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.
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mojoman
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whilst I agree we need expert doctors, Ive now found if I dont take charge of my own body, health etc Im overlooked,Ive never had much faith in the medical proffesion, suffered years of infertility, and told Id never have kids,finally got pregnant only to have a stillbirth at 38weeks, the doctors knew something was wrong but never told me, I then went on to have 5 more kids, the last delivered by emergency c section, with prolapsed cord, that was missed for a while as no midwife was with me, so no fetal heartbeat, thankfully she was fine,
My 3rd son was given the wrong vaccinations at 3months, they tried to cover it all up, I went through hell being pregnant at 41 being told to abort
then this illnes its taken me 3 yrs of trying to get a diagnoses, in the end all I needed was a rhuemmy
I would suggest that perhaps you have not as this is not what it is about.
The Programme is about educating the patient on getting just what you asked for above. It is about knowing your rights as a patient to the care that you are ENTITLED to, and how to ensure that you are getting it.
It is about empowering the patient to say to the medical professional that is not giving you the correct treatment, "No this is not right" or " I am worried about XYZ and it is my right that you rule this out clinically".
It is about saying "no I don't want to be seen by this dr at this hospital as that dr at that hospital knows more".
I agree the forum is about debate, but debate is based on educated opinion.
Please do not decry a very valuable service because you do not know truly what that service is about.
I also work as a tutor for the EPP and have found that the groups ive tutored, have gone away more confident with more knowledge of there long term conditions, and how better to deal with their health care professionals. Also they have met alot of new friends and become less isolated along the way.
if we havent got the knowledge on what to ask for, we wont get the help we need
Well I've never heard of the "expert patient programme". Nobody has ever told me about this. Is it an actual course?
You see the thing is maybe one the real "Experts" ie. the doctors could have told me. But no one ever did. In fact they have done pretty much nothing.
But your missing the point I think. Im talking about the idea as an "Expert patient" as presented on here as opposed to me getting Expert treatment or even guidance from the professionals who work in the NHS. Which so far I have received none.
The only guidance I have ever received has been from amateurs. Is that right do you think?
I have never heard of the expert patient, but I do know I feel better knowing what I personally have researched and being able to argue my point over the sheer idiocy that has been suggested to me in the past.
If I didn't personally arm myself with the knowledge I have of Fibro and match it with my own experience living with the condition I would be having fits trying to follow what I know now is wrong advice from my current OT.
She is supposedly an 'expert' on Fibromyalgia and helping those with it live fully functionally independent lives, at least that was the spiel she gave me six months back when I was referred to her. In the three appointments I've had with her I've picked up, and pointed out, several things that she has told me which were totally false. I even spent 5 minutes arguing with her last time and she eventually looked down at my notes in front of her and found out that I was right and she was wrong.
Funnily enough still waiting for my apology or some sign that I was actually right there. Figure it will be a long time coming.
It seems a lot of 'expert' health professionals on Fibro have a tick box mythology which they have imported into Fibro from another medical condition, tweaked it ever so slightly, and are using it as the Fibro Bible for therapy. One size fits all so to speak.
So I myself will continue to arm myself with as much knowledge about all my conditions as I can collate and make sure I get the best possible help without being led in the wrong direction. Because at the end of the day it's me not the health professionals who have to live with Fibro and I should have the final say as as much input as possible.
Yes it is an actual course. The Drs wont tell you about it though because by doing the course you are assuming control over your life.
By putting expert patient in quotation marks, it is reasonable to assume you were referring to "Expert Patients" being the nationwide programme.
I get the feeling the notion of Expert Patient on here refers to the programme as a whole and because you have been denied the knowledge of existence you are out of the loop through no fault of your own
Lally is right if you do not know what you are facing and what is available how can you ask for the help?
For the most part our first port of call is our GP and we cannot expect a General Practitioner to have expert knowledge in every single illness. While I agree that once we are seeing specialist we should expect to receive expert care, but we have to get to that stage.
I get the feeling you are frustrated and feeling let down by the system. That is understandable, Fibro is a frustrating condition and I can understand that inadequate treatment has left you feeling let down.
I also understand that you are busy with work and time is precious, I would imagine that the free time you have is jam-packed with pain and fatigue, however understanding of the condition you live with is going to benefit you in the long run. Without knowing what your condition is about you will continue to get medical professionals that make you feel as though they are amateurs.
Remember your GP cannot possibly be an expert on every illness of every patient they have. Without you the patient saying I am concerned about this, I need to see someone in this field, that frustration is unlikely to end.
Expert Patient is a phrase that we use. You can become an Expert Patient without doing the NHS Expert Patient Programme (EPP), but the EPP is the NHS course to help people become Expert Patients.
