Kaleidoscope

A lot of people have been saying to me, why don't you take someone with you. I have done that over the years, but it is difficult now, especially as I am an older person and my friends get older also, and they have a tendency to die or move away to live with their children. It is one of the facts of old age....

Here is how I have managed over the years...
When J was alive, he used to come with me, but when he died, my best friend came with me, but then she has to care for her husband now, she cannot leave him for that length of time, so she's not able to do that anymore.

What I did do, after J died, was ask the eye hospital for outpatient support to be booked. You can book an outpatient interpreter.. .but for each and every appointment I had booked outpatient interpreter support no one turned up. I was given the option of going ahead anyway or changing my appointment for another day., but since it was a long distance away, I opted for going ahead anyway. On those occasions 15 years ago I was seeing young doctors gaining experience, all of who were generally very empathic, very helpful, and gave me all the time I needed...

It is more recently, that is since Covid and lockdowns that the doctors have changed. The eye hospital and the main hospital has closed down because a new building was built and it fully opened in 2022 I think it was. There were none of those trainee eye doctors anymore, just the one main specialist. A lot has changed, a completely new team of staff. There is no evidence I can see of them using trainee eye doctors anymore, maybe they have a different system of training, although there was one person sitting in with the person who is seeing to me in each different room. Since a year ago, my last appointment, there is now a completely different new team across the whole of the floor...

In the old hospital, they were still using trolleys with the patient's records in buff coloured folders. I was thinking this morning about that and the fact that the records are digital now. No more buff coloured folders. On the front of my folder, I had made a note that the hospital had sellotaped on my folder, which explained I was deaf and how to best communicate with me. So everyone knew straightaway who handled that folder that I was deaf and how to help me. It was a little card that I made many many years ago (2004?) that I used to hand out to people as a bit of a humorous thing about my deafness and to break the ice about it. It had a some pictures on it, that I had drawn. That card served its purpose and worked very well in many situations. As far as I recall, those files used to travel from hospital to hospital depending where your appointments were.

So in the new eye hospital, there is no card because there are no folders anymore. Obviously, the contents of the buff coloured folders has been transferred, to the computers. But has the transfer of those file contents been selective?

Is there any information at all on the computers at the new eye hospital or any NHS computer for that matter about my deafness and my cochlear implant and my hearing needs. There should be an alert or a marker of some sort for when someone opens up the computer that it's the first thing they see that the person is profoundly deaf and has a cochlear implant and has hearing needs, or any other disability for that matter.

This is how I began my letter of concern to PALS or PACT as it is now called.

I expressed my concerns about the appointment as regards hearing and deafness issues, and the specific nurse and specialist doctor. I also praised one of the younger Doctor's who moved his testing equipment aside so I could lipread further instructions from him and then he moved his equipment back. This simple accommodation to my needs I explained, literally took a few extra seconds and made my experience far more comfortable.

Then I made a few suggestions for staff training and improvement, especially as regards hearing impaired people.

I read and reread my letter a few times and decided it was a pretty good advocacy letter. I feel happier that I have done at least this.


I need lunch now. I have done a lot this morning. I want everything to return back to normal.  

Just a creative for today, a kaleidoscope of my bed cover again. And hopefully later today I can do some video editing....

Take care

Have a good day.