Thursday, 16 September 2010

Patience is a virtue...

I am not particularly an impatient person. I hate waiting for buses, waiting in line at the checkouts and queuing for the latest ride at the theme park (not that I’ve done that for a while). But it seriously annoys me having to wait around when it comes to having your health sorted. Recent evidence has been gathered to support the theory that immediate treatment for symptoms of Rheumatoid Arthritis is required in order to slow the progression of the disease. I strongly agree with the ‘nip it in the bud’ approach. However, in my experience, the NHS just can’t seem to pull their finger out of their rear ends. I have been quite lucky that up until now my treatment has been reasonably prompt. When the first port of call failed, Disease Modifying Anti Rheumatic Drugs, I was referred for round two of treatment, Anti TNF drugs (Tumour Neurosis Factor).When, again, this failed to work I was referred for further Biologic treatment, a drug given by infusion every 6-12 months called Rituximab. I have only received one round of Rituximab so far and when I went to see my Rheumatologist earlier this week she suggested I have my second lot as soon as possible, due to the very annoying flare up I am having at present.
So it has taken me about 19 months to get to this point. What is frustrating me is that I have tried to get hold of someone at the hospital where I will be having my treatment to find out when I will be going in. After all, I do have a life, which because of the nature of the treatment and the fact it made me unwell previously, I have to plan around my admission. It means I will probably be out of action and extremely tired for about four weeks, if it was anything like the last infusion I had. So, when the hospital and Rheumatology department fail to return my calls, inevitably I become very impatient. I am suffering, and isn’t it the main purpose of the NHS that people are not left to suffer in this country? I read an article recently that suggested the NHS treat Rheumatoid Arthritis diagnosis as seriously as cancer. This is because people with RA, on average, die 10 years younger than a healthy person. So if our lives are being cut short by a decade already, our healthcare providers should be doing all they can to ensure early treatment to effectively control this disease. I want to live a healthy, long life but imagine that this waiting around will be a common occurrence with the NHS. I wonder how quickly I would be treated if I had the money to afford private care?
I am still waiting for someone to get back to me about my treatment. Maybe in the meantime you would like to share your stories of timings between diagnosis and treatment, so I have something to read while I wait… and wait….


  1. I am praying for you and others with this horrible disease. I have fibromyalgia and chronic fatigue. I sent you a private email on FB.

  2. I am a type A person so patient and I do not actually get along. I hate waiting or sitting anywhere and it in particular when it has to do with my health.

    I am sorry to hear that you are having a hard time with your medication situation. It makes sense that they would treat RA as severely as cancer but awareness for RA is not the same as cancer so that explains a lot. A lot of this is change with groups like NICE (National Institute for Health and Clinical Excellence), hopefully that message gets across. If you have not checked out their website, you should. There is a lot of great info about RA treatment. Here is the link.

    Good luck with getting the treatment. Hopefully, it is not too long.

  3. Hmm sorry to hear that but it doesn't surprise me. Now I have to say Im a huge fan of the NHS and I'd hate to worry about insurance etc like they do in the US, but there is no doubt we need more funding, more doctors, fewer waiting lists.

    I first went to my GP about my issues on the 1st Dec last year. It took until 15th february to see a rheumatologist. It then took until the end of April to begin treatment. But thankfully my case is mild and they had to do a lot of investigation to determine what was going on so it didn't bother me too much to wait, apart from mentally i was worried obviously. I would hope if it was more severe it would take less time than that.

  4. I live in Canada and first saw a doctor about my symptoms on Dec. 7, 2009 (my own doctor was away but I'd been suddenly over 12 days become sore all over and basically couldn't move). Blood was taken that same day to be tested.

    I had to call the doctors' office the following week when I hadn't heard back; they said the results were negative. I insisted on seeing someone because I was getting worse. My doctor, who was away on holidays, was called, and she made an appt. for me with a rheumatologist on Dec. 23. The rheumatologist right away suspected RA and sent me that same day for further blood test and a whole series of X-rays.

    By Jan. 14, 2010, I was diagnosed with RA. On Jan. 20, I started on Methotrexate and on Jan. 27 I started on Enbrel (for which I needed insurance pre-approval – I got it astoundingly quickly).

    My rheumatologist takes the prescribed route in treating this disease, which is hit it hard as early as possible, and the system here doesn't stop her, and for that I'm very grateful!

  5. thank you for your comments... its interesting to find out other peoples experiences. And guess what... I'm still waiting

  6. Awesome job! Proud of you! Always think positive never stop believing!

  7. I live in the US and have Insurance, for me it has been easy to get evaluated & treated. I saw my GP in early June, rheumatologist late July, had labs & a bone scan, saw rhemy for 2 wk eval & results, started Plaquenil at that appt. Been on it now for two months & I see a big improvement. Hope you get the call soon & get some relief! With private care you probably would have had an appt made w/ in days to go in w/in the week. At least that's how it works here.