I have Usher Syndrome, I am deafblind and my condition is degenerative.
The fact that it gets worse and my abilities change all the time means that I have to make continual adaptations in every task that I do. This leads to a continuous stream of appointments, meetings, letters, emails and phone calls with various health professions, social workers, charity organisations and support workers. This would be exhausting for anyone, however, the fact that Usher Syndrome means communication and accessing information is particularly challenging and can be made almost impossible without due care and attention given to specific accessibility needs.
I am very open about having Usher Syndrome. I will patiently explain that I have it, what it is, how it affects me and what assistance I require constantly. I request that these details are highlighted on all notes held by each organisations.
Therefore you would hope that the word Deafblind - patient/client/service user/customer is both hearing and sight impaired, is a limited lipreader, prefers plain text, font size 22 ariel, wears hearing aids/uses a long cane and is a guide dog owner, requires emails (email address provided) or texts (mobile number provided), would ensure my accessibility needs are met.
Unfortunately I can testify that sadly it does not.
I recently received a letter from my local audiology department. The letter came in "normal" font (10/12) It was difficult for me to read. I had to ask my husband to read it fully for me!
It was a standard letter stating that their hearing reviews were now being carried out over the telephone, I would need to ring telephone number xxx on such a date at such a time for my review. If I could not do this I was to ring telephone number xxxx to let them know, what is more if I didn't ring at all they would assume I didn't not want a hearing review!
I was at a loss, speechless. My immediate response was incredulity that an Audiology department was using an assessment method that relied on good hearing, followed by frustration.
I don't even have a landline installed at home - there's no point - I can't hear it ring, and I can't hold a conversation on it because I am deaf. I do not have a Typetalk screenphone or minicom because I am blind - I can't read the words. How would I be able to do this assessment at all?
Then I was angry, FURIOUS.
They do not seem to know or care what impact these type of letters have, how incredibly frustrating to have inaccessibility so often and not just from an NHS Hospital but an audiology department that should know better. That their inexcusable inaccessible correspondence should leave me having to find an alternate way of accessing not just the correspondence but this absolutley ridiculous idea of assessing my hearing.
The letter and process used was about their convenience, not mine - totally forgetting the purpose of their role.
They are supposed offer me a service, not frustrate me.
I do need a hearing review, but face to face and driven by me - there are questions I need to ask. My audiology equipment needs maintaining. I need to maximise my hearing potential and here yet another barrier to accessing my essential services.
My anger comes easily because it is not a one off occurrence. It happens across all services consistently.
Last year my GP would only speak to me by telephone consultation. At the time of the appointed telephone consultation I travelled to the surgery so she could speak to me face to face and I could lipread her with my limited vision. She refused to open her door despite me being sat in the other side of the door in her waiting room. She instead telephoned my husband who was 11miles away to discuss my health concern.
I changed my GP having felt utter disbelief and anger at being denied my accessibility requirements and being treated like a second class citizen.
I don't need this stress, my life is hard enough.
Every day is a mountain to climb,consideration, understanding and a helping hand readily given would make my life so much easier to bear.
The sad thing is technology is available and can help so much. So we now often have the tools but sadly not the helpful attitude to go with them!