Should a GP have supreme authority?

[kristina]

I have read on IHD that some people have had good results from contacting their MP for help.
I would like to put my experience down to show how powerful the GP is.
Originally I relied, innocently, on my GP to help me.
I have leant through bitter experience that this cannot be relied upon.

I had to take other measures to see if I could get some help.
Over the years I had a few different MP’s in my district,
but I had not any of them answering back positively, or assisting me,
or knock on a few doors on my behalf to help me get the health-care I need.

All I have ever achieved is my MP acting like a post-man:
I send him my letter for help and he re-directs it to a government or quasi-government authority,
the MP then receives a reply, and then he sends me that reply from the authority,
which is exactly with the same (negative) result as if I would contact the authority direct, which is of no help!
I have not received any help from the MP’s I have ever come into contact with.

That is one of the reasons why I haven’t be able to receive the appropriate health-care
or a health-care to match my medical needs:
I cannot go to the GP who has been appointed to me, because he does not wish to acknowledge
the medical difficulties (SLE/MCTD/photosensitivity/allergies etc) I suffer from
or to help and support me in my efforts to obtain the appropriate health-care.
My GP merely told me to go to a certain nephrologist who I have been to,
but the nephrologist did not wish to assist me keep my kidneys for as long as possible
and did not wish to understand the underlying medical conditions I suffer from, (SLE/MCTD/photosensitivity, allergies etc))
which make my kidneys fail in the first place and have an effect on the kidneys’ deterioration indirectly.
The nephrologist just pointed towards the Dialysis Unit, and shouted for a transplant nurse and “to hell” with the dietician...

Lupus/SLE/MCTD is usually managed by a rheumatologist, but because I also have ESRF I was sent a nephrologist
and it is my experience that the rheumatologist, in this instance, looks up to the nephrologist from whom he takes instructions.

I am under no rheumatologist and no nephrologist now.

It is a difficult puzzle to solve.

Of course, there is the renowned “Complaints Procedure”.
Following this route is like trying to find the “Holy Grail”:
It all sounds so simple, but inevitably it ends up with a Barrister
who fleeces you for all your worth and then drops you like a hot cake.
Of course, one can appeal to God himself, that is, the (independent?) Ombudsman,
but they are in a different world which is connected to the “Political Agenda”
and they give no help or acknowledgement of my (long) complaints-procedure
and no assistance either, at least not to me.

So you can see my predicament.
 
Decentralizing health-issues of patients by making the local PCT accountable really means,
and I have great experience of this, that whoever one corresponds with,
my complaint always, and I stress ALWAYS comes back to my PCT,
and they, who are not medically qualified, send my complaint to my GP
because he is the one who is believed to know all about my medical circumstance.
So, if you haven’t got a GP supporting you, you have nothing and that is the predicament I am in.

The GP is the most powerful individual in this whole matter of health-care
for he or she can influence any other authority
by what they write about you because no other authority is medically qualified.

Yes, you might take a private legal action against the Health-Service
but you still would need doctors letters to support any action you want to take,
and it is here that one realizes that all the doctors stand together,
so again it is impossible to find a doctor to support you even in a private claim.
It is also my experience that the medical profession and the legal profession walk hand-in-hand
and they each have the finest Union to support them in case of trouble.

Without the help and support of your GP you will always feel alone, vulnerable and fragile.
My experience of charities and support-groups has proved to me they have no teeth
and in many instances I have found them to be mysteriously affiliated to the “Political Agenda”.

Fortunately I have now stopped to take things personally
because I have spoken to other unfortunates
and they had no help or assistance from their GP or their MP either.

Do you think the GP has too much power?

[ashwee]

my mum has had both good and bad experiences with GP's the first GP she had for, wow, about 8 years... was no help to her and nearly killed her because he didn't care and "knew it all". the health issues that she had several years ago,( that were never treated let alone never being diagnosed),all come down to the now kidney failure. her GP now is amazing, and listens to everything, and best of all remember's from one visit to another...
her nephrologist on the other hand, we have never actually met, just a bunch of his residents which seem competent enough.
I can understand the GP's having "too much power" from her first GP but that was one bad experience for us. the health care system in Australia though, at least for us, has been good. not too many issues. yet anyway...

