Pain Clinic Brought Forward maybe BAD news

Anything to do with the NHS or Private Healthcare.

Moderators: perseus, *Lisa*, FluppyPuffy

Pain Clinic Brought Forward maybe BAD news

Postby piglet_mini » Fri Aug 13, 2010 8:01 pm

I have been waiting since May to see the pain clinic again (I got lost in the system & the earliest app they had was 05th Oct 2010) However today they ring and bring it forward to 19th Aug (a week today) :D :woot: you may hear me cry - UNTIL the lady on the phone tells me it is because my GP surgery has written to have me reassesd for different meds as apparantly the cost to the surgery is overwhelming them (My fentanyl patches are £67.19 for a box 5 - I use 2 boxes a month, My abstral sublingual fentanyl are £149.70 for 30 tablets and I use around 60 a month, then there are the tramadol, cyclizine, amitriptyline, diazepam, mebeverine, etc etc too!) They have mentioned going back to oramorph lots of times as its only £4.95 for a large 300ml bottle but I just cant function on it!
Any one has similar experiences of GP pressuring for cheaper drugs or even refusing to prescribe?
Am getting very anxious :needhug:
The road that is built in hope is more pleasant to the traveller than the road built in despair, even though they both lead to the same destination.
User avatar
piglet_mini
UKFM Member
 
Posts: 97
Joined: Tue Aug 03, 2010 8:06 pm
Location: Northamptonshire

Re: Pain Clinic Brought Forward maybe BAD news

Postby *Lisa* » Fri Aug 13, 2010 8:23 pm

Thats terrible :hugs:

Only thing i can suggest is if it goes all bad then you can contact your local MP for back up.

Iv not been in this position but do know of many fibros who have been disalowed meds for the cost and they spoke to there MP and got help there

Good luck x
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
*Lisa*
MODERATOR
 
Posts: 3903
Joined: Sun Sep 07, 2008 2:01 pm

Re: Pain Clinic Brought Forward maybe BAD news

Postby denys » Fri Aug 13, 2010 10:59 pm

Never heard of it happening to anyone I know before but you read about it in the papers often. It's a scandal and I hope they dont get away with it fingers and toes crossed for you, let us know how you get on :hugs: :hugs:
Denys

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
User avatar
denys
UKFM Veteran
 
Posts: 11901
Joined: Tue Feb 09, 2010 10:05 pm

Re: Pain Clinic Brought Forward maybe BAD news

Postby matthew » Sat Aug 14, 2010 12:06 am

I've had a similar experience to you in the past piglet. I put on a large amount of weight due to a drug called sulpiride (it was used to treat my anxiety). My consultant at the time said he wanted to try me on a different drug - quetiapine - that had a neutral weight profile. Unfortuantely it was very expensive. Eventually he said I couldn't have it as his boss said no.

However, a few months later I told my GP about quetiapine and he went ahead and prescribed it anyway! :)

It was all for nothing however, as I couldn't tolerate it. But it just goes to show that GPs can prescribe expensive drugs. If your GP says he can't afford them then you might do well to see another one.
"I'd rather struggle through life with my eyes open than sail through life with them closed"
User avatar
matthew
UKFM Member
 
Posts: 75
Joined: Wed Jul 22, 2009 12:44 am

Re: Pain Clinic Brought Forward maybe BAD news

Postby Quackers » Sat Aug 14, 2010 9:48 pm

Oh Piglet I do hope things work out for you.
You did however answer a question I was to ask
I am also on Phentanyl patches, 100mcg per hour, and was wondering if anyone else was on this

The Rheumatologist who diagnosed me at the beginning of the week was not pleased at all that I was on these patches and said they are not a drug usually given for Fibro and that he would prefer that I tried to get off them asap.
So would I :!:
I explained that my patches have just recently been upped because of the unbearable pain. I know what this drug is and the implications of being on it but these patches allow me some quality of life.
User avatar
Quackers
UKFM Member
 
