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Very upset by the GP

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Well DH and I went to see the GP to request a DX this morning.

 

Hubby was very organised and printed out the information off the Autistic Society website last night and we went through it. However, he told me that the appointment was at 9.15 but when we got there we were late because it was actually at 9.10.

 

So we were called into the see the GP and I think we got the only undiagnosed AS GP in our practice (he said at one point he has family members who are AS) he asked my hubby what was wrong so he told him he was here to request a DX for AS. The GP was so rude and asked why he thought that he has AS, and what good a diagnosis would do for him as there are no services out there for AS adults. Hubby told him his dreams of getting into teaching and the GP basically told him that if he told them at interview panel he would be discriminated against if he had dyslexia he would understand it but AS what would support would they be able to offer him? I told the GP without a DX we didn't have any armour to fight should he face discrimination in getting a job, however, the GP told me that I live in a utopia if I think that employers will abide by the DDA 2005.

The GP implied that I was being pushy and at one point turned to my hubby and said that he was acting as his advocate.... why would he want to go and get himself labelled? as I was the only other person in the room i'm assuming that he thought that he needed... or arrogantly that he knows by hubby's wishes and feelings better than me!!!! SO he was advocating against me!! I'm heart broken... I feel so upset. The implications were that I was pushing my hubby to get the DX. When the one thing I have been very careful not to do is push him, it's his life after all.

 

The GP told my Hubby that he would be making it harder to get on a training course to become a teacher if he had a DX and that teachers were being made redundant due to all the cut backs. Thankfully at this point my hubby got all AS on his ###### and challenged his opinion by asking what the GP was basing his information on!! Both Hubby and I had to tell the GP that he was rude. I had to ask the GP if Hubby should give up on his dream to teach then because as he will need support when in employment as he has organisational difficulties sometimes, then I took great pleasure in informing him that some people with AS make great teachers because they are very meticulous in how they give instructions. ( My hubby has taught adults in previous careers). However, because my Hubby has had jobs the GP took this to mean that he can function in society so what's the big deal. However, he doesn't know that he was very often overlooked for promotions and even sacked from one job. The GP turned to my Hubby and said...'you look alright to me'. The GP was seemed more interested in discussing Hubby's degree in History/geography.

 

I think that money has a large part to play in this interaction with the GP as he mentioned that because of the cuts they cannot get people operated on.

 

The GP said that he "would look into it". He will call my Hubby when he has.

 

Has anyone else faced this battle and come away feeling like this? Hubby is oblivious to it and says I shouldn't take it personally, typical Hubby response to my emotions.

 

A very exhausted M

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This is very similar to my experience with the GP.

 

He practically said the same thing, how will having a "label" help you!!!

 

I have real problems with direct or personal questions like this and got all embarassed, I was told he would get me a referal but that was alomot a year ago and I've hered nothing. I'm too scared to go back or try again :-(

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I do not like to sound negative because you obviuosly had a difficult morning.

 

However I have a son Ben who was diagnosed with AS about eighteen months ago.

I think that the vast majority of what your GP said could perhaps have beeen put better but is true.

Ben wanted an assessment for diagnosis and we fully supported him.

Far from helping the diagnosis has lead to bullying by peers and negative attitudes from many staff who have minimal awareness.

When Ben leaves school he will be able to decide whether he wishes to disclose his AS diagnosis.

He will have to declare it if he wishes to join the armed forces.

However I would be amazed if a declaration made any difference as regards support in work.

I am not sure that the label does help.

 

Incidently Ben is the most caring intelligent respectful young man most people would wish to know.If your reference to the undiagnosed AS GP being rude,arrogant or unhelpful is part of the idea behind him perhaps having AS I think perhaps you might like to read the diagnostic criteria.

 

The GP may well be rude,opinionated,arrogant or stressed given the current situation in the NHS.None of these things are specifically associated with AS.

 

 

 

Karen.

Edited by Karen A

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I have to agree with what Karen has said.

 

You seem to be attributing some quite negative traits to AS and essentially suggesting that these cannot be helped. You mention at one point that your husband 'got all AS' and challenged the doctor - why is this behaviour (which the GP may have construed as rude) suggestive of AS?

