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See The Need

Two thirds of people diagnosed with visual impairment said they had never received emotional nor psychological support. I think this is appalling considering how badly we are affected emotionally by losing a significant amount of our sight. No-one should feel like they are on their own dealing with this, and more needs to be done.

Getting the right emotional support can make a huge difference and can improve people’s mental health as well as helping improve their physical health. I know what it’s like going through this adjustment all alone, trying to come to terms with what has happened. I didn’t have a clue what I should do when first losing vision and didn’t know of anyone to turn to that could help me.

The other day I came across this message in Twitter:
Action4Blind People ‏@actionforblind Oct 14
#SightLoss advisers provide practical & emotional support to people newly diagnosed – Do you #SeeTheNeed

This is the ‘See The Need’ Campaign which you can take a look at See The Need.

Its message is very simple.

Only one in three UK eye departments have access to a sight loss adviser to help people who are going blind. If you can see the need for a sight loss adviser in every eye department by 2019, demand change. Add your name to their petition.

This campaign is supported by celebrities and is trying to bring about change.

“I think it’s shocking in this day and age there aren’t the people to support people who are losing their sight.” Ross Kemp

It’s a message I totally agree with and being visually impaired myself following from my retinal detachments, yes two of them over 5 years, I have experienced the void many of us find after discovering we will not recover our lost vision. Let me explain why it is absolutely crucial that there are people in hospitals ready to help those discovering they will be visually impaired for life.

There can be no doubts that it is an incredible shock following your diagnosis when you are told that treatment will only help to maintain your remaining vision, or that there is no further treatment to help you at all. Your eye specialist may even have had to warn you that your eye problem could get worse, as some eye conditions do. The emotional toil will be significant, made worse in my experience by the coldness of our eye consultants.

When you first learnt that your vision or part of it has gone forever your first thoughts may have been “no, not me this cannot be happening to me!” It is not uncommon to feel tearful, restless and terrified about your future.

When I underwent my first retinal detachment operation and the subsequent vision loss that resulted, my life changed significantly. It forced me to change professions, give up on my business and brought nothing but instability to my life. Although I still had vision, the amount I had lost, as well as the health issues that followed changed so much for me. Everything was made so much harder by the fact that I had no one advising me, supporting me who had either personal experience or knowledge of what happens when losing sight and how to deal with it.

At that time I was unaware of the charities out there available to us. Nobody had told me they existed and in truth I didn’t think to look. Maybe if I had things would have worked out differently. In a way I’m glad they didn’t because I love my life and the jobs I now do, which I wouldn’t be doing if these changes hadn’t happened. Yet it is incredible to think, the number of times I was in hospital because of eye problems, seeing all sort of doctors, not once did I find out about any support available. Alas the doctors obviously didn’t feel it important enough for them to tell me what was available. I admit to finding this disgraceful.

I have no doubts many of you could testify to how your Doctors and Consultants seem completely clueless to your emotional predicaments and did nothing to guide you or provide you with information about what you can do. Clinical they may be, caring well that is questionable.

I will use my last visit to my original consultant as an example. He operated on me three times over 5 years. I eventually asked for a second opinion and am now under a new consultant.

As I left his surgery the very last time, his last words were echoing in my head. ‘For 50 years you have had two eyes to use, now you have to get used to having just one.’ To say I was shell shocked by his words as well as his coldness is something of an understatement. I took a seat just outside of his door to mull over the scant information I had gleaned and realised that my life would never be quite the same again. He offered me no advice, made no suggestions, and didn’t point me in the direction of any form of support. I felt alone and lost. I know many of you have faced this type of coldness in your diagnosis. I couldn’t believe this had happened again. This time it having taken the remaining vision in my right eye, and causing so many other health issues .

I worked myself up into such a state where my emotions got the better of me and I burst into tears. When I look back I realise that if I had had some descent information and the chance to speak to someone with experience of vision loss, I would have been much better prepared to deal with my situation, but nobody offered me any guidance what so ever.

My consultant simply left me feeling disabled, useless and could have thrown me into a depression if I’d allowed it to. For seven years much of my life had been spent in hospital queues, having eye tests, eye drops, dye tests, microscopes, photographs and waiting around – loads of waiting around! Now it seemed I had been hung out to dry abandoned by the medical world. He completely ignored the emotional consequences sight loss was having and implied there was nothing more, clinically, that could be done. He offered no empathy, information or counselling.

As I was leaving the eye clinic I saw a poster. I went closer to be able to see it properly. It introduced the Eye Clinic Liaison Officer (ECLO) available in the hospital who was there to provide information about eye conditions and services plus emotional support. What a key person this must be in every eye department.

I met a lady 20 minutes later and she was able to provide me with ‘life changing information.’ I was no longer alone on my journey. This as the See the Need Campaign shows is a must have for every eye hospital.

We do not know the steps to take when first diagnosed with visual impairment, and have no idea where to get help and having advisers on hand in every hospital with an eye department is crucial . They’re there to give a helping hand. In addition every doctor or consultant should be forced to provide some information including phone numbers of groups and charities that can help together with information about rights and entitlements, about adaptations which can help with many of the daily tasks with which people will now struggle. A lot of high-quality information does exist: alas a majority of those diagnosed with a visual impairment seem not to get access to it.

Have you been through a similar situation? Comment in Facebook I’d love to hear your story.

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About the author: Larry Lewis
My name is Larry Lewis, Health & Wellness Life Coach, Founder of Healthy Lifestyles Living, contributor to the Huffington Post, recently featured in the Sunday Mail Newspaper and somebody who went from being an owner of a chain of gyms and fitness fanatic, to a visually impaired overweight and incredibly sick person. Read about my illness to wellness story.