Can I Sue the NHS ?

I wouldn't. Despite the lack of funding we're lucky to have it. Unlike the USA, if we have cancer we don't have to pay for the treatment. The wait times at the moment are a pain but I'd rather wait 10 hours in A&E and get the help I need rather than end up dying because I couldn't afford to pay for the medical treatment.

As far as I know there has never been a case with regards to autism. There have with regards to other conditions.

Or can anyone recommend good online support activists groups for Autism + general Neurodiversity?

I think I need to connect with people particularly around this issue. 

Hello Do you know of anyone who has complained and or bought a case against the NHS/Gov due to late /misdiagnosis and its impact on their life? 

Yes we should be supporting each other 

The NHS is insured and any compensation does not come of the NHS budget. I think we need to complain not just for the money but so they listen to us and  improve services for us and future generations of autistic people.  I was diagnosed at 40 with autism and as an adult for ADHD + Dyslexia and I feel sure it was this that was at route of mental illness. At one point I even said I thought I might be and was told by psychiatrist I wasn't as  I was looking him in the eye ( This was in about 2008/09).

@edbot, yes take your complaint further.

If you haven't already complained to PALS do so, if you have you can take it higher to the PHSO.

Or, contact a solicitor that is knowledgeable about ASC.  And you can ask your GP to refer you for genetic testing (put your case forward succinctly but powerfully).

Maybe we should have a conscience about sueing the NHS. But on the other hand, the 21 years of failed mental health interventions and humiliating (and wasteful of public funds) tip-toeing around the subject of my autism has left me deeply scarred. Nobody wants to acknowledge this, despite the fact my 4 year old son has been diagnosed with autism, and genetics has indicated that he and I share a rare genetic disorder that predisposes us to autism.

The NHS has its head buried in the sand, and yes, I am thinking of sueing them after I've lost an eye, steel plates in my ankle, psychotic episodes and so on. They had plenty of chances to pick this up, but they have failed, every time.

barking mad said:

Second, it would be good if people stopped making comments suggesting that suing the NHS takes money away from the rest of the people who need treatment: it does not.  The NHS, like any other huge corporation, has LIABILITY INSURANCE which is what pays any claim for compensation.  In addition, any practicing professional such as dentist, lawyer, GP, osteopath etc, will have liability insurance.  Nobody is denied treatment because somebody sues for not receiving the correct treatment.

In the short term, perhaps not.

However, there is only a limited pool of money with which the NHS operates, and each and every claim against their liability insurance will increase the payments the NHS has to make to maintain that insurance, thereby reducing the amount of money available for other things, and ultimately that will lead to fewer people getting treatment.

barking mad said:

First, let me say that you should not let anybody belittle your experience of misdiagnosis: it is extremely distressing and affects your life just as much as if they cut off the wrong leg.

Second, it would be good if people stopped making comments suggesting that suing the NHS takes money away from the rest of the people who need treatment: it does not.  The NHS, like any other huge corporation, has LIABILITY INSURANCE which is what pays any claim for compensation.  In addition, any practicing professional such as dentist, lawyer, GP, osteopath etc, will have liability insurance.  Nobody is denied treatment because somebody sues for not receiving the correct treatment.

As for the misdiagnoses you feel you have been given, it is possible to have co-morbid mental health issues with autism and the problem, as I see it, is that people of your age (I am 46) presented with difficulties at a time when autism was not on the radar of most GPs.  Autistic spectrum disorders or high functioning autism didn't really exist at the time so the difficulties you face with these 'conditions' were likely to be interpreted as psychological rather than neurological.  Of course, once this has happened, you are invariably going to be given pharmaceuticals which complicate the issue and, as you state, depression is almost inevitable when wading through each day is such a challenge.

I think that what is most important to somebody in your position is the acknowledgement that you have been let down by the system.  If a medical practitioner were to sit in front of you and say "my goodness, what a mess!  How on earth have you managed?" you might feel much better.  It's the fact that you are treated as though you are a nuisance/hypochondriac who has no right to question their authority that causes the most distress.  If they had cut off the wrong leg, their mishandling of your treatment would be blatantly obvious and undeniable.  When the problem is related to cognitive function and ability to deal with what most people find irrelevant/easy, it is less clear cut but still not acceptable.  

For anybody to suggest that you should be grateful that they didn't miss a condition that could kill you is offensive.   Depression can, and does, kill.  Depression caused as a result of primary diagnosis being missed is no different than losing your sight because somebody failed to notice your diabetes.  

I suggest you get in touch with the PAL or Google patient advocacy.  Try wading through the information because it will tell you how they can act for you to ensure that you receive the treatment you deserve.  You may find that this is all you need to make you feel better but if it is not, then you can contact a lawyer to talk about whether or not you want to take it further.

