Obsessive-Compulsive Disorder (OCD)Next month we are going to be meeting with a group of MP's and Ministers to brief them on OCD and OCD Week. We have one hour to get across lots of information and want to leave them with a real understanding of what OCD is, how it affects you and what people with OCD need, want and deserve.
So..... if you had the opportunity to say one thing what would it be?
Unregistered
Hi Joel
I would say: Please give OCD the same priority as serious physical illnesses.
It is not our fault that we have OCD and we deserve prompt and appropriate treatment by specialists trained to diagnose and treat OCD.
Unregistered
Some suggestions to get the ball rolling:
You will all know someone, quite probably several people with OCD but you will be unaware of their disorder despite the fact that OCD is classed by the WHO as one of the top ten most disabling conditions to affect people.
Two million people in the UK (possibly a conservative estimate) suffer from OCD. A large percentage of these suffer in secret because they are afraid of misunderstanding and uninformed judgemental attitudes.
The average time from the onset of the disorder until the sufferer seeks medical help is currently 17 years - one-fifth of a lifetime.
Untreated OCD or excessively long waiting lists for treatment can result in suicide.
People with OCD are not mentally ill.
People with OCD are not violent or a risk to the general public.
People with OCD are an untapped resource of talent, intelligence and creativity.
People with OCD are conscienscious, accurate, perfectionist, focussed and show great attention to detail and can make excellent employees in a suitable occupation.
What do we need?
An end to stigmatised attitudes by awareness and education.
To bring the disorder out of the closet because early intervention is the key to successful treatment.
An end to excessively long waiting lists for treatments.
Better training and knowledge in the psychiatric profession.
i agree with joyce. but i also feel we should be taken seriously. i changed my doc because he laughed at me!! i left there feeling sad and humiliated. waiting list are way to long. education is a must i have suffered in silence due to stigma even my closest friends still dont know because i fear their reaction.
I agree with joyce, Glad and netti,
We're intelligent and don't appreciate being treated as idiots.
Prompt intervention is needed as the longer it's left the more difficult it is to change.
We also need to be treated holistically. If there are other factors especially physical ones causing or affecting the OCD they need to be addressed. For instance as many of you know I have seizures. It was the epilepsy that caused the OCD in the first place and as no one will help to sort the seizures the OCD is having a field day. Sort out the other conditions so that people stand a better chance of dealing with the OCD. We are not OCD - it is part of us and needs to be treated accordingly.
Ok it's not a major psychotic illness, in many ways it's worse as we are fully aware of what we are doing and the severe impact that it is having on our lives. This makes it highly distressing for us. But as it doesn't impact on the staff like a psychotic illness they don't want to know. I've been told it's only OCD just forget it - If only we could.
We do want to get better and if a particular treatment doesn't work it's not for the lack of us trying.
Above all we need to be treated with the respect 
Sorry to go on but I'm really annoyed with the way that I've been treated.
Truddles
Unregistered
I found Joyce's thread particularly helpful, I myself waited longer then 17 years old to seek help because I had never heard of OCD or even thought anyone else thought like this. I thought it was all my fault. I really did get scared when the obssessive thoughts about death changed to negative thoughts about strangers and neighbours. I really thought there was something unnatural about me. I just found the more I tried to think like a good person the more I got intrusive evil thoughts, it was awful.
I would ask the government to try to provide more reassuring information on OCD, It can be so scary while growing up to not be able to relax and everyone keeps telling you to 'stop looking for things to worry about!'
Unregistered
Hi Joel
This very important topic seems to have been overlooked a bit.
I would like to add two more things which I feel are of importance.
The first is that I really feel that the questions which the NHS assessment team ask could be far more sensitive - especially so when a person has already been diagnosed as being an OCD sufferer.
