OCD Action

Unregistered

This will probably not go down too well, but it’s been worrying me for some time.

Frequently, replies to other members (often new ones) state that a person should go to her/his GP for a diagnosis. It’s also been said that self diagnosing is frequently wrong.

I’ve discussed this with several friends, because I wanted to see if I stood alone on this one. Many were not diagnosed by their GPs and several were sent away after being told ‘it’s just a few thoughts’ or ‘you are just anxious/depressed’. I think this is a condition which can often be diagnosed by a sufferer, by reading books and online information. A GP (some know little about the various symptoms of OCD) has eight minutes or so to diagnose. An individual has possibly years of living with their obsessions and hours to read books and research the nature of the problem.

I appreciate that no-one here should attempt to make a diagnosis, but it does worry me that the impression is given that GPs will always accurately diagnose OCD, or at the very least, refer patients to someone who can. If only this were always the case.

Obviously, we need to see a GP for help etc, but I do wonder if certain advice is misleading for new members.

Fri Feb 18 2011 14:10:41 #
Tess
Member

Hi Tricia
I understand exactly where you're coming from and I agree that many GPs have a very poor understanding of OCD but what they do have is the ability to refer a patient on for specialist diagnosis and treatment and this is why I have advised new members to go to their GP. A lot of sufferers benefit from medication and this can only be obtained via a GP. Also with the new government plans with GPs taking control of NHS finances we will be even more dependent on their help.

Fri Feb 18 2011 18:21:41 #
Lynda
Member

Hi Tricia
I think you are right, thinking that a visit to the GP is magically going to take the horror away is misleading. However, I agree with Tess in that even admitting that there is a problem is the first step on the road to some sort of normal life and a visit to the GP is often that first step. It might take more than one visit to get them to take you seriously but it shows ocd you have had enough and are going to do something about it. That must be a start?

Sat Feb 19 2011 7:34:12 #
Tess
Member

Lynda, that is an excellent point and I agree with you entirely. But I also agree with Tricia that there is a problem of inaccurate diagnosis amongst the medical profession and to my mind a much bigger problem of well meaning yet incorrect advice from people and relatives who work or know someone within the medical profession and think they understand but they are very clearly barking up the wrong tree and can do a lot of harm. But all we can do is just keep chipping away at lack of understanding and prejudice until we win through.

Sat Feb 19 2011 10:16:31 #
Unregistered

I hope that no-one misunderstood me and thought I was saying not to advise anyone to visit their GP. Obviously a visit to the GP is necessary, it‘s also the first step to a referral. I merely worry that some messages state that a GP will give a ‘proper’ or ‘accurate’ diagnosis. This gives the impression that GPs will always be able to correctly diagnose.

The author of one book I read on our condition, suggests we ask our GP to read it, if he/she is unsure about the patient’s problem. I would be reluctant to do that, as some doctors would not take too kindly to it. However, that particular psychologist realized that not all GPs have a clue about OCD.

All I am trying to say is, I think it’s wrong to give the impression that all GPs will be able to correctly diagnose. Yes, we need to visit them, but if they tell us we just have depression etc and we feel strongly we also have OCD, we need to push for a referral and not just take the GP’s word. Sometimes the patient does actually know best!

I’m certainly not advocating we should all stay away from our doctors’ surgeries, far from it.

Sat Feb 19 2011 12:30:38 #
Gigolo
Member

I would just like to say in the nicest way possible that those responsible for:

- Hollyoaks
- Eastenders
- Coronation Street
- Emmerdale

....and any other soap, can all go to hell for the years of torment it has caused me, and having to hide in my room, because something might be said that would aggrivate my OCD. I'm in a great mood today

But I feel I speak for everybody when I say that soap makers are all scum.

Sat Feb 19 2011 13:05:19 #
Gigolo
Member

Soap opera that is

Sat Feb 19 2011 13:06:07 #
Gigolo
Member

The reason I mention this is because they make it seem as though people turn into their worst fears overnight

Sat Feb 19 2011 13:07:23 #
Unregistered

Giles, I've never watched any of them, but reading your messages, I am thinking that's probably for the best.

