RCGP/PCRS meeting 18.11.2010
Jane Dunnage explained some of the background to this meeting being set up: LUPUS UK had surveyed its members about their experience of living with lupus. One of the findings of the research was that the average time from date of 1st symptom to diagnosis of lupus is over 7 years; whilst recognising that this illness requires at least 4 symptoms to present, the charity wishes to do what it can to reduce the length of time that patients have to wait for diagnosis, and one key area is to work more closely with GPs. Jane welcomed the enthusiasm of Graham Davenport to set up a lupus working party within the RCGP, and thanked Peter Lanyon for introducing the charity to Graham.
The 2 particular areas where GPs can help the charity are pre-diagnosis and in the monitoring of lupus patients: Tom Margham has already done some work on monitoring lupus patients, 10 things your GP should know and the draft of this will be circulated to members of the Group for comment/suggestions, it would also be shown to 3 or 4 lupus consultants for their comments.
Regarding pre-diagnosis, a computerised pathway to diagnosis is used by one Rheumatology consultant and could possibly be adapted for by GPs. Following discussion there was agreement that identifying the symptoms was the most crucial first phase.
Discussion raised the following ideas and suggestions
Pre-diagnosis awareness
Symptoms: fatigue
arthralgia
other key symptoms to be listed
Tests: blood tests – variability in access arrangements in some PCTs
biochemical tests
urine for protein
NOT GETTING BETTER?
Look back over patient’s history;
Significant risk factors/indicators: glandular fever
Family history of auto-immunity
Recurrent miscarriage
Clinical suspicion THINK LUPUS
Refer on to appropriate consultant
MAP OF MEDICINE v useful, but only when GP has thought of lupus. Symptoms specified don’t always match up with patient’s experience
Suggestion of prompt message on path lab test results: ‘POSSIBLE SLE’
No. of referrals for tests and no. of hits – worth researching? : P Lanyon’s lab – 18,000 tests per yr, 3000 new patients per yr. Possibly audit this from other labs eg Chris Edwards, Ian Bruce??
Symptom codes: EMIS, alert list: suggestions of links between symptoms for SLE
GP MONITORING LUPUS PATIENTS
Monitoring: some aspects already undertaken in general care of patients
+ red flags and specific advice
Tom Margham’s suggested list (attached) to be circulated to consultants for comment.
JD 23.11.10
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 Tom Margham 10 Things | 384 Kb |