Too many GPs miss symptoms of GCA says charity patron Lord Wills, but exciting progress is being made.
PMRGCAuk patron Lord Wills, formerly a health minister himself, has made a passionate call for improved diagnosis and treatment of GCA in a speech to rheumatologists who had gathered from across the world to attend a special symposium in Southend organised by our president Professor Bhaskar Dasgupta.
Lord Wills (pictured left) condemned the poor diagnosis and treatment which mean that an estimated 3,000 patients a year suffer sight loss through GCA.
“Why are thousands of these avoidable tragedies happening every year?” he asked. “Far too often, GPs miss the symptoms. Far too often, patients are prescribed the wrong treatment and too late. You all know the devastation giant cell arteritis can cause – and how relatively easily it can be treated with the right diagnosis early enough – so why isn’t this happening and why aren’t the government more actively supporting action to promote such early diagnosis?”
Lord Wills said best clinical practice suggested that patients with suspected GCA should be started on high dose steroids immediately without waiting for specialist review. They should then be referred quickly for a temporal artery biopsy or ultrasound to confirm diagnosis.
He said that a fast track system launched for strokes had transformed treatment for that condition, “So if the government can take such action on strokes, why aren’t they now taking similar action over GCA which is in effect a stroke in the eye?” “Nevertheless, some progress has been made.” He welcomed the fact that new national guidelines were being drawn up and that a fast track pathway for swift diagnosis and treatment had been pioneered by Professor Dasgupta in Southend “with remarkable results”.
Lord Wills has helped PMRGCAuk lobby ministers and senior health officials over a period of five years. “After a series of parliamentary questions and several debates in the House of Lords and most recently with the support of the admirable Health Minister David Prior, NHS England have begun to engage with the need to address this issue more seriously. Two years ago, Sir Bruce Keogh, the Medical Director of NHS England wrote to me that this fast track pathway ‘represents a new way of doing things which is better and costs no more. We must learn from such innovative examples.'”
“NHS England have now agreed to support the dissemination of best practice including the Southend Fast Track Pathway. And they have agreed to monitor on a regular basis the incidence of sight loss from GCA.” Currently no national statistics are gathered on sight loss through GCA. The gathering of national statistics on other medical conditions, like lung cancer, has transformed diagnosis and treatment by showing up disparities in treatment in different parts of the country.
Lord Wills also revealed that NHS England have agreed to publicise the fact that sight loss through GCA should be regarded by medical staff as what is formally known as ‘a serious untoward incident’. When a serious untoward incident is recorded, staff have to investigate within 28 days why the event took place and put systems in place to ensure it doesn’t happen again in future.
“As a means of consciousness raising, NHS England have agreed to publicise the fact that GCA-related sight loss is covered by the serious incident framework. This could be an important driver of progress but the problem has been that this appears not to be widely known. As far as I have been able to discover, there is no known case of GCA-related sight loss being recorded as a serious incident. And so publicising this should help raise consciousness among clinicians.”