Sat Feb 19 2011 14:00:22 #
Truddles
Member

Most of us know or have a strong inkling that we have OCD before we seek professional help but that isn’t a diagnosis - only a professional can make a diagnosis especially on something so complex. Self diagnosis can be dangerous and can even delay or misdirect treatment.
I agree that a lot of GPs and for that matter Consultants and Mental Health professionals are ignorant of the facts about OCD, but there is a wealth of information that we can take to the GP, for instance the OCD Action GP card, to back up our case.
I fully agree that there is a problem with inaccurate diagnosis amongst the medical profession and that is why we as OCD sufferers need to find out as much as we can about OCD and our rights so that we can present our case to our GPs and get access to the treatment that we’re entitled to. And we are entitled to treatment and support.
Like Tess I too advise people to see their GP. It’s the GP who has the ability to refer us on for specialist treatment and in a lot of cases prescribes any medication for our OCD.
I don’t think anyone on the forum has given the impression that GPs will always accurately diagnose OCD or at the very least refer patients to someone who can. Sometimes it takes more than one visit to get your point across and for them to take us seriously. But as Lynda says it’s the first step on the road to recovery.

Given that GPs only have a limited time with each patient there are things that we can do to make the most of the available time when we see our GP. See the advice given at http://www.ocdaction.org.uk/support-info/treatments/

It’s all too easy to get flustered once we find ourselves sat in front of a health professional especially if we’re seeing someone about our OCD for the first time.
If you’ve not yet been diagnosed by a professional don’t go in to the GP saying ‘I’ve got OCD.’ as this can antagonise some doctors a better way to say it would be ‘I think that I might have OCD because. . . .’ and then list the problems that you’re experiencing with your OCD.
Don’t be embarrassed or afraid to tell them what’s going on. Sometimes it’s easier to have it written to show someone than to say it out loud.
So write everything down that you want to say including a list of your OCD problems and any questions that you might have about for instance treatment.
Don’t forget that some things that cause us extreme distress might seem trivial to someone without OCD, so we need to emphasise the true extent of the impact that these things have on our daily lives. By emphasising the impact the OCD has on our lives the more likely we are to be able to get the GP to realise the severity of our OCD.

There is a wealth of information on OCD on this website at http://www.ocdaction.org.uk/support-info/ so find out as much as you can about OCD before you go to the doctor.

Remember as forum members we’re here to support you especially if you find that you have problems accessing treatment.

Sat Feb 19 2011 14:10:03 #
Unregistered

I do realize that my writing seems to be ambiguous, I’m not sure why, I try to make things very clear! But, I have always (including in this thread) advised seeing a GP! I also spoke about needing to do this in order to be referred. My only concern is the assurances sometimes given on the forum about such diagnoses by GPs being ‘accurate’ etc, when obviously this fails to be the case so often.

I do disagree that self diagnosing is a bad thing with a condition like ours. That doesn’t mean to say I am implying we should then treat ourselves (although many do and sometimes more successfully than the professionals!). I don’t view self diagnosis as dangerous at all. We are not talking of an attempt at DIY psychosurgery here! Trudy, you wrote: "Self diagnosis can be dangerous and can even delay or misdirect treatment." Many times inaccurate diagnoses from GPs have delayed and misdirected treatment and this can certainly be dangerous!

Trudy, you also said “Only a professional can make a diagnosis, especially on something so complex” However, it is the complexity of the condition that can confuse GPs, who often only recognize the more obvious symptoms, like washing and checking.

We have read messages here from sufferers who have been misdiagnosed by GPs, even told to go away because they just have a minor problem with their thinking etc.

I worry that the wrong impression is given concerning GPs knowledge and experience of OCD. I just feel something needs to be added to this kind of advice.

If people are forewarned that not all GPs will be able to diagnose and they need to be prepared to ask for a referral, they are less likely to leave their doctor’s surgery, believing they don’t actually have OCD, because a ‘proper’ diagnosis has just been made (of stress/depression etc).

Sat Feb 19 2011 15:55:11 #
Jerama
Member

It's a well known fact (although some GPs don't know) that it can be difficult to diagnose OCD and that it can be many years before a true diagnosis is made and treatment offered/suggested. However, it is important to go to a GP as it is through the GP that other services are routed. The critical thing is not to give up and insist that there is something wrong and to ask to be referred to a specialist.

Sadly, and to their discredit many older GPs are completely ignorant of OCD having never heard of it (they should be struck off, or even worse!), so I would suggest that where possible see a younger GP, perhaps one who is only just out of medical school as although he/she may be inexperienced in medicine generally he/she will probably have heard of OCD as it is taught in medical schools these days.

