Ideal NHS care for lupus

This links to the NHS Choices website and gives a really great description of how lupus should be investigated, diagnosed, treated and monitored. You just need to click on the little 'i' to get full information of each step.

I've been quite lucky and my care has been pretty much text book, apart from the usual chasing up appointments and uncertainly over vaccinations.

However from reading these blogs, not everyone gets such good care - so I hope this helps you get what you need.


7 Replies

  • This is great! It is important to know how to look after ourselves! Thank you for sharing it with us Marypw :)

    My warmest regards,


  • Extremely useful, thank you.

  • wont let me in to view, because no longer in uk...i use to live there, but im in canada now...

  • Thank you very useful! I will pass this on to my GP as she has not come across a lupus patient before with myosotis and lung desease. Best wishes everyone x

  • Most useful - thanks for sharing. xxx :)

  • just followed this link, printed off all the info & studied it a bit. and am so glad you told us about it, marypw: many thanks!

    the only thing that REALLY surprised me, is that on page 2/22 the listing of information resources for patients & carers does not include a link to Lupus UK: i wonder, why? after all, arthritis care is listed...

  • The NHS is currently changing their online services (soon it will all be migrated to something called the NHS Portal). Basically, one of their new policies is to only use information and share contact details for organisations that are certified by the Information Standard. Arthritis Care are currently Information Standard accredited, whilst we are not yet.

    The good news is that I have been working all year on getting Information Standard accreditation for LUPUS UK and we should be certified in the next couple of months. I'll be sure to let everybody know once we are certified......I'll mostly be shouting about it because of the amount of work that's gone into it ;P

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