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Report says U.K. patients with AMD made to wait too long for treatment
The Macular Disease Society issues a call for action from government to remedy the problem.
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Patients with wet age-related macular degeneration are “losing their sight as they sit in waiting rooms” in the United Kingdom, according to the Macular Disease Society, a self-help organization for people with macular diseases.
Too few professionals in the U.K. National Health Service “understand the importance of immediate treatment for wet macular disease to stop the condition getting worse,” said Tom Bremridge, the chief executive officer of the society, in a press release.
The Macular Disease Society asked the U.K. government in November to remove barriers to treatment. In a report he presented, Mr. Bremridge noted that only half the patients entering an National Health Service (NHS) referral pathway for AMD reach a specialist treatment center in time to save their vision.
“There are 3 months from bleed to bust,” Mr. Bremridge said in the release. “If the patient does not receive laser treatment within this time frame, it is often too late. … Sadly, we are finding from our help line that people are being given appointments up to 17 weeks after the first symptoms are discovered.”
Referrals lagging
Treatment may be delayed for as many as 3,000 patients yearly in the United Kingdom, simply because patients are not being referred to an eye center specializing in photodynamic therapy, Mr. Bremridge said.
“Instead, they are passed around the system between optometrists, general practitioners (who may not know about the need for an urgent referral direct to a retinal specialist) and general ophthalmologists at the local hospital (who know about AMD but do not have the expertise and equipment to treat it themselves),” he said.
There are currently 50 centers in the U.K. specializing in photodynamic therapy (PDT). Guidelines from the National Institute for Clinical Excellence “recognize the benefits of PDT and spell out which patients should receive treatment,” he said.
People who call the Macular Disease Society helpline tend to be well informed about the disease because of their relatives and the Internet, are often hopeful but yet “grasp for a treatment,” Mr. Bremridge said.
He blamed a “lack of accountability” in the NHS as the main reason for patient treatment delays. Little government pressure on those administering the programs has meant a lax compliance on the part of the administrators, he said. Mr. Bremridge called on anyone involved in providing AMD services to take responsibility. He suggested specialist retinal clinics, general hospital ophthalmologists and optometrists determine whether optometrists can refer a patient to the specialist directly, that the NHS implement joint training sessions between ophthalmologists and optometrists “to establish a more accurate diagnosis, trust and a more efficient system,” and that commissioners should take the lead on a regional basis.
For more information:
- Tom Bremridge is the chief executive of the Macular Disease Society and may be reached at P.O. Box 1870, Andover, Hampshire, SP10 9AD. +44-1264-350551; www.maculardisease.org; e-mail: tom@maculardisease.org.
- Michelle Dalton is the managing editor of the OSN SuperSite. She writes daily updates on all aspects of ophthalmology.