HELP! I am being ignored!

missishy

Hi everyone,

I have been having a flare for 3 months now. Intially I went to the nurses and received a steriod jab - this kept me going 3 weeks or so. I then started to seriously fatigued again and had to come off work. Had an emergency appt with Rhumatologist (after much hassling) he saw me (in a rush at end of clinic) examined me and told me my pain wasn't obvious (no swelling or the sort). I explained my symptoms and he said 'Jury is out on whether it is RA" sent for blood tests on 31st March. Called and called since then to get results and get follow up appt. Got GP to tell me that results (my RF now +) but both my GP and I have called numerous times to speak to Nurses and Rhumatologist's secertary to try and get follow up appt (at least twice a week!) no - one calls me back!!!!!!!!!!!!!! No one arranges appt!!!!!!!!!!! I have had 5 weeks off work now!! What shall I do? I am at my wits end - who shall I complain to?

HELP!

valval

this terible they should not treat you this way do not know what to say to you some one else will know ((())) to keep you going

abfab1963

This is absolutely dreadful!!!

I think if it was me, I would go to the hospital and the Rheumy clinic and refuse to leave until someone talked to me?

You NEED answers and thats all I can think of right now....sorry!

Abfab
x

missishy

Thanks did think of this but wasn't sure if it was a bit extreme?! What do others think?

abfab1963 wrote:

This is absolutely dreadful!!!

I think if it was me, I would go to the hospital and the Rheumy clinic and refuse to leave until someone talked to me?

You NEED answers and thats all I can think of right now....sorry!

Abfab
x

bailey27

Hi

I had a very similar experience a few weeks back. (may be worth looking at my old thread)

Basically had a massive flare and lost about a sonte in weight, felt terrible. Phoned rheumy nurses, wnet into clinic, phoned consultants secretary went to GP.

To this day i have not had any help, even saw the rheum as emergance appoitnemtn but felt he didnt want to know and sent me for another mri scan which is in 5 weeks!!

I didnt get any help at all and the flare has since eased off on its own although I feel like I am left with very tight adn sore muscles from all the cramps i was getting.

I am not naturally authorative so found it quite difficualt.

My advice would be to be strong and make sure you get seen beacsue the certainly wont come to you. - wish i could take my own advice!

dorcas

Hi,

You can complain about hospital based services by contacting the hospital administrator for the hospital where you attend.

The nhs helpline 0800 22 44 88 will also give you advice on who to contact. ( this is the number in Scotland so please check for your area)

good luck!

if I were you I'd be asking my doc to refer me to a different rheummy!

Iris x

cthornley

you could also look at the PAL's - Patient Advice and Liaison services website, my hubby always refers to this as a place of contact for complaints

or you could take my tack and write to the chief executive of the trust (check their website to find out who it is) I find this always gets a quick result although I may have to be more careful with this now my husband works in the same hospital as I'm an outpatient

good luck
hope you get something sorted soon

dreamdaisy

Go straight to the top. I get bored reading all the mission statements scattered around my local hospital: when things go wrong I decide the scale of the insult and either use PALs or write to the head honcho. It's amazing how quickly I get results! I also write to praise and congratulate when things go right.

Make a fuss. Do not meekly accept, complaints channels are there and they should be used. Good luck and let us know how you get on. Dreamdaisy

woodbon

Hi,
I'm sorry you are having all these problems.

I'd do as the others have suggested, go to PALS, see if they can help you speed things up. The hospital I go to have the leaflets for the PALs dept all over the place, see what help they can give you!

I hope things will quickly sort out for you, good luck.
Love Sue

skezier

Hi Missishy,

Hey got you name right I answered you over the other post..... I am so glad these lovely people know more about what you can do and see your not ignored here. Cris x

frogmorton

Hi

This is awful

I think as other including Iris have said you need the help NOW! and you may need to complain.

Have you anyone to take with you?? You may need the backup of someone when you do go to see the rheumy - so you dont get fobbed off again.

Soory things still arent sorted for you either Bailey but gald the flare is dying down.

Love

Toni xx

dolittle

Hi missishy,

Ask PALS for some help. Have posted about my experience on the other thread Wonky began.
Hope you get some better suport soon.
Dolittle

carolanivey

DO NOT be afraid to be the squeaky wheel! This is your body and your health - you are your own best health advocate. If your pain level is unacceptable to you, you DON'T have to just live with it. Find another rheumie if one is available. I will never hesitate to "fire" a doctor if I don't feel he or she is listening to me - believe me, I've done it before!