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Macular disease is the biggest cause of sight loss in the UK and age-related macular degeneration, or AMD, is the most common type of the condition[i]. There are two forms of AMD: dry and wet. Currently wet AMD is the only form of the condition which is treatable[ii].

Pre-diagnosis: Wet AMD
Approximately 39,800 people in the UK develop wet AMD each year[iii]. The route to diagnosis often begins with an individual noticing changes in their vision and making an appointment with an optician or a GP. In some cases, first symptoms are detected during a routine eye check-up with an ophthalmologist if the individual is already treated for another eye condition, or if they are diagnosed with wet AMD in one eye already.

"As you begin your journey with wet AMD, you will work with a team of healthcare professionals."

As you begin your journey with wet AMD, you will work with a team of healthcare professionals who will each support you in different ways on your treatment path. Below, you will find a short description of the roles and responsibilities of the healthcare professionals that you are likely to come across. If you have been diagnosed with wet AMD, it is important to make the most of the time you get with your eye care team, so take this quick questionnaire and download your appointment guide.

General practitioner (GP)
Most patients first consult an optometrist/ophthalmic optician or their GP about their symptoms[iv]. GPs have a broad knowledge across all types of medical conditions and can aid initial conversations, but they should refer you directly to an eye clinic for further examination if they suspect a severe eye condition such as wet AMD[v].

Optometrist/ophthalmic optician
Optometrists, or ophthalmic opticians, are technical practitioners who examine eyes for visual defects and prescribe glasses and contact lenses. Many are employed at optician stores in the high street, although some work at hospital eye clinics and may have additional responsibilities caring for people with stable long-term eye conditions[vi]. As with your GP, if your optometrist suspects wet AMD, they should refer you to a retinal specialist at the hospital directly.

Diagnosis: Wet AMD
Following initial conversations with a GP or  optometrist/ophthalmic optician, you should be referred to a retinal specialist directly and, if applicable, receive treatment within two weeks[v].

Ophthalmologist (retina specialist)
Ophthalmologists are medically trained doctors whose responsibilities include examining, diagnosing, treating diseases and injuries, and practicing surgical procedures on the eye[vi].They have a choice of sub-specialising in a special area of eye care. Retina specialists are ophthalmologists who have specialised in diseases of the retina and macula at the back of the eye, and the vitreous body of the eye[vii]. They are the individual who will provide you with a diagnosis.

To diagnose wet AMD, your retinal specialist may perform an optical coherence tomography (OCT) scan or fluorescein dye angiography exam[viii]. To learn more about these tests, click here.

Eye clinic liaison officer (ECLO)
ECLOs work closely together with hospital medical staff and are an important link between healthcare and social services. They offer dedicated individual care and support to those affected by wet AMD and other eye conditions, providing information and tips on treatment and disease management after your diagnosis. They can also support you by making referrals on your behalf or putting you in touch with relevant support services[ix].

ECLOs may not be available at all eye clinics and during this exceptional time, all their work is being carried out remotely. Ask the receptionist at your eye clinic to see whether they employ any ECLOs, and if so, how you can get in touch with them.

Receptionist
Eye clinic receptionists play an integral role in enabling smooth and ongoing treatment. They help to book in the next appointment and are important ‘front-of-house’ communicators, who can help to alleviate fears ahead of appointments and support with key information.

Treatment: Wet AMD
Wet AMD can develop quickly and worsen over time, but its progression can be managed with effective, consistent treatment[ii] and regular monitoring of disease activity. You may be offered anti-VEGF treatment – a medicine designed to reduce new blood vessel growth in the back of the eye.

Ophthalmologist (retina specialist)
In the treatment phase, your retina specialist will perform regular eye tests to monitor changes in your vision, and they are usually in charge of performing your anti-VEGF treatment[vii].

Nurse
Nurses play a vital role in supporting your retinal specialist and enabling a seamless and comfortable treatment experience. They will check your details with you and, depending on which treatment you are on, provide you with anaesthetic eye drops. After these have had sufficient time to take effect, a healthcare professional will perform the treatment.

Additional services

Dispensing optician
Unlike an ophthalmologist or an optometrist, a dispensing optician is not trained to test vision. Rather, their role is to dispense and fit glasses and other optical aids, working from the prescriptions given by optometrists and ophthalmologists[x].

Wet AMD affects different people in different ways, and the symptoms can also change over time. This is why different people may need different optical aids, depending on the severity of their symptoms and stage of their disease. Some may find special glasses with high magnification and built-in prisms helpful.

At-home care
There are a number of organisations in the UK that offer home visits for people living with vision loss. These care plans are built around the needs of the individual and the support is most commonly provided by registered nurses. Please note, however, that these services may currently be affected.

For further information on the local services offered in your area, please contact Macular Society by visiting macularsociety.org or by calling them on 0300 3030 111 for support and information.

Emotional support
Coming to terms with your AMD diagnosis and learning to live with changing vision can feel scary and overwhelming. Remember that there are a number of support groups (including online groups) that can help to provide emotional support, tools and resources to help you take care of your emotional wellbeing. These services are available through the NHS and the private sector, as well as a number of national and local non-profit organisations.

Some useful contacts and resources include:

Related Articles

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[i] Quartilho, A et al. Leading causes of certifiable visual loss in England and Wales during the year ending 31 March 2013. Eye vol. 30(4), 602-607. 2016.

[ii] Macular Society. Treatments. Available at: https://www.macularsociety.org/diagnosis-treatment/treatments/. Last accessed January 2021.

[iii] Owen CG, Jarrar Z, Wormald R, et al. The estimated prevalence and incidence of late stage age related macular degeneration in the UK. Br J Ophthalmol 2012;96:752-756.

[iv] RNIB. Don’t lose sight! Don’t delay! Perspectives on wet age-related macular degeneration (wet AMD) patient journey: RNIB campaign report. Available at: https://www.rnib.org.uk/sites/default/files/Don%27t%20lose%20sight%20don%27t%20delay%20Campaign%20report.pdf. Last accessed January 2021.

[v] Macular Society. Wet age-related macular degeneration. Available at: https://www.macularsociety.org/macular-disease/macular-conditions/wet-age-related-macular-degeneration/. Last accessed January 2021.

[vi] The Royal College of Ophthalmologists. What is an Ophthalmologist? Available at: https://www.rcophth.ac.uk/about/what-is-ophthalmology/what-is-an-ophthalmologist/. Last accessed January 2021.

[vii] American Society of Retina Specialists. What is a Retina Specialist? Available at: https://www.asrs.org/patients/what-is-a-retina-specialist. Last accessed January 2021.

[viii] Mayo Clinic. Wet Macular Degeneration – Diagnosis. Available at: https://www.mayoclinic.org/diseases-conditions/wet-macular-degeneration/diagnosis-treatment/drc-20351113 Last accessed January 2021.

[ix] RNIB. Eye Clinic Liaison Officers (ECLOs). Available at: https://www.rnib.org.uk/advice/eye-health/who-does-what/eclo. Last accessed January 2021.

[x] NHS. Visiting an optician. Available at: https://www.nhs.uk/using-the-nhs/nhs-services/opticians/visiting-an-optician/. Last accessed January 2021.

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