Reminder: Use of the questions section

[Victoria-NRAS]

Hi all

My colleagues and I on the NRAS helpline come on here regularly to check the posts to see if there’s any useful information that we can add. In looking at some recent posts, we are a little concerned about some of the questions that are being asked on here, which are basically asking for advice on very specific medical queries.

Responses on this forum can be extremely useful in offering support and reassurance and discussing personal experiences or answering general queries, but questions of a more medical nature (especially if it’s a very specific query) should always be directed to a healthcare professional, and ideally to your own healthcare team (such as GP, rheumatologist or rheumatology nurse).

As you will probably have seen to the right of the posts on here, the guidelines state that: ‘Content on this site does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.’ It is important when phrasing a question to remember that this forum is used by patients, rather than healthcare professionals so answers will be based on their experiences, and this may not be relevant to your own personal situation. With this in mind, if for example you were concerned about a medication that had been prescribed, it would be better to ask about other people’s experiences of this medication rather than to ask people if the medication is safe.

On the whole, where medical queries have been posted, the responses have been worded with care and consideration, and they usually suggest seeking medical advice. However, unfortunately this is not always the case.

Talking about your personal experiences is important and we encourage this, but please bear in mind the individual nature of RA and encourage people to talk to their health professionals about their concerns.

I hope this all makes sense. Overall the questions, blogs and responses are all very positive and supportive, and we hope this will continue. If you have any questions about the above, please feel free to contact me either by replying to this post or sending a private message if you prefer.

Many thanks

Victoria

(NRAS Helpline)

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I understand where you are coming from Victoria and I do try to avoid asking medical questions generally - especially if they might put me in a alarming situation with my medicines. But quite often many of us can't access our medical teams easily or when we do we get met with extreme brevity and also sometimes with ignorance about the very specialist medicines we take. I would always double check with my GP by phone or by a visit if I was unsure but the way the NHS works now it can be a very long winded process and sometimes it's the people on this site who prompt us to seek urgent medical help when we might otherwise just make our own decisions wrongly. If I'm a culprit in this then I'm sorry but we are often forced play detective/ doctor to ourselves with RA it seems. Tilda

[caggy]

I agree with Tilda,

I would hate to think that because a medication has or has not worked for me that I would have inadvertently advised others, I really love the site and have always felt that I could ask questions about how a treatment effects others, Many on here have helped me become more positive about how RA really has impacted our lives in a way that many of the 'professionals' don't grasp. I chose not to take MTX when I could not get myself heard by my GP or Rheumy nurse, the Consultant was aghast but continued to offer other meds rather than take time to help me understand how the RA and MTX affects me personally. This site because of the many discussions has helped me more over 3 months than 18 months of professional help, so all in all I hope it continues to provide this much needed service. Thank you. Carol