It was very concerning to read Sense's report https://www.sense.org.uk/content/equal-access-healthcare and made me sit down and seriously consider my own situation regarding healthcare.
I would say I am amongst the more capable of deafblind people, which often goes against me when it comes to support, which as always comes down to a lack of understanding of Usher Syndrome.
Usher Syndrome is the most common cause of congenital deafblindness and we all have daily varying challenges, healthcare is just one of the many!
Starting from the beginning, my beginning:
All appointments and there are lots, are expected to be made either on the telephone, face to face or in writing.
The obvious problems here are lots of people with or without hearing aids cannot use a telephone and would therefore have to rely on somebody else or face to face.
Face to face means getting somewhere possibly twice, to make the appointment and to then attend the appointment at a later date, even though you may need urgent attention. For those like myself mobility is a daily challenge either relying on a cane, guide dog, another person or public transport.
Face to face for those reliant on communicating with sign language would then also have the issue of making themselves understood or need an
interpreter present which is not a service simply at hand.
Then lastly appointments by letter often arrive and cannot be read as not
provided in appropriate formats.
Each of these issues could be dealt with fairly easily with the accessible technology currency available.
The simple text message being the most obvious.
On attending most appointments my experienced is being met by staff who do not consider the needs, simple face to face reaction to allow lipreading would be a good start instead of receptionists chatting amongst themselves or talking to their computer screens.
Fortunately I am able to understand the "take a number and sit in the waiting room" what I cannot do is see my name pop up on a screen in a subtitle like format to know it is my turn and what is more why wouldn't the receptionist notice from my arrival with a Guide dog that I can't see so well so assure me she will alert me when it is my turn rather than me feel anxious waiting
thinking I will miss my turn!
Fortunately for me my GP, if I get my own GP is very good, always looks at me when he speaks and explains things well often using his computer to
allow me to read up on any problem I may have over and above my Usher Syndrome. I am very glad I can speak to him as had I been first language BSL I'd definitely need an interpreter with me.
If I see a different GP, explaining my condition usually takes over my appointment, is exhausting and I often leave having not mentioned much of the very reason I had the appointment.
For me the worse is definitely the prescription. I cannot read anything on a prescription, I have to ask the pharmacist for details on how much medication I need and how often. It is impossible for me to read the information/instructions inside or on any box of medication. Clearly this information is in a box for a reason and my not accessing could mean some sort of danger. I have to ask for help. Many prescriptions provided have days of the week stated behind each pill also, this is not something I even noticed until a friend saw and notified me! Surely this information should be provided in accessible format for all!
For the many hospital appointments and assessments for just about everything there is nothing but stress.
Getting to specialist hospitals is an issue, particularly eye hospitals.
Negotiating public transport is particularly daunting knowing you are having your eyes dilated meaning you won't see much but blur for several hours so reading anything in any format is out of the question.
Specialist hospitals like Moorfield Eye Hospital in London is exactly that and I'm glad I attend there, however, the specialists often forget we patients are not specialists in their field but are definitely specialists in ours!
Moorfield boasts specialists from all over the world which is fantastic but they must understand deafblindness brings additional challenges to that of the blind.
The hospital has underground cubicles which are not particularly private, the lighting is poor and there is lots of hustle and bustle which is very disorientating. Often the specialists will call out instructions to me (ie: look right, look left...) and this is also often in the dark and my eyes are dilated and this in
itself with deafness causes dizziness and disorientation, this is never considered!
The many tests that are carried out in the dark at Moorfield are very
challenging for those who are deaf and completely blind in the dark, there needs to be patience and support not what often feels like the rush to simply get you in and out!
Besides the tests and observations carried out in the dark there is also the discomfort of having the brightest most powerful and most state of the art cameras and torches shined directly in your eyes to enable the best possible images which is fantastic for monitoring condition but incredibly painful and totally disorientating. It all makes me feel physically sick but a necessary evil. My condition is Usher Syndrome, I am registered blind, however neither
describe my eyes - I am night blind, my eyes are incredibly sensitive, I’m also blinded by brightness, and in good light. The good news, if you can call it that is that I do have 5 degrees of central vision "useful" sight in my right eye, whilst the left is patchy and useless.
Safe to say, all factors of an eye appointment are pretty distressing and the best news I can receive is ‘no change this time Molly’ because there is no cure for this condition.
Audiology again is not close to where I live, a train and a bus to get there. The stress here is often the language and gesture used "sit over there" and pointing, I can't see that and where is there? There is little awareness of Usher Syndrome, all correspondence arrives and I cannot read it, no consideration of blindness, just sheer lack of awareness.
What worries me the most here is Usher Syndrome usually starts with
deafness alone and early diagnosis, in my opinion, is important.
My audiology department has known me since I was diagnosed deaf at 18 months old and although my oldest audiologist has always been pleasant her knowledge of Usher Syndrome was not good. One of the newer audiologists was awful, questioning my needs, making my life more difficult, denying me spare ear moulds and often expecting me to attend more regularly not
considering the mobility challenges I face.
I have left both audiology and ophthalmology not understanding what has been said and as I said I am quite a capable person, this is absolutely not acceptable.
For me the answer lies in technology. I'd like my personal records to be available to me on my smartphone, my own personal profile to enable me to raise awareness of my condition, my needs and all considerations.
I'd like all doctor and hospital appointments to be bookable online and for all correspondence to be sent electronically so I can access it myself, is that asking for too much?
I don't ever want to see another paper form I cannot read let alone complete.
If all my medical information were available digitally there would be no need for assessment after assessment, something else that causes unnecessary stress.
Of course there will always be those with deafblindness who need much more help and support that technology cannot change, but for those of us who would benefit and remember Usher Syndrome is the most common cause of congenital deafblindness I say bring on digital healthcare as soon as possible and allow more independence.
Of course I cannot speak for others, however, I believe there will be many like myself, frustrated by the prehistoric system we are made to endure,
particularly when we know technology could make our lives so much easier and less reliant on others.
I say bring on the technology and allow us our independence in healthcare.
