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Author Topic: Please read, Support would be good right now  (Read 1846 times)

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Offline smeagol

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Please read, Support would be good right now
« on: January 14, 2006, 07:54:33 PM »
Hi
I was referred by my GP to a consultant at my local hospital for my synovial chondromatosis.  This was for a second opinion because my previous OS though it best to "leave it and give me a knee replacement later (Im 19, its not really what you want ot hear)" rather than do an open synovectomy.  My physio recommended I was referred to the guy who specialises in stranger knee problems because its a rare condition.  So my GP sent off the referral for this particular OS.  I hadnt heard after 3 months, no letter or anything, so I told the GP this.  She the re faxed the referral.  I heard two days later (surprise surprise, annoy them and you can get through).  I opened the letter and I had been referred to a different consultant.  I was to fone and arrange an appointment with him.  Fine i thought, I'll look up this guy on the Dr Foster site t see what area he does specialise in.  So I looked up under leg problems etc, how you do, and he didnt come up, i searched under all OS's in that hospital, aha, there he is.  It turns out he isnt even an OS, let alone a knee specialist!  He was a trauma guy, specialising in FRACTURES!  I dont have a fracture, nor do I need a trauma surgeon, so why oh why am I seeing one???!!!  With something like this it is rather important I see a good knee specialist.  Turns out they dont think so, they didnt think I needed a knee specialist, not even an orthopaedic specialist!  Why cant the NHS get sorted and actually refer me to who Im supposed to see within 4 months.  Im in constant pain and have been for many years now, its stopping my life, but to them it doesnt seem to matter at all.  Sorry to be all angry and dragging on, but it hurts when the healthcare service doesnt do anything.  Im now having to spend my student loan (not enough to live on as it is) on a private consultation, so I can actually see someone who cares, even if it is just because im paying them to. 

Sorry for the depressing post, and thank you so much for reading.  Any experiences/advice/comments are very much appreciated.

Charlotte
About 10 years of pain, 3 arthroscopys, and still no help with my condition or my current problem.  And I'm only 20!

Offline smeagol

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Re: Please read, Support would be good right now
« Reply #1 on: January 14, 2006, 08:49:27 PM »
Just to add
How do I get hold of my medical records so far regarding my knee? 
And has anyone been to the Droitwich knee clinic or the london one?
Charlotte
About 10 years of pain, 3 arthroscopys, and still no help with my condition or my current problem.  And I'm only 20!

Offline rozzzie

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Re: Please read, Support would be good right now
« Reply #2 on: January 14, 2006, 08:59:15 PM »
Charlotte,  OMG!  I can't believe there doing this!  What is going on in there heads??!?? 

You should be able to get  copy of all of your records.  You usually need to ask in writing and may have to pay a fee foe coping.  If you request copies of the pictures you should be able to get those too.  The hospital records need a separate request to the hospital, but you can get them.  I know this works in the US but from what I've read here, the same should work for you.

Sending you HUGs and wishing you the best!!

Rozzzie
OA of knees since 85 
93 scrambled ankle - PE
98 PE
99 anlke fusion
04 hit by car broken leg, ribs AC joint seperation
RTKR  Dec 1 2005
LTKR. IM rod removal March 16, 2006

Offline smeagol

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Re: Please read, Support would be good right now
« Reply #3 on: January 15, 2006, 08:43:58 PM »
I have given up all hope with the NHS and am going to pay to have a private consultation.  Does anyone know if i can get a consultation at Droitwich then go onto the NHS for an operation as I dont have a spare few thousand pounds for the operation?
Charlotte
About 10 years of pain, 3 arthroscopys, and still no help with my condition or my current problem.  And I'm only 20!

Offline sarah81

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Re: Please read, Support would be good right now
« Reply #4 on: January 15, 2006, 09:18:18 PM »
Hi Charlotte

You can request copies of your medical records from your doctor under the Data protection Act. They are not allowed to charge more than £10 if it is just printing computerised records, but they can charge up to £50 if its a mixture of manual handwritten records and computerised records.

Does anyone know if i can get a consultation at Droitwich then go onto the NHS for an operation as I dont have a spare few thousand pounds for the operation?
I am not sure about this - I expect you could do it, although you would still have to wait on NHS lists.

Sorry to hear about all the trouble you have had - the NHS are really bad...

Hope you get some good luck soon

Sarah  :D

Offline smeagol

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Re: Please read, Support would be good right now
« Reply #5 on: January 16, 2006, 07:25:24 PM »
Thanks Sarah.  Ive sent a letter to my doctor requesting copies of everything, so I presume he'll send me a form to sign and the cost.  then at least I'll have everything for when I see the new OS.
Charlotte
About 10 years of pain, 3 arthroscopys, and still no help with my condition or my current problem.  And I'm only 20!

