format for over thirty years with no success and continue to rely on Personal Assistants for support at my personal cost.”

“I normally have to get my husband to read the document out to me (or a family member). I don’t always like doing this because it means sharing confidential medical information, but I need to do this as I have a visual impairment and can’t read the letters in the format they are sent to me. “

“Once you work our who to phone everything is automated and confusing. What happened to simple person to person dialogue to improve communication?”

“Healthcare like many organisations, businesses, banks and service industries do not allow for people with difficulties using telephones, people with memory problems, people with processing disorders, people with neurological deficits, etc. Many such organisations are in fact actively discriminating against people with such neurological disabilities. Many organisations have suspended use of email in favour of live chat and telephone.”

“Within Ayrshire & Arran Health Authority not once have I received health documentation, letters etc in a format I can read (Braille or Electronically). I have asked at Appointments however, despite Legislation etc, I am always told that Braille Leaflets etc are not available. In addition they claim that Appointment letters cannot be sent via Email due to Data Protection.”

“I received a letter headed H M Government about warm homes scheme for vulnerable people. The letter contained no sender’s address and no reply address. It only gave a telephone number which is useless to deaf people.”

“The information they give you to prepare for your appointment needs to be in Easy Read, “

“Information formats are very poor and can be confusing. I have asked for an easy read version of information about my appointments but been told they don’t do this.”

“Not personally, however, supporting individuals with sightloss. They often sent out information that was too small for the individual to even read with a magnifying glass.”

“It is often too jargon loaded and difficult to understand.”