Campaigning

You may know that I was deeply unhappy about a rather ill considered decision by my RA doctor to withdraw all my treatments from January. I was taken aback, unable to respond properly because my father had just died and I wasnt feeling very real. ANyway things have taken a bit of time (partly because the hospital took 20+ days to write the clinic letter) but my GP wrote to ask for a new appointment and it has just arrived - for very early January.

I've been assembling arguments, trying to think behind the decision as objectively as I can because obviously if treatment could be improved then that should be done. But I have heard rather unsettling information about the doctor who made this decision, and this new appointment may make it possible for me to reopen the whole issue of my treatment.

Just thought you might all take cheer from this. I got the senior GP to take up this case and although he was very professional about it, I suspect he may be rather disturbed by my treatment. If we hadnt got to where we are now, I was going to use the information provided by NRAS to go further via a patient complaint or even to use my MSP (I'm in Scotland). So I have two months of stability I hope - before looking at what changes if any will come to my treatment.

XX Cathie

PS. NRAS were amazing in getting me advice

7 Replies

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  • Sending hugs to you cathie.xxxx

  • That's a nice thing to get on a rather gloomy day in November!! Must change the calendars

    Hugs back to you, Sylvi

  • Glad u seem to be getting somewhere hope your appt in Jan goes well.

    cris

  • Glad you feel like you are getting some support on this now. I'd still consider lodging a kind of complaint (though more just letting them know what went on) with the NHS liaison person at CAB though, or through a "for your information" letter to the MSP - I think it is both good insurance for you to have someone outside recording the details of how your story unfolded, as well as an opportunity for them to investigate whether this is a widespread practice or an isolated incident.

  • My computer is new and is running away with me!!

    This is the second try ... yes earthwitch you're right I should lodge a complaint, but I want to learn more. I have written letters and copied them to my GP so they're on file ready for me to send off when I want. But these agitations are quite tiring arent they and its good to take one step at a time, and have some life !!

  • Yes it can all be so completely consuming can't it? I realise this now because I'm preoccupied by our new job and the imminent trip to London for leaves launch that I haven't been thinking of anything RA related much at all today. I did remember to mention that I had RA today when speaking to the Commissioner of this new commission and she said that was really important because the last big commission she oversaw became almost unstuck because an artist with MS hadn't mentioned her illness and it delayed everything by 4 months - which was well worth it in the end. So glad I remembered!

    The more time I'm spending on work related stuff and being distracted off my health the more I'm aware how totally consuming this past 2 years have been on the RA front. It was necessary and writing letters to Chief Medical Officer and Health board and copying in GP etc have got me much further aquainted with NHS guidelines and protocol etc so no regrets but it was rather like having a full time job for a while - unpaid of course! If you do indeed have Lupus as well as RA you will be feeling very tired anyway and on top of your recent bereavement it must feel pretty tough. But it is also very empowering and it's great that, like me, you obviously have a supportive GP practice who are helping you all they can. Is the January appointment going to be with the same consultant? Tilda xxx

  • Hello I've been feeling fine! No tiredness except from post mtx day and a cold, but I've been feeling fitter than for a while. ANyway I'm going to the photobiologics in Dundee for tests at the end of November so they will be able to say more about lupus I suspect. I dont know whether the doctor I will see will be the same, I'll phone them before christmas ito try to find out who will be on the list that day.

    Paddy once told me to try to achieve one thing a day when I was feeling really rotten. And I can do more than that but am trying to do one RA treatment related thing a day at the moment. Just wishing I had someone here to cook me supper - it'll have to be fish fingers again - yum

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