Chris-Maker-LUPUSUKby Chris Maker, Director of LUPUS UK

One of the biggest problems for people who have lupus is obtaining a diagnosis.

During 2009 LUPUS UK posted a survey questionnaire to all 5,700 members asking them to provide information about how lupus impacts on their lives. The response was overwhelming with over 3,000 completed questionnaires being returned.

The summary of findings was:

  • It was taking, on average, more than 7 years to diagnose lupus from the first symptom experienced – this had not improved over a 20 year period.
  • More than 45% of patients were initially mis-diagnosed
  • The most difficult symptoms to live with are fatigue, joint pain and depression
  • Just under 50 % of those who had retired had done so on health grounds
  • Of the 42% receiving benefits, 24% receive higher level mobility allowance


When I joined LUPUS UK I quickly learned that most lupus symptoms are invisible, which not only makes diagnosis difficult but can also lead to other problems, in areas such as relationships and work. Accessing benefits can also be difficult and a number of our members have told me that they have been confronted by other members of the public when they have use a parking bay for the disabled, where they are a blue badge holder. The most difficult symptoms to live with – fatigue, joint pain and depression – are, of course, invisible.

To highlight the difficulties that lupus causes we are repeating the survey again this year and have had a terrific response rate of over 2,500. We will look at the results with interest and see how they compare with those of the earlier survey. In particular we’re looking at the time it takes for someone to be diagnosed.

We recognise the importance of GPs as the gateway to treatment by the NHS, the medics whom patients will initially see when symptoms first present. We do not expect GPs to be experts on the disease and we recognise that lupus is, in many cases, difficult to diagnose as it presents in so many different ways with many symptoms similar to those of other conditions. However, we do expect GPs to have an open mind as we know that early diagnosis leads to a better prognosis in most cases.

The results of our survey will assist in our campaign to increase lupus awareness amongst GPs, and we are working with the Primary Care Rheumatology Society and The Royal College of General Practitioners to this end. The message to GPs is ‘think lupus and refer’.

By raising GP awareness, we at LUPUS UK believe that more people will be diagnosed earlier, leading to earlier treatment, which will improve their quality of life with the added benefit of reducing their need to use the health service as much as they have. It is important that awareness of the rarer MSK conditions is raised to ensure that patients do not fall between the cracks.

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