The new national guidelines for the diagnosis and treatment of Giant Cell Arteritis are nearing completion. These guidelines, which PMRGCAuk has played a key role in developing, have the potential to transform the treatment of GCA.
A major symposium led by our PMRGCAuk’s President, rheumatologist Bhaskar Dasgupta, was met from 10-12 March in Southend to discuss the guidelines. Patient representatives from PMRGCAuk sat on the committee which has drawn up the guidelines and have played an active role in ensuring our perspective as patients.
Following that symposium, an expert committee of the British Society of Rheumatologists will formally review the guidelines but, as leading BSR members have been involved in drawing them up, there is every expectation this committee will support them. The guidelines will then be published for peer review. That part of the process is expected to take only a few weeks and it is hoped the guidelines will be accepted by all relevant parties within a very short period of time, perhaps as soon as early May.
PMRGCAuk, with the help of Lord Wills, has been in direct talks with the Medical Director of NHS England and government ministers, to find ways of rolling out the guidelines nationally once they are finalised. In a series of meetings over recent years, the charity’s Trustees have been lobbying ministers and senior officials for a national fast track system to ensure better diagnosis and treatment.
The draft guidelines describe GCA as “an emergency” because of the risk of ischemic vascular complications and blindness. They say there must be a fast track for early diagnosis and swift treatment. They also say that doctors and the public need to be educated about the condition. The guidelines point out that in places which have a fast track system, preliminary results of studies show a significant reduction in complications.
The new guidelines say that patients with suspected GCA should be referred to a specialist, preferably through a fast-track system. The condition should then be managed jointly between GPs and specialists. Where there is suspicion of GCA, especially when someone has visual symptoms, the patient should be treated immediately with high dose drugs to prevent blindness.
The guidelines lay out the symptoms of GCA and tell doctors how patients should be assessed. They say anyone with visual symptoms should see an ophthalmologist as well as a rheumatologist. Every patient should have an individual management plan and should be monitored carefully. The guidelines also give doctors detailed information about treatment.
Chair of PMRGCAuk Trustees Penny Denby said:
“We welcome these new guidelines. We have been lobbying ministers directly and, in a series of meetings, we have relayed to them how scandalous diagnosis and treatment is in this country. Some people get great treatment but many don’t. Doctors across the country are not following one set of guidelines.”
Our experience, backed up by independent research, is that many people in this country suffer from poor diagnosis and treatment. It is estimated that more than 2,000 people a year lose some or all of their sight because of delays in diagnosing and treating GCA. Even when GPs do suspect the condition because a patient shows strong evidence of symptoms, some delay giving patients a high dose of steroids until they have confirmation, resulting in irreversible blindness. Sometimes people with a GCA diagnosis are sent to Accident and Emergency departments where they are kept waiting around by staff who don’t realise the dangers of delay, resulting in sight loss. Some are given appointments at eye clinics days or even weeks later and receive no treatment in the meantime, resulting in blindness. Others are given steroids, but in doses which are too low.
Ongoing treatment too can also be haphazard. Some people are given doses of drugs which are too high, some doses which are too low. There is too little support for many people in the difficult task of coming off steroids. Again, these are key points we have made to ministers in a series of meetings.
These guidelines have the capacity to transform diagnosis and treatment. We will work closely with all parties to help in rolling them out. We will be drawing up a fact sheet explaining the system which should be in place according to the guidelines, so that members of PMRGCAuk can find out whether such facilities exist in their area and demand of health officials and their local MPs that they should be available. We can all play a key role in educating GPS and the public in the areas where we live.
For further information please contact:
BM PMRGCAuk, London, WC1N 3XX
T 0300 999 5090