Posts: 105
Joined: Mon Aug 09, 2010 10:51 pm
Location: Berkshire

Re: Pain Clinic Brought Forward maybe BAD news

Postby piglet_mini » Sun Aug 15, 2010 8:59 pm

Quackers, isnt it amazing how different Rhums have differing opinions as mine suggested them for me! I hope that they still deem them the right medication as you say they do allow some form of quality of life. They dont cause me ANY side effects which is great!!
Will keep u all updated :hugs:
The road that is built in hope is more pleasant to the traveller than the road built in despair, even though they both lead to the same destination.
User avatar
piglet_mini
UKFM Member
 
Posts: 97
Joined: Tue Aug 03, 2010 8:06 pm
Location: Northamptonshire

Re: Pain Clinic Brought Forward maybe BAD news

Postby Quackers » Tue Aug 17, 2010 11:33 am

Thankyou Piglet. That means so much to me. I know that I just could not go back to the pain I had before I was on my patches. I just had no life at all and neither did my poor husband. Patch days are a bit of a pain, excuse the pun, but other than that I do get by.
What you have said means more to me than you could ever realise :flowers:
User avatar
Quackers
UKFM Member
 
Posts: 105
Joined: Mon Aug 09, 2010 10:51 pm
Location: Berkshire

Re: Pain Clinic Brought Forward maybe BAD news

Postby piglet_mini » Wed Aug 18, 2010 10:34 am

Had a call late monday evening inviting me to pain clinic at 4pm yesterday (instead of 2pm tomo) :? I went along, waited 1hr 40 mins clinic was running late, I was crying I was in so much pain :cry: , I also had to take my children along (aged 2 & 4) so after this long they started to play up. I asked the nurse how much longer she said Dr been called to theatre and there was 2 other ahead of me :( it then got to 2hr waiting kids hungry, tired, and unbearable so I had to leave :( I asked when I could be seen again she said :dunno: no idea!! Computer says END of Oct. There are 26 ahead of me on the emergency/short notice list.

I call GP to tell them situation today and his responce was "We shall no longer be prescribing you the fentanyl patches, abstral sublingual fentanyl or oramorph until recieve some guidence from the pain team" :shock: :shock: :cry: :cry: :cry:

I have 3 days MAX left of pain relief then I am down to paracetamol, tranadol & amitriptyline at night :(

HELP ANY IDEAS????
The road that is built in hope is more pleasant to the traveller than the road built in despair, even though they both lead to the same destination.
User avatar
piglet_mini
UKFM Member
 
Posts: 97
Joined: Tue Aug 03, 2010 8:06 pm
Location: Northamptonshire

Re: Pain Clinic Brought Forward maybe BAD news

Postby Quackers » Wed Aug 18, 2010 11:31 am

Oh Piglet my heart goes out to you. I know exactly what you mean about sitting waiting for ages whilst in pain and that was without children.

As discussed on here before I understand your problem of trying to go without patches. The other thing that REALLY bothers me is that if you try and come off the patches with or without medical supervision the withdrawal problems are horrendous. I dread to think what it will be like coming off all the other drugs at the same time as well!

You MUST see your doctor see your GP about this matter alone! I have been there when my patch has accidentally came off and when some idiot of a doctor put me on a far lower dose. It was not a pretty sight and my husband was minutes from phoning for an ambulance.

He phoned NHS direct and as luck would have it I had some of my old patches left. He was told to put one on straight away. We went to hell and back that night.
I am not saying this to frighten you but to get you to see a doctor about the effects of coming off this drug cold turkey.
If I was you I would contact my local chemist first to get confirmation of the possible effects then go armed with this to your GP.
You MUST see about this. This is a medical emergency!!!

