Fibromyalgia Action UK

"Expert" Patient? No what we need is "Expert" Doctors!!!

"Expert" Patient?

No what we need is "Expert" Doctors!!!

This basically continues what I have started elsewhere at (please read)


which has been bothering me for a long time.

It is this whole concept of being an "Expert" patient.

Whilst I accept it is better to be informed about an illness than not. I also know a little knowledge is a bad thing!

I work in IT for a living. When someone asks me to help them with an IT issues, I help them based on my knowledge as an IT professional.

If I don't know the answer I consult another IT professional to help me. If anything goes wrong. It is my responsibility. No one elses.

I don't expect the person I'm helping to start saying to me

"Well I've checked the IP address, and I can ping the Internet. It may be a DNS issue.

I did a test on the hard drive, memory and CPU so I definetely think DNS is where to look.

May be its a replication issue"

Especially if the customer is a little old lady who works as a Lolipop lady!!

But according to this "Expert" patient agenda. This is what we are supposed to do when it comes to Fibromyalgia!

I would imagine those with Fibromyalgia come in all shapes, sizes and types.

But some how, regardless of circumstances, we are all supposed to become "Experts". From the 16 year old boy, to the person with sub normal intellingence, to the woman who holds down a full time job and has four children to bring up, to those who don't own or know how to use a computer or can't afford any private care.

All these people are all supposed to find the time, capability and money to know what to do, what to eat, how to live and which Professionals to choose.

I myself suffer from Depression and Obsessive Compulsive Disorder. I ask you am I the one who is supposed to be the "Expert" in deciding the best treatmnent for myself?

Was it my fault that I was not "Expert" enough that I am still waiting to get any help 31 years after suffering severe chronic pain and about 7 years after being diagnosed by one "Expert" as having Fibromyalgia?

According to this "Expert Patient" agenda If we don't do this successfully its our fault we did not get the best treatment!!

It's not the Consultants fault, who is getting a handsome wage and getting even more money offering a completely superior sevvice to those who can afford his/her very high (and completely unregulated fees) privately. It does not matter that these consultants had 5/6 years education at medical college and all the years of traing and resource since at their diposal.

Or more importantly, that it their job and duty to see to it that their patients health is treated!

No! According this "Expert" patient agenda, it is your fault that you never found the correct expert, you never read or knew about the illness to ask the right questions on the day!

I have said "Expert" patient stuff is like something out of Alice and Wonderland and thats what it is!!

The "Expert" agenda is based on a viewpoint that a differial treatment in the health service in this country is ok.

It a view that says It's ok that some patients, who can afford to pay more can have better health than others. I was very shocked to discover this but now know it is true!

Why else could the NHS not the organise a system that works where people are treated according to their needs?

They talk about lack of resources and its abolute rubbishl! What about the cost of my parents paying into the NHS for 60 years and they and I are now getting nothing in return!

This forum and Fibromyalgia action should be representing the patients views and making these health professionals accountable which currently they are not! Unlike in other areas of health (like mental health for example).

Whilst the "Expert" patients idea is a good idea as bonus, it is a poor substitute for the professional doing what they are trained for and providng the guidance for vulnerable patients. And this is what they should be doing and made to do!

Treatment of all these many needy people should not be left in the hands of a bunch of amateurs is currently the case.

2 Replies

Mojoman, whilst I do totally agree with you, I have to say that my gp is very knowledgeable, and very helpful. Thats only the gp though, I have discovered its pointless to try to go any further than finding a good physio, and stay with the gp who is helpful and researches fibro. These support groups should be looking into the two tier system that the NHS operates. We can't be the only two people in UK to experience this.

I never did get to see the specialist at Guys, just a lady rheumy who was not really concerned with my condition, she offered no help at all. I gave up and came home totally aware that there is no help for me. I live on benefits and don't have money to spare for even buying supplements. So I stick with my doctor. Other things come up, like tennis elbow, can't get any help with that, it makes me cry out the pain is so bad.

What the NHS needs to do is more research and training for the new doctors going through the system. To recognise that fibromyalgia is a central nervous system condition. Not electrocute my arm and fingers. or stick pins in and leave, nor tell me to lie on a towel rolled into a sausage for upper back spasms caused by fibromyalgia.

sending muchos mojo to you



Well its good you have a knowlegeable GP!

I wish I had one. Mine won't give me anything without a specialist.

I have not been able find one as yet (What an ordeal it has been - well more like a horror story more like).

I'm going back to KIngston pain clinic on Lynns advice. So hopefully I can find an elusive good doctor there?


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