*Jim lost most of his sight as a teenager because of a genetic eye condition. To support him, teachers would make his notes in class and his text books would be audio recorded for him. These days, he can read faster than sighted peers thanks to a screenreader, but he still finds himself disabled when dealing with the NHS.
Jim says: “I've had a few health issues over the last five years and it's felt like I've been thrown back into the dark ages. My independence stripped away; I've missed out on important information regarding my health and have had to rely on other people because lots of things are done on paper rather than electronically. This can be embarrassing and demoralising.”
Here he explains his experience and offers suggestions on how the NHS can be more supportive to patients with sight loss and other disabilities.
5 ways the NHS experience isn't working for blind people
1 Medical records
For the last five years (until recently) I was – wrongly - told I had IBS. I asked my doctor about seeing my records but they said they couldn't email them to me, only print them out. I can't read a print out and it isn't always ideal to have someone else read your health information for you. This is not inclusive.
2 General written advice
Over the years, the doctor has given me slips of paper about tests and prescriptions, but I can't read them either. It's frustrating and you start to lose your independence.
When the chemist gives me information about when to take medication and side effects etc., I can't read that information, which can cause big problems and confusion.
It was only after four years of taking a medication for acid reflux that I realised that I shouldn't have be taking the medicine during a meal, it should be taken an hour before eating. I was also on another medication for IBS that relaxes the muscle above your tummy and I found out this results in more acid leaking up, so for someone with acid reflux, this not a great thing.
4 Appointment letters
After four years, I made the doctor refer me to hospital for a colonoscopy. They sent a letter telling me about the hospital appointment preparations, which I couldn't read. A neighbour tried to help, but it got embarrassing when the letter started talking about laxatives. I asked for the information electronically, but was told they couldn't do that and could only send a picture of the information electronically, which a screenreader can't decipher.
5 Test results
I had some tests at hospital and they found a small bacterial growth in my small intestine, so I didn't have IBS in the end. They gave me a letter with some information about the tests for my doctor. I couldn't read it. I asked for an electronic copy, but the member of staff insisted there was no need because it was for my GP rather than me anyway!
I mentioned the new Accessible Information Standard (a mandatory code of practice for the NHS as of last year) and declared that I wasn't happy because the letter could say anything; how did I know for sure it didn't say 'donate his kidneys to charity next week'? At that point she took me more seriously. But it took a whole lot of energy.
How the NHS can help blind and disabled people have a better experience
1 Spread more awareness of the Patient Access Online service, and make it more extensive
Jim had been going to his GP for years no one told him about the Patient Access site. The site offers some information to be read online, in some areas of the UK - the offering varies. Ensuring comprehensive information is provided on the site including details on medical history and past and present medication, together with side-affects and instructions on when and how to take prescribed medication, is essential for inclusivity. Ideally login details for the site should be provided in a way a blind patient can read. Jim found his doctor could only give him a print out/ letter with login details.
2 Exercise thoughtfulness and consideration
Jim found an amazing administrator who went out of her way to email him letters, but she got into trouble for doing so as it was against policy. Security issues around online information are sometimes stated as reasons for not providing more information electronically, but Jim has been told recently that there is a policy around how to securely email patients after all.
3 Educate staff about disabled patients' requirements
Everyone who is in touch with patients, from the receptionist as the first port of call, through to surgeons, should know how to offer the best service for people of all abilities to feel empowered and independent.
4 Provide orientation and travel support
More help for disabled people travelling to hospital and a network of volunteers to help someone who is blind to get around the hospital would be most useful.
5 More electronic information
“IT systems need to be in place to stop the NHS disabling me,” says Jim. “I hope for the day I can manage my healthcare - from knowing when my next appointment is and how to prepare for it, to ordering my repeat prescription and reading my medical history on my phone electronically’.
*Jim is an alias name given to protect anonymity