Can You Understand It! Team
Oxleas NHS Foundation Trust
The Can You Understand It! (CYUI!) Team is an editorial group that aims to ensure everything written down is more accessible to people with learning disabilities. The team meets once a month and we review leaflets, booklets and video clips that are aimed at people with learning disabilities. The team consists of eight ‘Experts by Experience’ each of whom hold honorary contracts, an information officer and a consultant nurse.
At Oxleas NHS Foundation Trust we run a couple of ‘service user experience’ events each year. In November 2016 we decided on the theme of ‘Your health and communication’. The CYUI! Team met several times to plan the event and practice what we were going to say on the day. Here is a succinct version of we did and the experiences and thoughts of those who attended.
‘Going for a blood test’ role play
After introducing the day we started with a role play. This was enacted by members of CYUI! team and it involved a son and father going for a hospital appointment for a blood test. We wrote the script to purposefully involve some good examples of accessibility and some bad practice. The son and father asked a member of staff where you go to have blood taken. Then when they arrived the receptionist was rushed, not paying attention and was quite rude. The nurse was polite but didn’t understand what learning disabilities are and thus had no easy read information and didn’t explain what was about to happen. The son remembered to take his Black Book (Personal Health Profile) with him and the nurse didn’t fill it out when asked. We then asked the audience to write their observations on flip charts. Here’s what they found:
‘The staff member guided them to find where the appointment was’
‘The patient remembered to take his black book’
‘The nurse welcomed the patient and parent’
Could be better
‘The nurse didn’t give them enough time’
‘The signs were not good at this hospital’
'The receptionist had an attitude problem’
‘No experience of working with people with learning disabilities’
Everyone enjoyed the role play and of course we hope that in reality things are much better than this!
Experiences of going for a hospital appointment
Everyone at this event had personal experience of going to a hospital appointment. We wanted to hear about their experiences, so we asked the audience to split up into small groups and members of CYUI! team supported each table. These were some of their feedback:
‘Making adjustments is important. Like having the first appointment and giving you time to answer questions’
‘I met friendly and helpful nurses. They created a good atmosphere and were cheerful’
‘Having easy read information is really good, especially about medication’
Experience that could have been better
‘I always see a different doctor each time’
‘It’s hard to understand letters before you go to the doctors and should be written in easy read’
‘They always use long words, medical words. Should use words that I understand’
Developing a Bill of Rights for communication
The CYUI! team want to develop a bill of rights for communication. It’s about what’s important to people with learning disabilities when they communicate with other people. The purpose is to explain to other people what adjustments they need to make to the way they communicate with people with learning disabilities. So we explained to the group ‘what a bill of rights is’ and we asked them what’s important for them to communicate with other people. Communication included talking, sign language, braille, pictures/photos and writing. We were amazed by the responses we got, from the amount and content. We haven’t got enough space to cover all their points, so here is a succinct list!
‘easy read signs should be in public places, like police stations, toilets, hospitals, airports, restaurants’
‘read about how the person communicates first’
‘respect everyone and how they communicate’
‘check if the person understands what you have said’
‘use short sentences, be straight to the point’
‘use large print and pictures’
‘speak to the person first, not their carer’
The event was very enjoyable and we learnt so much from the people who attended. We have started to write our bill of rights and will share this with everyone when finished. So a big thank you goes out to everyone who attended and made the day a success!
Here's a photo of everyone helping write the Bill of Rights