Covert spying mission

Covert spying mission

It’s a little over six months since I joined NRAS and already my time has come to write another blog. Despite a whole six months going by however, it's only in the last few weeks that I've really come to truly appreciate the value that patient groups hold and the great responsibility they have. A great responsibility that NRAS has.

I genuinely believe that we have some great healthcare professionals in this country but even if they were able to give each patient many more hours than they currently have the resources to do, it still would not be enough time for someone potentially facing a chronic condition, and with that, a never-ending list of questions.

Patient groups help to fill that void by offering some of the answers to these questions at a time of the patient’s choosing, giving them time to think about the condition and what it may mean for them. This is not taking away from the role of the doctor but complimenting their work by offering the patient reliable sources of information so they can then discuss their condition in an informed way. They also allow the patient to talk directly with someone who has “been there before” and knows something of what they are going through.

In the interest of doing a thorough job, I’ve spent the last few weeks doing some secret undercover work and learning more about different patient groups and what they do. Added to that I have been Googling a number of conditions. The internet is awash with opinion and when someone is in a vulnerable position a lot of that information can be quite daunting. It can also be factually incorrect or skewed so that the negative far outweighs the positive. The media don’t help by only ever reporting on the most extreme cases but some patient groups can be no better.

I do think NRAS can hold its head high when it comes to providing concise understandable information on its website about rheumatoid arthritis, not just about what the condition is, but what the prognosis can be. It also manages to keep abreast of new developments and areas of exciting research. Many organisations appear to only promote the worst case scenario in order to make their condition seem worse and therefore get more attention. While it is important to highlight the seriousness of RA, there is also the need to offer hope.

Any comments about how we can continue to improve our services are always welcome.

11 Replies

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  • Hello Andrew, congratulations on your first six months with NRAS. I read your blog with interest and I agree with your conclusion that NRAS can hold it's head up high. In years past the only way to find out more about a diagnosed condition such as RA was in a handful of leaflets given by the doctor. Now, it's all there at everyone's fingertips (if they have access to a computer). I came home after being diagnosed last year and read everything I could find on different sites on the web until I was utterly saturated and overwhelmed. I am sure that I'm not alone in having done this!

    I didn't do anymore fact finding for over a year until I read about NRAS health unlocked in a magazine in the Rheumy waiting room. I think the information on this site is written and explained well. This community blog is great, because RA in all it's forms can leave you feeling alone like an island, because it's hard for anyone other than a fellow sufferer to understand the multitude of affects this disease can have on our bodies. Here on this site we can blog about a bad day or share the joy of doing well and talk about a multitude of other subjects.We also have the benefit of contact with yourself and the rest of the NRAS team.

    I am so pleased not to feel alone anymore and I would like to say a big THANKYOU to all of you NRAS people, Best wishes June :-)

  • Thanks for that and it's really encouraging to us to hear that you're feeling supported, whether by us at NRAS or by those on Health Unlocked. Sites like this hopefully mean that no person is an island and everyone can come together and share their experiences - postive or negative. We have certainly seen the benefit of it.

  • Hi Andrew - well done for being part of the team of NRAS and reaching the 6 month milestone! Today is the one year anniversary for me since diagnosis - but not since the onset of RA symptoms though - they started almost 2 years ago but it took a while to see a consultant and then a further while to be diagnosed and put on treatment. I count myself as one of the lucky ones to have been referred by my GP early - who was then persistent on my behalf until I was diagnosed formally 9 months later. I'm now relatively pain free and can use this one year marker as a way of seeing how far I've come - a long way.

    I have to say that a lot of this has been down to NRAS and I'm enormously grateful to this charity and to HU for the opportunity to share my experience with other fellow sufferers. As you say it is just like being an island often - even when symptoms abate the drugs we take are still pretty heavy duty and both disease and medication can affect our lifestyles more than many people can begin to understand or relate to.

    I don't have a rheumatology nurse where I live (I'm an island in an island!) and have only seen my consultant a couple of times since everything started 2 years ago. I've been very lucky with my RA being caught early enough for DMARDs to make a big difference and also to be able to keep fit and continue to work - but for NRAS and HU and the people on here I don't think I would have fared nearly so well - either mentally or physically. So many thanks to you and to NRAS for the jobs you do on our behalf!

  • Thanks for that. Glad to hear you're improving and that you feel NRAS has given you good support. Long may that continue.

  • One of the things that I like about this type of support is the feeling that I can be of use to someone else from my past experiences, which are otherwise not so good to think about! So from even the worst times can come something good.

    And just reading about some of the effects that RA has on the lives of others and how they cope can make you say to yourself "Come on, if they can do it, so can I".

    And I'm really pleased about the emphasis on exercise as I think it has been my life-saver and prevented the RA from affecting me any more than it does.

  • Absolutely you can be of use to someone else, everyone's experience can make a difference to someone else. RA affects people in different ways so it's important for people new to the condition to get a mixture of experiences in order to understand it better. It's really good that people can give inspiration to each other.

  • one of the best sites around andrew keep up the good work you can get a reply in min on here on what to do and other peoples views on the subject

    just wish someone would put a bage up on bloods and the norm and what they mean to the normal layman

    regards john

  • That's kind of you to say so and I'm glad you find the site helpful. If you email me - andrew@nras.org.uk - saying what sort of information you're looking for on bloods then I'll see if we can get something put up.

  • Hi John

    As Tilda has explained, it is hard to say what the normal levels would be for people, as everyone's different, and different labs can also vary.

    However, for more general information on blood tests this is a very good site:

    labtestsonline.org.uk/

    There is also information on some of the common blood tests used in RA on our website:

    nras.org.uk/about_rheumatoi...

    Kind regards

    Victoria

  • John - that would be impossible but if you want to learn more then there are lab test results sites. The reason I now understand that it would be impossible is because there is no real normal level for many of these test results - everyone has different normal levels for many of the blood tests for inflammatory arthriits.

    For instance I read once in the BMJ that for women's ESR results you halve their age and then add five which would make mine 29. And so at 30 I think I'm happy to say that this is my normal - but many men and women of all ages would have much lower ESRs though so they put normal from 1-10 for everyone. But since the real norm changes depending on the gender, age and the overall patten of someone's results and viral infections etc there can only ever be the figures in brackets as a very approximate guide in one column - you just have to learn by your own body and blood results to read your own idea of what's normal for you I think and then fight your own corner. I have learned the hard way that it's DIY rheumatology these days - which is why

    Tilda x

  • oops sent that by accident - which is why Andrew here is doing covert work on checking that support networks exist and are giving the right information as NRAS is so good at doing.

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