A communication passport is a way of supporting a vulnerable person with communication difficulties when they have to transition through different events, such as changing schools, or their first job. In Ryan’s case, we made a new specific communication passport for his medical file so that all the medical professionals could learn a little about Ryan before they met him and therefore be better prepared and able to interact with him.
A communication passport draws together complex information (including the person's own views, as much as possible) and formalises the information into a clear, positive and accessible format.
Every passport is individual and every layout must be utilised for the specific person and audience for which it is intended.
When Ryan moved from Primary to secondary school, his primary school made a really detailed tri-fold, double sided leaflet. This was invaluable to all the teachers that would get to know Ryan in their various lessons. For the hospital, however, we felt a one-page profile on A4 in large print would serve the situation best. It was stuck into the front cover of his medical notes and was short, brief and bullet-pointed so that doctors and nurses could quickly grasp the information in their more busy setting.
Decide the layout, knowing the audience you want to reach and the information they need to know.
Things you need to know
- I understand most things, but I need time to process them.
- I take things literally – if you give me a time I will expect it to be at that time.
- I find talking to people difficult.
- I don’t like changes without warning.
- I don’t like too much noise or too many people around.
- I try my best to make eye contact.
Things I do to help me
* I focus on my laptop or my phone and I wear my headphones.
* I have dark humour
Things you can do to help me
* Give me time before a procedure – warn me first if possible
* Talk to my Mum
* Ask me clear, simple, direct questions. (for example, I won’t tell you I have
a sore throat if you ask me how I am feeling BUT if you ask me if my throat
is sore I will answer yes or no)
* I would like to have a time slot to know when to expect you. (It can be
between two times.)
* If possible can I have afternoon appointments, please.
Obviously, this isn’t always going to work. We had one instance where an individual had not read the information and was not aware of Ryan’s complex needs, this resulted in a difficult confrontation with Ryan and ultimately myself, that could have easily been avoided.
Ryan finds it difficult to communicate even with me and uses Whatsapp as a tool to 'talk' to me. He finds it easier to type a message to me. It works for us and I then screenshot if need be to feedback to the doctors, things that Ryan wants them to know, or to ask.
I had plans and ideas to create a much needed Autism Advisory Initiative, working closely with hospitals through the LATCH Welsh Children’s Cancer Charity to provide support and training to staff that have to deal with a myriad of additional needs. However, my own mental health has proved not to be strong enough at this stage to move forward with my ideas. If anyone would like to take it on, please do get in contact and I can liaise with you on what we envisage and have so far achieved.
If you or a loved one has had to spend time in the hospital and have found it difficult to receive appropriate support due to having additional needs that were not met appropriately we would also like to hear from you too.