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Report on Deaf Awareness course University College London
I wanted to share with you how I had used some of The Fiona Fund award which I hope will have some long standing impact on care.
If you’re diagnosed with cancer you’ll be encouraged to ask lots of questions and to talk about how you are feeling. But meeting some people diagnosed with cancer who are Deaf made me realise this was not possible for them as hospital systems do not really allow this to happen and most (?all) NHS hospitals appear to have problems getting interpreters and are lacking in basic deaf awareness. I started looking at the issue to see what work had been done and a literature search found a few papers reporting how difficult it was for Deaf people when they have cancer, which was not a huge surprise. I gained a valuable insight working with a Deaf patient in our Macmillan centre and around this time had the chance to study an area of interest thanks to The Fiona Fund award. So as the timing was perfect and I started a Deaf Awareness course at UCL which has taught me a lot and I hope improved care in my little area and a plan to share wider!
So what did I learn? Deafness is the third most common (but invisible?)disability but the Deaf community tend not to identify as a group with disabilities but as a cultural minority with their own expressive language. While the community can be very supportive, many Deaf people will know of each other and may know the interpreters which can raise problems when the consultations are sensitive and this can be an issue not appreciated by many NHS interpreting services which added to the shortage of British Sign Language(BSL) can mean there is little choice for people.
The history of deafness is fascinating and how their society has been treated over the centuries to the present day when there is still so much to do to improve the day to day experience for Deaf people.
I did learn some very useful tips for communicating well and when using interpreters which are so important in making patient areas deaf friendly. However, as with any group there is such variation but for many people they may be fluent in British sign language but not written English. This can mean giving cancer information booklets to a person is giving information in a different language but I suspect this happens most of the time in clinics! There is a need to inform Deaf people about their diagnosis, treatment, side effects and part of my role is developing survivorship courses for people after cancer.
So my next plan is to develop our existing MOVING ON after cancer treatment course which we run in our Macmillan Centre specifically for Deaf people and their families, which we are both excited and apprehensive about but it’s a great opportunity to see if we can find better ways to support Deaf people who have cancer...and it’s all thanks to The Fiona Fund!
Thank you
Maria Leadbeater
July 2019