If you think you have OCD then see a GP. Get information about it from this website, print it out and take it with you along with any notes you have made about your symptoms.

OCD destroys lives - yours and the lives of those around you. Don't be fobbed off with "it's just depression" - OCD causes depression (no surprise there). Be persistent. If you are not happy with what the GP says ask to be referred to a specialist - it is your right.

If you think/know you have OCD then see your GP.

Jerama

Sat Feb 19 2011 22:34:49 #
Unregistered

Just to reiterate, I have never discouraged anyone from seeing a GP. In fact, in the five and a half years I’ve been a member of this forum, I have always advised people to see their GPs, when they have asked what course of action to take.

I seem unable to make this point clear.

I agree with Jerama about younger GPs. However, if a doctor does not believe you have OCD, when you are convinced you have, you have the right to ask for a referral. A good GP would recommend this anyway.

When it comes to the less well known OCD symptoms, even psychiatrists and psychologists can make mistakes, so I would advise everyone to read as much as possible, just in case you encounter ignorance, even amongst the specialists.

Sun Feb 20 2011 13:29:09 #
wannabefree
Member

Hi everyone...
I'm not sure what to say here but, we need to perhaps lighten up on each other a little, and ourselves... Everyone here is absolutely right... We don't need to defend our own feelings from each other on here... The world in general does that for us anyway...
As an OCD sufferer, I'm often feeling ridiculed by relatives, and when I was working, some of my work colleagues...
I do see, that we all do care so much to be understood, in a world that doesn't even seek to understand sometimes... I have to accept myself as me, regardless of what others say, and that's okay...
We are all wonderful people on here... All of us... We share an understanding that many others out there, couldn't even begin to comprehend... And because of that, let's lighten up on each other, and ourselves, so we can go forward together on this journey... In many ways we are all different, and yet, at the same time, uniquely similar... wonderful, wonderful people, people I value greatly, in a world where we struggle so hard to fit in, to somehow manage alongside each other, like soldiers in a war against an enemy... I need us all to somehow not worry about what we say so much, cos we all need each other... Please don't feel offended anyone, I'm speaking to everyone, myself included. And I really must lighten up on myself...
wannabe

Sun Feb 20 2011 13:59:13 #
Unregistered

I feel this is a serious issue and I would hate for anyone to think I am opposed to visits to GPs. The same thing happened to me when I explained CBT doesn’t work for all. I seemed to gain a reputation on forums for being anti CBT and that is simply not the case at all.

Sun Feb 20 2011 15:19:50 #
wannabefree
Member

No problem, Tricia. You're okay... Over the years, I've had to try and accept that, However others might see us has to be left as their problem, although I realise that is difficult to do. Whatever I try to do, people will judge me. Years ago, When I worked in care work, differences of viewpoint would raise voices, but I guess that's just the way people are... The main thing is that we're all sharing. We're all just tiny wheels in a big machine, but however we see ourselves, we're all important, all of us, you too!
more later,
wannabe

Sun Feb 20 2011 17:55:53 #
Unregistered

Wannabe, I’m afraid my seriousness may have as much to do with the situation within my family at the moment as to my views on GPs and possible misdiagnoses. Last week, my daughter’s doctor warned me that without surgery she is likely to die. She refuses an operation, so my mind is not in the best of places.

I truly wish that everyone with OCD was wonderful, but sadly I realized long ago that we vary as much as the rest of the population (I would say that some are even more selfish). With the possible exception of two traits; empathy and sensitivity.

It pains me to say this, but many with OCD (I am not saying ALL) do not empathize well with each other. So many make judgements and are unable to understand the fears of another. I have only ever been referred to as ‘pathetic’ by fellow sufferers (three).

I have yet to meet anyone with OCD who is not sensitive. However, this is not always a positive feature. Sensitivity can be directed inwardly and often this is the case.

Over the years, I have been in contact with over a hundred people with OCD. Thirty or so I have got to know well. I consider myself fortunate to have found five of these to be loyal, caring and honest, but they were obviously not the majority.

I read a book by an OCD sufferer recently, towards the end of the book she stated that we are the most caring, decent, honest people on the planet. She then went on to plagiarize seven pages of my work and claimed a good friend of mine (whom she had not even made contact with) was a close friend of hers.