 

You have to remember that GPs are just that - general practitioners. He has said he will look into it; I'm not sure what else you expect?

 

I think one of the other issues is this:

DH and I went to see the GP to request a DX this morning.

Would you go to the GP and request a dx of cancer, diabetes, depression, anything for that matter? You would go to the GP with symptoms which may well be indicative of various issues, but going in and requesting a DX seems the wrong approach to me.

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I hope this comes out the right way, as I genuinely don't want to offend anyone here.

 

I had an NHS dx of AS back in 2007. Part of the diagnostic criteria for adult dx is that your difficulties have a significant negative impact on your life. At the time I was also suffering from clinical depression, caused by my difficulties...I was really very unwell, to the extent that my GP started to talk about admitting me if things didn't pick up. This was seen and documented by my GP, a counsellor I was seeing and the local mental health team before I was referred to the specialist adult diagnostic centre.

 

I'm not trying to trivialise anyone's difficulties, or put anyone off going for an adult dx, just trying to clarify that your GP will have to see evidence of the significant negative impact of your diffficulties.

 

Bid :)

Edited by bid

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MBF, I don't wish to offend you either, but I do think your GP was being reasonable and honest with you. He probed your husband's reasons for wanting a dx, asked legitimate questions and said that he "would look into it". He also made some valid comments on the impact of a dx on your husband's employment prospects and the lack of support available for adults.

In the current climate, a dx will make it harder for your husband to obtain employment as a teacher. Recent stats from the General Teaching Council show that 52 per cent of the 33,350 newly qualified teachers who finished training in 2009 had not started induction (probation year in school) by the end of March 2010. That is over 17,000 NQTs not in an induction post. Try reading the TES forums for further information.

 

You seem to be more emotionally involved in pushing for a dx than your husband is; you say it is because you want him to access support. Perhaps you need to reflect on why you are feeling like this, rather than reacting to your GP's response? He's going to look into it. What more could you ask for?

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Maybe your husband's dreams of a career in mainstream education are unrealistic, but surely a diagnosis would be part of the journey to discovering that. He may well find a similar career that he enjoys just as much. Statistics about NQT unemplyment really should have no bearing on his need for diagnosis. The National Autism helpline does a factsheet discussing why adults may want an AS diagnosis.

 

I'm afraid this has made me really anxious about seeing my Gp and requesting a referral now. I've been building up to it and other postings have been quite positive and encouraging and now reading this thread makes me question if I should go, or whether I should just bumble on with my pokey contracted life.

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Maybe your husband's dreams of a career in mainstream education are unrealistic, but surely a diagnosis would be part of the journey to discovering that. He may well find a similar career that he enjoys just as much. Statistics about NQT unemplyment really should have no bearing on his need for diagnosis. The National Autism helpline does a factsheet discussing why adults may want an AS diagnosis.

 

I'm afraid this has made me really anxious about seeing my Gp and requesting a referral now. I've been building up to it and other postings have been quite positive and encouraging and now reading this thread makes me question if I should go, or whether I should just bumble on with my pokey contracted life.

 

I'm really sorry Hortus if my post has undermined you in any way :(

 

I can only speak from my experience of getting an NHS dx for AS. It was a very long and at times extremely upsetting procedure. I was lucky enough to have a very supportive GP who also knew my AS son very well and had helped him enormously in the past. However, before I was referred to the specialist adult diagnostic centre at Cambridge, I had to be seen by my local mental health team. Unfortunately I don't think I am alone in finding this a bad experience, even though their report did say i presented with traits of ASD.

 

I suppose the conclusion I would make is that in the same way that our children have to be experiencing significant difficulties to fulfil the diagnostic criteria for ASD, so too do adults.

 

Bid :)

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Hello

 

I am always saddened when medical professionals refer to a diagnosis as a label. It Is my position that such use of the word label is a clear indication of ignorance.