Make sense?
it wouldnt happen if we had cancer, but with fibro or cfs, we re sent to phychologists etc , never really gaining any answers, Im sick of being asked if Im depressed, well I wasnt until all this,I was with the same gp for all my life, she seen my have my kids, knowing Im not one for doctors, I rarely went only when I was pregnent,
when I started getting ill, she was no help what so ever,
It took my hubby to have a breakdown due to my illness for me to be pointed to social services etc, through a great social worker Ive got a wheelchair, carers, waiting for blue badge, I changed gp recently and shes been a god send, I know me, I know I dont fake, Im not a benefit cheat, or insane, what I am is ill
It is essentially the same thing in fact I am pretty sure that has been lifted from the book they give you on the course.
I can see why you want the Drs to be the expert.... look at it this way..... Does any other single person on the face of the earth know how things feel in your body?
No. Why? because only you know you and what this post in the link is saying in a convoluted way is that you are the master of you. You know how you feel and what feels wrong. Additionally they are saying that in order for you to get the best from the health care system you need to know what is wrong, what might help and what you are putting in your body to help.
I know convention dictates that when we are ill we should seek professional help and we should but we need to also assume control of our bodies.
If you do not take control of your body and its need you will always feel at the mercy of others.
This is exactly what being an expert patient is about
An expert patient is an expert in how their condition(s) affect them. They are not supposed to be experts in how their condition(s) affect anyone.
Talking to doctors is something you can work on, if you're interested (there's an article on this on the FibroAction blog). Sure, in an ideal world every doctor would not be prejudiced and would have the time to go through everything thoroughly with you, asking the right questions and giving you plenty of time. But NHS GPs in particular are very limited in how much time they can given each patient in each appointment. And many doctors have been taught out-of-date concepts about Fibro, so we're fighting against their training.
Well, please do tell me where I can find this course.
Regarding "Expert Patient" let me tell you my true story.
I saw a specialist consultant (Consulant X) who was/is at the top of their profession in a major hospital. I was told by this consultant (Consulant X) that
"I had fibromyalgia and there was no cure, nothing could be done!"
I was not examined, I had no discussion, nothing was done for me!
I was just given the pain killers Acupan which now, I believe has been shown does not work as I have said all along.
Because the Consultant (Consulant X) was a top professional at a top Hospital I took them at their word that "nothing could be done"
Months later, at a self help group I heard other patients singing the same consultants (consultant X) praises. I thought to myself this can't be the same person?
I found out these people singing the praises were the consultant's private fee paying patients (£250 an hour).
I did some research. I found out that contrary to what the consultant had said to me that in fact much could "be done" for Fibromyalgia. Indeed, the consultants own private web site said so!
I realised there was a complete two tiered service that existed with this consultant but only the fee paying patiients were getting a decent service!!!
My blood began to boil! And my heart began to die.
It seemed to me from what others said that the NHS patients just got pain killers and 5 minutes of nothing!
The more I researched this, the more I realised I was right! I spoke to others who had had the same NHS bad treatment!
I found an internationally renowned specialist (Specialist Y) who some of the private patients had spoken about. I entered into dialogue with this specialist.
I asked about a treatment method that some private patients said had cured them which was as a result of the International specialist's (Specialist Y) research. It involved a medication that I found neither my GPs nor specialists (and I saw several) were prepared to give me!
I wrote to the International specialist (Specialist Y) to ask them how I could get this treatment and the medication.
The International specialist told me not to worry because they had contacts who could help me.
Next day I received an email from? Guess who??
It was consultant X asking me to make payments to "XXXXXX"!!
Draw your own conclusion.
I could tell you much more but everything I've learn confirms what I have said here.
It was later suggested I was not "Expert" enough in asking the right question to Consultant X.
Apparently they (Consultant X) are not naturally talkative and as the "Expert" patient its your fault if don't manage to extract the information needed to get well from them in the 5 minutes you gett!!!!
my first consultant did a few reflex tests diagnosed cfs, spoke to me from behind a pulpit, and discharged me no mri nothing, the 2nd found I had a fracture t4 and a spinal syrinx, tested for cancer, and then discharged to see phychologist, who thought prob cfs, 2yrs lately after crawling around and screaming with the pain, he then thought fibro, changed gps, got sent to rhuemmy today, after 3 days wait , she examined me , read all my notes, and said fibro, but again discharged me, as theres nothing they can do for fibro
I've just taken a look at the course and have asked to be included in it . I agree that it would be nice for doctors to be " experts " in the condition , but I'm willing to do anything it takes to ensure that the short amount of time I get with my doctor is used to it's best advantage and if that means taking a course and learning what questions to ask then I'm more than happy to do so.