The two people who assessed me 3 weeks ago seemed to know very little about OCD. The questions asked had little relevance to OCD and were far more relevant to more serious mental health problems. They had not heard of the Maudsley or the Bethlem.The team did not listen to me properly. I was asked at the end: Did I think I went down my drain or did I actually climb down it. I had already made it vey clear that these were just thoughts, that part of me really knew that they were not real and that I was making good progress with my private therapist. Their questions sent me into a panic and I had to spend an entire session with my private therapist undoing the harm. I did not hear from them again until two days before Xmas eve (3 weeks). They rang to ask if I would come back and fill in more questionnaires. Needles to say I told them that I would not be back.
My second suggestion would be that there should be at least one doctor at each medical practice specializing in mental health disorders. This would cut down on other doctors time and allow OCD sufferers to be diagnosed and helped more quickly. If that doctor found himslef inudated and unable to keep up, it would show the government the real extent of our problems.
Best
Anne
Unregistered
ps please excuse the typos. I am self taught and have started looking at the keyboard again.
Unregistered
Hi everyone
I keep resurrecting this topic and it keeps slipping back down. As Parliament is there to serve all us UK citizens, it is right that we demand better treatment.
There is a general election coming up next year. If you want better health care for OCD sufferers to appear on the Election Manifesto of the three major parties (under NHS reform) please help the OCD team to make known your opininions.
Let's fight for a fairer system
Love
Glad
Hi everyone,
I agree with Glad.
I'm also fed up with the professionals saying 'It's only OCD there are far worse things to have.'
Just from being on the forum you can see just how complex and disabling the condition is and what is worse we are intelligent people who are aware of the fact that what we are doing is irrational. Yet without help we are unable to stop ourselves falling into the ever spiralling trap of the obsessions and compulsions.
Each of us needs early intervention and an individual package of treatment. Because of it's complexities there isn't and never can be a one package suits all treatment.
Yes at the moment money is tight for everyone NHS included so don't waste it.
Yes some treatments may seem expensive initially but in the long run probably work out cheaper. For example - The MHT are prepared to spend out for regular support workers for months on end for me, but not pay for a psychologist to sort out the OCD and the various problems that triggered it. It is apparently too expensive and yet over the months they have spent more than they would have on a long course of therapy and I'm no nearer to being off their hands. A course of therapy and I'd be on my way to independence by now.
With some people there is a physical condition that has caused the OCD, yet the buffoons (apologies for terminology) are starting with the OCD rather than sorting the physical problems that trigger the OCD. There's a waste of money if ever there was.
It's madness the money that is wasted in neglecting our treatment and so our recovery. Plus think of all the talent that we with OCD have that is going to waste purely because of the OCD and the fact that through lack of appropriate treatment to each individual we are unable to participate fully in society.
I'm also sick of professionals that don't understand OCD and think that it is easier to label us as having a personality disorder. The only personality disorder that we have is that we have allowed for far too long the professionals to walk all over us and dismiss OCD as being trivial.
How many of them would survive even a day if they had to go through what we have to go through on a daily basis 24/7?
Sorry rant over.
Truddles
Ps if at times post didn't make sense epilepsy playing up but I'm not going to obsess over any mistakes. 
Please allow me to chime in: perhaps it is helpful to mention the great cost that OCD brings with it for a society? Now, before you accuse me of calculating the value of people in cash, I want to say: the money argument always works with MPs and ministers. If I can, I'll search the data I have (U.S.-based, but since the disorder hits around 2-3 % of people in all civilized countries, it may be translated into other nations' burdens as well. I'd go even so far as to say that the relative cost in the U.K. and mainland Europe is higher, because 'we' have a more equally spread health care system).
But by all means: tell the bitter truth. Unfortunately, OCD is often mentioned in popular culture as a 'funny disorder'. As we all know, this is a blatant lie. How on earth would you call a disorder that ruins people's careers, incapacitates, breaks up relationships, and may lead to substance abuse and suicide? Something 'funny'?
It needs be explained what all the fear, sorrow, ruminating, staring, and so on mean to any individual burdened by these demons.
Unregistered
Well said Cuthbert, I agree entirely, Joyce
Just think of the financial gain to the country if people with OCD were to get the appropriate treatment as soon as they needed it. They would then be able to get back to work, education etc and would be able to make a contribution rather than being made to feel a burden as so many of us are made to feel at the moment.
