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Introduction and appeal

tiredverytired

Hello, this is an introduction and appeal for information/help/advice in one.

Since this may go to some kind of litigation in the future perhaps you can refer 

to me as tiredverytired, this properly reflects my feelings regarding our local

NHS mental health department.

I have an Autistic daughter and was briefly on this forum quite some time ago

when we could not get her assessed by the Mental health authority local to us.

The details are very long winded but basically they stalled us at every turn

and delayed her diagnosis for a good ten years, in fact more than this but I

am removing 3 or 4 years as the actual process time for wait list etc.. that

I suppose you have to expect.

The later half leading to eventually getting her diagnosed was a fairly bad 

tempered afair with us complaining considerably about their delaying and also

about certain discussions we had with various Doctors about my daughters needs 

being met and she did not require a diagnosis.

She was eventually diagnosed in an assessment, to clarify at this time she was

higher functioning autism. Unfortunately since then she has developed pyschosis

which has returned/persisted and is thought to be schizophrenia.

It is my personal belief that my local mental health authority are a bunch of self 

serving morons that make it up as they go along. They are obsessed with protecting

their funds and impeding us helping our daughter. Because of our criticisms they 

have adopted an antagonistic approach and are misrepresenting us in medical notes.

My daughter's mom has sought legal advice, there is a clear case of state 

abuse/neglect however the last case in our area which came up led to the mother 

being character assasinated and her child being removed from her. 

We both believe that they [NHS mental health] have been trying to errode and falsly 

suggest a lack of care, and embed historical lack of care etc.. in notes to 

mitigate themselves and their errors. They also know all our complaints and

seem to be setting out their stall so to speak with a view to defending themselves

at a later date.

1. Can we do anything about this abuse of notetaking and deliberate lying.

2. How best can we proceed to ensure we hold them to task now and in the future.

Due to disclosure of information we have obtained all my daughters notes and their 

are many incorrect statements in them with clear misrepresentations.

Basically it boils down to them trying to prevent/stall/avoid diagnosis

then defend and cover themselves legally.

Does anyone have any ideas on the best approach we should take.

Forgive spelling/grammar.

Tiredverytired...

Parents

  • Thanks Daisygirl.

    In some ways it's too late for us.

    We entered the process totally unaware of what we were getting into.

    Not for one minute did I think that we would be treated quite as badly as we have been.

    However after 13 years of this process nothing is unfamiliar anymore. I do think people new to the fray should know the potential problems they may face. I cannot find anywhere or any resource which could enlighten people to the issues.

    If I had known what I know now many things would have been approached differently. Every year new people are entering the unfortunate situation of having an autistic child or trying to get help for a child that may turn out to be autistic.

    When I think how close we came to getting no diagnosis and how obviously autistic my daughter is it makes me very angry. Despite our region's pr saying they are one of the best council authorities for handling autism they have nothing to offer and no specialized trained people. Yes they have physio's and Doctor's and Teachers but when you scratch below the surface you realize nobody has a specialization in autism or training that gives them any more depth of understanding of the subject than someone with common sense. That last point is unfortunate also because there is a serious lack of common sense also. There seems to be no desire to go any further than to supply a sedative and treat child as if they were in primary 5 with regards autism. 

    If you are unlucky enough for your child to develop psychosis then basically you get antipsychotic meds which are seriously not good with horrible side effects. It's what you don't get told that is interesting. What you have to find out yourself because no one will volunteer the information.

    A cynical person would suppose that much of the way you are handled is the result of a local authority cost cutting and trying to budget services that have been promised by central government. i.e. the local authority can't cash the cheque written by central government's promises.

    I don't want money, if there is no real public health help then that's ok.

    What I do not want is to be lied to. To be 'handled' and deceived for years by people who know fine well what they are doing. Nor do I want professionals pretending, (this particularly applies to teachers here) to have specialist knowledge when they have no specific training or depth of insight into autism.

    rant over with, personal therapy session ended for today!

Reply

  • Thanks Daisygirl.

    In some ways it's too late for us.

    We entered the process totally unaware of what we were getting into.

    Not for one minute did I think that we would be treated quite as badly as we have been.

    However after 13 years of this process nothing is unfamiliar anymore. I do think people new to the fray should know the potential problems they may face. I cannot find anywhere or any resource which could enlighten people to the issues.

    If I had known what I know now many things would have been approached differently. Every year new people are entering the unfortunate situation of having an autistic child or trying to get help for a child that may turn out to be autistic.

    When I think how close we came to getting no diagnosis and how obviously autistic my daughter is it makes me very angry. Despite our region's pr saying they are one of the best council authorities for handling autism they have nothing to offer and no specialized trained people. Yes they have physio's and Doctor's and Teachers but when you scratch below the surface you realize nobody has a specialization in autism or training that gives them any more depth of understanding of the subject than someone with common sense. That last point is unfortunate also because there is a serious lack of common sense also. There seems to be no desire to go any further than to supply a sedative and treat child as if they were in primary 5 with regards autism. 

    If you are unlucky enough for your child to develop psychosis then basically you get antipsychotic meds which are seriously not good with horrible side effects. It's what you don't get told that is interesting. What you have to find out yourself because no one will volunteer the information.

    A cynical person would suppose that much of the way you are handled is the result of a local authority cost cutting and trying to budget services that have been promised by central government. i.e. the local authority can't cash the cheque written by central government's promises.

    I don't want money, if there is no real public health help then that's ok.

    What I do not want is to be lied to. To be 'handled' and deceived for years by people who know fine well what they are doing. Nor do I want professionals pretending, (this particularly applies to teachers here) to have specialist knowledge when they have no specific training or depth of insight into autism.

    rant over with, personal therapy session ended for today!

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