I think there will always be a 2 tiered system with regards to health care , private patients pay top money for a consultant's time so it follows to me that they are going to get better treatment . Is this fair ? No ! But it is life .
In the last few weeks my health has deteriorated quickly and today I was told by my GP he thinks that whilst I may have Fibro , he thinks there is also something else underlying this and wants to investigate further .He's starting with blood tests and has put me on Diazepam to try to deal with the severe muscle spasms I'm having in the mean time. However , my fiancé called him out after finding me crying like a baby with the pain this morning, and my fiancé stayed in the room while he examined me and insisted he didn't fob me off. Did that make a difference ? I don't know as I've never seen this GP before.
For the first time in a long time, I felt someone was taking me seriously . That helps enormously and I'm hoping this course will ensure that happens all the way down the line.
"I think there will always be a 2 tiered system with regards to health care , private patients pay top money for a consultant's time so it follows to me that they are going to get better treatment . Is this fair ? No ! But it is life .
"
I don't accept that thats life. We have an NHS. We have a government. We are supposed to have charities that I would have thought might want represent all the people the charities represent.
These health professional should be being held to account but all we get is. "Thats life".
I bet I get held to account now for daring to disagree with other people whose feelings might be hurt by this. But then I'm an easy target.
May be we should just give up? Old ladies get mugged. Oh well thats life is it?
Mojoman, I didn't say I agree with it . I don't . It's unfair but it is the way it is. How can I , or you , change that ? If you know of a way to change it , I'm more than happy to back you .
My feelings are not easily hurt and I suffer the same frustrations you do .
I've been battling with the NHS for over 30 years now ! Frustrated ? Damn right I am.
I think alot of us have got other conditions making treatment very difficult,, I see a neuro for epilepsy, orthopedics for my back and bone probs, an eye specialist, incontance clinic, a phychologist,now I need ortho surgeon for my bent finger, the list goes on, trying to get them to agree on a treatment is impossible
No one should receive superior treatment because they can pay. Private medical is about jumping queues and nicer surroundings. It is not about denying anyone treatment for there condition.
I would be concerned about any treatment that is offered on the basis of an email requesting payment..... I would say they are praying on those in need.
Your local PCT(primary care trust) should be able to point you in the direction of the Expert Patient Programme in your area.
I would hasten to add that the rheumatologist in my town is one of the countries leading experts on fibro, he does research programmes, from the uk withe the American Council of Rheumatologists, I trust his judgement and he is NHS. Needless to say anyone offering a "cure" for fibro for money is talking from somewhere in the anal region.
I am in Southport Merseyside, if you are in or can travel to see DR BINYMAN I would recommend him. HOWEVER he does not offer a cure .he looks into many forms of treatment including medication, physio and psychology, helping you to find ways in coping with the many problems of fibro.
I am really sorry that you have had such a hard time finding help.
I would start by:
A) Finding a new GP.... speak to people here, on the forums at
FMA UK. find people in your area and see who is recommended.
B) make a complaint about Consultant X and Specialist Y on the first link i have posted.
An expert patient is not a clinical expert in their condition they merely know their rights and have looked into their condition and the possible treatments.
You have had an awful experience and I empathise with your troubles.
If you would like to PM me with your area I do not mind searching out the programme in your area for you.
Actually, NHS funding priorities are strictly controlled and have to be, because the funds are not limitless. So some drugs are not available or only available in certain circumstances. Some tests are not available or only available in certain circumstances. Some treatments are not available, some are limited - e.g. you can only get a limited amount of physio appointments per referral usually.
And another issue we've seen more and more over the last decade is that funds are diverted to certain priorities - e.g. Cancer, Diabetes Type II, smoking cessation, etc - either because of Government targets or because of high profile cases, such as funding of cancer drugs. When it's in the news that a PCT has agreed to pay for one person's very expensive treatment for cancer that would not previously have been paid for, the PCT doesn't get more money to fund that, so money has to be taken from elsewhere. Ditto if one area has more of a problem with smoking related health problems. This is a problem across long-term conditions, especially neurological conditions. And the sheer numbers of people with Fibro (compared to say MS) don't help with this either. It shouldn't be like this, but that's how the NHS is set up.
I'm withdrawing from this blog .
Tension and stress are things I'm keen to avoid right now.
Mojoman I hope you find an answer . I think Sapphire Stanton has offered you a good place to start and I wish you well.
Well I don't mean anything personal. You seem like a nice person.
I just get frustrated with the system. Sorry if I said anything to upset you.
I think I may withdraw as well for a while.
