Apparently it's now ok to wheel a ch patient in a kip scale 10 attack in a waiting room on a porters chair trying to literally knock themselfs out infront of everyone and dump them there --
Yep my worst CH moment has offically happened
I visited my local walk in to see the oncall physc yep wasn't a great moment in my life the ch has really been taking its toll lately, i went to see the physc for help, yeah help that was the whole purpose of this walk in visit HELP for my "suicide headaches" they reached that point
I briefed the nurse who admitted me that I have CH and what the hospital needed to do if I had a attack in the department, like I completely pre warned them and everything just in case
I wasn't in a state to keep myself safe come on that's why I was there
It just had to happen didn't it the dam beast just couldn't stay away and the result with haunt me for the rest of my life
Cut the story short during my kip scale 10 this was my treatment
"Go home and come back When you feel better"
"It's going to take 6 hours to arrange oxygen because you don't need it"
"What do you expect me to do about it "
Matron tells nurses to "put her in the waiting room she's only got a headache she's after drugs " wwwwwhhhhhaaaattttt ?????
I'm screaming don't do this to me don't do this to me..... they still did it
I was left on a porters chair in a kip 10 trying to knock myself out cold screaming possessed infront of everyone to see like a freak show --
Were do I even start with my complaint to pals
How are you ment to educate the nhs I just feel like I'm going to make no difference at all with my complaint
Maybe it's me in my state of mind but surley my local hospital can do better then that
Left feeling like a freak show humiliated and never want to walk in the place again --
Can my complaint really make a difference? We're do I even start? Any advice appreciated
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Submitted by DavidH 7 on Mon, 04/02/2019 - 19:58
PermalinkI'd make a written complaint
I'd make a written complaint in as calm and rational way as possible - it may be worth making sure you're clear on the complaints procedure, first. It might change things "next time", for you or others. Even if you don't get the outcome you want, it might make those involved reflect on their actions.
I must admit that I can see how this would easily happen - I can't communicate well with those around me when I'm having a bad attack and I can get that others might experience this as something other than "having a Cluster Headache". That doesn't make your experience acceptable though.
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Submitted by Anne - OUCH UK on Sun, 10/02/2019 - 13:06
PermalinkDreadful experience and agree
Dreadful experience and agree that a written complaint is needed here, when you feel up to it. I'm just wondering whether you carry an OUCH information card, designed to explain about CH when you are in the middle of an attack - it might help people understand you have a genuine and severe medical condition. If you don't have any already, you can get a pack of 5 cards on the OUCH online shop for £1 plus postage. All the best.
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Submitted by Kelly Kitching on Tue, 19/02/2019 - 11:34
PermalinkI totally feel your anger and
I totally feel your anger and frustration.
Although my experiences are no where near as awful as yours I am sick and tired of reaping my suffering to different doctors. It's been years since I have seen a neurologist as apparently the last one said there's nothing more they can do.
I have just recently moved areas so have had to start the whole cycle of explaining it, waiting for notes to come over before meds would be given in probably the worst episode I have had for a few years. Finally got meds only to be told after 2 prescriptions how much I'm costing the nhs and they will stop my meds if it continues. Managed to finally get oxygen but only one cylinder at a time so phoning most days to have replaced. Doctor finally called today but taken since Christmas to get that far to ask for more. No joy with referral to neurologist as yet. Had a brief respite period for 2weeks after steroids but been constant now since October. I am so tired, depressed, every joint hurts, legs like pin cushions I totally give up now. Suffered for 20 years and I never seem to get help from doctors. I just don't feel me anymore more like a robot on its last battery. I have give up complaining aswell
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Submitted by Val on Mon, 18/03/2019 - 09:26
PermalinkKelly, under the NHS scheme
Kelly, under the NHS scheme 'Choose & Book, Choice at Referral' you are entitled to ask to see a consultant of your choice even if that consultant is out of area. This scheme applies in England and Wales. The nearest to you is I think at University of Wales Hospital, Dr Trevor Pickersgill. For a faster appointment y ou could ask your GP ro refer you to the Rapid Access headache clinic at St Thomas' Hospital, run by Dr Lambru. The referral would need to be by e-mail and the GP would need to look at the 'doctors only' part of the St Thomas' website to get the e-mail address. There are other headache neuros in London, but this one is suggested as there is likely to be a shorter waiting time. If your GP has already written a letter of referral, then you are also entitled to ask for a second opinion referral.
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Submitted by Ihpatterson on Fri, 26/04/2019 - 19:32
PermalinkI had to research my CH
I had to research my CH condition myself and later with the help of OUCH! GPs had to be told by a Neuologist what to do, but it took a £140 private consultation to get anywhere. One successful strategy is to research Neuologists by qualifications and interests in their CV on your local private hospital website “ consultants” section.
indeed this is a good strategy to get GPS attention for any condition, usually £150 or so well spent.
Or get an initial free consultation with a solicitor specialising in taking action against the NHS. There is no excuse for the way you were treated.
I am now retired, but for many years was a Medical Physicist consulted by hospitals, universities and device manufacturers around the world and I confess that the NHS is so bad in comparison with most first and second world systems it is beyond a joke and it not because of any comparative lack of money. Other countries do much more with similar national spending.