Jerema upset me recently by stating I am one of those OCD sufferers who expects the world to change for me. He was wrong, but I do understand why he feels the way he does. Sadly, some with OCD do have that attitude and it truly saddens me.

Returning to more important matters. I would still urge anyone to go to their GP for a diagnosis. But, I would also read as much as you can about this condition. Self-diagnosis is not a bad thing, if you are unfortunate enough to meet a GP who is ignorant about OCD, you will be able to explain why you feel he is wrong and why you need a referral.

Mon Feb 21 2011 14:33:57 #
wannabefree
Member

Hi Tricia, I often wish things were easier...
GP's come up through the ranks of doctoring, and goodness knows what they've specialised in, and then they do general practice, dealing with everything from warts to tummy-ache. I'd already tried other meds, and actually asked for lofepramine, cos when I'd had it before, the side effects proved to me that they were at least doing something... This time, I'm staying on it as long as I can cope with the side effects, and until hopefully something goos happens... I've tried to sort of diagnose myself, cos I'm so aware of how I'm reacting to things... Trouble of course with that, is that I probably sound like a complete nut to those who don't understand our condition, but, its what I deal with on a day to day basis.
It's a bit like trying to describe the strange noise in the car, to a mechanic at the garage... For some things, there just aren't words, but bthe feelings and thoughts, though strange to others,are very real to us...
It's just finding the ones who are patient enough to, maybe not understand, but at least appreciate what we're going through. If at first we don't succeed, try another GP, seek out support groups who can point to GP's who work with this... A GP who will team up with us, work alongside us as we each seek relief... Push them to referr us to people who know how best to help us...
Keep on keepin on, for as long as it takes... Until it all starts to somehow come right...
chat again later,
wannabe

Tue Feb 22 2011 9:46:44 #
Unregistered

Dear Wannabe, Although I have occasionally had a rough idea what’s wrong with my car, I rarely would have a clue! I would have to rely totally on the mechanic (reluctantly, probably!). I know you mentioned that as an example of how difficult it is to describe something to a person.

With the workings of my mind I believe I know better than my GP and he has admitted that. He even allows me to request certain medications, because he appreciates my knowledge is greater. This probably sounds terribly arrogant, but because, as you said, he deals with everything from warts to tummy aches, he has admitted he can’t be an expert on everything, and our condition is particularly difficult to understand. Also, I don't think you can live with something for fifty years and not develop an understanding of it. I am sometimes surprised when I’ve requested a new drug and my GP has told me that it’s not licensed for OCD. He is then good enough to check and he will admit he was mistaken and wouldn’t have considered such a medication had I not brought it to his attention. My GP was totally opposed to psychosurgery, but by listening to my views he has changed his mind on that, too.

I’m fortunate with my GP. He is in his sixties and once admitted he began general practice believing he knew all there was to know about medicine. After almost forty years as a doctor, he admits he still has a lot to learn and much of the learning comes from listening to his patients. Although I agreed with Jerama about young doctors knowing more about OCD, there is the downside that often young medics are more arrogant than older ones. They are less likely to listen to their patients' views. My GP actually said this.

Wannabe, How many other drugs have you tried? I was a little puzzled by something you said:

“I'd already tried other meds, and actually asked for lofepramine, cos when I'd had it before, the side effects proved to me that they were at least doing something…”.

I don’t feel that being aware of side-effects necessarily implies that a drug also provides beneficial effects.

Prozac worked remarkably well for one of my friends. What minimal side-effects she experienced were short-lived. However, the benefits were long-lasting. On the other hand, in the past, she found the tricyclic antidepressant clomipramine had many side-effects, but few, if any, benefits.

Tricia.

Tue Feb 22 2011 13:14:35 #
wannabefree
Member

Hi Tricia, strangely enough, it was fluoxetine I was on, but I don't remember the dosage, it was more than a year ago, before I tried CBT. It didn't have any effects as I remember, therapeutic, or side, so I just sort of stopped...
But I'll see what GP says, and see if maybe I can change from this lofepramine onto something with less side effects... Not to worry, I'm sure it will all sort out... more later,
wannabe

Tue Feb 22 2011 22:03:35 #
Unregistered

Dear Wannabe, How long were you on fluoxetine for? My friend noticed no improvement for almost three months. Just as she was considering stopping the drug, she noticed a change in her OCD. Tricia.

