Don't give up

crinkly1

After more than 20 years living with Nodular OA the goalposts have moved during the past 3-4 years and the pain in my hands and one shoulder especially, drove me back to the GP. Now living in a different area from the one where I received initial diagnosis, my GP eventually referred me to a new hospital and Rheumatologist.
Disappointingly, I was treated as a new patient but jumped obediently through all the hoops proferred, hoping for an opportunity to pursue at least the issue of the shoulder pain that has kept me awake during many nights over the past two years. But no - other joints were x-rayed and I was discharged with a diagnosis of OA.
Frustrated and utterly despairing, I did what I've never previously contemplated and wrote to the senior Rheumo setting out my case.

Result! I was offered a further appointment, with a different Consultant, and went to it in some trepidation that I might have been branded a nuisance. What a difference in the way I was now treated! I learnt that the Rheumo I'd been seeing had been 'temporary' and this was the permanent replacement. I left the clinic having had a steroid injection into my shoulder, (in spite of having been told just three months previously that there was no inflammation in any of my joints) with an x-ray arranged and probable orthopaedic follow-up explained. All in the space of about 20 minutes. What a difference this made to my state of mind. Now I look forward to being able to drive the 200 miles to hold my two newest grandchildren and play with the older ones this Christmas without the disabling pain that was making me dread it. Now I look forward to a year in which at least one of main problems will be addressed - and maybe I can start on some of the others after that!

Why on earth have I nor been more assertive before? It takes alot of energy but why did it take so long before someone actually appeared to accept what I said? OA isn't life-threatening and I appreciate that resources are limited but it definitely affects quality of life in a big way.

Just hope my tale will encourage someone else who is now feeling as despondent as I was just a short week ago.

elnafinn

Good for you Crinkly1. After a while of being led down the garden path, we become so cross that we decide to do something about it. Writing a letter, setting out the facts clearly, with names and dates etc, does get read and a reply is received, usually in our favour.

It is good to complain, I wish more of us would do it. So pleased for you that you have been treated well as a result of your letter and I wish you a happy christmas and a healthier, more enjoyable new year.

Elna x

barbara12

Hi Crinkly
What a positive thread, good for you, like you say its not easy to complain, but it does pay to.
I am so glad you are getting the treatment you deserve, I do hope you carry on seeing improvement.
You will give other the confidence to do what you have, thank you for that.
Good Luck with everything.
Love
Barbara x

speedalong

Well done Crinkly, and great result!! Sadly it does seem to be that we have to be assertive to get the treatment that we need.

Speedy

tillytop

Hello Crinkly!

I was really encouraged to read your post and to hear that you have had such a positive outcome from the second appt.

I really do hope you do enjoy your Christmas and that 2011 IS a positive year for you.

Love Tilly xxx )

chris7

Hi Crinkly

Just wanted to call in and acknowledge your very heartwarming and positive post and say I hope you do continue to fight your corner and get the treatment which helps. This forum does encourage others who need a bit support to demand better care so good for you and thank you for posting. I hope things do continue to go well for you.
Chris