Why can't I order My Own Tests?

[golden]

I feel really annoid about this.

Up until last year I was under the impression from the NHS that there were no tests.

Even when there is something to be tested for- they don't bother.

Ok, I can accept this. They are rubbish.

So I started to empower myself and learn.

I find I am capable of discerning and being cautious with testing and have to date had one blood test privately.

I rung a private hospital to find out about an ultrasound , pelvic area. I explained I no longer have a doctor.

I was told I had to be referred by a doctor or else I may try to say I was assaulted under law....

What? what rubbish? not only would I be going voluntarily to the private hospital for the ultra sound... no doubt

I would be obliged initially to sign all my rights away anywAy as standard procedure. What new nonsense is this?

she had never met me before, this doctor simply said it is silly but this is just the way it is.

Now there are some blood tests eg. intrinsic factor, cortisol, negalase I may find useful but even though it is MY body, MY time and MY money paying them - This business want me to get permission from a 'doctor' first (costing me more money) before they will do it.

Its about as useful as them needing permission from my dog first.

Are there labs who allow you to be independent and empowered out there? I want to support these.

 

[maryb]

Eh golden - been there, done that several years ago .

Don't make me laugh - independent and empowered patients in the NHS system

We can't have patients running around with results of blood tests pertaining to their own body. No us doctors have to sanction everything so that we have complete control and knowledge about YOUR health status.
Of course we don't really give a sh@t and only follow NICE guidleines which mean you get nothing but basic tests.

And all NHS GPs apart from the rare one who puts his neck on the line will do the same.

Some labs do have a doctor on site who will do blood testing, depending on where you live its either an option or not.
Think Biolab is one - others will know more than me. That may be your best option.

 

[Plum]

Places like Biolab etc still need you to be referred or see one of their staff first. This costs money - again! I have managed to get some tests done through Genova but only because I have a friend who's a qualified Nutritional Therapist and he could refer me. You can't refer yourself. It is so stupid and frustrating. And, to make matters worse - the price they charge you includes a fee which goes to the referring practitioner. I would suggest you find a good Nutritionist or Naturopathic Dr who would possible cost less than see a qualified Dr to get referred to Biolab.

 

[ukxmrv]

I've never used this company (and had forgotten about it until I saw your post). Someone posted this link a while back and I kept it.

http://bluehorizonmedicals.co.uk/sh...rx6cfurGavB4AMlKMXOo3k5kGFFqUcWqF&shop_param=

Once you have ordered your private blood tests online, we send out your pathology pack by first class post. You then attend one of the many locations available for phlebotomy and send off your sample to the Doctors Laboratory in central London. Results are often available the next day!

Quality Laboratory Pathology

The Blue Horizon Medicals Laboratory service provides patients with private blood tests pathology of the highest quality. Patients can choose between attending our blood tests london laboratory or may also attend one of the hundreds of blood collection locations throughout the UK which we can help you find.

Our pathology is provided by The Doctors Laboratory (TDL) in London. The quality of results is of fundamental importance and both Blue Horizon and TDL operate to stringent technical and administrative standards. Internal quality assurance is achieved by strict adherence to standard operating procedures for all analytical processes. The laboratory participates in all recognised National External Quality Assessment Schemes, which are subscribed to by all NHS and private laboratories and results are subjected to strict internal and external quality control.

Should any of your results be outside of the expected ranges an experienced Doctor from our medical panel will provide analysis.

 

[LisaGoddard]

Hi, I have been trawling the net today for stools and other tests so this is a very timely post. I am going to try getting the tests at my GP but as you all have posted here, in the UK, the likelihood is very low. I came across Dr Myhill's site for various tests - not sure if any of these are relevant to you.
http://www.drmyhill.co.uk/wiki/Ordering_Tests

 

[Plum]

That is a very good link for blood tests done privately. Pity you can't pick and choose more for what you want.

I have looked in Dr. Myhill's tests a lot and am considering her mitochondrial one in the future when I have the money. Genova does a good stool test but it costs a lot - £250 I think. But it does look for a lot of things and checks things like friendly bacteria balance etc. The GP tends to just check for things that wiggle!

Something which I think is important, at least to me when it comes to tests is - what do you plan on doing with the information that the test provides? Can I get the treatment I need? Do I agree with the treatment being offered etc. I think this is important. For example, with ME there are so many viruses which could be making us ill but if I go and fight with my GP to get tested there's no point because the NHS won't give me treatment for it. With Dr. Myhill's mitochondrial test, whatever problems they show up involve costly supplements which right now I can't afford - you get my point. Testing is important if you can do something with the results.

 

[golden]

i can't reply to everything i want to say right now but the Dr Myhill website looks informative.

http://www.drmyhill.co.uk/wiki/Category:Tests

However go to 'placeOrder' on this link

and you are informed you must be courteous to your doctor by informing him you are paying someone privately for tests.