Wed Feb 23 2011 12:49:19 #
wannabefree
Member

Hi Tricia, To be honest, it could have been the best part of a year, but I'm not sure...

Wed Feb 23 2011 17:56:22 #
aishah
Member

Hi Everyone,

I was with my last G.P. for 20 years and had to change to a new G.P. 4 months ago as I have moved house.
I have visited my new G.P. several times over the last 2 months as my OCD has got even worse again. I have seen three different doctors at the new practise and they are not very sympathetic. I have had to fight to keep the same medication as they apperently don't prescribe Escitalopram at their practise, this caused me a lot of anxiety.

I went to see them again today and was told that I can't get any more Diazepam from them as my surgery doesn't prescribe that either, they gave me 5 tablets two weeks ago as a one off prescription.

I broke down in tears today as I tried to describe how hard it is to live with this condition, the doctor got me a tissue and then stood up and walked towards the door as if to say that my time was up.

I am not very happy with the service I am getting and am quite scared for the future. I explained the nature of my intrusive thoughts to him and he said that if I ever get thoughts again to walk into the traffic or harm members of the public then I should go to A and E and get help as they are not equipped to deal with it at their practise, I told him I get these thoughts most days at the moment and he said I should tell my psychiatrist when I see him next.

Another problem is that I havn't got a key worker as I see my psychiatrist and I can't have both. There have been so many times in between appts that I need support and that is when I have always had had support from my G.P. in the past, I am not hopeful of getting the support from my new G.P.

What a let down, I wish I hadn't moved house now.

Bridget

Wed Feb 23 2011 22:12:47 #
wannabefree
Member

Hi Bridget, Crikey, this is not very professional of your GP...
You may find that there will be a rival practice somewhere in your area. Doctors themselves have fallouts, and set up rival practises. Another idea, is to wander into your main local hospital, and check out the mental health section, the place strangely enough your GP is supposed to refer you to. The Samaritans would have a phone number to contact mental health team, and A&E you can go to at anytime to find help, without leaving it til things are unbearable?
GPs can be terrible, or good, depending almost on luck, so a plan here is to go round them to get help. If you take in the printouts available on the OCD Action website, to explain the situation, then hopefully the situation will improve.
More again later,
wannabe

Thu Feb 24 2011 10:09:27 #
Tess
Member

Hi Bridget
I'm really sorry to hear this and it makes me angry because if you need meds to function without excessive distress then you should be able to get them. This seems to me like a postcode lottery, I have no trouble whatsoever getting diazepam, in fact I have a permanent repeat prescription for it and my GP trusts me to take it only when I know I need it although I very rarely resort to taking it. It is said to be addictive but I have never found this and back in the 70's I took it all the time as it was prescribed like smarties.
It is making me wonder if they are adopting a policy of witholding certain medications unless patients end up suicidal and in hospital in which case it is a policy of closing the stable door after the horse has bolted and just adding to unnecessary costs to the NHS. I had a number of hospital admissions before SSRIs were discovered so maybe they just play safe with me - but I find it hard to believe that any GP surgery does not have access to certain medications, it is probably just a blanket internal policy. Is it possible for you to arrange an urgent appointment with your psychiatrist to try and sort this out? It is obvious from the GP's comment about going to A&E that his knowledge of OCD is inadequate.

Thu Feb 24 2011 10:28:39 #
Unregistered

Dear Bridget, I’ve only just seen your message. I agree that you are being treated disgracefully. I also agree with Wannabe, it’s worth looking around to see if there is another practise in your area. It does appear that some surgeries will accept patients from much further away than others. When I moved, my doctor told me I would have to find another GP, but, ironically, the new GP had patients several miles away in the area I had just left.

My GP doesn’t like prescribing Diazepam, because it’s addictive, but he reluctantly does so when he knows patients are careful with it. It did absolutely nothing for my anxiety, so I never did bother with a repeat prescription. However, it obviously helps you and it is ridiculous to withhold it from you.

You shouldn’t have to fight to be treated well, it’s hard enough living with and fighting the OCD.

Tricia xx

P.S. I am despairing even more about the ability of doctors. It would appear that they are so rushed (consultants included) that they are misdiagnosing all the time. So many considerations now are based on cost, rather than patient welfare.

Sun Feb 27 2011 13:46:59 #