 

If a person is diagnosed for example, 'diabetic' or 'schizophrenic' it is never considered to be a label. Instead it is viewed as an accurate, succinct description of an accepted, measurable physical condition and is loaded with meaning - a shorthand if you like that contains information about treatment, symptoms, quality of life etc.

 

The only reason for demoting a diagnosis to a label is that for some reason, the user does not accept that the condition diagnosed is a real, accepted, measurable physical condition that has genuine symptoms or affects.

 

Similar views were seen in things like 'yuppy flu', 'gulf war syndrome' and PTSD until bigoted, judgemental, prejudiced views were eliminated.

 

I hope it won't cause undue distress if I suggest that you seek, as best you can, to change your GP to one with more depth of character, or at the very least request the practice manager provide you with detail of when this one will be educated about autism under the new Act of Parliament, introduced precisely top combat this kind of behaviour.

 

Best wishes,

Autie x

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AUT1E, are you not demonstrating the very behaviours you find abhorrent in this GP?

 

I've seen countless times, both on this forum and others related to other conditions, posts which basically come down to saying "The GP wouldn't listen to me" (although in many cases are "The GP wouldn't give me exactly what I want and think I am entitled to regardless of the needs of others or my own best interest"). In many cases the patient is as much, if not more, to blame for not listening or being prepared to accept a view other than their own.

 

As I and other respondents have said, in this case, the GP seems to have acted entirely reasonably in his response - he's listened, questioned, and is now seeking further advice - after all, he is only a general practitioner, so it would be wrong to expect any in-depth understanding of ASDs or other conditions.

 

Your suggestion that (particularly the second part):

you seek, as best you can, to change your GP to one with more depth of character, or at the very least request the practice manager provide you with detail of when this one will be educated about autism under the new Act of Parliament, introduced precisely top combat this kind of behaviour.

will do nothing more than alienate the patient from the health care provider. This GP has in fact shown himself to be fairly well educated about Autism - I'm not sure that not agreeing with your point of view about Autism equates to not knowing about Autism.

 

If a person is diagnosed for example, 'diabetic' or 'schizophrenic' it is never considered to be a label.

Both are given as labels and can be considered as labels.

 

I can only speak from my experience of getting an NHS dx for AS. It was a very long and at times extremely upsetting procedure. I was lucky enough to have a very supportive GP who also knew my AS son very well and had helped him enormously in the past. However, before I was referred to the specialist adult diagnostic centre at Cambridge, I had to be seen by my local mental health team. Unfortunately I don't think I am alone in finding this a bad experience, even though their report did say i presented with traits of ASD.

 

I suppose the conclusion I would make is that in the same way that our children have to be experiencing significant difficulties to fulfil the diagnostic criteria for ASD, so too do adults.

I would agree and have had fairly similar experiences in getting an NHS dx. In my case I was put forward by other professionals and academics already working with me who had concerns but I still had to go through the mental health/psychiatrist route. Although this was horrible, in some ways I think it's right; they do need to rule out other mental health issues.

 

I also think it is right that the GP or someone else in the process does ask quite extensively about functioning because part of the DX criteria are that the symptoms have a significant pervasive effect - if they're only a little troubling in some areas or a problem more to the partner than the individual, then perhaps a dx isn't the right thing and it weakens the true difficulties faced by individuals who do face significant pervasive difficulties.

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Hello

 

I am always saddened when medical professionals refer to a diagnosis as a label. It Is my position that such use of the word label is a clear indication of ignorance.

 

If a person is diagnosed for example, 'diabetic' or 'schizophrenic' it is never considered to be a label. Instead it is viewed as an accurate, succinct description of an accepted, measurable physical condition and is loaded with meaning - a shorthand if you like that contains information about treatment, symptoms, quality of life etc.

 

The only reason for demoting a diagnosis to a label is that for some reason, the user does not accept that the condition diagnosed is a real, accepted, measurable physical condition that has genuine symptoms or affects.

 

Autie x

 

Hi.I do not have AS.I am now very well and it would probably be difficult to give me any label except perhaps opinionated and a pain in the neck. :D

However a few years ago had a come to the attention of statutary services I would have been diagnosed with PTSD.I might well also have been diagnosed with psychotic anxiety and borderline personality disorder.Although I have never had a formal diagnosis I consider myself to be a person who has suffered from mental ill health in the past.The reality is that stigma still exist bigoted views are far from eliminated.