Finger's crossed you find a GP, rheumatologist , and a nephrologist who listens, and work together....

[Poppylicious]

I think 'power' is probably the wrong word, but I do understand what you mean (I think!)  We are very lucky in that we have an amazing GP who's very approachable and incredibly supportive, to the point that she once told Blokey off for not going to see her and made him promise to let her intervene on his behalf the next time he needed her to. 

I cannot go to the GP who has been appointed to me, because he does not wish to acknowledge
the medical difficulties (SLE/MCTD/photosensitivity/allergies etc) I suffer from
or to help and support me in my efforts to obtain the appropriate health-care.
My GP merely told me to go to a certain nephrologist who I have been to,
but the nephrologist did not wish to assist me keep my kidneys for as long as possible
and did not wish to understand the underlying medical conditions I suffer from, (SLE/MCTD/photosensitivity, allergies etc))
which make my kidneys fail in the first place and have an effect on the kidneys’ deterioration indirectly.

The problem with GPs is that they can't know everything.  They need to have a basic knowledge and understanding of nearly every ailment under the sun, and so obviously need to refer you to specialists so that you can gain the best medical help.  I know our GP hasn't really got a clue about many of Blokey's issues, but she always referred him to the people that knew and was brilliant at chasing things up.

You say that you can't go to the GP who has been appointed to you ... are you now registered with a GP?  Can you ask for a new GP? I think you need to find a GP whom you can develop a good relationship with. I don't think that the majority of GPs have supreme authority (or even the self-belief that they do); in my experience most of Blokey's medically-trained staff have worked together, communicating well and passing on information to keep each other in the loop. Oh, except for the horrid woman who kept saying Blokey was just fat and needed to go on a diet (he wasn't just fat; he was retaining fluid at an alarming rate!) ... tsk! Obviously there will always be occasions where communication fails but that happens everywhere and can't always be helped.

As for the MP situation ... pffft!  Our MP is as useless as a chocolate teapot (but good at turning on Christmas lights) ...

[Stoday]

I take medicines that have been originally prescribed by my GP; heart and kidney specialists. Earlier this year I decided to find out which was the organ grinder and which the monkeys by reviewing and changing my medication.

My nephrologist was the clear winner/organ grinder. My GP wouldn't change anything without his agreement; the heart specialist was only interested in his own speciality. I did manage to get the Clopidogrel/Omeprazole incompatibility sorted.

[RightSide]

I found what I consider to be an elegant solution to this problem (if I do say so myself):

All nephrologists study internal medicine first.  So I asked my neph (who has impressed me with his command of the subject) if he would be willing to be my primary care physician.  He agreed.  So I've got my GP and my neph as one and the same person.

[kristina]

Thank you ashwee for your reply. I have come across similar GP’s to your mother’s former GP.
I don’t know why these GP’s act in such a superior way, they always “seem” to miss the obvious.
I am glad that your mother now has a good GP and good health care and I hope this continues.
Thanks for your good wishes, Kristina.

Thanks for your detailed reply, Poppylicious. It seems that we know where we are with the politicians,
but the doctors are a different kettle of fish, some are good, some are bad.
I have changed GP’s but it doesn’t make any difference.
Quite by chance I found out they even put remarks on their computer about a patient,
which do not appear in the medical file, which a patient can apply to see.
I have, naturally, wondered if there is any communication between different GP-surgeries about patients,
because the same experience always repeats itself, whatever I try.
I can assure you I only base my conclusions on facts.
It sounds as though Blokey has really good care now and long may it continue. Good luck from Kristina.

Thanks Stoday for your reply. It is not so difficult to find the organ-grinder.
It is only difficult to get him to play the right tune...
...a tune that doesn’t make me scratch my teeth...
...as for the monkeys I have no talent for keeping them under control...

Thanks Rightside for your reply. How did you achieve that?
I hope you haven’t put all your eggs in one basket,
but there again that decision gives you the choice
and you can probably go to your GP for all the minor staff
if you wish to do so. Well done!

[billybags]

Stoday, you are right on with what you say. Our GP is very good, very interested but every thing must go by the neph or cardiologist before she will issue a script for any thing. Which is fair comment.

