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Good news - Health Minister listens re early diagnosis GCA

The following was posted on the internet by Kate Gilbert Chair PMRGCAuk today:

Health Minister Howe listens to our concerns about vision loss caused by late diagnosis of GCA

Yesterday was a major milestone for PMRGCAuk because we made a second visit to Whitehall to meet the Health Minister, Earl Howe. Our president, Prof Bhaskar Dasgupta, trustees Kate Gilbert and Dorothy Byrne, a member of our medical advisory panel, Brian Bourke, and Lord Wills, discussed with the minister the stunning trial results achieved by Prof Dasgupta and his team in South Essex in recent months. They managed to cut down cases of sight loss and blindness to almost zero.

How did they do this? The Southend University Hospital rheumatology team agreed with local GPs a fast track system for referring people with suspected GCA. A GP faced with a suspected case of GCA would do a quick assessment and see whether any 'ischaemic' symptoms were present, such as visual disturbance or pain in the jaw on chewing. They would phone a special number and arrange for the patient to be seen at the rheumatology clinic on the same day, and given intravenous steroids. Other cases would be seen within 24 hours. Advice to GPs recommended that the patient be started on prednisolone even before going to the hospital. This won't interfere with the results of any biopsy as long as the biopsy is carried out quickly. If the patient turns out, on the decision of the rheumatologist, not to have GCA after all, the steroids can be stopped without any danger to the patient.

We believe that when faced with a suspected GCA case, many GPs are in a dilemma because they know that the patient needs steroids but they are worried that putting them on steroids will mess up the diagnosis. And this is often the case when it may be weeks rather than days before that patient gets to see a specialist. And we know that it is that delay that causes many people to go blind in one eye, and in the worst cases go blind in both eyes. If GCA can be treated on a fasttrack pathway like this, so that GPs can be confident that they can give the steroids and the patient will be seen straight away, they will have no fear about doing what has to be done. The fast track is a perfect example of primary and secondary care working together properly.

So what we want is to see this pilot study turned into a model that can be rolled out across the country. The Department of Health are sympathetic to what we are saying. They agree with the figures - GCA is affecting the eyesight of about 3000 people a year who are losing vision to some extent. Of these, about 1000 are losing the sight completely in at least one eye. They agree that the economic and social cost of this is huge, not to mention the personal catastrophe. They agree that the results of the pilot are truly impressive (the Minister's own words). The question is, what to do about it?

We have asked the Department to help us work with other organisations, including the Royal College of GPs and the British Society of Rheumatologists, to form a working group to evaluate the trial and create the model for dissemination all around the country. Because the actual delivery of health policy is shifting now from Whitehall to the new Commissioning Boards, our fear is that we could lose a lot of time while the new structure is 'bedding in'. And meanwhile, hundreds more people could lose their sight completely needlessly. So we are hoping to get this group together soon - at least by the end of this year. Watch this space!


Updated 10th July 2012

We are excited and absolutely thrilled to let you know that,following our meeting ten days ago at the Department of Health, department officials have today agreed, with the blessing of the minister Lord Howe, to participate with Prof Dasgupta and ourselves in a working group to
a) evaluate the pilot of a fast track route to GCA diagnosis, to avoid sight loss
b) if it is shown to be effective, to work on a model and a process for disseminating it around the UK.
This undertaking is the fruit of a long and persistent campaign by Lord Wills of Swindon to get the DoH to take seriously the risk of sight loss due to the misdiagnosis or the late diagnosis of GCA. It started a year ago last March, with a debate in the House of Lords, and we hope that by next March the working group will have made enough progress to hand a fully worked-up model to the new Commissioning Boards.

Clearly we will let you have more information about the composition of this group and its terms of reference in due course, but enough at the moment to say that it will include representatives from the Royal College of GPs, the British Society of Rheumatologists, and senior Whitehall staff, and a patient representative, as well as a rep of PMRGCAuk.


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