Question?

[Barrister]

Why is it that we are not allowed to ask nor give, advice on this forum? On other forums on Health Unlocked, people are asked for and, freely give advice. So why so different on the NRAS forum? I'm not trying to be confrontational, I just wondered, that's all. Clemmie

[Beverley-NRAS]

Hi Barrister,

Well, we cannot speak for what happens on other forums or comment on how they are moderated but under the users T&Cs it is clearly stated that this site is never a substitute for professional medical advice. I have copied the section on this below for you:

3. Medical advice

Our Site’s content, or any content on other sites linked to from Our Site, is never a substitute for professional medical advice. Even if another user appears to be a medical professional they are not in a position to undertake a physical examination or understand your full medical history. Therefore you should always speak to a doctor or other health practitioner about your condition and/or treatment or changes to your condition and/or treatment. In an emergency dial your local or national emergency telephone number (see a list here). Never delay seeking advice or dialling emergency services because of something that you have read on Our Site.

That is why we do not allow it. We are following the guidelines for running this forum as laid out by HU. I hope this answers your question.

Regards

Beverley (NRAS Helpline)

[hatshepsut]

I think that there is a fine line between giving medical advice, which is of course the remit of the medical profession, and exchanging tips and descriptions of things that have helped yourself or others.

I think I am saying that diagnoses etc are not our expertise, but we are always exploring areas around health problems to our mutual benefit, and I can see no reason why this should be frowned upon. Obviously we are precluded from prescribing treatment, but sharing our experience and giving mutual support is surely what this forum is for.

I would hope that a sensitive approach to the guidelines is needed, if this forum is to fulfil the needs of the users. M

[Barrister]

Thanks Hatshepsut and Twitchy, that's what I find so confusing! I'm also on TUK forum and have found that they do things very differently to NRAS and wondered why this was. Some of my questions seem to have fallen foul of the rules on here when really all I have asked is what others have done when in my position. Sometimes we just want confirmation that we are doing the right things or confirmation that what we are going through is normal when dealing with our health even when we do have some knowledge. Im a former nurse but it is totally different when you have a disease or illness yourself! Clemmie

[Hidden in reply to Barrister]

Oops accidentally deleted mine Clemmie - and just off out now so I can't re write it - sorry! X

[Beverley-NRAS]

Hi all,

certainly it can be very useful to hear about other people's experiences but as hatshepsut says, there is a fine line between this and giving medical advice. There are many different conditions represented in the communities on HU and the treatment and medication used in them varies enormously and so incorrect medical advice given, if taken can have very different consequences between forums. The drugs used to treat RA are very strong and it would be very unwise not to follow the instructions given by the trained rheumatology teams when taking them. But certainly, share experiences. These can be very useful.

Regards

Beverley (NRAS Helpline)

[dtech]

There is a fine line between giving first hand experiences of drugs and treatments and offering 'medical advice'. Sometimes people have tipped over the edge and the moderators, quite rightly, have had to step in. I agree this should be an open forum where people can chat about their experiences. Also it is a great site for learning about our condition if you are newly diagnosed. We can also hear about drugs which other people are on which we may not have heard of, so empowering us to ask meaningful questions at our appointments with health professionals. Unfortunately in the past some people have given diagnosis and their opinion of what treatment they should have when people have asked for advice. As a dental professional I have seen this happen on here regarding dental problems and had to report it. Good old google has a lot to answer for, for health professionals when patients come in armed with what they have found out on line!! Lol. Stay well

[cathie]

I think this is a good thing. We dont really know one another unless we have actually met which is unlikely. I always try to get people's experiences and find this is quite a good way of comparing notes. We need to get satisfaction from the medics and this can't be a substitute.

[Scottishlad]

I feel that I have been able to use my experiences of my treatments to help reassure some new users. There are so many negative stories on certain treatments about on this and other forums I feel it good to be able to give a positive side to them from my own experience.

I am always very careful direct people for professional advice when it is appropriate, I would hate to say anything which would adversely affect anyone's condition.