Most people will be put off the idea of suing because of comments like the ones that have been made to you - nobody wants to be responsible for taking money from patient services - or because they are worried that their treatment will be affected by the fact that they have sued.  Showing damages - which is what you must do to be awarded compensation - is also very difficult.  You need to have something concrete you can describe that has happened to you as a result of the misdiagnosis (such as loss of earnings or real - by which I mean measurable - emotional distress or broken relationships etc).  Compensation payments are also likely to be relatively small: the largest compensation payments are awarded in cases of negligence where it can be proven that quality of life has been irrevocably altered (such as with complications at birth that require a patient to have lifelong care etc).  

Notwithstanding the above, if more people complained and/or sued, less people might be put in your position.  We are extremely lucking to have the NHS but that does not mean that it is beyond reproach.  It is paid for by our taxes so in a way we are shareholders and as such have a responsibility to ensure that it is run correctly.  We also have a right to good 'service'.  Just because something is free to the user does not mean it can be substandard.  I think everybody would be outraged if we sent vaccines to a 3rd world country that turned out to cause medical problems and would demand somebody be held to account.  Why should it be any different with the NHS?

Finally, my advice to you would be: read.  Read everything you can about the issues that affect you.  Be informed so that you can have a say in your treatments.  It is your right to question - doctors are people, not gods, and they are intrinsically fallible.

Good luck

Paul asked for advice and some of us gave him our own opinions.  It is not our fault if our  viewpoints were not in keeping with what he wanted to hear, and I was NOT belittling his experience. 

Firstly, Asperger Syndrome is a relatively recent diagnosis and one which continues to evolve (which it is likely to in the DSM-V, although it remains the same in the WHO's ICD-10).  Maybe is was a simple misdiagnosis based on a lack of more widespread knowledge of Asperger Syndrome?  

Secondly, if Paul would only get a pittance in compensation, then what would be the point?  Is it really worth going through all the processes of getting legal aid, seeking a solicitor, arguing the case in court, etc, for a small amount of compensation?  

Thirdly, he has not been physically injured by the NHS and therefore has not been inflicted with life-threatening injuries or life-changing injuries.  He is phsycially ok.  

Fourth, I suggested submitting an official complaint to the local NHS mental health trust and see whether they can review all his past diagnosises and see what was the underlying cause of the original misdiagnosis.  (The NHS may even come to the conclusion that the original diagnosis was the correct one and the Asperger/Autism diagnosis to be incorrect; it might be unlikely, but certainly not impossible.)  A case review and lessons learnt would most likely benefit Paul and other patients far more than sueing for a pittiful amount of compensation.  

Silver100 said:

Paull - your story is no different from most of the adults now being diagnosed. I wasn't diagnosed until I was 54 so be thankful you have had an extra ten years!! I had decades of anti-psychotic medication as well as diagnoses for anxiety depression phobias blah blah blah.  It would have made a huge difference to me to have been diagnosed 30 years ago or even 20 I wouldn't have wasted my life. They were not negligent they just didn't know everything.

Asperger's has only been known about in the UK 20 years and then it was largely kept to the academic community. Tests like ADOS and other knowledge about conditions takes years to develop and validate. Things are improving and that's the best we can hope for. Sueing isn't going to do you or anyone else any good - it just makes them nervous about giving diagnoses to people.  I don't think you will have any success and I think it will be an arduous and distressing process for you. Do you really want to waste another two years.?

Ditto!  My original point, basically.

Agreed, Silver. It's not the medical professional fault that conditions such as Aspergers have only recently been discovered. Therefore, how can they be held responsible for something like this?

Paull - your story is no different from most of the adults now being diagnosed. I wasn't diagnosed until I was 54 so be thankful you have had an extra ten years!! I had decades of anti-psychotic medication as well as diagnoses for anxiety depression phobias blah blah blah.  It would have made a huge difference to me to have been diagnosed 30 years ago or even 20 I wouldn't have wasted my life. They were not negligent they just didn't know everything.

Asperger's has only been known about in the UK 20 years and then it was largely kept to the academic community. Tests like ADOS and other knowledge about conditions takes years to develop and validate. Things are improving and that's the best we can hope for. Sueing isn't going to do you or anyone else any good - it just makes them nervous about giving diagnoses to people.  I don't think you will have any success and I think it will be an arduous and distressing process for you. Do you really want to waste another two years.?

Second, it would be good if people stopped making comments suggesting that suing the NHS takes money away from the rest of the people who need treatment: it does not.  The NHS, like any other huge corporation, has LIABILITY INSURANCE which is what pays any claim for compensation.

It does push up their insurance cost though, which is footed by tax payers. Therefore, still taking money from other services and people that need it.

I am not sure what good suing will actually do? It's not as if you've been left so disabled that you're now having to pay for care.

First, let me say that you should not let anybody belittle your experience of misdiagnosis: it is extremely distressing and affects your life just as much as if they cut off the wrong leg.

