draft letter to my rheumy nurse what do you think??

theresa4 · 9. Apr 2010, 04:25

Due to the problems I had at my rheumy apppointment from hell I have drafted this email for my rheumy nurse what do you think? Am I just whining or should I send it in?
:?: :?: :?: letter below

I am sorry I hope you dont mind but I needed to go through a few things as I didnt get the opportunity to ask any of the doctors at clinic on Tuesday.

I was close to tears on Tuesday and had to fight them back as I sat in clinic for the best part of three hours watching people go in and leave who had arrived an hour after me. I never complained but the nurses noted I had been there a long time and kept checking and kept telling me I was next my notes were on top but yet I was not called until one of the nurses stayed down at the bottom til a doctor took my notes. I may sound paranoid but I felt I was being avoided and it isnt the first time this has happened in clinic. By the time I am seen I am stiffer than ever and as its near the end and I feel rushed through and the doctor I saw was quite distracted with another patient having ultrasound and Prof only poked his head in for a second and I didnt get chance to really discuss anything with either of them. Normally Prof takes a few minutes to ask questions and give me opportunity to speak to him and I appreciate that clinic is really busy now but that doesnt really help me.

The doc I saw gave me a prescription for Lyrica for neuropathy pain which is making me feel drunk even if I take it at 8pm I am still feeeling drunk/dopey at 10am the following day. And she expects me to take another tablet after a week ???! I will persevere and hopefully I will get used to it but it is not really doing much at present although the pins and needles in my hands feet and scalp seem to have subsided.

I had an ultrasound on my hands and knees which showed no active inflamation or joint damage and although these are great signs as I keep being told I am still in alot of pain in the joints themselves and the stiffness on a morning is as bad as it ever was and after any activity ie walking I rest and within 20 minutes I find I am stiff again and the joints are painful especially my hands and feet while resting. Following my scan the doc didnt discuss anything with me just called across the scan room thats good the abatacept must be working see you in 4 weeks as I was finishing redressing into my boots and she left.

I spend most of my days in some degree of pain and although I am getting used to it I seem to limp or walk strange all the time and get very little sleep through pain. I need help dressing with buttons or laces and my bra and am only 38 years old. I am due to become a grandmother in June my daughters 1st child and am worried I will not be able to offer her any physical help. Last year we cancelled our holiday as I wasnt physically well enough to go as my husband was working and my teenage children didnt want to go with me in case I couldnt manage. Its a time share with hills and stairs which I have actively enjoyed for 10 years prior to getting this disease which I now wonder what it is at all. If I am in so much pain and discomfort and nothing shows in bloods or scans maybe it isnt RA at all. Im due in for my abatacept infusion next week on Wed but didnt want to discuss all this on the ward and maybe I am just being silly things have been difficult recently as my Grandmother has been seriously ill so my emotions are a bit out of whack and I am sorry for taking up your time with all of this.

Many thanks for listening

dolittle · 9. Apr 2010, 05:18

Hi Theresa,
You're saying it as it is. You can't do more than that. The only thing I would do is terminate your letter at 'I don't want to do this on the ward' - full stop. 'Cos you're NOT being silly and of course your 'nerves' are all up the wall, the way you've been treated.

Let's hope she takes it all on board, and helps you - even if it's only some gentle words for now. I don't think they understand that this is better than a bag full of pills. Some of them are so full of themselves.

Let's know what reaction you get. Sending you some (((( )))))s and the knowledge that I've suffered the same .. now I'm getting pretty mad at them! Remember - chin up .... go get 'em.
Dolittle

elnafinn · 9. Apr 2010, 06:29

Dear Theresa

I most definitely feel that you should send a letter. Is your rheumi nurse the best person to receive it or can you send it to her and copy other people too. I am not sure whom, but you probably will know.

Sometimes I feel a letter is better than an email but perhaps I am being pernickty. :roll: :oops:

There are many good points in your email but I feel you are going into too much detail, it could perhaps be condensed somewhat because I think whoever is reading it may forget what you have said by the time they get to the end.

Bullet points in a letter is a good way to set out sequences of events etc

I also feel you are being far too apologetic, my lovely. There is no need to be at all. The letter is polite without that. Take all that out!

I think I would end the letter on the lines of something like,

I look forward to receiving a considered response/your views on the matter within the next few days.

Go for it, Theresa, it will make you feel better once you have, tweaked it and sent it. You will get a response and hopefully an apology, which is what you are owed at the very least.

If no reply, after a few days, send it again, saying perhaps your first email/letter had got lost in the post/system so you are sending a copy.

Luv
Elna x

speedalong · 9. Apr 2010, 06:55

Hi, I would agree with Elnafinn,

Keep the message you are conveying, but try and make it shorter.

Bullets points are a good idea - especially for your questions - as you really want them all answered and they get lost in the body of the letter.

If they are too busy to spend time with an actual person - they will definitely be short of time to deal with correspondence - so keep it to the point. I was once advised to keep it onto one side of A4 and not to make the print too tiny!! A real challenge I know!! But good advice. I would type it and post it and ask for confirmation of receipt.

It might help to speak to PALS - as that would give you a good chance to air how you feel - and they can mediate on your (and no doubt others) behalf. You wont be the only one who feels like this, honest.

Speedalong

valval · 9. Apr 2010, 07:00

hi i agree with last two statements make it shorter and do not apolagise so much it was there fault and not yours that this occured and you need the answers good luck

angel1 · 9. Apr 2010, 08:48

What is so good about this Theresa, is that you got it all out of your system, and onto paper.

As a Counsellor, that is something I frequently recommend that my clients do.

However, I agree with the others, to get the attention you want, it needs to be a little more concise. Elna`s suggestion of bullet points, I feel, is the best way.

NO apologies should be made, that puts you at a disadvantage immediately, giving them the upper hand. You are blameless in all of this.

Finally, I would say, send a copy to everyone you can think of who is involved in your care......I wish you well........Ange.

woodbon · 9. Apr 2010, 10:21

Hi, You should send the letter, read it through again and see if you can make it a bit shorter, you don't need to apologize, just polite and I like the way you mention the good points at the clinic as well as the problems. This will make the letter seem much nicer to read, and they will feel that you are not just moaning. I think when you point out the good things they do, it makes them more inclined to listen and except the problems you have.

Do use bullet points or number the things you had problems with, if you can, but if you find them difficult, and it stops you writing a heartfelt letter, don't bother.

Good luck!

Love Sue

theresa4 · 9. Apr 2010, 12:27

wow!! :shock:
I love this forum no matter how awful I feel its so wonderful to be able to count on you all to give honest opinions and wonderful helpful suggestions. I wasnt expecting so may replies and actually had thought of deleting instead of putting on here but Im glad I didnt.
I do need to send it although just writing it was therapeutic and after a bit of tweaking I will send it.
Thankyou all again for being so kind hoprfully I can help some of you sometimes.

Theresa

elnafinn · 9. Apr 2010, 12:45

Good for you, my lovely! That is the spirit! You really deserve an apology at the very least. I am so pleased that you did not delete it. You are an important person, don't forget that, aye?

I do hope you have a good weekend.

Hugs
Elna x

dorcas · 9. Apr 2010, 13:19

I agree with what everyone has said and good for you putting this into writing.

I'm sure your letter will be very effective...the written word is still a powerful tool and cannot be ignored or swept aside.

lots of (((HUGS)))

iris x

draft letter to my rheumy nurse what do you think??

Comments

Categories