The country currently wastes so much money by not offering the appropriate treatment, but more importantly it's wasting the lives of so many intelligent people that have a lot to offer, if only they were given the chance. And the chance is the appropriate treatment for the individual at the right time.
Unfortunately so many Health professionals still treat OCD as a joke and don't take us seriously. I know that we've all laughed at people that we've seen on TV and films that are depicted as having OCD. But it isn't until you have to live with it that you realise that is far from being a joke. It's a living hell especially as we are fully aware of the fact that what we are doing is irrational and that we want to change.
It is therefore up to every one of us to help to educate not only the public but also Health professionals of the enormous impact that those three letters (OCD) have on our lives.
It's just a shame that it's not possible to give them OCD for a day so that they could experience just what it is that we have to cope with day in day out. Ask yourselves how many of them would last the day - not many I suspect.
Sorry to get on my high horse but I've just had a row with TB but I think I've managed to show her the door
Truddles
Thanks to Joyce, Truddles, and Wombat -
Truddles elaborated on my point exactly. I am actually pleading for a 'political correctness' re: mental illness. It should never be exposed as being something funny. This is nothing short of criminal.
An enormous amount of money, good money, could be saved if the stigma about OCD were lifted, so that patients could recognize it in themselves earlier and address a good clinician. A good clinician is someone who does not poke fun at OCD, or belittle it. Then all that good money could be used for proper therapy and an early return to the workplace.
A good clinician actually is someone who tells the truth, and does not advertise his or own 'hidden interest' on the side (I really experienced a couple of these, who state that their own therapy cures almost all patients: don't believe the hype, I respond).
Again: there is really a win/win situation for the sides involved here (I hate that term, but here it is applicable in full). No one has to lose, or invest more.
Thanks for the various comments, folks!
Cuthbert.
Have a look at "Time to Change" here http://www.time-to-change.org.uk/files/newsletter/newsletter_issue5.html One of the aims is to get rid of the stigma attached to mental illness.
Caps
Unregistered
I've had a quick look Caps and this is what it says:
"But the government has yet to make any commitments to funding the
continuation of the Time to Change programme when its charity funding
from the Big Lottery Fund and Comic Relief comes to an end in 2011.
The Department of Health has committed to funding its Shift anti-stigma
programme until 2010/11 and to conducting two further public attitude
surveys and has said that decisions on funding national stigma and
discrimination initiatives will be reviewed over the next 12 months".
Do we really need this vital funding spent on public attitude surveys and reviews - lots of paper pushing and no action on the ground?
NO WE DON'T. We need it spent on people and treatments.
Those with OCD, once well enough can change public attitudes by being open and honest about the illness and their inner qualities of intelligence, sensitivity, conscientiousness, commitment, loyalty, etc. will speak volumes. Information and enlightenment will change stigmatised attitudes not surveys.
From joyce on her hobby horse.
The government's contribution is not encouraging but I think we will all agree with the aim of the Time to Change organisation which can be found on thier website http://www.time-to-change.org.uk/home/ Take care to see that you go to the right website as there are several companies using a "look alike" web address.
Caps
I found an estimate of the total cost of OCD in the U.S.A., in: DuPont, R.L. et al (1995), for the year 1990, in Medical Interface, 8(4): pp. 102-109.
* direct total costs: $ 8.4 billion
* this represents 18.0% of the costs for all anxiety disorders ($ 46.6 billion)
* indirect costs from lost jobs, personal suffering, and people dying form the disorder, presumably by suicide: $ 6.2 billion
So, total costs: $ 14.6 billion. Mind, I am talking 1990 here... which means that total costs nowadays will be much higher.
I also checked the population statistics for the U.S. and the U.K. for around 1990. The U.K. populations formed 1/4 of that in the U.S.
Assuming that health care coverage is the same in both countries, the U.K. would have paid $ 3.6 billion way back then. But I made the educated guess above that total costs in the U.K. will have been much higher (20% of people in the U.S. is not insured at all). Add to that that the estimate of the part of OCD in the U.S. in that article was on the low side (2.1%), and that there is a dark figure that we won't know but which will be considerable, the end conclusion must be:
OCD is very costly. To patients and society alike.
