problems with health workers listening skills

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problems with health workers listening skills

Postby normalnutter » Sat Jan 30, 2010 5:41 pm

I have fibromyalgia, and my daughter who is 16 has all of the same problems as me but not so severe, test started last march to get to the bottom of it, ive been fearing the worst of course, the diagnosis is epilepsy, she has no blackouts and has spent the last 3 days asleep because shes tired and in pain, of course I am now known as narotic [spellings wrong] next Thursday a meeting is taking place of the :people that know best: in our home, they are also trying to stop me taking her to a retreat in Farnham for natural treatment, any suggestions on what to do next welcome :crazy:
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Re: problems with health workers listening skills

Postby ladymanvers » Sat Jan 30, 2010 5:55 pm

I sometimes think they haven't got any 'listening' skills; only judgmental attitudes...this is a tricky one.
I suggest that you make a dated (or as near as possible) listed account of your daughter's problems; print off as much research and back up data as possible.
Say to them that you appreciate they have a job to do in filtering the inevitable misguided folks but you're not one of them.
Tell them you do know the differnce between subjectivity and objectivity and that because of your experiences you naturally have concerns for your daughter just in case she has a similar condition. Tell them it's natural that you should have considered this under the given circumstances.
Say you are looking for a diagnosis not an illness.
A person who tinkers with cars as a hobby and who goes to a garage for a diagnostic or a service isn't judged by the mechanic because he has a working knowledge of a car engine and its probable faults so why do medics have such a mistrust of a patient or a person who is well informed in medical matters. It's not an exclusive club and we're not all Munchausen's cases or whatever the term they use now.
Try to keep a calm and reasoned demeanour and say that you're as keen as they are to find the best way forward for your daughter....then pause and let them waffle while gazing calmly and serenely right at them!

Good luck, let us know how it goes!


Ju.xx
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Re: problems with health workers listening skills

Postby Woodentop » Sat Jan 30, 2010 9:22 pm

As a parent, you know more about your daughter than the professionals, so keep on pushing them. Not quite the same thing as with your daughter, but years ago my son had problems at school with reading and general concentration. I knew there was something wrong as my older child was reading well and doing really well at school. Nobody would listen when I told them he needed extra help and they refused to take it any further. Eventually, 2 years later when he was at secondary school they agreed to investigate and he was diagnosed dyslexic. What a change in him when he got the extra help and he went on to do very well.
The thing I'm getting at is that, if it might cost money or you don't fit in with their criteria, they won't do anything. A lot of these people have a degree, but have no children of their own, so don't understand where you, as a parent,are coming from. Stick to your guns, but try not to get too stressed - we know what stress does to us fibromites!
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Re: problems with health workers listening skills

Postby normalnutter » Sat Jan 30, 2010 9:37 pm

HI I have three sons with learning difficulties,and ive already told the :support team: where I come from a spade is a shovel, I have also invited my MP and wrote to the secretary for health, thanks for your help lets get this illness out there, I WILL NOT BE IGNORED
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Re: problems with health workers listening skills

Postby normalnutter » Wed Feb 03, 2010 1:01 pm

HI. Well where do I start, today childrens services have visited, and are comming back next monday, I have also recieved a phone call from childrens disability services, there visiting Tuesday, and they are also looking at funding for the retreat I wish to take my daughter to for treatment [farnham farmhouse] please look your views would be valuable, DLA have been on the phone today, and thursday its mental health and epilepsy nurse together, I am looking at the connection of ocd in fibromyalgia, your comments once again would be valuablem.
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Re: problems with health workers listening skills

Postby normalnutter » Thu Feb 04, 2010 7:05 pm

well, theve been and gone, and are talking like they are listening [time will tell] they have agreed more investigating has to be done on her condition, the ecg says its general epilepsy, but the simptons say lots of other conflicting things,their going to get her back to the hospital in march. they say this will give them time for meetings about both of us? still cant stop my self thinking that their getting paid for a load of old rope and they will be having tea parties together, they reckon anything that you can get in the private sector you can get on the nhs and that we will be recieving it, genetic testing was offered to my family 15 years ago, but everybody had to agree hence it never happened unfotunatly now important people in the gene pool are now gone, I feel quite sad
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Re: problems with health workers listening skills

Postby normalnutter » Fri Feb 05, 2010 2:38 pm

Today the physiatrist and more crises team stayed 15 miniutes but they want to send in the crises team to monitor and learn!!!!! so I have agreed that the crises team may visit tuesday [one day at a time, my name is over the door] I Still dont think they understand that all this company is wonderful, but very exhausting,and that I feel ill most of the time. Thanks for having somewhere to write about this, sometimes I think a bunch of flowers will pop out of the top of my head :banghead:
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Re: problems with health workers listening skills

Postby normalnutter » Sat Feb 06, 2010 3:00 pm

Hey someones being honest today :clap: crisis team rung to see how I am, they are interested in how this [fm] effects my mental health, and they are looking right back through my medical files and asking questions about my 3 sons conditions, we also talked family tree and genetic links, lucky my family tree has already been traced back to 1066 by oxford uni :clap: this gives me hope for our future generations. Has anyone else looked at their family tree, try and find the links :grouphug:
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Re: problems with health workers listening skills

Postby ladymanvers » Sat Feb 06, 2010 6:04 pm

No, never thought of the family tree thing though my cousin is still compiling one on my dad's side.. Glad you feel you're getting somewhere with the medics!

Ju.x
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Re: problems with health workers listening skills

Postby normalnutter » Sat Feb 06, 2010 8:55 pm

Has nobody thought that this [fm] could be the product of what went bang in the night [interbreading] :wink: before we were even thought about :shock: :wave:
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Re: problems with health workers listening skills

Postby normalnutter » Sat Feb 06, 2010 8:56 pm

normalnutter wrote:Has nobody thought that this [fm] could be the product of what went bang in the night [interbreading] :wink: before we were even thought about :shock: :wave:

:lol:
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Re: problems with health workers listening skills

Postby normalnutter » Tue Feb 09, 2010 8:26 pm

well yesterday I was visited by the crisess team and the childrens team, seems somebody is listening and taking me very seriously and thats the diabetic nurse, so today ive had anouther phone call from the crises team and from next monday we will have a community nurse,what this means I have no idea as the childrens disability team was visiting, they asked my daughter about her problems and she told them she could not get out of bed they asked her why and she said because I feel dizzy they then left said her disability was not severe :evil: :needhug: they were very younge and dont suppose they realized that they had one of the original army that put the childrens disability policy as it is now in place, I smiled sweetly as they left. Thanks for this space this is beginging to feel like a bit of a blog. :yikes: :hugs:
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