[nomoreheels]

I do hope it's not affecting you so much you prefer not to be here Clemmie? I understand just why people ask some specific medically related questions & do think if the NHS Rheumys were allotted enough appointment time per patient most wouldn't have the need to do so. Unfortunately, I don't see this happening any time soon so guess it will continue & we'll just have to be careful when answering. I must say I find it so difficult & actually unfair when members are left somewhat in the dark, particularly newly diagnosed members who through lack of information given by the people who should be giving it reach out to us, probably finding us my searching for answers on the internet. I'm thinking here about some of the meds we need to help have our sort of normality & their fears. Many patently haven't had the efficacy or need of them explained by the people who are best placed to do so .....it's quite tangible sometimes the fear that comes over in this type of post. Surely nobody with an ounce of compassion would just let them believe the horror stories found on the web or at least attempt to allay their fears or try to reassure them that there's good reason their Rheumy has suggested or prescribed their new med?

I was fortunate, I'd experienced a healthcare system where the patient is encouraged to be actively involved & appointment times were on the whole used as a guideline so every patient waiting appreciated that there was probably good reason if the previous patient's appointment ran over time. It was so relaxed everyone just chatted whilst waiting their turn, though it could sound like a cattle market at times! There again, no "quiet please" signs so of course they'd talk, it's only natural lol! Someone once mentioned something along the lines of we're strangers like patients in a waiting room, but I prefer to think we're a little more than that. We only know one another through a common disease but I would like to think we have a little more sympathy & more supportive than someone we may meet once or twice face to face in a hospital. I only needed to join after returning to the UK for most of the reasons I've mentioned, though had lurked in the background until I lost the site when it changed, last year, though that was more me being nosey & not knowing anyone else with RD other than the people waiting to see Consultants & I rarely saw the same person twice!

I've found being a member here a great help & more than happy to share experiences if I can & support anyone who is struggling if I've been there. Obviously we can't diagnose or be too specific regarding meds, it stands to reason, but we are able to share any experience of RD & any meds we take or have taken since diagnosis & support & empathise with one another, my main reasons for coming on. I think it's just a case of taking a step back before answering & consider if it's advisable & within the t&c's.

Gone on & ranted yet again!...another reason for coming on Clemmie, sorry to anyone it bugs, but I often say to others rant away, it helps!

[Barrister]

Nomoreheels, it certainly won't stop me coming on here, so don't worry lol! I have found this forum to be extremely helpful. I just find it can be a bit frustrating at times when what I've asked has been misinterpreted by someone on the admin team. Obviously I need to make myself more understood! And you weren't ranting! Clemmie

[nomoreheels in reply to Barrister]

Aww thanks, just that sometimes I start & it spills out lol. Been a little less verbose recently, suppose it depends on the day I'm having & today's quite good one! I'm pleased you'll still be here but if I'm honest I've not noticed anything posted by you that could be considered to have breached the t&c's, certainly no more than some I've seen recently & was a bit perplexed at your post.

Anyway, water under the bridge & all that!

[NeonkittyUK]

Even my rheumy nurses can be hesitant on some med issues with giving advice and check with the consultants. I have seen people on here in the past telling others to take such and such .. medication wise and it is dangerous if we don't know the person as others have just said here. We don't know what other meds they take or all their conditions. We can offer great advice on devices/appliances/tips on items bought .. equipment etc, footwear we recommend, accessibility for holidays and especially our worries with starting new meds. The great thing here is that people come on and say how it went for them and the vast majority of people are upbeat and sensible and give you support and confidence. That is what my aim is to do here and I thank all the people who have helped and are helping me (as I am still quite new to my med.) Yes I have said what hasn't worked for me and always say why if someone has asked, but I would never discourage anyone who is thinking of taking a new med even if it hasn't done much. People need to feel positive/confident about these things. I always try think .. Is this useful to someone? (Hopefully!) I have detailed some of my experiences on anti-TNF's .. and said what worked and didn't but am always keen to stress that we are all different and what works perfectly for one can have little effect for another. We are lucky here that this Forum has so many lovely supportive, encouraging people and the Admin are very active on here and help us too. Thank You! NK