Medicines Holiday Crunch

There are a few blogs I follow, one of them is called DrWes, written by American cardiologist Westby G Fisher.  Many of his posts, including his last one, raise some extremely relevant issues.  His last post was entitled "Medicines Holiday Crunch" and draws attention to the rush prior to Christmas and the stress it puts on hospitals, doctors, etc.

It inspired me to respond to it with my own suggestions, which I am sharing with you all today.  You can also read it on Dr Wes's blog.  May I suggest you read his original post first.  The link is below.  Stay well:)

Dr Wes - Medicines Holiday Crunch

Hi Dr Wes,

I couldn't agree more. However, it does beg the questions of what can be done about this? I have a few suggestions. 

First, what can the hospitals do?

1. A massive overhaul of their regulations and procedures. Cut out the needless regulations and inevitable double ups. This may be costly so let me put it in a context bureaucrat would understand:

Regulations + Paperwork = Time = Money

Therefore streamlining regulations would save money.

2. Take pressure off the doctors and nurses. A great deal of non-essential tasks are delegated to these people. Some of these tasks could be delegated elsewhere, leaving the doctors and nurses to do what they do best, medicine.

3. Add incentives for staff not to take holidays during the lead up to Christmas.

What can the government do?

4. Write legislation to streamline government regulations.

5. Align the medical year with the financial year. This will move the financial incentive to have surgery pre Christmas to a more manageable time of year.

What can the patient do?

6. Be aware of the Christmas log jam and elect to have your procedures outside of this time.

7. Take charge of your own treatment. Many accidents happen and are blamed on hospitals, doctors etc, but could have been prevented by the patient. As a patient, pre surgery I like to have a short 30 second conversation with my surgeon just to make sure he has bought his 'A' game. For a number of reasons (tired, stressed, emotional, ill, hung over.....) they might be off their game and I would have no hesitation in postponing the surgery. This has never happened to me with a surgeon, but one I did have a scrub nurse who had just broken up with her boy friend and was an emotional mess. I told the surgeon I didn't want her in the OR and they removed her without any fuss. If I had said nothing she would have played a part in my surgery and who knows what mistakes she would hjave made.

What can the doctors do.

8. I actually think nothing, it is up to the system to allow them to do what they do best. If anything they should be making sure they are allowed to.

Funny.

I found this card in a cystinuria forum.  It made me laugh so I thought I'd share it with you all:)

Another mistake... Or was it?

When I wrote the post "We learn from our mistakes", there was no doubt in my mind that the doctor was at fault and I should have confronted him about it.  However, this story beats a different drum.

The first medical problem I ever had was my kidney disorder, cystinuria, which was diagnosed in 1994.  Unfortunately, as you would know if you were ever a sufferer, the treatments are not perfect and often carry some nasty side effects.  So one really has to weigh up the cost versus reward.

One such treatment for cystinuria is a drug called penicillamine.  Now penicillamine has a list of side effects as long as your arm, but is considered the best drug for treating cystinuria.  I know now that a side effect of this drug is peripheral neuropathy (CIDP), but back then it was not communicated to me neither was it listed in the long list of side effects that came with each box of drugs.

So I took the drug and lo and behold I now have CIDP.  A mistake I have paid for the last ten years.  But was it a mistake?

Firstly, the number of cases linking penicillamine to CIDP were very few, and a search by my doctors post my diagnosis did not reveal one case of a cystinuria patient on penicillamine contracting CIDP.  And if the pharmaceutical company that manufactured the drug did not list CIDP as a side effect, how was my doctor ever going to know about it?

This point helped me rationalise in my mind that my doctor, and even the pharmaceutical company were not negligent in my contracting CIDP.  The irony is at the time I talked to a lawyer (informally) and his reply was "You have a case".  I don't think I could live with my self if I decided to sue in this case, as I really feel based on what we knew at the time, no party involved was negligent.

Secondly, if CIDP had been listed as a side effect would it have changed anything?  Honestly, no.  At the time I took the drug I had no idea what CIDP was.  It would have just been another name on the list of side effects, and it would not have altered my decision.

So was it a mistake?  I say no, it was more like a horrible accident, and the blame in my opinion, falls with no one.  After all, if a meteorite falls on your head do you get to sue NASA for failing to detect and warn you about it?

Sadly, these days it is too easy to apportion blame, and realistically an individuals shallow victory only adds to the detriment of society.  After all, next time you whinge about your doctors bill is, ask him how much his malpractice insurance is.  In my case, I could have sued, I could have won, but I'm glad I didn't.  Until next time, stay well:)

More Milestones

Can you believe it,  this is my 100th post!  After 21 months I have reached this milestone, and I am pretty proud of myself.  Just for the record I also have 21 people following this blog, 39 published comments and over 2300 page views.  My technorati authority has also raised 2 points:)

Right now you might be asking yourself what this has to do with medicine or being a patient?  Well, nothing really, but at the same time everything.  Recently I was reading a blog written by a sufferer of depression.  In a nutshell, her last post was about celebrating life's little victories and taking time out to congratulate your self for your achievements, no matter how big or small, trivial or grandeur.  If you want to read the post the link is:-

www.fightingthedarkness.blogspot.com/2011/10/expressing-gratitude-to-myself.html

So, this is me giving myself a big pat on the back.  I hope you have found my blog entertaining and informative.  I hope that along the way I have also helped someone.  I look forward to writing more, and hopefully celebrating more milestones.  Until next time, stay well:)

Time to Stick it to The Man!

Well stick it to the disease anyway.  Since my mega kidney surgery in 2006, I decided that enough was enough and and I had to hit all my problems head on and really aggressively.  Sort of a live well or die trying mentality.  So back then I took the following steps:-

1st.  I changed my nephrologist and became super strict and diligent about my treatments.  My treatment plan was changed and I went from having an attack of kidney stones every six months to having only two in five years.

