Delayed glaucoma appointments: IGA guidance

Hospital eye clinics across the UK have never been so busy. Increasing numbers of our members are facing delayed or cancelled appointments, which is understandably causing a good deal of worry, so we have put this guidance together to help anyone having problems with appointments. It is aimed at people new to the system as well as those familiar with eye clinics.

• Hospitals each have their own way of booking appointments, so when you go, find out how their process works. It may be possible to book the next appointment after being seen in clinic, or you may have to wait for a letter to notify you of your next appointment, or you may be asked to ring the hospital at a specified date, or to book online. You are entitled to receive any communications from the hospital or GP in a format that is accessible to you, so if you have a degree of sight loss, you may want to ask for any letters to be sent in large print etc., and to ask at the clinic that they make a note of this on your record.
• Make a note of the name of your consultant or doctor, the time and place of your next visit, what will happen at the next appointment and who you will see, and whether you will need to avoid driving to the appointment due to the types of test or treatment (for example you may be given dilating or anaesthetic eye drops).
• At the end of your appointment, ask the consultant when you should next attend, and to tell you the maximum time between appointments (so for example “ideally attend in six months but not longer than nine months”). This will then help you to gauge the urgency of the appointment and contact the hospital if you are approaching the deadline without a booking. You will then be able to quote the doctor’s recommendation when calling for an appointment.
• Experience tells us that you will need to be both persistent and politely assertive. Once you’ve been put through to the right person, we advise you tell them that you would prefer to stay on the line to wait for an appointment time, rather than them calling you back. Politely stress the importance of the appointment.
• If you specifically need to see your consultant at the appointment – for example if you have received conflicting information or if you need to discuss glaucoma issues which are troubling you – ask specifically to see the glaucoma consultant at this appointment.
• Appointment intervals vary depending on how your glaucoma is responding to treatment. If your glaucoma is stable, ongoing monitoring is usually every six months to a year, and an annual visual field test is also fairly standard, but be advised by your ophthalmologist as to when you should next attend. The National Council for Clinical Excellence – NICE –  issued new glaucoma guidelines in November 2017, and these give details of standard treatment schedules. The guidelines can be found online at https://www.nice.org.uk/guidance/ng81/chapter/Recommendations#standard-practice-for-all-assessments  But please remember that this is a general guide: everyone’s circumstances are different, so please do not worry if your doctor calls you back more or less frequently than the guidelines suggest.

Who to contact if you have problems with appointments

If your appointment is cancelled, if you are given a date later than the one recommended by your eye doctor, or if you are concerned about your glaucoma, we recommend you try these contacts:

1. Call the central appointments department if there is one; if not call the main hospital number and ask to be put through to the ‘eye secretary’.
2. If you are still having difficulties getting a suitable appointment, ask to speak to your consultant’s secretary. Give the name of your consultant, and tell the secretary what your consultant said about when you should be seen.
3. If you are still having difficulties, an Eye Clinic Liaison Officer (ECLO) may be able to help. An increasing number of hospitals now have ECLOs, who work closely with eye clinic staff and whose role is to give extra support to patients about all aspects of eye health care and sight loss. In some clinics ECLOs may be known as Sight Loss Advisors, or in Scotland as Vision Support Officers. Some ECLOs use appointment systems to see patients and others use an ad hoc drop in system; many can also provide help over the phone. It is worth asking for the ECLOs contact details at your next appointment, but they can also be contacted by calling the hospital’s main number and asking to speak to the Eye Clinic Liaison Officer.
4. If you still have problems, try the hospital’s Patient Advice and Liaison Service (PALS).

Every hospital trust should have a PALS service that provides impartial advice and assistance in answering questions and resolving concerns that patients, their relatives, friends and carers might have accessing the NHS services. The service can be contacted via the main hospital switchboard, or online via NHS choices or a general internet search for ‘PALS’. There should be PALS leaflets available from reception, and many hospitals also have staffed PALS offices on site, so you may be able to drop in and see someone in person.

5. If you have tried all these routes without luck, you may need to consider making a formal complaint.

The PALS service will be able to tell you how to complain to the hospital.

To complain about opticians, GPs or other primary care providers, write to NHS England,
PO Box 16738, Redditch B97 9PT, email england.contactus@nhs.net, putting ‘For the attention of the complaints team’ in the subject line; or telephone: 0300 311 22 33.

Some IGA members have also raised the issue of capacity in eye health care with their MP.

Remember, you can always call our Glaucoma Helpline on 01233 64 81 70 for advice, support and information.

The IGA is the charity for people affected by glaucoma. www.glaucoma-association.com