[KICKSTART]

Kristina , i dont want to upset you , but we are never going to see eye to eye on the NHS , mostly because so much of what you say is so far out there ! You seem very level headed about matters for a few weeks , then go off on a rant attacking the NHS and saying people in the UK cant get this and cant get that. Im beginning to wonder ..are you bi-polar ?

[okarol]

Kickstart, it's her experience, and I don't think any of us are immune to having rants.

As far as doctors, yes, they can make or break you. If you have a good doctor who is proactive and involved and can be a good mentor as well as give you good solid medical advice, that's fabulous. But I think that's a rare occurence. We have seen at least 30 doctors, maybe more, since Jenna was first diagnosed 10 years ago. Of those, I would say there are 3 who I know did their very best. They understood Jenna, they were creative in their approach and they listened. They also were good advocates, and if they could help facilitate care or help navigate the system, they did it. I feel incredibly fortunate to have met those doctors, and I have great admiration for them.

[casper2636]

I have been very blessed to have a GP that will listen to my aches and pain and will look into them, but when it comes to prescriptions, he always refers to my neph. to make sure it will not interfear with my kidneys or treatment. He always has been nothing but patient and willing to hand it over to a specialist when need be. I'm very lucky that all my multitudes of Doctors work with eachother to work together in my care. I hope you can find the same.

[kristina]

Stoday, on more serious note,  I am very glad that you were able to sort out your incompatibility problem. I know how difficult it can be to find medications and treatments which are compatible with other medicines and the body.

Hi, Kickstart, this is where I am coming from. I suffer from MCTD/Lupus, and due to the Lupus I suffer from Vasculitis and Antiphospholipid Syndrome. At 28 years of age, at the beginning of a career, I had constant headaches, my GP told me to take headache pills (Aspirin thins the blood). I became so ill I ended up in A & E. There I was told I had a stomach-bug and I was sent home.  Thanks to some neighbours who looked after me through the night because they thought I was dying I was later rushed to hospital where I was eventually diagnosed with two burst aneurysms in the head (cerebral haemorrhages). This necessitated a long stay in hospital with two sixteen hours operations.

Ten years later, before registering with a GP, I provided him with my medical history summary, so he knew the serious medical problems I had suffered from. He agreed to take me on. Soon after I was having headaches, vision problems and eventually black-outs and each time I went to this GP and explained my problems. He decided to treat (research) me himself without referring me to a hospital. My health deteriorated to such a degree it became obvious, even to this GP, that I had to go to hospital. He referred me, but whilst waiting for my appointment I suffered a stroke paralyzing my right side and leaving me with speech problems , mixing-up my  different languages, swallowing difficulty and double vision. Why  did this GP decide to spent many months trying to treat (research) me when he should (as I know now) have referred me immediately?  I also know now my symptoms were typical of symptoms of an impending stroke.
 
I once slipped in the snow because of an unseen hole in the pavement. My leg was badly fractured just above the ankle. I had five operations to put it right because each time it was infected. On the last occasion when the wound was weeping and red my GP (yet another GP) said there was nothing wrong. I went to eleven A & E Hospitals, and each doctor who saw me found nothing wrong and said it was a skin problem. A few weeks went by and I was on two crutches. I then paid to see a top bone-specialist. He took one look at the x-ray and said I must an emergency operation otherwise I would lose my foot because I had chronic osteomyelitis (chron. bone-infection).

This is where I am coming from. These medical difficulties changed my life and ruined my career. It is very hard to go through all this and still come out believing every word a doctor tells you. I have only mentioned here three of the most serious medical difficulties. I have not mentioned the problems I had trying to get doctors to understand my pain and my photosensitivity. I do hope you can now appreciate why I write as I do.

Thanks okarol, you are quite right. I am not criticizing doctors because they haven’t got an answer. I wish only that they have integrity and they believe first in preventative medicine and secondly in treatment compatible with the patient. This is all one can ask. And this is what I am looking for. But “for me” I just can’t yet find it.
 
Thank you casper2636 for you kind sentiments. It is good to know there are patients who have a good medical team to look after them. I hope, it continues for you. Good luck from Kristina.