And also she states 'and I will be sending a copy of your test results in every case'.

Considering the website is about empowering the patient, i find this statement disempowering and a bit rude. (only this little bit)

I feel frustrated because I am having difficulty putting it into words. I do hope others understand where I am coming from.

Firstly, I have received a lot of abuse from doctors in varying ways. Much like a domestic abuse scenario where they tell you you are making it up, its all in your head and then lie about tests which under a good doctor you would be getting. They are bullies and the worst of them appears when you say no to them or make attempts to stand up for yourself.
So why would I want to extend courtesy to that? Not only that but these are tests I would be paying for because they won't. Either due to their funds, poor listening/patient skills , incompetence, due to a lazy or sexist attitude that it must be depression etc...

the amount of stories now of patients being fobbed off as having stress, depression, etc as a base diagnoses plucked out of thin air is disgusting. Some of the actual missed diagnoses In these cases were brain tumor, leprosy, t.b. etc all resulting in death.

If you do get tested it is half hearted with inability to systematically work out what is physically wrong with you.
And so after a lousy thyroid test or b12 test again there is the all conclusive proof that 'nothing is wrong with you'.

Now, why would I want MY test results sharing with that?

Or the post man or the cleaner.

I paid for the test about my body, it should be mine to own and do what I wish with.

 

[maryb]

golden that was one of my gripes - why should my GP get copies of my privately paid for blood results when they don't give %$&* about me?

 

[snowathlete]

It's crap in the UK isn't it? These are some of the reasons why I went to see De Merleir in Belgium in the end.

Cant get them in the UK. I found a local private hospital who would do blood draws, process and send it off, but without a doctor ordering the test they couldn't help. It's a monopoly.

And like Plum says, I figured even if i got round it somehow (thought about getting needles and doing the blood draw myself - not that i advice it) the NHS would just ignore them as they arent their own 'reliable' tests - even though you cant get them...so i figured going to Belgium was worth it. test for test it was cheaper in Belgium than here too, and its nothing to do with the crappy NHS (they dont get copied etc, unless i chose to give it to them)

 

[golden]

yes, exactly.

Not only are the NHS doctors not concerned, they are not equipped to interpret the results correctly. And to be honest, until we get to the bottom of the issue, all that would be happening is a pile of private blood tests would be heading to the G.P. possibly saying within range - you know until we find the right tests outside of range which takes money. In the meantime all this would serve is more tests which show there is nothing wrong and add to the case of psychological diagnoses - there is ppossibly even a psychiatric diagnoses for any patient even seeking their own tests!

And if the NHS had to see a psychiatrist, my what a long list of mental illnesses it has.

Comparing past G.Ps in the system to domestic violence may seem far fetched but on scrutiny its not that far away (not all domestic abuse involves physical violence) although some M.E. patients upon saying 'no' to psychological treatment for their physical illness have been section and physically abused.

Within the medical profession itself, I believe its a patriarchal system. Doctors bully Nurses, Nurses bully new doctors, Nurses bully Nurses (this is called HORIZONTAL VIOLENCE ), and they all bully patients.

I suppose taking the horizontal violence example we could say we are enduring 'downhill violence' LOL just can't find adequate labels for it as I have rarely seen these issues talked about. And of course any medical who tries to stand up for the patient is subjected to a witch hunt including whistle blowers .

I think only be allowed to buy a blood test with the permissions of others somehow ties in with all of this.

I am trying to find succinct concepts to sum it all up.

 

[golden]

It's crap in the UK isn't it? These are some of the reasons why I went to see De Merleir in Belgium in the end.

Cant get them in the UK. I found a local private hospital who would do blood draws, process and send it off, but without a doctor ordering the test they couldn't help. It's a monopoly.

And like Plum says, I figured even if i got round it somehow (thought about getting needles and doing the blood draw myself - not that i advice it) the NHS would just ignore them as they arent their own 'reliable' tests - even though you cant get them...so i figured going to Belgium was worth it. test for test it was cheaper in Belgium than here too, and its nothing to do with the crappy NHS (they dont get copied etc, unless i chose to give it to them)

Just seen this post - Im off to Belgium

A Monopoly - that's a good summary , I was thinking of like a boys club...

I am happy to hear you can choose who to divulge your medical data to
It can be done

 

[maryb]

B/spear like KdM give you copy letters for your GP if you wish to pass them on, but its up to the patient.

 

[Plum]

So many awesome replies! Can't read them all right now but will later tonight. Did just want to comment on the Myhill gripe - I completely agree with you BUT I think the reason she has to work this way is because she is an NHS Dr and under their rules your GP has to be informed etc etc. She has actually had a lot of problems with the GMC because she helps patients and will prescribe B12 etc. If you go onto youtube and look for her you will see some clips explaining what happened to her etc. The system here in the UK is shite.