Offline jillo

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Re: Please read, Support would be good right now
« Reply #6 on: January 17, 2006, 07:05:29 AM »
Smeagol you can get a private consult and then be referred to the NHS for surgery- I nearly did just that a few years ago.  Get back to your GP and tell them there was a mistake!  You need to see the right specialist or it's a total waste of time.

Offline smeagol

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Re: Please read, Support would be good right now
« Reply #7 on: January 18, 2006, 10:35:24 AM »
Im not going to see the guy the GP referred me to because there's no point, but I cant get hold of the GP to ask what on earth is going on.  I tried their email, wont send, tried foning, no answer, the only time im there (its on campus) im in lectures or its out of hours so its closed.  I hate the NHS.  Im having trouble finding a knee specialist privately anywhere other than the droitwich clinic, all ican find is general sorts of OS's and with it being an odd condition I really would like it seen by someone who has seen it before.  Any suggestions?
Charlotte
About 10 years of pain, 3 arthroscopys, and still no help with my condition or my current problem.  And I'm only 20!

Offline Naomi

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Re: Please read, Support would be good right now
« Reply #8 on: January 20, 2006, 10:45:27 AM »
Hi Charlotte

I totally sympathise with you. The NHS are awful when it comes to getting things right about knees. I am having similar problems and there seems to be a lack of specialism for knees in the NHS. I had my kneecap removed three months ago and not replaced (at 30, they don't replace them!) and my OS at the time was great - really helpful, but I have now been transferred to a member of his team, who does not understand the case - he wasn't at the operation and was looking through my x-rays last time I saw him (why was he doing this - I have no idea - I have no kneecap to consider anymore!) Sadly I was not quick enough at the time to question this. I honestly think that when he briefly read my notes, he mistook the operation for a replacement and not a plain old removal. My physio also has little experience of knees and no experience of kneecapless people!! Its all very frustrating. All I can recommend, is that you keep plugging away - which is what I'm doing - I verbally requested to see my notes and as yet, don't have them, so I am going to formally write and ask them. I also had a pulmonary embolism before Christmas and the thing I have learnt from these two spells in hospital and about dealing with the NNHS is question everything and everyone and keep pestering until you are happy with the outcome. Don't give up, remember its your knee and your ability to walk properly in the future - keep fighting them.......Get back on to your GP.

My dad put his finger on it - any specialist knee physio and surgeon in this country will be working for a football club or privatley and not in the NHS - they are rare beasts to come accross, so I wish you luck - let us know how you get on.

Naomi
x
16 Oct 2005 - Patellectomy
1st Dec 2005 - Full leg cast removed
4th Dec 2005 - Pulmonary Embolism
2nd Feb 2006 - ROM 55 degrees

Update Feb 2007!
All's doing very well - rom is nearly back to normal - still need to work on strength and stamina.

Offline Linds

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Re: Please read, Support would be good right now
« Reply #9 on: January 20, 2006, 12:36:08 PM »
I am sorry you are going through such frustrations and pain at such a young age.
Hang in there...
HUGS
Linds
1997 Scope RK
2002 LR RK
2002 Scope and hematoma evac RK
2004 LR LK
May 06 Fall from Horse, partial ACL tear and meniscus injury, Tibial plateau injury
2007 Scope, Plica Excision and Debride LK
2009/2010- Possibly Ankylosing Spondylitis?

Offline misshilde

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Re: Please read, Support would be good right now
« Reply #10 on: January 21, 2006, 06:00:45 AM »
Don't your gp have an anwsering service or a machine? I  so I'l would start leaving messages every chance I could get through..or a certified letter..just keep at it.. sooner or later you'll get relief..hopefully sooner..good luck

hilde
born with bad knee
83 patella ligament pierced by iceicle
84 50%  hamstring rip
86 lateral meniscus tear
more dance 
99 menisectomy(finally)
more dance
patellar & quad tendontis
05 LR, bonespur removal, general clean out, stage 4 OA
oct 06 illiophoas release( hip ok) but knee still bad...

Offline jillo

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Re: Please read, Support would be good right now
« Reply #11 on: January 21, 2006, 06:49:17 AM »
Smeagol- where are you?  I might be able to give you some recommendations- send me a message.

Offline v myhill

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Re: Please read, Support would be good right now
« Reply #12 on: November 27, 2006, 09:23:38 PM »
i have synovial chondromatosis and just had removal of a large tumour after  time with pain and limited flexion in the knee limping everywhere this condition is not recognised as far as any benefit financially is concerned work but can only work part time so reduced income for this condition also in my thirties operation  sucessful  on cruthes as mustlse wasted havin hydrotherapy



















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