[paul.karen]

I have heard of people who complain and get nowhere.  Who are in serious pain and get no attention.  Who have tried for days on end to get people to listen to them.
Heck i have even heard of people who had to move to try and get better care.

I feel for you kristina.  You will find a GOOD doctor one day.  And when you do im sure you will stick with him/her.  We all deserve decent care.

[rsudock]

what does GP and MP stand for?

[Ken Shelmerdine]

what does GP and MP stand for?

GP is like your family doctor who deals in the first intance from a local surgery with any medical condition you may be experiencing by either issuing you with a prescription or refering you for further tests xrays utra sounds etc. In the UK this kind of doctor is called a General Practitioner hence the abreviation GP.

An MP means Member of Paliament. Every borough in the UK has an MP and they hold surgeries where ordinary people can voice their greivences. The MP apart from taking part in government debates and voting on legislation can also take really serious greivences of individual members of the public such as Kristina's to the House of Commons which is the legislater of government and lobby on that person's behalf. In extreme cases an MP willlodge a private members bill to change current regulations which are causing hardship and suffering to any of his constituants.

[kristina]

Dear paul.karen, thank you so very much for your kind sentiments,
it is very much appreciated. Like most people who are suffering with their health
we put on a brave face, but it is tough and it is always some comfort to know
there are others who understand. Thanks again, Kristina.

Thanks Ken, I appreciate you taking the trouble to give a more full meaning
to the abbreviations. Thanks again from Kristina.

[casper2636]

A GP is technically called a General Practicioner. I've never heard of an MP, but the definition of them sounds very complicated and political...I hope thats not so. Politics have no business in medicine as the same as U.S. insurance agencies. They have no knowledge of medicine and should not be the ones telling us what tests and surgeries we can and can not have.
Kristina - your adventure within the medical realm has been a NIGHTMARE! God Bless you've kept you head up and keep fighting!!!!! I'm with you all the way and will keep you in my parayers to find a physician that will treat you correctly and work with you for the better. 

[kristina]

Thank you very much for your very kind thoughts, casper2636, they are very much appreciated.

There are always two sides to a coin and many NHS-GP's (NHS-National Health Service) think that they should purely be involved with treating patients only.
But there, on the other side of the coin are those NHS-GP's who wish to be in charge of the finances as well as making decisions about NHS-patients health.
This is a big discussion at the moment because the English Parliament have pushed forward a policy to put all the NHS-funds in the hands of the NHS-GP’s
to decide the care for the patients and how much they spend upon health care.
It raises the question about the power of NHS-GP’s and with this new policy they will have the funds to thoroughly dictate what is going to happen to NHS-patients.
 Only time will tell whether this is a wise move forward...

I would like to be able to go to a NHS-doctor or a NHS-hospital but I am unable because of my photosensitivity which is not being catered for.

I wonder if under this new policy the NHS-GP will organize a way in which I can be seen in an environment without fluorescent light,
that is in an environment with the old filament-light bulbs, which if slightly dimmed has no effect on me?

The NHS-GP/doctors are aware that if I go into hospital with fluorescent lighting I will suffer physical medical problems as a result of the fluorescent light.
This will cause further damage to my health and my kidneys which only function 10-12% (no dialysis) because of the related exacerbation of my Lupus/MCTD.
 
It is very interesting that on occasion, when I have saved-up enough money, I have gone to a private doctor
and when I mention anything about the lighting being too bright they are perfectly courteous in complying to my wish to have the lighting dimmed,
they even have ordinary filament light-bulbs. Here you can see the contradictions.

Unfortunately I do not get the same courteous help from NHS-doctors. This may be just my bad luck, which it could well be.
But, I owe it to myself to keep away from fluorescent light.

I have not given up hope and I shall continue to try to find a NHS-GP/nephrologist/rheumatologist who accommodates my photosensitivity.
The USA is more advanced in tackling the problem of photosensitivity to fluorescent light. 
You can find through the Internet a company owned and run by a doctor, and his company produces special lenses-filters
which fit over fluorescent lights and eliminate UV-rays and other problems related to fluorescent lights.
But in the British Isles this invention has not found a foothold yet.

