My journey with not getting accessible information - Ian's story

Ian, who lives in Whitby, has Motor Neurone Disease which has affected his speech so email is his preferred format. He can read letters sent to him, his issue is about how he can respond if needed as almost always the only option is a telephone number. 

Ian said:

"Many people who do not use telephones are still able to manage their own administration. It may be a financial issue that the disabled person does not want to share with carers; it may be a personal health or personal care issue which again they don't want to share. Quite simply why should I ask, and pay, a carer to do anything for me that I can do myself?"

Ian feels all health organisations need to better understand the impact on disabled people of having to fight the system to get accessible information and services.

"It is the emotional impact of frustration and anxiety - of going to an appointment not knowing if what you need will be provided. Will there be an interpreter if you need one? A quiet room if you need one? Support? Too many people go to appointments not knowing if they will be able to express themselves or understand what they are being told/asked. It also costs money, as not sending information in an appropriate format means people will miss appointments (that they do not know they have) and that will cost the NHS."

Ian’s GP surgery gave a lot of excuses about not providing information in the right way for Ian. However, in recent years, Ian now has a GP’s email address and the generic practice email he can use. 

When organisations do not provide alternatives that enable Ian to communicate, Ian has challenged them. Some organisations are receptive, including North Yorkshire Council, who have worked to try find solutions.

Ian’s biggest frustration is with hospital trusts he is in touch with for appointments, where he has been told communication by email is impossible.