Putting together an ideal clinic

This is a guest entry from a "virtual patient" from Australia. I believe that doctors will never be able to improve their services until enlightened patients provide us with feedback so that we can meet their expectations. Patients need to tell doctors " what I want " , so that good doctors can try to do so. Ms Berggren is my ideal "dream patient" - and patients like her can help to improve healthcare services - if doctors are willing to listen.

" Pieces to the puzzle

A. Introductory Sessions

There is so much information to (a) digest and (b) sort out and keep what relates to you.

In the beginning I would have group sessions for IVF beginners that run in the evening for maybe 45 minutes that go through some of the following:

(a) Statistics

Every doctor I have met seems very comfortable and confident speaking to this topic. Further the backdrop of statistics sets up the framework for your risk – liability – safety net. At any stage you can point to the statistics to manage expectations. I think every one going through the process needs to be ingrained in the thinking that there are no guarantees but I may be able to:

(i) take the fertility drugs,

(ii) adopt supportive treatments,

(iii) change aspects of my lifestyle

to give myself the best chance overcoming the statistics;

(b) The Drugs

I think the women willingly injecting themselves deserve to have the simplest understanding of what each of the drugs do and why we should take them. While I have been provided instructions about refrigerating my drugs, which ones to take and what time to take them, I have no understanding of why they are used.

(c) Strategic Alliances with Other Professionals

It would be great if IVF clinics had strategic alliances with professionals practicing supportive therapies, such as acupuncture, natural therapy or yoga. In an ideal clinic you would be able to see any or all of these people right there in the same practice. That way you would get complete consistency in the message. Right now for example I have to take the scant information that I get from the nurses at the IVF clinic and relay it back to my acupuncturist so he can try and practice acupuncture to support the information I provide him. The risk of course is that I am relaying the information incorrectly. In a clinic where all these services were offered under the one roof, the patient would be assured of a collaborative approach to resolving infertility.

(d) Changing your lifestyle

I did ask the question at my first IVF appointment if there was anything I could do or eat to enhance my chances of growing healthy eggs. And the answer was there was nothing I could do other than stay thin. I have since come to find out there is a lot I can do, such as increase my intake of vegetables, wheatgrass, folic acid tablets, no coffee .. and of course DHEA. Again I appreciate that none of these provide guarantees but my goal is to give myself the best chance and perhaps the combination of these factors will assist that goal. I believe women should be provided a quick snapshot of ways we might change our lifestyle to become healthier and as a by-product grow more eggs and healthier ones.

(e) Acronyms

There also needs to be a better explanation somewhere of all the acronyms involved in this process. Your explanation on your website of FSH was excellent but that is only one acronym and there are many more to understand. I have found a couple of lists of what the acronyms stand for but without an understanding of why they are important I am only half way to informing myself about things I can do better.

B. Getting ready by yourself – things you can do on your own

Some patients have the capacity and desire to monitor their own blood tests and should be given the information so that they can do this and have a basic understanding of what’s going on in their bodies. Every time I have a scan I am always 2 steps ahead of the ultrasound scan technician because I have read everything I possibly can about the different scenarios that could eventuate from the number of follicles they find and the size.

I don’t think that every woman wants to be as informed but for those that do I think they should be given the tools to start being able to keep a meaningful record of their blood tests and they should be told when the correct day to do these tests are.

Someone like me wants to know all the blood tests I can do and have the tolls to be able to interpret the results in a simple fashion. The problem is I don’t know what are the top 5 blood tests to do and ask for and certainly no-one here will tell me.

I have found a useful website that has provided me with a lot of information about DHEA and growing follicles. On the website, you will see that one of its champions has set up a protocol for monitoring her blood levels and the number of follicles and size etc. There is no option for me to do this where I live. I have enough trouble getting my FSH checked every month let alone getting a specialist to check on my follicles every month. If I could I would have saved a lot of money in not proceeding on my failed attempts because the chances of success were not high enough to warrant the cost.

The website is http://www.medhelp.org/posts/show/416979

C. Issues Champions

At my work, I am part of a team of 12 full time lawyers that services a company of 10,000 employees. Resourcing is always a challenge. One of the things we do to try and overcome first level questions and issues is to make the lawyers product champions. I am theoretically supposed to know answers to questions about contracting for a certain type of product, another lawyer is responsible for data products etc.

In an ideal clinic, you may wish to have issues champions, first level nursing staff or other staff that don’t have to be doctors but know everything there is to know about DHEA or follicles and can explain in basic terms what an antral follicle is as distinct from a regular one and how much they grow a day. Each of these issues champions becomes an expert in their field but is accessible (perhaps by email) and empathetic to problems from everyday people like me. The most important thing about the issues champions is that they will get back to you with an answer and if they don’t know the answer they will find you someone that does.

At the end of the day, what I have found with this process if that there are women like me who are information junkies on what we can do to help ourselves (and as a value add help the success rate of the IVF clinic we attend). The thing is though we are starved because of the way medicine in this area appears to be practiced. The doctors aren’t doing anything wrong but it’s like any customer service related industry, customers are getting more demanding and wanting more information about the product they are buying.

S. Berggren, Australia."