Why don’t Doctors communicate with other Doctors

[Neil Cookson]

Hi all.

I’ve had T1 for 20 years, I’m currently 46.
I’ve had problems with my stomach since I was a baby and after repeated visits to A&E with my parents they stopped as the doctor always said it was down to Colic.
At about 15 years of age I went on PPI (Omeprazole) and now on 80mg a day and still experiencing problems with sleep apnea and stomach contents emptying due to weak and dis-functioning muscles.
My Consultant wants to do op but I also have cardio myopathy and several breathing disorders and worried this is just the next step forward with no thought of anything else that could be affecting my ailments because ultimately Doctors are only concerned with what affects them and switch off to anything else.
When I was diagnosed with Gastroparesis 20 years ago it was 6 months after being diagnosed T1.
Gastroparesis takes a long time to do the damage it had, so was there a pre-existing condition that had been doing damage since childhood?
Problem is, it won’t get better and op is very risky. If only someone would sit down and actually listen to me and my history it might trigger a response to a new diagnosis and avoid op with new medication.
All my consultants (Rheumatology, Neurology, Gastrointestinal, sleep Neurologists) have no idea why I’m having all these problems and without mentioning them, there’s a lot and there serious. I suppose my point is that doctors need to get to know the patient personally and for people to talk. I was moved to one Hospital so all consultants can interact after mishaps here and there but after all that, I can usually mention my current consultant and they have no idea who they are and I have to prompt the doctors to look up results to guide him. As I’ve always said, you have to be well and alert when going into Hospital!
All my health team are caring and very nice people but please...just listen. People now have a lot of information at hand and if you have the time and your source is reputable you can sometimes guide and help the Doctors.

Thanks for reading and hopefully you agree.

 

[DCUKMod]

Hi all.

I’ve had T1 for 20 years, I’m currently 46.
I’ve had problems with my stomach since I was a baby and after repeated visits to A&E with my parents they stopped as the doctor always said it was down to Colic.
At about 15 years of age I went on PPI (Omeprazole) and now on 80mg a day and still experiencing problems with sleep apnea and stomach contents emptying due to weak and dis-functioning muscles.
My Consultant wants to do op but I also have cardio myopathy and several breathing disorders and worried this is just the next step forward with no thought of anything else that could be affecting my ailments because ultimately Doctors are only concerned with what affects them and switch off to anything else.
When I was diagnosed with Gastroparesis 20 years ago it was 6 months after being diagnosed T1.
Gastroparesis takes a long time to do the damage it had, so was there a pre-existing condition that had been doing damage since childhood?
Problem is, it won’t get better and op is very risky. If only someone would sit down and actually listen to me and my history it might trigger a response to a new diagnosis and avoid op with new medication.
All my consultants (Rheumatology, Neurology, Gastrointestinal, sleep Neurologists) have no idea why I’m having all these problems and without mentioning them, there’s a lot and there serious. I suppose my point is that doctors need to get to know the patient personally and for people to talk. I was moved to one Hospital so all consultants can interact after mishaps here and there but after all that, I can usually mention my current consultant and they have no idea who they are and I have to prompt the doctors to look up results to guide him. As I’ve always said, you have to be well and alert when going into Hospital!
All my health team are caring and very nice people but please...just listen. People now have a lot of information at hand and if you have the time and your source is reputable you can sometimes guide and help the Doctors.

Thanks for reading and hopefully you agree.

neil, when these issues move forward, they are supposed to be reviewed by a Multi-Discipline Team (MDT), but it could be in your case, the MDT doesn;t have quite the right disciplines involved?

Have you asked specifically for a multi-disciplinary review, bearing in mind your multiple issues and the risk involved with your potential op?

In your shoes, that might be my first step, and if the answer is yes, as who actually attended the review, and what they specialisms are (and look them up). It could be useful to ask those questions in writing, as the letter will become part of your medical record, and it's easy to assert that if something isn't written down, it didn;t happen (the various requests etc.)

Obviously, if the response is that such a review hasn't taken place, then I'd be asking for them.

Sadly, in this day and age, we need to be advocates for our own health and well-being, which is exactly what you are trying to achieve, so please don't think I'm suggesting you're not doing the right things.

My OH calls me the awkward squad. I bear that badge with pride....... usually.

 

[First.Officer]

Have found that in my experience locally, in the last 6 months of needing GP's - they are generally (and sadly) pretty useless. Your better off finding a private consultant specialising in your area of concern as it avoids the errors and malaise of the GP. Of course there is a cost for this, but IMHO (at a local surgery level), the NHS is busted and broken.

 

[Seacrow]

In theory, all your medical notes are held on a central nhs system that can be accessed by any doctor. Part of the reasoning was so ALL your conditions could taken into account by every doctor you see. In practice...

I am seen at three hospitals and my notes are (in theory) held by my GPs surgery.

One hospital cannot access my electronic notes at all, so updates my GP by letters. The letters are scanned in, so the GP can see them, but because they are 'documents' not medical reports they can't be seen by anyone outside the surgery.

The next hospital has an automated system that plugs in hospital appointments, but not outcomes. So the GP knows I've been to hospital, and what department, but not any results.

The doctor I see at the third hospital likes to phone up and have a conversation with the GP. Great for individualized attention, not so great for the GP who is supposed to remember everything said of importance and transfer it to my notes.

Inter-hospital communication? Stop it. I'm laughing so hard it hurts. (Well, it's that or hysterical crying.)

 

[1spuds]

Sadly, in this day and age, we need to be advocates for our own health and well-being,

The Cardinal rule IMO.

 

[Neil Cookson]

Hi All.

Thanks for your replies.

I agree with everything said and will discuss the MDT issue with my consultants.

I have an excellent and long standing relationship with my Diabetes consultant and we are in discussions regarding setting up a mental well being sector at the hospital where you can discuss your concerns at your routine appointments.

Meanwhile I will weigh up risks of op against the likelihood of complications from other ailments.

Have a nice weekend all.
Neil.

 

[DCUKMod]

Hi All.

Thanks for your replies.

I agree with everything said and will discuss the MDT issue with my consultants.

I have an excellent and long standing relationship with my Diabetes consultant and we are in discussions regarding setting up a mental well being sector at the hospital where you can discuss your concerns at your routine appointments.

Meanwhile I will weigh up risks of op against the likelihood of complications from other ailments.

Have a nice weekend all.
Neil.

Neil - Forgive me, because I can't actually remember where this is. I go to lots of meetings in various places, and often with people from far and wide, but (forgive the preamble), I remember hearing of a collaboration, with a local council where an arrangement had been made for an empty shop, adjacent to a health centre was made available for a period (9 months springs to mid), and a Council employee, plus volunteers, set up a drop in coffee spot, essentially as an engagement point for drop-in mental health issues.

It was a massive, massive success, and went on to receive loads of grants etc.

I wish you well in your venture. "The feet on the street" (in this instance, those living with diabetes) need to beat out the new groud. Well done.