If you want to follow a medical protocol the guy in Belgium seems good but I prefer a more natural approach and therefore have used Naturopaths and Nutritional Therapists ontop of a load of research I do myself. I am so sick of the NHS and Dr's in general that I basically treat myself after a lot of research and using supplements, diet and herbs.

 

[maryb]

I agree plum, I think Dr m/hill is great and I understand the reasons why she works as she does but I still hate the fact that my absolutely useless GP gets to know anything.

ps. just like any chance to rant about NHS GPs NICE ..............

 

[justy]

Hi Golden, i understand your situation entirely. Its all very shit under the NHS and the way we are treated by NHS doctors is often appalling. But im afarid i will have to defend Dr Myhill and her site. I imagine that due to the constant harrasment that she has faced from the GMC over the years that she is most likely obliged to provide GP's with the information from the tests. She has been accused wrongly of many things and has to have this level of transparency in order to keep her license. Just a thought, i dont think she is in a ny way invovled in an old boys club.

The link UKXMRV gave is very interesting. I have bookmarked it for future referance - but the tests they offer seem quite basic - although i notice they have a CFS panel - HHV6 EBV etc.

All the best, Justy.

 

[Plum]

I find it very patronising how Dr's communicate with each other and the wording they use. I have honestly given up with the NHS. We recently moved to a new area and after registering with one GP I had to change as I had an appalling experience - no ME related. The new GP was just as bad. I can't even bring myself to discuss ME stuff with them. They are beyond actually helping their patients.

I am in favour of their being no NHS but I know that this annoys a lot of people. I just don't feel it serves us anymore.

 

[golden]

hi justy ,

I see Dr Myhill has endured much invasive behavioural manipulation as she has been forced to comply with 'the boys club' for want of a better phrase - i am still searching for the best terminology. I am sorry it seems like an attack on her, it is not. But it is a criticism of the wording.

If this is true and Dr Myhill is somehow legally obliged, even when being employed as a private Doctor, to give copies of MY medical information to the boys club, I would have preferred something like this:

Whilst it would be courteous to ask you if you would like me to send copies of our consultation to your NHS doctor,
unfortunately, in this instance, by law I am legally obliged (state reference to law)....

If you also look at her website she does state it is in flux and she will update any issues should there be good reason. This is a very healthy sign of flexibility and wisdom.

I understand the M.E. community already only has a tiny percentage of doctors who treat it as a physical disease and Dr Myhill is one of them. Which un itself is an act of healing.

I am not liking reference of M.E. to a personality type. I think a contagious illness doesn't think this way also I am not liking reference to 'hypervigilance' as part of an M.E. issue. By the time a symptom is screaming at me... it does become bothersome, yes but that's not me being 'hypervigilent'.

Just minor ruffles.

As a whole profession however, its language use is very indicative of its methods of enslaving patients.

I do enjoy Dr Vernon Coleman s life story , although again I don't agree with everything. I think he is the biggest whistleblower there ever has been. And get has reported it all to the public - as it should be - through his books. He really does attempt to give patients back their own bodies

Its interesting too isn't it that after working as a G.P. for seven years, the best way he could carry on helping them was to stop working in the system as he could see all the damage that was being done and he rained firm to his oath: first do no harm.

 

[justy]

Yes Golden, i can only agree.

 

[vamah]

If it makes anyone feel better, the situation is no different in the US. I have had many fights with my doctor over refusing to run tests. My HMO's infectious disease "specialist" refused to test me for EBV, HHV-6 and CMV because these viruses could not possibly cause my symptoms. I found a doctor who would order these tests and paid for them myself. Turns out my HHV-6 titers are through the roof. Now my HMO is investigating whether or not their doctor did anything wrong and whether they will cover treatment for HHV-6. Duh!

 

[overtrain]

If it makes anyone feel better, the situation is no different in the US. I have had many fights with my doctor over refusing to run tests. My HMO's infectious disease "specialist" refused to test me for EBV, HHV-6 and CMV because these viruses could not possibly cause my symptoms. I found a doctor who would order these tests and paid for them myself. Turns out my HHV-6 titers are through the roof. Now my HMO is investigating whether or not their doctor did anything wrong and whether they will cover treatment for HHV-6. Duh!

Exactly just like here in the U.S., as I was about to comment. "because these viruses could not possibly cause my symptoms" - Same line tried on me, with the addition of terming CFS "A Fad"... I'm heartened at least your trmt is being investigated. I have no recourse. How many are there like us out there too sick to fight back, too broke to do anything? How many gone from "natural causes"? I so can't wait for the day biomarkers will get recognized, discovered, whatever it takes, so doctors will be forced to recognize this condition and *eat their words*.

Cheers from flyover country, us of good old aye. =)