Best wishes.
mojoman, weve all been in a dark place at times, and if you need any help, heres the place to be, this illness is a pain in the ass, it can be all encompassing,we dont get the help we need and deserve, and why the hell should we pay for it, my family and I have paid more in taxes than we ll ever get back,hopefully you will get the help you need, wishing you well
wow that all stirred everyone up a bit i think you should all take 5. no one will ever agree on everything so i think it is best you all have your own opinions and respect each others i cannot comment on it as never seen it but i think there was such alot of good advice given and pwerhaps we should all take the time to read through it thoughly and then see how we all feel
that was a debate and a half it is good to get the juices flowing but dont want us all so stressed we all end up with a flare up
No one should receive superior treatment because they can pay. Private medical is about jumping queues and nicer surroundings. It is not about denying anyone treatment for there condition.
"
I could not agree with you more. Thats what I believed was the case but was shocked to find lots of people think this is ok including someone at the GMC
who on told of the story I have told you above wrote
"The fee of private practise is determined between the doctor and the patient, and there will naturally be differences between the treatment options offered"
"
The phone number of my local PCT and PALS lead to the same woman who when I complain about the treatment I have got and continue to get says so often
"Well, what can I do?"
that its like talking to someone with Torrets syndrome. She also tells me that the body she represents will be abolished next year so she can't do anything.
I also spent two years complaining to the Ombudsman unsuccessfully because I had no evidence.
" Needless to say anyone offering a "cure" for fibro for money is talking from somewhere in the anal region.
"
Well I know people who have been cured with this medication. The issue that Consultant X only gives out this medication (Dopamine Agonists) to the private patients.
Thats why I have had to get mine from a web site in India.
Now I am self medicating. i.e. I am my own doctor.
Welcome to the health service in this country in 2012!!!
Its absolutely disgusting and the drug I am taking - Ropinerole - can apparently have severe side effects. I am going to have learn as I go along because I can't get a doctor to help me. Im also on Anti depressants which I am having to change. Its an absolute outrage.!!
Thanks for the offer of help.
Btw its not Specialist Y I am upset with. They are a good well meaning person who is unaware of Consultant X's methods.
No one medication can completely treat or "cure" Fibro on its own. If you were referring to my case, I had multiple treatments as well as medications, which were also essential. My Fibro may be largely in remission but it is certainly not cured.
Thanks Saphire but this is what happens when you have the sort of doctors we have in this country who are motivated by other things than their patients health as I have tried to say within the guidelines imposed by this forum.
Im probably not even allowed to say this because as we all know all doctors in this country are wonderful arent they ;-)?
You didn't upset me Mojoman . I can identify with your frustration 100 % . I've been fighting the NHS as I said , for over 30 years .
At the moment I just haven't the strength to fight any more .
It's not you that upsets me , or causes me stress . It's hearing yet another account of how someone is let down by the system.
I did contact my MP , he responded to me immediately , however whether he will actually be of any real help remains to be seen.
I have had to see specialists privately in the past.
We have had to make many sacrifices in order to be able to pay for our private health insurance.
Basically we have had to pay twice for medical attention - through taxes and private insurance - simply because we have lost all faith in the NHS. And that is really not fair.
Had I left it all in the hands of my GP, I'd still be on paracetamol only.
Our insurance doesn't cover the treatment of chronic illness - it just pays up to a certain sum for a specialist to make a diagnosis and to advise on what to do next.
I'm back on the NHS now as far as the fibro is concerned.
Hang on, please don't presume that all private patients are rolling in money.
It's how you choose to spend what you do have.
We live very frugally, and can't afford it at all - but, as you have implied yourself, sometimes, needs must. The list of things we have had to go without is too long to post here.
We have had to borrow. But that is nobody's business but ours.
Paying privately has both helped and hurt us.
I think I understand what you are trying to say - we need an expert NHS.
We need doctors and other professionals who can help us understand and manage our condition in the best way possible - to help us become "expert patients".
Actually, most of the treatments I used were not from the doctor in question. Some were NHS, others were private but sourced independently (such as myofascial release, which is not available on the NHS). I also had to do a lot of work myself - physio only works if you keep doing it yourself.
I am not rich, my family is not well-off. At the time I got private treatment in desperation, my husband and I were in debt thanks to me not being able to work due to poorly treated Fibro. We had help from family (who are not well-off either but found the money somehow) to pay for appointments. When I changed (NHS) GPs and got a good, supportive GP that I could work with, that really helped.
What we are trying to do with promoting the idea of becoming an expert patient is help people with Fibro to make the most of what they do have available to them and to help themselves as much as they can. I see nothing wrong with this.
