How to tackle treatment delays

The Macular Society’s Advice and Information Service is here to help if you are experiencing delays in sight-saving treatment.

Any delays to injections, for patients with wet age-related macular degeneration (AMD) and other macular conditions such as diabetic macular oedema (DMO), could lead to unnecessary sight loss. It is therefore vital that treatment is received on a regular, and timely, basis.

So, what should you do if you are experiencing delays? Kevin Franklin, the Advice and Information Service manager, who receives calls from people waiting for treatment, has shared his top tips for timely injections.

Determine the reason for the delay

Ophthalmology is the busiest outpatient service in the NHS and patients do occasionally experience delays to treatment. However, there can be legitimate reasons for any delays, including extensions to treatment regimens.

Kevin said: “If you feel you are waiting longer for treatment, the first thing we would advise you to do is talk to your ophthalmologist. They can tell you how often you should be expecting to wait between injections. If you are responding well to treatment your ophthalmologist may be happy for you to go for longer periods without treatment so a delay may not always be a cause for concern.”

Ring your ophthalmologist

“Many people start by ringing the appointments clerk,” said Kevin,

“However, they may not appreciate the urgency of the situation.

“Our advice is always to try ringing your ophthalmologist who will understand the importance of your timely treatment.”

Kevin advised that this can usually be done this via their secretary.

However, if you are waiting for a macular hole or cataract procedure, it may be that the eye clinic is operating according to guidelines, or according to their clinical based decision. If you call your ophthalmologist and determine that you are experiencing a delay, please contact the Macular Society for support.

Find out if your hospital has an Eye Clinic Liaison Officer (ECLO)

“Having an Eye Clinic Liaison Officer (ECLO) is a really effective way for eye clinics to help patients,” said Kevin.

“An ECLO works closely with the eye clinic and the staff there and some external services such as the Sensory Team to help support patients with their sight loss.

“Quite often, eye clinic staff may be unable to answer questions and provide emotional support to someone who has just been diagnosed. This is where the ECLO can step in and help.

“They can also help you with your treatment schedule, when you have an appointment and liaise with the eye clinic to help get an appointment when you need one.”

Unfortunately, not every eye clinic has an ECLO. However it is important for you to find out if there is one at your eye clinic, and if so, what are their contact details and working hours.

Kevin added: “Before ringing, it is important to have your hospital number if possible, however, sometimes your date of birth will suffice. It is also useful to have the date of your last injection, a note of how far apart your injections should be, and therefore the date that your next injection is due.”

Contact the Macular Society’s Advice and Information Service

If these routes do not result in a timely appointment, Kevin’s advice is to ring our Advice and Information Service. The Advice and Information team has an advocacy service, which can help

Our Advocacy Service has been set up to help people with macular disease who are finding it difficult to access the treatment or care that they are entitled to. We also help friends, family and carers acting on behalf of people with macular disease. 

If you are calling the service we will need your full name, address, contact telephone number, date of birth, hospital number (if possible), plus details of the concern, including the relevant dates.     

We will also need to know who you have already contacted and their responses. It is useful to know the reason for the delay, if this has been given, for example staffing shortages or an incorrect referral.

Contact the Advice and Information Service on 0300 3030 111.

Advice for someone newly diagnosed with wet AMD

“If you are newly diagnosed with wet AMD and are waiting for your first appointment, it is important to know how quickly this should be received,” said Kevin.

The National Institute for Health and Care Excellence (NICE) Clinical Guideline recommends that people with suspected wet AMD should be referred to a retinal specialist immediately. If treatment is needed, it should be given within 14 days of the initial referral. Optometrists should refer you directly to a retinal specialist at a hospital and not via a GP.

If you haven’t heard from the eye clinic within the first few days after referral, then we would recommend giving the macular clinic a ring to check if they have received your referral. You can then establish if an appointment has been scheduled, and if there are going to be any delays.

If the macular clinic has not received your referral, then contact the person that has referred you in the first instance e.g. your optician as they may need to follow it up.

For any further questions or support contact our Advice and Information Service, which is open Monday to Friday 9am to 5pm on 0300 3030 111 or email help@macularsociety.org

If you have faced or are facing delays and are willing to share your experiences we'd love to hear from you at stories@macularsociety.org