A A A Accessibility A A A A
Our aim is to raise awareness of the  condition and its many challenges

Our aim is to raise awareness of the
condition and its many challenges

Funding mainstream assistive technology

Funding mainstream
assistive technology

To bring together those living with  the condition, to share experiences

To bring together those living with
the condition, to share experiences

To ease isolation

To ease isolation

To recognise and raise awareness of enabling assistive technologies

To recognise and raise awareness
of enabling assistive technologies

Slider

Molly Watt Trust

Saturday, 18 June 2016 15:17

Unacceptable Audiology

Written by  Claire Morley
Rate this item
(12 votes)
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!
Read 22838 times

 

Recent Blogs

Ultimately we can all be winners

Ultimately we can all be winners

This year saw me nominated for three awards, Young Digital Leader for Digital Leaders for the second time (Too old for that one again) Positive Role Model for Disability, National...

Read more...

Virgin Train #Fail

We were truly horrified to hear of Molly's recent expereince at London's Euston Station and it must never happen again:   I travelled from Maidenhead to London Euston to catch a train...

Read more...

Helen diagnosis 'I felt my world fel…

Helen diagnosis 'I felt my world fell apart'

My name is Helen Colson. I’m 29 years old & live in Southport, Merseyside. I was diagnosed with Retinitis Pigmentosa and as I am moderate-severely deaf, Ushers Syndrome last year.  It...

Read more...

Olivia's Usher Life - Last few month…

Olivia's Usher Life - Last few months of emotions

Hello Everyone! Would like to wish you all happy deaf blindness week! I’m so sorry that I haven’t posted in it feels like ages! But I’ve got soooo much to...

Read more...

Where did our journey with Usher Syn…

Where did our journey with Usher Syndrome begin?

Where does our story begin..... Alice (now 16) was born profoundly deaf. In Oct 17 at a routine eye test (Alice has always worn glasses) they picked up an issue...

Read more...

The evolution changing Usher Syndrom…

The evolution changing Usher Syndrome

Usher Syndrome is a strange thing, strangely it is evolving even though it hasn’t changed.  It remains a condition without a cure. There are variations in level of deafness, in level of...

Read more...

Whispers in the Dark

Whispers in the Dark

It’s never been easy. Having to scan the floor in front of you when walking down the street. Having to pre-plan the route to the nearest toilet in a restaurant...

Read more...

GAAD - Not if but how!

GAAD - Not if but how!

Indeed back in the 19th Century it was Helen Keller who stated “DEAFNESS SEPERATES US FROM PEOPLE AND BLINDNESS SEPERATES US FROM THINGS”. Back then she was right, she lived...

Read more...

Equal access to sound for all

Equal access to sound for all

Today is ‘Rare Disease Day -2019’ So I decided on a blog about hearing aid technology that can and does enhance lives.  This http://www.nciua.org.uk/latest-new/ was brought to my attention several weeks ago. ...

Read more...