Dealing with a diagnosis

When you step out of the consultant’s office after being diagnosed with macular disease, it can feel quite overwhelming.

Many people often can't quite remember what was said, and aren’t sure what you’re supposed to do if your eyesight gets worse. Our helpline team is here to make things clearer.

Kevin Franklin, advice and information service manager, said: “The emotion and pressure of being in a doctor’s office can make you forget the questions you meant to ask. So write them down before you go, and don’t leave until you understand the answers.

What does that mean?

“Clinical people are used to talking clinically. But often, just asking ‘what does that mean?’ reminds them that they’re talking to a person, and they’ll then explain more simply.”

Five top tips to get the most from your appointment

1. Ask questions – about your condition, treatment options, research, and anything you don’t understand. Remember, there’s no such thing as a silly question when it comes to your health.

2. Take someone with you – to make notes, ask for explanations, and help you absorb all the information.

3. Take your time – better to take a few extra minutes than to forget to ask something. If your doctor doesn’t have time to answer every question there and then, you may be able to ring them later for clarification.

4. Make notes – there’s a lot to take in and probably some unfamiliar words, so get it in writing.

5. Don’t panic – even if there’s no treatment, it doesn’t necessarily mean that nothing can be done.

Be sure to ask about things you can do to stay well and about any help you could get to adapt to sight loss.

What happens if my treatment changes?

Our helpline team gets a lot of calls from people who want to know why their injection schedule has changed.

If your next appointment is later than you expected, the first step is to call the ophthalmologist (or their secretary) and check why.

Kevin said: “Often it’s good news because the earlier injections have stabilised the bleed or leak, so you don’t need the appointment. Depending on your treatment regime, your doctor may choose to extend the time between injections if they’re working well.”

In some rare cases, clinics are genuinely too busy to see patients as quickly as needed. In that situation, our team will step in and speak to the clinic on your behalf.

Kevin said: “Sometimes clinics run additional weekend clinics or mobile units to get through the backlog.”

Get in touch

If you have questions about your diagnosis or are worried about your treatment, call our helpline on 0300 3030 111