Joy Fernandes talks about how a sensory team in Manchester came to her rescue when struggling to deal with her sight loss.
I had been concerned about my night vision for a long time and over the years I'd visited various opticians. However, I was consistently told that my vision was fine so I thought I was being over anxious about my driving.
Something's not right
About 10 or 15 years I was really struggling and becoming increasingly clumsy. I had long since stopped driving at night as I just couldn't cope, but was now having problems during the day as well. So I went back to the opticians and told them that something was definitely not right.
I was given a field of vision test for the first time. I was then referred to the hospital where I was diagnosed with retinal dystrophy, which means reduced or deteriorating vision in both eyes. I was registered as severely sight impaired.
I had spent years denying my own personal experience in the face of professionals, who said I was fine and I'm still dealing with the effects of that.
Dealing with my diagnosis
As I emerged from the process of diagnosis and certification, which left me bewildered and shocked, the sensory provision team at Manchester City Council, along with my GP practice acted calmly but firmly to support me.
From the first assessment, shortly after registration, things began to change. It wasn't just the equipment issued, which has been so helpful, it was the fact of a "real" person being in my house, asking me questions and filling out forms.
So I began a process of acknowledging and recognising my sight loss and it's, until now, detrimental effects on my life - the unnoticed adjustments, the excuses and the tiredness.
Invaluable support
There has been a mountain of paperwork, most of it simple enough and some not. Once again the team stepped in. When a particular organisation denied receiving my forms, a lady from my safety net called them on my behalf and miraculously the documents were found and processed.
I simply could not begin to understand or face the disability living allowance forms.
Support came in the form of a linkworker. Gently, she asked me questions, wrote things down and used post-it notes to highlight where other people could make input and where I needed to sign. She broke it down into bits that I could manage and together we made a successful application.
Taking control
I have Aspergers syndrome and have a fear of being lost in unfamiliar or busy places. This fear was becoming increasingly difficult to manage and I was increasingly 'choosing' to stay home I asked for a referral to a mobility officer.
I did not know if this was what I needed but I thought I would give it a try. An assessment was carried out - I was still a bit dubious, but it's very hard, or just arrogant, to argue with someone with more than 20 years' of experience.
It's not just the cane training, which has already saved me from a couple of minor accidents, but because this training takes place over several months, I've learned lots of ways to manage things that are really common sense. The team enabled me to begin to see that I could continue in my work and make a real contribution to the wider community.
Recognising my sight loss
The registration process and the sensory team have helped me to recognise my sight loss. I have been given the skills to better manage the vision I have, and, also, to continue that management process as my vision continues to deteriorate.
I now have a greatly increased confidence, that while life may continue to be frustrating and challenging, if I take a breath and think about what I've learned then I can deal with it; knowing also, that if at any point I find I can't, then my safety net will be there to help me find solutions.
How the sensory team helped me
I met the Sensory Provision Team in the Directorate for Adults at Manchester City Council through my rehabilitation officer, Catherine Tynan.
She got me to list the things I was finding challenging and then we worked together to find solutions.
After an assessment by Catherine I was offered, and persuaded to take up, a course of long cane training.
Catherine gave me back some independence and confidence and she checked that I was receiving counselling. I really felt like she was an instrumental part of me getting back on my feet, dusting myself down and picking up the threads of my life again.
I have direct phone numbers for Catherine and the team, I can call or text and someone will invariably answer. I can ask for further route training, equipment and advice as I need it.
Article originally published in NB magazine March 2013.