Support after my diagnosis

Who may be involved?

Eye Clinic Liaison Officer (ECLO)

Local and national sight loss organisations

After the appointment that confirms your diagnosis, the optician (also known as an optometrist or ophthalmic optician) or the hospital eye consultant (also known as an ophthalmologist) will be able to decide where your eye care is best delivered. 

That could be through regular monitoring appointments at a local optician’s practice, or in a hospital eye clinic for more complex conditions or if you need to receive regular treatment. They should provide details of treatment options, any follow-up appointments, and tell you how often you need to attend.

Waiting for an appointment

Your hospital eye doctor or optician will tell you how urgently you need to be seen. Waiting times vary depending on the urgency of your case and the availability of resources. 

Your hospital eye department should be able to update you on the waiting list if you contact them. It helps to let them know that you are keen to be seen as soon as possible.

If you’re not happy with the waiting time, you can contact the hospital’s Patient Advice and Liaison Service who can advise you on how to proceed.

Can I ask questions about my condition?

It’s a good idea before appointments, if you’re able to, to prepare any questions you might have in advance (Wales Vision Forum members can help with this) and to let them know of any support needs you have.

If the eye specialist is not able to answer your questions, you can ask if there is someone else to speak to such as a nurse or an Eye Care Liaison Officer (ECLO)

You can ask:

• about your eye condition and how it might develop;
• how to access information about your condition;
• what your treatment options are;
• what can be done of there is no available treatment for your condition;
• about genetic testing and how to access it if needed;
• about practical and emotional support and counselling.

After your appointment, you should get information about when any follow-up is due. If you need regular treatment, you should try to arrange your next appointment before you leave the clinic.

Is there treatment available for my condition?

There are eye conditions that have no current treatment, so they may be able to discuss what that might mean for you, and if there are any research or clinical trials that could be relevant. Even if there is no current treatment, your condition can still be monitored at a high street optician’s practice, so that you can receive support when you’re entitled to it.

How do I follow my treatment plan and get support if I need it?

[something on this?]

What local support is available?

If you were seen by a hospital eye consultant, they should also refer you to an Eye Care Liaison Officer (also known as an ECLO), a specialist who works within the hospital eye clinic who has the time, training and experience to provide holistic support after a diagnosis. Or, if your appointment was with an Optician, they can signpost you to a Wales Vision Forum member who can help. 

In any event, you can search for information, advice and practical and emotional support from WVF members through the Perspectif web portal at any time. One or more of the following should be able to help, depending on your eye condition:

• Macular Society (for eye conditions affecting the macular) 
• Glaucoma UK (for ocular hypertension and glaucoma) 
• Diabetes UK (for diabetic eye conditions)
• Retina UK (for genetic eye conditions) 
• RNIB (for any eye condition)

Other Wales Vision Forum member organisations local to you that can help can be found by selecting your condition from the About Eye Conditions dropdown list on Perspectif.

How can I meet people with the same condition or in a similar situation to mine?

Find a support group at Perspectif.

What might the impact be on my life eg. driving, work, hobbies? Where do I get more information to help me?

[same as in the WGOS section]

What is the Certificate of Vision Impairment Wales (CVI(W)) and what does it mean?

[blurb and link to dummy certificate; list of benefits[?] - THIS IS GIVEN ABOVE - LINK TO IT?]

Why should I be registered as (Severely) Sight Impaired? What would it offer me? 

Inc. VRS [link to next section]

What is the Low Vision Service Wales? How can I access this? 

More information about this service can be found at the LVSW page.

You can find your local LVSW optometrist here: https://perspectif.org.uk/wales-eye-care-service

I would like counselling or emotional support. Where can I get this?

While is possible to get emotional support and counselling from the generic support services (take a look at the NHS curated support network), it may be preferable in the first instance to access services offered by sight loss organisations such as RNIB and Macular Society. Support from organisations that understand the impacts of your particular sight condition may offer greater sensitivity to your needs.

There are also local organisations that could help. You can find something at Perspectif to suit you.

What is Charles Bonnet syndrome and how might it affect me?

When hallucinations happen as a result of sight loss, they are known as Charles Bonnet syndrome (CBS). Charles Bonnet hallucinations are not a sign of mental illness. Visit https://www.macularsociety.org/macular-disease/macular-conditions/charles-bonnet-syndrome/

There is information about Charles Bonnet Syndrome and support at Perspectif's glossary page.

I have changes in my sight between appointments. What should I do?

[contact optom / hospital eye clinic – as elsewhere]