My husband has also worked for a mental health trust for over twenty years.

 

Sadly I can say with absolute certainly that schizophrenic is a label.The label is so stigmatizing that professionals are reluctant to diagnose people because for most of the population mental illness equals madness and a person that is a risk to others.

This is an appalling situation which should not exist but the reality is it does.

I have been a nurse in the past myself.I have come across many professionals who hold views about people with mental ilness that are far from accurate and succinct.

 

My son Ben is 12 and has AS.The psychotherapist who worked with us for three years every week has always and continues to refuse to label Ben as having AS because he believes the label does not help Ben.I am not sure I agree with him.Ben certainly does not.However he is certainly not ignorant.If anything he was very aware of the way that a diagnosis of AS causes people to have pre-concieved ideas which he did not believe helpful.

 

However the reality is that since diagnosis Ben has been judged as being everything from aggressive to completely lacking in intelligence to making up his diagnosis because he does not fit into what the population in general thinks should represent the label ASD.He has been bullied and discriminated against in ways he never was pre-diagnosis whilst obtaining very little support.

I have even been challenged by people on the Forum because Ben does not fit within the standard box.

I think most professionals and people in general do not have anything like the level of awareness you appear to expect them to have.

 

The only reason for demoting a diagnosis to a label is that for some reason, the user does not accept that the condition diagnosed is a real, accepted, measurable physical condition that has genuine symptoms or affects

 

Ben is very able to challenge stereotypes and does so on a frequent basis.However the labels and stereotypes do exist.He has no problem with a label or diagnosis of AS.

Edited by Karen A

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Hello.

 

It seems i was not clear enough, sorry.

 

A medical diagnosis is one thing and a label is another, even though a medical diagnosis may be USED as a label.

 

Further to the examples given, you have rightly stated that some diagnoses are used as labels, leading to the prejudices mentioned.

And there is mention of labels that are not medical diagnoses such as 'opinionated' or whatever.

 

Here is an out of date illustration...

A medical diagnosis of 'leper' used to be both label (resulting in prejudiced responses) and diagnosis (having medical meaning).

Now in modern times that diagnosis is no longer considered to be a label. HIV Positive is another diagnosis that was used as a label.

 

Medical accuracy must not be compromised just because it may be abused. The answer is education and awareness, not avoiding diagnoses or frightening patients.

 

This GP may be somewhat autism aware but his post-diagnosis expectations need to be adjusted.

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Hello.

 

It seems i was not clear enough, sorry.

 

A medical diagnosis is one thing and a label is another, even though a medical diagnosis may be USED as a label.

 

Further to the examples given, you have rightly stated that some diagnoses are used as labels, leading to the prejudices mentioned.

And there is mention of labels that are not medical diagnoses such as 'opinionated' or whatever.

 

Here is an out of date illustration...

A medical diagnosis of 'leper' used to be both label (resulting in prejudiced responses) and diagnosis (having medical meaning).

Now in modern times that diagnosis is no longer considered to be a label. HIV Positive is another diagnosis that was used as a label.

 

Medical accuracy must not be compromised just because it may be abused. The answer is education and awareness, not avoiding diagnoses or frightening patients.

 

This GP may be somewhat autism aware but his post-diagnosis expectations need to be adjusted.

 

 

I am not going out of my way to be difficult honestly.

However I have to say that HIV positive is a diagnosis that is still used as a label.In many comunities it is sadly the modern day equivalent of leper.In some parts of the world people still face prejudice because they have leprosy.

 

I belive that it might frighten patients if they are aware of the prejudice associated with a diagnosis or label.However it is far more honest in my opinion to be real about the facts and enable them to make an informed decision than to pretend that prejudice does not exist.

 

If some adult patients knew the prejudice associated with an AS diagnosis and the limited benefits to be gained in my opinion they may decide not to spend vast amounts of time,money and effort seaking a diagnosis.That would be an informed choice.