FibroAction is a small, completely volunteer run charity. What we are able to achieve is limited by resources - both people's time as volunteers and money. As an organisation, we have always made a point of trying to achieve the most we can with the little we have. If people with Fibro have the information they need, then that can empower them so that they can make a difference.
If anyone wants us as a charity to do more work in different areas, then we need support to do that, both in terms of people actively volunteering to get involved but also in terms of raising funds.
Cancer charities have achieved a lot in recent years because people went out and raised money for the charities. Without that, they could not have done all they did with cancer. It's how charities work.
You may not be rich but as I have said private health is just not an option for some people and we both know there is a difference in treatments, don’t we Lindsay?
You Lindsey, have helped me a lot with Lynn free of charge so I am very grateful for what you have both done for me!
But I really feel, for starters, what you have both done for me should have been done by health professionals who are paid to do this. Even if they can’t do everything as argue they could at least provide guidance.
Instead I have had absolutely nothing from the Professionals. That is zero. Null. This has been a dead Parrott!
Before I start getting the mantra
“In an ideal world…….”
I need to tell you why I so against this “Expert patient” thing.
When I first became ill with depression/anxiety/OCD/chronic pain at the tender age of 16. I was in a panic state. I sought a way out of my hell. I had no one to talk to or contact. It was a desperate fight for survival.
So I began to read every book I could on Psychology. I tried to become an “Expert” in this. I found out there was Freud, Jung, psychoanalysis, behaviorism, humanism. Then there was ‘Popular’ psychology written by every Tom Dick and Harry.
At that age I was suggestible and believed everything I read. I tried all the things suggested. However, the more I read the more problems I thought I had. In short I became even more neurotic and mental than I had been to start with!
At the same time I did the same for my physical issues. I tried, yoga, relaxation, I saw doctor after doctor, I tried Eastern religion, Western religion. Every time somebody suggested some illness I thought I’ve got it!
This went on for years.
To cut a long story short, at some point, I realized this was madness. I realized that I was a vulnerable person and I was not equipped to be making judgments about my own health but that the doctors, nurses and other health professionals have had long periods of training after which they have dedicated their lives to health. They, or at least the body of the health profession, must be the real Experts and I must rely on their judgment.
Now, I understand that many people in this health profession can’t necessarily be trusted to do their jobs. I have experience absolute incompetency that would be funny if it did not have so many tragic consequences.
So what do I do?
Well I complain!
I have complained about the last two absolutely diabolical Psychiatrists I have had. I have been a regular pain in the xxxx until the complaint was given the correct respect.
The result? They have eventually listened to me and now I have the best Psychiatrist I have ever had!
I can’t be a Psychiatrist. I learnt that a long time ago. But I can make those Psychiatrists who don’t do their jobs, accountable!
And I don’t give up until they are accountable!!
In the world of Fibromyalgia it seems no one is accountable. But I will not give up until they are!!
In the same way I realized I could not be a psychiatrist I also know I can’t be a nutritionist, physiotherapist, and all the rest of it as this ‘Expert patient’ agenda seems to think we should be.
It’s good to be informed yes, but ‘Expert’ no.
As I have said lots of people are even less able to be ‘expert’ than me for a number of reasons.
What this charity should be doing, is making those responsible for coordinating, providing guidance and implementing the best practical solutions for us in the short term (i.e. the Health professionals) do their jobs.
Now, I will personally chain myself to some railings if it helps but we have to stop just letting these people just get away with this! Too many people keep just giving excuses for these people or are just apathetic!
I understand that Lindsay and Lynn have put much more time into this and have been doing this much longer and are much more knowledgeable than me about Fibromyalgia and the machinations of the Health organizations, but I have to tell you what I feel and strongly believe from where I am standing.
“If anyone wants us as a charity to do more work in different areas, then we need support to do that, both in terms of people actively volunteering to get involved but also in terms of raising funds”
I will support you and get involved if I can but not in a philosophy such as “Expert” patient that I don’t support. But please make suggestions how I can get involved
The thing is, for me reading this, that actually, you've just argued the case for expert patients. If you don't know anything about how you should be treated, how can you call out doctors or physiotherapists on not providing you with the most helpful treatment - as you did with psychiatrists? Informed consent in medicine means that it is the patients choice on what is done. If you don't have a clue about what should be done or what the consequences might be, how do you choose? A doctor can advise, but if you know nothing, you are relying on them to know the subject inside-out, to tell you everything and to not put their personal spin on it.
In recognising that we can't change everything overnight and that the NHS will never be able to pay for everything (though I am not saying that funds are well used within the NHS now!), we are only trying to help people help themselves NOW, rather than waiting for the day when all healthcare professionals in the UK are up-to-date on Fibro and the NHS has unlimited funds for every condition. That doesn't mean we're not doing what we can to change the situation as well.