2nd.  My depression, that I haven't talked about much, but I plan too, needed to be addressed properly.  So I went on anti-depressants and had three years of counselling.  Depression will never completely go away, but if the medical fraternity were to give it a name they would say it is in remission.

3rd.  I tried to hit my CIDP hard.  I went on immune suppressive drugs (cell cept and prednisolone), had plasmspheresis and IvIg treatment all at the same time.  Sadly, this was only mildly effective at best.

4th.  I had brain surgery for my tremor.  This was probably the biggest thing I have ever done and wow was it worth it!  Now on a good day I can drink a coffee with one hand.

I feel that with most of these disorders I have reached the end of the road in terms of available treatments and for the most part I am happy with the results I have achieved.  The one exception being the CIDP.  Whilst the treatments are not as invasive as brain surgery, they are not pleasant and have their fair share of side effects that I have been exposed to.  I keep with them for fear of slipping backwards.

However, it has come to my attention recently that I have not yet hit the end of the road.  A couple of new treatments are now available that sound encouraging.  The first is a drug called rituximab, which attacks a protein that exists on B-cell preventing the immune system from working properly.

The second is stem cell transplantation.  They can now cultivate stem cells from your own or a donors bone marrow or placenta blood which strongly goes to negate the ethical issues of embryonic stem cell transplants.  However, the procedure is long, hard and dangerous.  Naturally, my doctors would like to try rituximab first, but I belief that life is for living so if rituximab doesn't work you can rest assured I will look at the stem cell option.  Live well or die trying.  Until next time, stay well:)

Dear Julia - the rebuttal

When I wrote to Julia and Nicola about the super clinics I promised to keep you informed as to any correspondence I received back.  And I got something back.

Although I appreciate the quality of the letter (seeing as though I expected very little in reply) I do not agree with everything in it.  For example, in the fifth paragraph Katherine writes "It is intended".  Well, I am afraid that good intentions pave the road to hell and there is a very large difference between intention and practical application and suitability

However, it is debate like this that uncovers the pros and cons of any argument and no matter how big or small the voice it can only work to the betterment of policy.  The letter is attached below.  For now, I think it is time to rewrite to our beloved prime minister and her trusted health minister.  Until next time, stay well:)

The future is in safe hands

Today's training day was for three final year medical students who were competing for the Billings prize.  They all had a turn at examining me in front of a practising neurologist and at the end of it they were scored and the winner announced.

I have to say, all three students did a really good job.  Seeing as though none of them had any specialist training I did not expect them to have a complete understanding of my conditions, but they all did a fantastic job showing good practical skills and a wide knowledge base that they were able to apply.

However, nobody hit the nail right on the head and nobody got the diagnosis completely right, but what impressed me was the methodology they used and the thinking behind the conclusions they made.  Also nobody made any really wacky diagnosis that made me think, "Wow! I'm glad he's not my doctor!"

Saying that though these were the top three students out of about sixty, so if I were to be examined by the bottom three I might be a little more panicky.

After the exam we all had lunch together as well and it was really good to have a general chat with the guys to get a more informal understanding.  All three of them seemed like genuinely nice people who who had a genuine interest in my condition.  I think it is safe to say that from this little corner of the medical world, the future is in safe hands.

Someone however did get my diagnosis completely wrong.  The cab driver on the way home had a crack at it and his preferred treatment option was to rub mustard into my head.  Maybe there is merit in it as an alternative therapy.  I might research.  Until next time, stay well:)

I feel sorry for the students

So tomorrow is my chance to give something back to the medical fraternity that has done so much for me.  I am off to St Vincent's Hospital to be poked, prodded and examined by medical students so an examiner can assess their ability to diagnose my conditions.

In all honesty I pity the poor buggers that have to examine me because out of about 20 students only four will get the privilege. And I am one tough case.  I not only have one but two neurological conditions and a kidney disorder thrown in to boot (but for the purposes of this exam they are only looking at the neurology.

The other reason I feel sorry for them is that there are questions about my diagnosis that even the leading experts with decades of experience can't answer so what hope does a medical student have.  Questions the expert can't answer include the cause of my neuropathy and whether my tremor and neuropathy are related.

It can also be disconcerting hearing what the med students come up with.  I have been sorely misdiagnosed in the past but I have learned to take it with a pinch of salt.  I will promise to let you all know how it goes.  Until then, stay well:)

We learn from our mistakes

When I wrote the post "My Biggest Mistake" I neglected to go into detail about what I learned from it.  It was a really important lesson that everyone who is consulting a health care professional should know and I learnt it the hard way.

NEVER let your doctor call the shots without querying him.  I see it all the time where people blindly follow their doctors instructions with total blind faith, whether the doc is right or wrong.  In my case, the doctor thought he was right but he was wrong and it cost me big time.

When ever I have a procedure now I know exactly what is going to happen during the op and post op.  If the doctor looks like he is cutting a corner I will pull him up on it.  Fortunately it has not happened again, but, pre-operatively I am so obsessive about it I don't think the doctors would dare.

When I had my very first kidney stone my parents were over seas, but I was lucky enough to have a close family friend stay with me while I proceeded through the zoo, which is more commonly known as emergency.

As a youthful 18 year old I was almost embarrassed by the way he assertively placed himself in the way of the doctors and nurses, writing everyone's name down and making sure they were doing their job properly.  It was amazing how quickly everyone started jumping around looking after me.

Looking back, he did exactly what I would do now.  He wasn't rude or aggressive, but was very assertive and certainly taking no nonsense.  If only he had been there when I had my first perc?  If you are reading this, you know who you are, and thank you.  Until next time stay well:)