 

For an example of prejudice and lack of information around AS I do not even need to look further than the original poster.

 

Thankfully at this point my hubby got all AS on his ######

 

I come from a medical background.Now Drs recognise that a diagnosis of cancer or HIV may be frightening.However before embarking on any investigations they would explain what the implications might be.The patient can then make an informed choice.If a patient who is mentally well decides to refuse all further investigations that would be their choice.

 

Parents frequently need to push for assessment in order to obtain evidence in support of educational provision.

 

However the reality is that for adults who are judged able to work and fairly independent there is almost no Statutary Provision.This may be unfair but it is the reality.

 

The GP appears to have expectations that there are few services available for adults with AS,that there is little support,that many employers do not abide by the DDA and that having a diagnosis might make it more difficult for an individual to find employment.

 

I think he has negative but fairly realistic expectations.

 

Incidently even this debate is not being conducted with the individual in question.Any professional would expect to discuss the pros and cons of obtaining a diagnosis with the patient themself and not with their partner.We actually know very little of what the patient thinks.A partner of an adult judged able to give informed consent may or not agree with the decision.The GP would not normally involve them.The alternative is that adults with possible AS need an NT adult to advocate for them.

 

 

 

Karen.

Edited by Karen A

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I think we completely agree, it's just that my position is perhaps more belligerent. Autistic presentation attracts prejudice and victimisation whether diagnosed or not and I believe we have to 'own' the label and face these issues head on, in a similar way to other groups in the past such as black or homosexual pride movements.

It is not a recipe for a quiet, comfortable life but neither is being autistic. I modify many of my clothes to be branded 'autistic', my bike is covered in autism awareness decals, has registration plate AUT1E, and I wear a badge that says 'autistic'. I really feel very strongly that actually it is not the job of a GP to protect people from diagnoses, but to identify needs and offer services and support (even though effectively there aren't any yet).

 

One of the cornerstones of my position is this:

Autism doesn't generally hurt. It doesn't usually cause significant pain or discomfort (obviously there are exceptions such as information overload, but these are not constant). The cause of suffering for autistic people is actually being autistic in a non-autistic world with it's expectations, prejudices and rule-breaking. So I am saying that the treatment of autism is to a great extent is exposing and dealing with these prejudices, not avoiding them.

 

I hope I haven't made you annoyed or upset.

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I think we completely agree, it's just that my position is perhaps more belligerent. Autistic presentation attracts prejudice and victimisation whether diagnosed or not and I believe we have to 'own' the label and face these issues head on, in a similar way to other groups in the past such as black or homosexual pride movements.

It is not a recipe for a quiet, comfortable life but neither is being autistic. I modify many of my clothes to be branded 'autistic', my bike is covered in autism awareness decals, has registration plate AUT1E, and I wear a badge that says 'autistic'. I really feel very strongly that actually it is not the job of a GP to protect people from diagnoses, but to identify needs and offer services and support (even though effectively there aren't any yet).

 

One of the cornerstones of my position is this:

Autism doesn't generally hurt. It doesn't usually cause significant pain or discomfort (obviously there are exceptions such as information overload, but these are not constant). The cause of suffering for autistic people is actually being autistic in a non-autistic world with it's expectations, prejudices and rule-breaking. So I am saying that the treatment of autism is to a great extent is exposing and dealing with these prejudices, not avoiding them.

 

I hope I haven't made you annoyed or upset.

 

No.Not annoyed or upsett at all.

As you may have gathered I am a [not NT but not AS :lol: ] mum to Ben who is 12.

Ben would agree with much of what you say as do I.He has faced applalling attitudes since diagnosis even from people I consider friends.He decided that he wanted an assessment for diagnosis and I completely support him in his choice.I do not know it has helped him at school or elsewhere but he wanted to know.I would not have been a Forum member for years and clocked up this number of posts if I did not support him with a passion.

 

However he might have decided that he did not want a diagnosis.At some point he may decide he no longer wants to identify himself as having AS.As long as he does not try to join the army or learn to drive without telling the DVLA that would not be a problem for me.