I'm leaving my baby girl overnight for the first time in 10 days so that I can take advantage of an opportunity for FibroAction and speak at a conference for 150 doctors & other healthcare professionals. I'm not doing that for fun, but because it is an opportunity to educate some healthcare professionals so that they can go and help their patients better. We're doing our best, really we are!
"The thing is, for me reading this, that actually, you've just argued the case for expert patients.”
No, because I don't need to be an expert in anything to know if someone is taking me for a mug or not!
For example (true life examples), if you say to a Psychiatrist several times "I'm feeling suicidal" to which he replies "Thank you very much Mr. XXXX" and shows you the door! Then you know something is not right! (That was the first Psychiatrist I complained about).
Similarly, if you ask your Psychiatrist to do some research for you. Then he doesn't, but keeps saying he's been busy but says we will talk about it when I see you next week! By then it’s too late because then he has not done the research you wanted to talk to him about!
Then you find out instead of actually seeing you next week, he has instead booked his annual leave, your appointment have been cancelled, and he knew all about this before he said "see you next week". Here again you also know something is wrong! (That was the second Psychiatrist I complained about)
After these incidents I refused to see these "Professional" Gentlemen any more. As a result I also kicked up a fuss to say the least.
Result? I have now got a doctor I have complete faith in. She understands all my needs and fears and is treating me accordingly. I don't need to be an "Expert" to know if someone is good at their job or not!
Similar to these stories, I knew Consultant X was no good (at least to those on the NHS) without knowing much about Fibromyalgia. I did not need to be an "Expert Patient"!
"In recognising that we can't change everything overnight and that the NHS will never be able to pay for everything (though I am not saying that funds are well used within the NHS now!"
I am not asking them to pay for everything! All I ask is for a bit of guidance, for which it seems to me, and I speak for experience, we are getting none! Also a bit of respect, professionalism and honesty is lacking. How much does that cost?
"We are only trying to help people help themselves NOW, rather than waiting for the day when all healthcare professionals in the UK are up-to-date on Fibro and the NHS has unlimited funds for every condition. That doesn't mean we're not doing what we can to change the situation as well. "
You could almost convince me with this argument but for the fact I know you are a fan of Consultant X aren't you? And you seem to be turning a blind eye to what I and everyone else has told you about them. You don't appear to doing anything about the current dire situation of being an NHS patient under Consultant X. If you don't accept this you are suggesting that I others are not being truthful I can only assume.
In doing so you are supporting the 2 tiered system, which supports the fact all these poor vulnerable people (Oh sorry "Expert patients") need to have walk around with these checklists trying to extract information from disinterested health professional who probably have their minds on all the money they are going to earn with their private practises later on!
If Consultant X and his like were made to do their jobs properly like my Psychiatrist and my libido doctor seem to manage ok, on their apparently limited NHS funds, we all wouldn't all have to resort to these measures you suggest.
"I'm leaving my baby girl overnight for the first time in 10 days so that I can take advantage of an opportunity for FibroAction and speak at a conference for 150 doctors & other healthcare professionals. I'm not doing that for fun, but because it is an opportunity to educate some healthcare professionals so that they can go and help their patients better. We're doing our best, really we are!
I can't argue with your seemingly selfless work and indeed I have benefitted from this myself!
You obviously have an aptitude for this sort of thing and we would all be worse off (to say the least!) without your efforts.
I'm not a "fan" of any doctor and do not support anyone with blinkers on. I have been helped personally by certain doctors in the past. But I have never had a single doctor that could provide me with all the treatments I needed, or that knew everything about everything that affected me. You mistake pragmatism for favouritism.
Have a look at all your threads about this person and tell me what you would think if you were me.
in an ideal world we shouldnt have to fight for any treatment,and we certainly shouldnt have to pay, good health shouldnt be limited to the rich, its our basic human right,fighting these illnesses is bad enough without trying to fight the medical profession, its so easy for them to write a script, hand it to you and say goodbye,I now go to gp armed with a note pad of how Im feeling, Ive medicated myself in the first 12months and spent hundreds if not thousands trying to get better, all I did was damage my liver
mojoman be careful of dopamine, my mum who suffers from essential tremors and cervical dystonia is on this and its taken its toll on her,please try and get some medical help
Well I also am taking Ropinerole with a view to treating my lack of libido caused by 20 years of being on SSRI anti depressants. I quote
"Dopamine agonist can be used to treat PSSD. Doctors have used them with good success. There is also an ongoing clinical trial to test the effectiveness of the dopamine agonist Requip (ropinirole) in reversing the symptoms of SSRI-induced sexual dysfunction and Post-SSRI sexual dysfunction. The drugs that can be used are Mirapex and Requip [Ropinerole]".