[Sax-O-Trix]

Interesting...  I leave my GP out of everything.  I do not involve him in my kidney care, not one iota.  I see my neph every three months (have been seeing him for 6 years or so), the ob/gyn once a year and the GP once a year if his office calls and tells me I need to see the GP because it "has been a year since your last appointment."  Only then do I see him (to stay "in compliance").  I have had this GP for 3 years.  While at his office, I say very little about anything because he is not affiliated with the hospital where I will be having surgeries (fistula, catheter or transplant, whichever comes first) and when push comes to shove, he really cannot help me at this stage of the game.  He and I have never had a conversation concerning modalities, I told him what I was doing and that was the end of the conversation... 

 

[kristina]

As you describe it, Sax-O-Trix, it is the same historically as here in the UK.
Once the NHS-GP has referred you for a chronic condition beyond his medical control,
one usually keeps going back to the NHS-specialist/nephrologist/rheumatologist at the hospital.
But in recent years and what looks like to continue in the future, the NHS-GP’s are having bestowed upon them more power
to decide where the funds go for the benefit of their patients.
What this means in detail has not yet come into the public domain as far as I know.
How it affects the patient’s relationship to the hospital & the NHS-GP’s surgery I have no idea.

All I know is that the NHS-GP’s I have gone to have not supported me either in their surgery
or  when I was referred to hospitals. I know it should not be, but I feel that if one hasn’t got the backing
of the NHS-GP the NHS-specialist (nephrologist/rheumatologist) is free to do as they want.

In an ideal world, of course, the GP only needs to write the official referral, & then the specialist provides the hospital treatment.
But this is in an ideal world and it is not the reality that I have come across.

I give you possibly one of the best examples:

I wanted to be referred to a hospital for a second opinion. To do this I had to get a letter of referral from my NHS-GP.
This I did and the hospital appointment was made. I went to the hospital and was told the NHS-specialist had booked me in
for an MRI-scan of my head. Nothing odd you may think about this. I went to the department & I was just about to have an MRI-scan,
and fortunately the medical person in charge of the unit asked me: “Is there anything I should know about your health-history?”
He said this looking at my medial file. I didn’t know what to say, but I thought I mention that when I had the cerebral haemorrhages
the surgeon had put clips to repair the burst aneurysms. He looked at the notes and said that nothing was in the notes
about cerebral haemorrhages & clipped aneurysms. I am not medical & I didn’t think there was much to this.
Then he told me that MRI-scanners are so powerful today that if there was any iron in the clips they may become dislodged
by the power of the magnets of the scanner. He was absolutely astounded that it was not mentioned in my medical file
or the referral letter that I had the clips. He said if the clips moved they could cause untold damage to my brain.
He sent me immediately for a normal x-ray to see whether or not it was true that I had clips.
When he looked at the x-ray he was even more concerned because of where the clips were located.
You would think that a patient who had two cerebral haemorrhages with clipped aneurysms
would have those details foremost on any referral letter from their NHS-GP. But not me.
This is why having a NHS-GP on your side is life-important here.

[Sax-O-Trix]

That is pretty damn scary (the clips and all).  I guess I am lucky, I don't even have to get a referral to see who I want to see.  The specialist just needs to accept my insurance or I have to pay 20% of the bill for an out-of-network doctor.  My GP is for ear infections and stubbed toes.  Have I mentioned I think he is an idiot?  Well, I do and that is why I avoid him at all costs.  Thankfully he has no say in my kidney care or any other care unless I ask him for help (which I have yet to do.)  I get all of prescriptions written by my neph so I don't even have to call the GP for that (because then he would have cause for having me come to his office...)

I really hope you are able to get the care you need.  Sounds like too much bureaucracy to me...   I don't know how things work in the U.K. and what your options are, but I hope you are able to get things straightened out soon!

[kristina]

Sounds like you have a different system in the USA, Sax-O-Trix,
one where the GP is not so tied into the hospital physician & bureaucracy.

Thanks for your good wishes, I also hope things are getting straightened out soon.

I hope you continue you have a good medical service from your nephrologist.

Thanks again from Kristina.