Treatment

Nicchick

Hi and I hope everyone had a nice weekend - I had to rest yesterday as my right hip decided to lock and I was in agony, every movement hurt even after tramadol, celebrex and diazepam! Much better today though, thank goodness!

OH was also in a lot of pain yesterday and prescribed himself a 'lazy day' so whilst I languished on his sofa we talked a bit about the meeting I'm to have with the complaints department at the hospital with regards to my treatment. He's worried that making a fuss will cause trouble and that I should accept that they have done the best for me and I should just accept that this is how it will be. He has had 20 years of it and been through the system so knows a lot about it. I have tried explaining that it isn't so much the treatments, as in sulfasalazine, methotrexate, the NSAIDs that I'm complaining about, it's the lack of communication between departments at the hospital and my GP (missing letters, results, referrals) the frequency and timings of consultant's appointments, examinations, tests, x-rays etc.

I know he's just worried that I'll be disappointed but I do feel I have to fight for better treatment, it's there and it might work for me, I have to at least try!

Rant over!

Nic x

stickywicket

I'm sorry about the hip, nicchic, but at least it's feeling better today which is something.

To complain or not to complain? I guess, from time to time, we all have tough decisions to make, and then live with the consequences. I can see both sides of the argument. It depends how important it is to you.

Do you think your OH might be worried that it would all impact on him too?

Trayce

Glad you feeling better

Soretoe2

Hello nicchick, Just wanted to offer my sympathy.
Many of us with long term problems who endure endless treatments of various kinds get really fed up with the relentlessness of it all.
I''ve had a lifetime of it and have had lovely docs and quite frankly awful ones that have treated me really unfairly.
Many times I've turned up for an appointment, which for me is a painful and prolonged process, only to find they 'can't find' my notes or the latest scan/x ray/whatever have not arrived in time for the doc to evaluate how it is.
Once 3 years ago I had the very humilitating experience of the consultant throwing a hissy fit and refusing to see me at all, after leaving me till the end of the surgery, which was 4 hours after my appointment. For the first time in my life I burst into tears in the waiting area.The staff were very kind and arranged a taxi, paid for by the hospital to take me home. They then arranged an appointment for the following week with another consultant surgeon, who was lovely and within a few months I had my op.
My hubby went bananas I can tell you but I decided to let it go, partly because I want a peaceful life and also because I managed to tell myself he was a jerk and not worth the bother.
I think the trouble is there are too many of us needing urgent appointments/check ups/follow ons etc; The staff level has been reduced in most hospitals, the system is a great big elephant that creaks along, making mistakes along the way and trying to hide them. There are good staff and bad staff at all levels.
I just try to be as polite and friendly as I can even when I have a ratty highly paid consultant in front of me who thinks I'm a bit of a nuisance as he can't do a lot for me and my notes have been mislaid. They love a nice plain broken leg that they can fix and show how clever they are. Chronic conditions are so much harder to deal with. I also think the nice ones must feel bad for us as they feel a bit helpless sometimes.
Tomorrow I have a follow up appointment following an operation 6 months ago that didn't go well. I am secretely dreading it as unless I'm lucky something will not be quite right.
Somehow this post has grown a bit. You have touched a nerve!
Good luck in whatever you decide to do. Joy

frogmorton

Hi Nic

Sorry the hip was playing up so badly yesterday ouch! Glad it's on the mend today though.

Your OH sounds a proper sweetie and very experienced in the same sort of area. I think maybe he is worried that the stress of it all isn't good for YOU.

Only you can decide what to do in the end. I have complained in the past (usually over other people's treatment not my own - Mum after she had died though because she was sacred of repercussions) and at other times ignored things.

You will know what you are happy to settle for in time. My very dearest friend had to take a complaint to the highest levels when her husband died of complications to do with cancer. She WON and is responsible for changing cancer-care for all of us in this area now. I am very proud of her.

Soretoe's experience sounded dreadful. Joy I am so sorry that man was so nasty and am glad it all sorted in the end. the kind and considerate care shown by the other staff probably helped no end.

Love

Toni xxx

Soretoe2

Hi Toni, thanks I appreciate your comment. It was awful and has taken me a long time to get over it.
If it hadn't been for a few kind souls I think it may have pushed me over the edge. But hey, life's like that sometimes.
Just an illustration of how it can go wrong for many of us through no fault of our own, other than being ill.
Having long term chronic illnesses is bad enough in itself but when people who should know better treat you badly, appointments get postponed /cancelled or lost completely and records go missing, with no apology or even a decent explanation It makes me despair.
Sorry nicchick to hijack your post. I truly hope you can sort out how you feel, it's a rotten thing to have to put up with on top of being poorly. Joy

Nicchick

Hijack away ST!

Your treatment sounds as bad if not worse than some the stuff I've had thrown at me, and as you say it's bad enough to feel so ill, tired and sick but to have to endure all of that too is maddening!

Thanks everyone for the reassuring words and I know that the OH is just afraid that I'll get my hopes up and then be disappointed. I feel that I shouldn't just settle, not when I know there are treatments available. He is such a sweetheart...big, butch fella with tattoos who worries about getting his washing, ironing and housework done! He's in a lot of pain all the time and yet never moans!

I've been packing parcels so am having a sit down with a big cup of tea and some fudge to celebrate

Nic x

PowerOn

Hi Nicchick,
Terrible that things that should be easy are made so difficult, yes if you are able to complain I think it is best to do so.
I have complained a few times at my medical center, it does get things moving.
After advice on this site I requested my medical records and have been amazed at what was on them or not included or written completely wrong.
Some of my notes were not given to me and I was told they did not exist but I did manage to keep calm and repeat the request until I got most (not all yet) of my notes.
When you go to a specialist do you ask them to add you to receive notes that are sent to your doctor so you can see what they have said and bring those notes to your gp or whoever needs to see them? That way if they lose the notes you can give them yours.
It is a difficult thing to have to do but I have found sometimes it brings an improvemnet in how they treat you.