That was 5 years ago and I know other PSSD have used it successfully.
PSSD again was something denied by doctors to me for 20 years and is described here
en.wikipedia.org/wiki/Post-...
So the drug will hopefully have double benefits for me!
I will be taking the dose of 1 mg daily on the advice of someone who has already tried it in another PSSD forum.
I don't know the dose for Fibro because all I get
as I have said from Fibro doctors is brick wall.
I guess I will have to do my own research here as well.
Its a good job my job has ended now as I probably would not have time to become an "Expert" in this.
I applied for the online expert patient course last night as I'm agoraphobic and wouldn't be able to attend in person.
I got a reply today , it's not available in my area as an online course unless I can persuade my health authority to stump up £175.00 plus VAT . Not very likely to happen from initial enquiries I've made .
I think you have to take into account mojoman that lots of people suffering with FMS and other similar conditions have no fight left in them. It's debilitating and causes extreme fatigue .
Apathy is something that happens when you run out of energy , at least it is in my case .
Years ago I single handedly took on the local council and fought them tooth and nail to have my autistic son statemented so that he could get the support he needed in school. These days I don't have that kind of energy reserve.
5 years ago I had my disability benefits stopped even though there had been no change in my condition and again I fought them to the end and had them reinstated . I'm possibly facing that again later this year , this time the thought fills me with dread because I can't leave the house and some days can barely leave my bed. I'm all out of fight .
I wish you the best of luck in your battle , I really hope you can achieve your aim but for myself , with the amount of pain I'm in I WOULD settle for the correct pain relief , whether I can be cured or not .
Incidentally, my cousin is a secretary for a private clinic in the Midlands . She offered me a discounted appointment with the Rheumotologist at the practice . He's the same Rheumy who I saw at the local NHS hospital. I refused her offer . He discharged me back to the care of my GP saying there was nothing could be done but pain management , which was available on the NHS . Maybe I should have gone and found out what he would say to me as a paying patient .
Gracie, I have heard this arguement before many times.
I never suggested anybody "was rolling in it"
But we are all on a continuum in regard to the amount of wealth we have.
But I can tell you last year when I was on £65 a week benefits out of which I had to pay half of that on bills that I definately could not afford Private health regardless of how many sacrifices I made!!
You admit
"Paying privately has both helped and hurt us. "
and
"And we shouldn't need to pay twice either."
So we are in agreement!
Personally I would not line Greedy Consultant X's immoral pocket even if I had the money. Although I am so desperate to get well so would probably pay some one else if I thought it could help. Thats how desperate I am!
But this situation is a bloody disgrace
As SaphirStanton above said
"No one should receive superior treatment because they can pay. Private medical is about jumping queues and nicer surroundings. It is not about denying anyone treatment for there condition"
Thats what I and other were always brought up to believe when they took the money to pay for the NHS out of our wages for all those years.
We thought the NHS would look after us when the time came!
Now it seems that you get less treatment on the NHS ie pain killers that don't work, against proper treatment if your are prepared to pay twice.
I don't apologise for going privately. I didn't jump any queue because I wasn't even allowed to join the queue on the NHS!
With money I could ill-afford, I got the diagnosis I needed - and a medical report to help with my DLA claim.
And all the treatments and medications I have had have been on the NHS.
My beloved auntie went into a private hospital for keyhole surgery. I'll spare you the details, but when things went wrong, she had to be rushed 15 miles to the nearest NHS hospital where they fought tooth and nail to save her. She got "superior" treatment on the NHS. Only it was too late to save her.
We have to think very carefully about going privately as we have to pay £200 excess for every claim.
We are waiting to hear if my husband is to be made redundant at the end of this month. If that happens, we can kiss our private health insurance goodbye.
I have always agreed with you that there should be no need to pay twice. Or more than twice.
You are buying your medication - I'm certainly in no position to buy mine. But I respect your decision.
It's been really hard going. You have your story. I have mine. Putting two kids through university has bled us dry. Student loans don't even cover their rent. But I don't begrudge a penny of it.
We should focus on what is important here - that the NHS isn't meeting our needs. And, in many cases, the private sector isn't either.
Hi Lynn,
In the e-mail they explain they are only funded to hold online courses in certain post code areas and mine isn't one of them . I've been asked to fill in the application anyway and if there is a place available through cancellation they will consider me .