You do so much for everyone on this forum and I am so upset at the thought of you going through this especially with 2 young children in the house. :flowers:
User avatar
Quackers
UKFM Member
 
Posts: 105
Joined: Mon Aug 09, 2010 10:51 pm
Location: Berkshire

Re: Pain Clinic Brought Forward maybe BAD news

Postby piglet_mini » Wed Aug 18, 2010 8:01 pm

Sadie
I am so upset I have been crying all day, it has really not helped with the pain or my anxiety.
I have told my GP surgery they have today to sort this out and I will be arriving at 8:30am when they open tomo expecting to have some form of answers from the GP.
If they dont I will go to A&E and see what they can do. I emailed the PCT that covers my GP today and made an official complaint. They mailed back to say they will call me tomorrow at lunchtime to discuss things.

I am so scared, I know the come down side effects are AWFUL, in this heat my patches dont stick well and on these days I shake, sweat, vomit, cry, have mood swings etc so know full cold turkey be hell.

:needhug: Thanks again for your message it means alot to know someone who understands is thinking of me x
The road that is built in hope is more pleasant to the traveller than the road built in despair, even though they both lead to the same destination.
User avatar
piglet_mini
UKFM Member
 
Posts: 97
Joined: Tue Aug 03, 2010 8:06 pm
Location: Northamptonshire

Re: Pain Clinic Brought Forward maybe BAD news

Postby Quackers » Thu Aug 19, 2010 1:05 pm

I totally understand. But I promise you that under no circumstances whatsoever will you be allowed to go through this cold turkey. :!:
Your doctor will be hung out to dry if he even attempts this and he knows it :!:
Try to be calm, I know it is not easy, but you are totally in the right here.

You have done everything right and remember it is your doctor who will suffer the most if he allows this. He is forgetting that he is not the only medical advice you can seek.

I have had various different consultants up my dose of Fentanyl and all have done this willingly and all have assured me that I was in safe hands. So they cannot all be wrong!
You are doing well and coping even though it might not seem like it to you. You have made all the right moves.

You know what happens when your patch comes adrift so you are more than aware that this silly doctor is WRONG :!:
:hugs: and :flowers: for you. I just wish I could give you a GREAT BIG HUG for real.
You WILL win this battle have no fear :!:
Steritape keeps mine in place when I get too sweaty. Brilliant stuff :wink:
User avatar
Quackers
UKFM Member
 
Posts: 105
Joined: Mon Aug 09, 2010 10:51 pm
Location: Berkshire

Re: Pain Clinic Brought Forward maybe BAD news

Postby piglet_mini » Thu Aug 19, 2010 10:56 pm

:woot: :woot: Had a RESULT!! Sat the doctors surgery for 3.5hrs today whilst they phoned, faxed & got advice from the pain clinic. The pain team told my GP he was irresponsible for putting me through so much anxiety and he was to continue prescribing me my patches. As I have been having so much breakthrough pain (reason why I been taking other meds, sublingual fentanyl, etc) they have increased the dose to 100mcg/hr and see how I go. They will try and fit me in within 21 days if cant will give me a telephone consultation :D :D
Feeling MUCH happier today.
THANKS to you all for your messages of support **ESPECIALLY SADIE(Quackers) xxxxx
The road that is built in hope is more pleasant to the traveller than the road built in despair, even though they both lead to the same destination.
User avatar
piglet_mini
UKFM Member
 
Posts: 97
Joined: Tue Aug 03, 2010 8:06 pm
Location: Northamptonshire

Re: Pain Clinic Brought Forward maybe BAD news

Postby loubie » Thu Aug 19, 2010 11:20 pm

so pleased it all terned out right in the end
even though you should not have had to go through all that in the first place
wot is the matter with them all!!!! you have fibro and are not supposed to get stressed out
they SHOULD all no that :evil:

sending you a :hugs:
loubie x
loubie xx

As a Public Moderator of this forum my opinions/views expressed are personal and are
no more valid than those of other members and not necessarily those of
UKFibromyalgia.
User avatar
loubie
UKFM Regular
 
Posts: 2491
Joined: Mon Jun 08, 2009 8:57 pm
Location: staffs


Return to Doctors & Health Services

Who is online

Users browsing this forum: No registered users and 3 guests

cron