Starting MTX

[D Foster]

No, it's the privacy laws, Fred. It has stuffed up much communication that was hitherto straightforward. Send your thanks to the UN.

Cheers,

Bill

You're probably right Bill the Brits do follow the rules that the others make.  

Here my dermatologist can get hold of blood results from my neurologist as can my GP and vise versa. But as an extra back up I always get a copy through the post too.

My GP,derm and every other dept here in East Yorkshire have access to all my info on System One which is the latest computer system in the NHS plus I also get a copy of each visit by post, the derm is through BUPA but is still on the System One.

[jiml]

No, it's the privacy laws, Fred. It has stuffed up much communication that was hitherto straightforward. Send your thanks to the UN.

Cheers,

Bill

You're probably right Bill the Brits do follow the rules that the others make.  

Here my dermatologist can get hold of blood results from my neurologist as can my GP and vise versa. But as an extra back up I always get a copy through the post too.

My GP,derm and every other dept here in East Yorkshire have access to all my info on System One which is the latest computer system in the NHS plus I also get a copy of each visit by post, the derm is through BUPA but is still on the System One.

Same here in Norfolk Dave my hospital records are available to my GP and vice versa

[Caroline]

No, it's the privacy laws, Fred. It has stuffed up much communication that was hitherto straightforward. Send your thanks to the UN.

Cheers,

Bill

You're probably right Bill the Brits do follow the rules that the others make.  

Here my dermatologist can get hold of blood results from my neurologist as can my GP and vise versa. But as an extra back up I always get a copy through the post too.

There is no privacy in the UK Bill... David Cameron knows everything.    

But the french approach would be simpler. Contacts between specialists directly is the most secure. And the easy backup at the patient is brilliant in having all information together and privacy protected.

Over here they are also busy designing an overall system called the EPD, Electronic Patients Dossier. They take care of everything, privacy is done in such a way that only the ones that need your info can access it. (yes, and we believe that). Of course that is a gold mine for the insurers. Everything of Everyone should be in there. So also my psoriasis, my limp, my dyslectic nature, my schizophrenics, my bad eyes, etc are kept in there (btw, only the first is true   ).
And to make it a major disaster, they designed an information transfer point, where everything flows through, at the company CSC... Computer Science Company. A more than American Organization. So all our data is for the grab to the NSA and CIA.   A more brilliant design is not possible to my opinion.



But.. .Pingu, really do enjoy your Beer !!

[Bill]

The integration is good, but it is a nuisance to go from system to system. Fred's idea is a good backup. Smart phones are useful as well if the clinician is happy to let you photograph a record.

Cheers,

Bill

[pingu]

Well I think I will escalate this as the GP that referred me should have a duty to ensure that the hospital has any relevant background information about my condition.

Not at all happy about starting from scratch again and I think on Monday I will need to make that patently obvious as how the hell can they even begin to look after someones health when they don't have access to your medical records.

[jiml]

Well I think I will escalate this as the GP that referred me should have a duty to ensure that the hospital has any relevant background information about my condition.  

Not at all happy about starting from scratch again and I think on Monday I will need to make that patently obvious as how the hell can they even begin to look after someones health when they don't have access to your medical records.

Yes Pingu you have been let down badly, give them hell on Monday .do let us know how you get on

By the way congrats on getting to 100 posts

[Bill]

Hi Pingu,

Try and find out what happened. It may be that the number of hands your referral had to go through could make the situation not unlike Chinese whispers. In any event it is no technical challenge to have information copied and transferred, but if you deal with officious people it can be very difficult. Next time take your smart phone and copy as much of your record as they will let you.

Cheers,

Bill

[pingu]

Thanks Bill

Well I did ask them why they had zero records when I was there and their answer was that half the surgerys in my town connect to half the hospitals in the trust but the other half, obviously my GPs connect to the other half. Which I feel is um suspect to say the least as the hospital trust should have access across the whole trust.

Now as I work in IT I understand that this national database is a challenge plus its a government run project so limited joined up thinking but certainly locally it should and I have worked enough NHS projects to smell a rat.

As regards having your records on your smart phone I don't see them allowing that for the point of security, even though it is my records.

Additionally I have thought about this over the weekend and the drug protocol should be designed to work for me not what works for the consultant. I do recognise that if I was a new patient on MTX then it may be a little trial and error but I see absolutely no need to start on 5mg and ramp it up at 2.5mg every second week when previously it worked ramping it up at 5mg per week with zero side effects.

Secondly taking FA everyday is not something I really want to do.

I am going to suggest an alternative of starting on 10mg if they want to keep it ramping up at 2.5mg we can do that per week until we get to 20mg and then back down to 15mg and see if it keeps my P at bay. With FA taken two days later.

This should be fun simply getting to talk to someone that will listen as the GPs surgery will blame the hospital the hospital will blame the system etc however I feel there should have been some due diligence from my GP to ensure that they had my records. I mean if the case is there is a disconnect in their records system surely this is not the first time and they should have a process in place to ensure these things do not happen.

I can see why private consultants get the big bucks. They actually do a good job.

[jiml]

Pingu you are right and a conversation with the dermatologist is a must, he should understand your point of carrying on with the regime you had success with earlier
Unless your blood results show problems and your kidney and liver function is good... Like you I can see no reason why he's tinkering with the treatment

The fact that you go in with a reasoned argument will let him know that you are well informed, and hopefully he will agree to your sensible reasoning

With regard to your blood results if you ask for them they should print you a set off, every time I have a blood test I ask for a copy, they used to tell me that my bloods were all within normal limits .

I told them I needed to see them so I could see if there was a trend of improvement , or maybe levels dropping. If you know what the levels are you can decide if the dose needs reducing, and if the psoriasis is not clearing and the levels are unchanged and normal, you can argue for an increase in dose

It's just a matter of being aware I think if you ask they are obliged to show you a copy of your results,

Quote:

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if you want to view your health records, you may not need to make a formal application. Nothing in law prevents heath care professionals from informally showing you your own records, you can make an informal request during a consultation or by phoning your GP surgery or hospital to arrange a time to see them , copies of records are supplied only if a formal application for access to the records has been made

Source NHS.com

[Caroline]

It's a strange world, this Great Britain.
Over here if I want to, I can always get my information from my GP. I indeed always request my blood values so I have an overviews of my blood counts over several years now.
I also have all other information with me on my phone.

As even the NSA cannot break into an iPhone, I am reasonably confident that my information is safer than in a hospital system where many people can access it.