I will of course do as they suggest but it seems even this is a " post code lottery "
My comment about queue jumping was not a criticism i must add. if you can comfortably afford medical then it is the responsible thing to do, reducing the strain on the nhs. if i could i would. however it is off when the nhs has to clean up the mistakes of the private sector.
I do echo lynns comments about the contraindications of medication.
i think.i can speak for the majority when i say we ALL want a cure, however as Lynn says you cannot cure something with an unknown cause. please be careful with you medication.
I do have one question though. IF you had received adequate care would you not want to understand what is happening to your body? what i am getting at is.... does the concept of expertise in your condition bother you because the medics you have seen seem not to know, or do really not want to know about the condition you live with?
I also think some private docs/hospitals are taking advantage of people who are disillusioned with the NHS and therefore turn in desperation to the private sector.
Some of the older private hospitals are beginning to look a bit the worse for wear now.
And when I had surgery on both hands, they sent me home far too early - when I told the consultant at my follow-up appointment, he was furious.
Actually I booked in for that appointment about 15 minutes early - but they lost my name and had put me down as a "no show". And I was paying for this!
When my auntie died through negligence after surgery at a private hospital, my cousin (her son) was sent the bill. Nice one.
One health worker was telling me about a new NHS hospital, but I forget where it is.The rooms all have en-suite. Pity all NHS hospitals can't be like that. I hope it doesn't have to close for lack of funds.
You have made some very good points Sapphire. Certainly we have to tread carefully where our meds are concerned. I've heard too many horror stories about substandard meds being sold online.
Personally, I feel the need to know about my condition and how to go about living with it.
I was so impressed with the NHS Pain Management Clinic that I attended that I became a member of their Service User Satisfaction Group which would meet every few months to discuss how to improve the service and to go through feedback from patients.
I had to give that up as driving myself there was becoming increasingly difficult. But I got to see what went on behind the scenes and how the professionals there were bending over backwards to do what they could within their means.
"does the concept of expertise in your condition bother you because the medics you have seen seem not to know, or do really not want to know about the condition you live with?"
Nothing too complicated. It is the former. But it is also the complete contempt and indeed deceit with which I have been treated.
I am grateful for everything you are doing for me. If it was not for you going beyond the call of duty in my case I would be truly lost! But what does that tell about our current system?
All I (and I imagine anyone else wants) is the same opportunities as everyone else. This is currently not the case.
You say there is no cure, but I know people who claim to have helped people beyond just relieving the pain. I and NHS patients also have a right to try these methods too.
Anyone who says we don't have the same rights to the same benefits others have had, is in my opinion immoral. Remember we have already been paying for the NHS all our lives on a promise.
It seems to me the goalposts have been moved recently about what the NHS is supposed to do. It was supposed to provide the same health for all. Now when we ask for this we just get
"In an ideal world...."
Well, in an ideal world we would not have people who lie to their patients, treat them with contempt and could not care less. People who just seem motivated by money and also other people who don't hold them to account as they are supposed to but turn a blind eye.
And we also would not have people who seem to think it is ok for NHS patients to be just given pain killers and nothing else (as I was and so have others) whilst not even trying any of the other things available.
If it really is beyond the realms of the NHS tax payers purse. Then at least have the decency to tell us this. Not
"Theres nothing that can be done"
which I know in at least case in my experience is an absolute lie!
I spoke about Dopamine Agonists as advocated by Specilaist Y. I'm not saying this is necessary the answer. But I would like to have the opportunity to at least try it!
The door was blocked to me (unlike our private patient friends) on this (Dopamine Agonist) so I made a way around it and I get it from India now.
People on the NHS are not stupid. We need guidance, but as I have said from my experience -and I have seen at least 6 different consultants in the few years - there is absolutely none!
Information is withheld from us which we are entitled to know. We should be given all the information so we can make an informed decision.
Getting back to the 'Expert Patient' thing. The doctors should be the ones telling us not us telling them. If that is no reason not to make them accountable I don't know what is?
If a bunch of amateurs can seemingly appear to know exactly what to do in terms 'expertness' why cant those who are paid to do this do this as well?
Would it be too much to ask someone who represents these bunch of amateurs to pass the word along to them?
As far as the NHS not having enough money (which I don't accept). How does that explain the complete mismanagement that currently exists.
Nor the complete lack of accountability of the professional. Indeed its obvious some people are currently acting in a completely immoral way (no names of course) motivated by money, but we a not allowed to talk about this are we?
I better wash my mouth out with soap and water.
I have never received a word of advice to help me by the professional. I have only ever received any advice by amateurs.
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Fibro specialists - we need you - 
So this is what my doctor said
Do Doctors REALLY care?
DOCTOR, IS THIS GOOD PRACTICE.
Pip 'we now have all the information we need' letter