Second, it would be good if people stopped making comments suggesting that suing the NHS takes money away from the rest of the people who need treatment: it does not.  The NHS, like any other huge corporation, has LIABILITY INSURANCE which is what pays any claim for compensation.  In addition, any practicing professional such as dentist, lawyer, GP, osteopath etc, will have liability insurance.  Nobody is denied treatment because somebody sues for not receiving the correct treatment.

As for the misdiagnoses you feel you have been given, it is possible to have co-morbid mental health issues with autism and the problem, as I see it, is that people of your age (I am 46) presented with difficulties at a time when autism was not on the radar of most GPs.  Autistic spectrum disorders or high functioning autism didn't really exist at the time so the difficulties you face with these 'conditions' were likely to be interpreted as psychological rather than neurological.  Of course, once this has happened, you are invariably going to be given pharmaceuticals which complicate the issue and, as you state, depression is almost inevitable when wading through each day is such a challenge.

I think that what is most important to somebody in your position is the acknowledgement that you have been let down by the system.  If a medical practitioner were to sit in front of you and say "my goodness, what a mess!  How on earth have you managed?" you might feel much better.  It's the fact that you are treated as though you are a nuisance/hypochondriac who has no right to question their authority that causes the most distress.  If they had cut off the wrong leg, their mishandling of your treatment would be blatantly obvious and undeniable.  When the problem is related to cognitive function and ability to deal with what most people find irrelevant/easy, it is less clear cut but still not acceptable.  

For anybody to suggest that you should be grateful that they didn't miss a condition that could kill you is offensive.   Depression can, and does, kill.  Depression caused as a result of primary diagnosis being missed is no different than losing your sight because somebody failed to notice your diabetes.  

I suggest you get in touch with the PAL or Google patient advocacy.  Try wading through the information because it will tell you how they can act for you to ensure that you receive the treatment you deserve.  You may find that this is all you need to make you feel better but if it is not, then you can contact a lawyer to talk about whether or not you want to take it further.

Most people will be put off the idea of suing because of comments like the ones that have been made to you - nobody wants to be responsible for taking money from patient services - or because they are worried that their treatment will be affected by the fact that they have sued.  Showing damages - which is what you must do to be awarded compensation - is also very difficult.  You need to have something concrete you can describe that has happened to you as a result of the misdiagnosis (such as loss of earnings or real - by which I mean measurable - emotional distress or broken relationships etc).  Compensation payments are also likely to be relatively small: the largest compensation payments are awarded in cases of negligence where it can be proven that quality of life has been irrevocably altered (such as with complications at birth that require a patient to have lifelong care etc).  

Notwithstanding the above, if more people complained and/or sued, less people might be put in your position.  We are extremely lucking to have the NHS but that does not mean that it is beyond reproach.  It is paid for by our taxes so in a way we are shareholders and as such have a responsibility to ensure that it is run correctly.  We also have a right to good 'service'.  Just because something is free to the user does not mean it can be substandard.  I think everybody would be outraged if we sent vaccines to a 3rd world country that turned out to cause medical problems and would demand somebody be held to account.  Why should it be any different with the NHS?

Finally, my advice to you would be: read.  Read everything you can about the issues that affect you.  Be informed so that you can have a say in your treatments.  It is your right to question - doctors are people, not gods, and they are intrinsically fallible.

Good luck

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Easy said:

I just dont approve of sueing the NHS, I think its iresponsible and mean.

You may have a case but it seems a huge waste of time and money for everyone, including you. I expect the legal fees and admin costs would far exceed any compensation.

 

I tend to agree with Easy. The NHS have not caused you a life-threatening or life-changing injury as such.  And suing the NHS at a time when it is being asked to make £20 billion efficiency savings may just take away monies that could have otherwise been spent on patient care.  

You could put in an official complaint and ask for your past diagnosises to be re-examinated, to try and find out why you were misdiagnosed or whether there was any professional neglect involved.  

Similarly, Autism and its diagnosis and understanding of the condition has developed over the later half of the 20th century.  Asperger Syndrome did not become more widely recognised until the 1990s, after Dr Hans Asperger's work was translated into English and made more widely available outside of Germany.  Therefore, your mis-diagnosis may have been simply due to a lack of knowledge of Autism and how it can affect people in different ways and its varying degrees of severity and so on.  

I don't agree with suing the NHS. It's not left you needing care, etc.

Autism also presents as other stuff and depending on how you present, they're not going to automatically assume you have Autism.

Not being rude; but be grateful they didn't miss a condition which can kill you. My father & I have both been in this situation. Both of us have been left with head injuries and memory problems. In my case, they actually hid the diagnosis from my parents (therefore, refusing to medicate me) and claimed my parents were over reacting and they blamed everything on me being sight impaired.

It's probably not possible, but it would be better to sue the individual doctor who misdiagnosed you rather than the NHS.  If you really want to look into it, there are solicitors always advertising medical negligence services.

I just dont approve of sueing the NHS, I think its iresponsible and mean.

You may have a case but it seems a huge waste of time and money for everyone, including you. I expect the legal fees and admin costs would far exceed any compensation.