All the best, Cuthbert.
This may or may not have already been said but i have been told by my doctor that there is a significant lack of CBT practitioners in the Uk probably due to it being a relatively poorly paid job, as the government apparently dont consider OCD as that significant a problem. Well as sufferers we know far better!! I would like to ask MP's and politicians alike why they consider OCD as a less significant problem to other problems in general, and what they intend to do to improve their incredibly poor system
Anon
Unregistered
Hi Anon
I suspect that the reason that the government don't consider OCD as that significant a problem is because
a. People with OCD are non-violent so they can be safe in the knowledge that we are not going to do anything nasty to anyone else for which they could be criticised - and if we do something nasty to ourselves, well that's just statistics and inevitable if they are questioned.
b. Many people with OCD suffer in silence, they are not in receipt of benefits and because of their extreme sense of morality they try not to be a burden on society. They soldier on willing to take low paid jobs because they are afraid of the responsibility of managerial posityions and do a superb job.
We are our own worst enemies, why should the government consider it a significant problem, it's only significant if it costs them money. Joyce
Hey Joyce,
You know, i agree with what you have said but it is so very wrong of any establishment to think we are not a problem if we only harm ourselves!! And i understand exactly what you mean when you say about sufferers 'suffering in silence' (i know plenty of people like that and it helps absolutely no-one, least of all themselves), however with greater support and councilling schemes (and henerally more practitioners) i believe ocd sufferers would be encouraged to seek help more readily. I myself am more than just frustrated and annoyed at the government's lack of understanding in this particular area and would happily welcome any improvements to a system that i feel quite often fails ocd sufferers
Anon
Thanks joyce and Anon -
to joyce for putting it razor-sharp, how people with OCD tend to remain silent in everything, and generally don't use any loudness to 'get something done';
to Anon for venting his/her emotions so grippingly.
Gives me courage to ask more attention for our needs, and to seek more knowledge.
Thank you all for your comments. The meeting is this afternoon. We are going to start with a presentation on what OCD is ( Isobel Heyman will be doing this) and we are going to be sure to let them know that OCD is serious, severe and a lot more common then they may think.
We are also going to talk about the impact of OCD on people's lives and the lives of their loved ones as well as problems people face at work / getting treatment and with housing.
We are especially keen to also talk about the IAPT programme / NICE and the lack of OCD specialist centres as well as the need for awareness reaising especially amongst frontline profesionals ( medics / teachers etc...)
All the coments above are realy helpful and we will use these. This is just the start of a long process of developing our relationships with governemnt and the department of health so that we are in a better position to make sure that our voice is heard.
I will let you know how it goes
-Joel
Just to let you all know that the meeting went well yesterday. I think that one of the things that MP's found most surprising was the severity of OCD and the impact that it can have in all aspects of a person's life.
They had many questions for us regarding IAPT, CBT and the lack of centres of excellence. We made some good contacts and came away from the meeting with a feeling that we have been listened to.
Thanks again for all your help
Joel
That's great news, Joel. And well done!
It's important to remember that a lot of the problems with "the authorities" aren't deliberate on anyone's part - often it seems to be simply that the laws are being made by people who know absolutely nothing about what's required. That's why it's so important for groups like OCDAction to keep doing this kind of thing.
Hiya Joel -
most encouraging, thank you. Wombat's right: one can't expect an MP to be an expert in each and any mental disorder. It is urgent to teach them about it from a patient's perspective.
I'd say OCD is probably one of the most 'hidden' mental disorders. Many people have some insight into the gravity of major depression, and even schizophrenia and delusional psychosis. But OCD is a very tricky thing. As I said earlier, it tends to be portrayed as something 'innocent and funny' in popular media. Might even be that many shy away from it because they carry it around in themselves just a bit more than they'd be comfortable with.
Sober and factual information works best.
Again, cheers for a job well done, Joel.
Bye, Cuthbert.
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