Verbatim Stories – Outcomes

Verbatim 1

 

Ok, well so i was born obviously with OC1 Albinism, so it affects everything, so when i was born, diagnosed at six months old i was literally always went to the health clinic, i was there every six months until i was sixteen.

 

Now, got to be honest the whole way through personally for me i don’t have anything bad to say its been a really positive experience.  I was brought up pretty much in the eye clinic and by the time i was six and seven it was just a normal thing to do, i went through nursery, through reception, year one.  The practitioners there were always respectful to me the whole way through.  Like the options i had, for care and treatment was fantastic, the amount of glasses i was offered, i had bifocals and i can’t fault the amount of options i had to try and improve my quality of life.  

 

The only side when i was young that was missing would be missing the emotional side, i never really felt in the clinic i had anyone really to talk to as such.  I was always treated like an adult and i didn’t ever feel like i had a visual impairment, i was treated so spot on and perfectly, but it was never anyone to turn to, there was nobody i could ask for information to ask more questions and such, and although it was a really positive experience and smooth looking back when i kind of got to my teens it would have been a really helpful area to have.  

 

As i grew olders i’ve sort of had various issues with my eyes, and for the last four years i’ve had a problem that nobody’s been able to solve and that’s nobody’s fault that life, you can know as much as you can know and i can’t always find the answer to everything,  can’t expect everyone to know the answer to everything and i don’t, especially with eyes.

 

I’ve been put on medication quite recently and i’ve been given like a six month course of sort of, i’ve researched them and found out there antibiotics and eye drops and i don’t even really understand the problem with my eyes to know why i’m taking this and i haven’t really taken it at all because i’m really reluctant to take it because i don’t know and that concerns me to take medication that i don’t know 100% what it’s for and i don’t 100% know what’s wrong with my eyes.

 

But now i’ve recently heard that theres and introduction of something called an ECLO (Eye Care Liaison Officer) that you’ll be able to ask more questions and i mean like for issues i’ve had like this, that would be fantastic if that is an option.  Because really that’s the biggest problem i’ve had, because not understanding is a good thing, because i understand optometrists are seeing hundreds of people a day but to be able to turn to somebody and have that would be a big thing. i mean especially when i was growing up i don’t think it now but i had a lot of troubles and the emotional side would have been a really good aspect to cover, i’m just really happy to hear that’s being recognized for sort of the first time, i’m really happy to hear that.

 

Verbatim 2  

 

I’ve been registered blind from a very early age, my condition, achromatopsia, is from birth.  So i don’t really remember my diagnosis or the process that my parents went through to get my diagnosis.  I’ve heard stories that it wasn’t easy, that they, my parents weren’t taken seriously to begin with, they weren’t really believed and that it was very difficult for them.  They also said at times they didn’t feel there was much support for them, Visual Impairment doesn’t just affect me you know, it affects my whole family, particularly at that young age.

 

So, i’ve heard those stories from other Visually Impaired people i know i’ve heard, dare i say it horror stories about what’s happened to them in the eye clinics.  But i guess i’m quite lucky, to my knowledge when we met Margaret Woodhouse, all of the pieces of the puzzle came together and so all my memories of going to the eye clinic, they’re all quite possitive because of her.  

 

I know a lot of kids would have dreaded having to go and get their eyes tested and at times quite intrusive tests but i don’t think i minded all that much and i still don’t, i’m lucky, i’m aware of that.

 

Verbatim 3

 

So I was diagnosed as Registered Blind, I must have been about 18 months old and from what i can remember throughout my life, my experience of eye clinic has always been really positive. i’ve always had the same consultant, all the nurses have always been really helpful and my mother’s always taken me, so it’s always been a comfortable experience for me and something i remember quite fondly.  But my mother always tells me that it wasn’t always that way, when i was diagnosed at 18 months old, i think the first consultant my parents met with was quite rude.

 

The quote that always sticks with me is that my mother was told that,

he will never lead a normal life, he will have to go to a special school, he’ll never be able to kick a ball and he’ll never be able to go outside and play with the boys.

 

Now i think when your child is being diagnosed with something, you know, that’s quite serious, that’s not what you want to be told, you want to be told in a confident way, you want to be told that it’s not going to affect their life in a negative way, they’re going to get through it and lead a full life.  But that’s not what my parents were told, they were told the complete opposite and i think it all comes down to the type of people my parents are, especially my mother.  It would have been quite easy for her to take that information and believe it and raise me that way, thinking i’m completely different that i’m going to be secluded the rest of my life.  But because she’s not that person, she said to the consultant that basically i never want to see you again, i want to see another consultant and that exactly what happened, i don’t think we ever saw him again.  And we’ve been seeing my other consultant, Dr Laws, in Neath, Port Talbot Hospital ever since.  And he’s just a great consultant and its been such a positive experience for me and my family.  

 

But i do always think back to that time and how scared my parents must have been and how, what that one person said could have actually influenced my life so much but my parents were stronger and knew more, you know than that person did.

 

Verbatim 4

Ok, i suppose i look at eye health and i look at the NHS and one of the things i think of is, is that it saved my life.  I was born blind i had no vision what so ever and had a fantastic consultant who restored the sight in my one eye and you know a limited level in the other.  But that transformed my life, having that opportunity to having that excellent service there.   

 

The one thing i will say in Wales is Emergency Eye Care is first class, it is superb but there are still concerns, I still have concerns around waiting to long for clinic for example, around Glaucoma which i know have with cancelled appointments and the understanding of making sure your Glaucoma treatment, that you continue to take drops appropriately to keep what vision we have.  

 

The other thing I would reflect on is accessible information, there’s been very little opportunities in my life within any Health department where i’ve had any information in my prefered format, that is until recently where the University Hospital of Wales Eye Clinic now provide a letter, an appointment letter to me in my prefered format of large print.  It would be nice to have the option of having reminders around text and emails, which again is a format which i now prefer more than printed information, that wouldn’t be accessible for everybody but it would be nice to have that choice of how we receive information.  

 

There’s still work that needs to be done, i must say i was recently admitted to hospital after surgery and the staff in the ward were very aware of Sight Loss and it was evident that they’d had awareness training and were very competent and very understanding but there are so many examples, so many experiences of reception, ward staff, doctors that are not fully aware of or do not understand Sight Loss and not able to guide or understand some of the basics around Sight Loss.  So there is still a need an outcome for Health Boards to continue to provide awareness training.