 

For all of my passionate views I would not expect Ben to fight battles about AS rights if he does not wish to do so because I do not have AS so do not have to deal with the implications...thankfully because I would be far less graceful than he is.

He may very soon decide to join the Forum himself at which point I will probably leave because he has to decide what to do with his diagnosis and I would not want to cramp his style. :lol:

 

Karen.

Edited by Karen A

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i would ask for a 2nd opinion or go to the manager of the surgery and complain about this GP.

For some reason the GP thinks you can judge whether someone needs an assessment by looking at

them? What planet is that man from?

 

http://www.sacramentoasis.com/docs/8-22-03/taking_responsibility.pdf is a very useful report which

might help with what to do about uncooperative gps.

 

http://www.autism.org.uk/ru/about-autism/all-about-diagnosis.aspx The NAS weblink about diagnosis.

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i would ask for a 2nd opinion or go to the manager of the surgery and complain about this GP.

For some reason the GP thinks you can judge whether someone needs an assessment by looking at

them?

I really don't understand the issue people seem to be having with this (or other for that matter) GPs. :unsure: A GP's job is to listen to the symptoms/issues a person presents with, carry out tests available to them if applicable (though this would normally be for more medically based issues, i.e. taking blood pressure) and to advise, prescribe and refer on as necessary.

 

As the OP has outlined this seems to be what has happened - the GP has listened, given advice and is now looking into how/where to take things further:

The GP said that he "would look into it". He will call my Hubby when he has.

Why on earth does this warrant a complaint to the practice manager, a call for re-training of the GP or any of a list of other 'suggestions' raised in reply to this thread?

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I really don't understand the issue people seem to be having with this (or other for that matter) GPs. A GP's job is to listen to the symptoms/issues a person presents with, carry out tests available to them if applicable (though this would normally be for more medically based issues, i.e. taking blood pressure) and to advise, prescribe and refer on as necessary

 

A GP should be able to assess for all medical,social,mental health or emotional difficulties at a basic level and know when and where to refer.He/she should soon be able to decide whether to spend money refering on or not.However I agree with everything else you say.

 

Karen.

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I thought I would elaborate a bit on my previous post as I was in a rush earlier.

 

 

I think that money has a large part to play in this interaction with the GP as he mentioned that because of the cuts they cannot get people operated on

 

 

The role of GPs is set to change dramatically in the near future with the abolition of PCTs.GPs role will then include making a decision regarding whether it is a good use of limited resources to refer on even where a patient would like referral.There is a huge variety of opinions on whether GPs should have such a role but this is what is proposed.

 

As things currently stand in many areas of the country GPs have no professional to refer adult patients to for assessment for AS.

Even if they do know who to refer to the reality is that there is no treatment or provision within the NHS for people with AS who are not mentally ill and little provision for those who are mentally unwell with ''less serious '' mental health issues such as anxiety or depression.There is certainly very little provision available specifically tailored to the needs of people with AS.

 

Therefore there is a very strong argument for a GP stating that there is no point requesting diagnostic assessments for something for which there is no funding to treat,no professionals trained in offering treatment and little clinical research based evidence on effectiveness of treatment.Furthermore a GP cannot request a diagnostic assessment if there is nobody to refer to for that assessment.

This may be unpalatable and people may wish to challenge it.However the problem does not rest in the hands of individual GPs.

 

For some reason the GP thinks you can judge whether someone needs an assessment by looking at

them? What planet is that man from?

 

A GP trains for years to make an assessment by looking at patients,talking to them and examining their clinical signs and symptoms.I am not sure how else a GP would decide whether a person is unwell or not.

 

Apparently a GP who has trained for years is wrong to make a judgement by looking and talking to a patient in about a ten minute consultation which is all the time allowed.[unless a double appointment is pre-booked which is what the NAS suggests and given that the patient was late and could have booked another appointment they can hardly complain].

Yet the original poster's partner who has read a few articles on the Internet and has no professional training as far as I am aware can.

I apologize to the OP if you are a trained psychologist,EP or psychiatrist but it has not been stated that you are.

Karen.

Edited by Karen A

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