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Macular Society comment on NHS eye health services capacity and demand issues

17 March 2016

The Macular Society comment on the increasing demand on hospital eye services and the risk for patients.

Delays in eye clinics cause sight loss. Wet AMD drugs target the abnormal blood vessels that grow in the retina. The drugs have to be given promptly because they work best on new, immature blood vessels. Once the blood vessels have matured or the macula becomes scarred the drugs do not work as well. The same drugs are now used for people with diabetic macular disease and retinal vein blockages.

There has been and still is, inadequate NHS resource to deal with the demand for these treatments. Repeated surveys and Freedom of Information requests testify to this fact.

We hear of many different reasons why follow up treatment is delayed; shortages of qualified staff, lack of appropriate facilities e.g. clean rooms, basically inadequate levels of commissioning and slowness to use new ways of working e.g. training nurses to deliver injections.

One of the most frustrating aspects of AMD clinic delays is the very fact that, while the pressures are undoubtedly in every area, some still meet the guidelines for follow up.

Some have made use of pharmaceutical industry support to redesign their services. Others have pioneered the use of community optometrists and nurses to help expand capacity. Patients, and patients groups, are baffled by the inability of some departments to follow suit.

A patient recently contacted our helpline for support. He had been diagnosed with wet AMD in one eye in early November but told his visual acuity was too good for treatment being 6.10. A week later his VA had already dropped to 6/18 – below the legal driving limit. However he was told he would not get an injection for four weeks. A week later he was told the same thing. This made him so anxious that after another two weeks he paid for three Avastin injections privately (he does not have medical insurance). There have been further delays readmitting him to the NHS system for follow up Eylea treatment and only his own persistence and the direct support of the Macular Society has ensured he has had his injection. We all realise of course that other people have been pushed down the list as a result. However, the patient’s vision in the affected eye has not recovered and is now considering having to close down his business which involves him driving a public service vehicle; his sight is now too bad for him to keep his licence.

Patients get very frightened and anxious when their appointments are delayed because they know the consequences. Some have been so anxious we have referred them to our counselling service.

Many patients are not aware of how serious delays are or simply accept that delays are inevitable. Because AMD is a progressive disease, and there are several different treatment regimens, patients may not be aware when a delay has caused their vision to deteriorate more than it would have done had the treatment been given at the right time.

It is a tragedy that people lose sight when there is a treatment that will help keep their vision for longer but it is not given in time. Closer auditing and monitoring of follow up intervals may help focus resources on the issue and we support the Royal College’s view on this.