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Could do with advice for a letter Im doing.

Discussion in 'Action Alerts and Advocacy' started by taniaaust1, Nov 22, 2011.

  1. taniaaust1

    taniaaust1

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    Yesterday I found out that once again I have been rejected in getting any help (unless I want to pay over $32 aussie dollars an hr). (thou I can now follow up this latest rejection with yet ANOTHER meeting which Im doing too.. thank God Im currently up to some meetings in my home and not too sick currently to have even those at times).

    It's to the point where Im now being advised by those in the health fields I was originally refered too to help me.. saying I need to complain to an MP about my situation as they've hit brick walls too with my case. So Ive now started to write a letter for that (to which I also will send a copy to newspaper and also TV current affair shows). Its hard as what Ive been throu sounds too crazy to be believed.

    Anyway.. I thought I'd write the letter as a summary of points to get the MPs attention what the whole thing is about and what im going throu. Then after that.. will do proper explaination of each point about what has gone on in my case. My summary Im "starting letter off with", is going as follows. (I just want to know if this seems okay or if anyone can remember anything about my case which I may of posted in the past that I've forgotten or blocked out).

    (this may change slightly as Im not sure yet if the other from my town will send her story to the MP with my letter).
    my letter starts as follows.
    ........

    "My story is so strange that it sounds unbelievable.. but if you check into this properly, you will find its true.

    Im going to provide some phone numbers of family members of mine, along with letters from people who can tell you I arent delusional and that my whole story here is true as crazy as it sounds. Im needing home help, help to get to medical appointments etc etc but just cant get it.
    I are including too, the letter of another in my town who has has had some similar discrimation as I.. to the point she had to seek help interstate.

    I'll give you a very brief run down of my situation in point form as its easier for me to summarise what Ive been throu like this, then will after explain each thing further detail later in the letter.

    - Ive been disabled for most of 14 years. Severely disabled for much of that time. (Currently mostly housebound and cant really leave the house without another being with me as I have collapses to which I then cant get up or walk after having them. Simply going shopping can cause one of these).

    - I have an illness which in our country is basically mostly getting ignored so those with it are being majorly discriminated against even by government orgs. As far as Im aware our doctors arent even really being taught about it in medical school, thou some of them think they know about it so those with serious illness are being not helped.

    - Discrimination due to disability which happened at Mt Barker Centrelink, Also a lot of wrongness with dealing with Mt Barker Disability job place personal they sent me to.

    - I ended up in jail after a near suicide attempt in which I was going set myself alight as living with this illness is at times unbearable . ..so then got charged with "attempted" arson after I contacted some mental health people to seek help from them as I'd almost set fire to myself and recognised that I must get help... this happened as I was suicidal due to lack of help in our country, discrimation on my illness including discrimination of government departments I was having to deal with and other severe very wrong factors which have gone on or were happening at that time.

    - During the long court proceding (of the above), I CHOOSE to go to jail rather then accept a bail during court case procedings. as being so ill, I was often going hungry due to having disability so severe that I often cant even cook for myself (Im still sometimes in that situation). I am also unable to keep my house clean etc. Just living necessary life is a huge struggle for me due to my disability.
    What kind of country are we living in where the disabled rather go to jail to be fed and cared for and actually then do that, rather then struggling to survive at home without the help they need and should be having???

    - Discrimation and terrible treatment while in Jail in regards to my disability eg I collapsed and couldnt get back up so was physically assaulted by a guard.

    - Discrimination of my illness by various Orgs to which should of helped me.. Ive been passed from org to org with none of them helping me after telling me they will and rejecting my case thou I have a severe disability so they pass me on.. back and forth.

    - Discrimination from hospitals and doctors cause of what Ive been diagnosed with cause they dont understand the illness (due to lack of being taught about it).

    - So much disablity discrimination .. in all kinds of areas. I believe Ive been traumatised by my whole situation of how my physical disability has been treated and still gets treated (or one just gets ignored by those who should be helping). Emotionally Im now carrying so much around with me due to all this and all the abuse Ive had have caused me to develop emotional issues. (Neighbours have rang police this year as I was apparently screaming in my sleep).

    - The poor treatment of me in regards to my physical illness has ended up leading to me being so emotionally disturbed at times that I end up self harming... and that then lead to a heavy handed police incident where I was physical assaulted (so said to protect me) which lead to me being further injured. (that one was a police assault.. resulted in a frozen shoulder where I couldnt move my arm properly for over 18mths and I had to have a lot of physio for it. My own self harm incident that day was over by the time police got involved and was actually fairly harmless to me).

    and so things go on.. Im still left without the physically support I need thou Im physically disabled so still living a life of severe struggle. Left without support due to all the discrimination out there, due to the lack of understanding about my illness.

    The most help Im getting is a psychologist appointment once every 6-8 weeks who is acting like counselling to me to help me deal with the abuse Ive suffered and how Im being treated. She's supporting and encouraging me to travel interstate to seek out specialists in my issues (thing is Im really too sick to travel alone).

    Someone in an org who I'd previously been refered too (3 or 4 times now), I was refered to again by crisis people, has now recommended me to write to a MP as they hit brick walls themself while trying to get physical help for me... services knocked me back again (discrimination??). DisablitySA thou Im a client of theirs, wont provide any funding for me to have services.
    Im also client of AutismSA but they dont have enough funding for services for adults. (Aspergers' thou isnt my "main" issue).

    ....

    Does that sound okay for a summary for what Im further going to talk about in my letter?
     
  2. alex3619

    alex3619 Senior Member

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    Hi Tania, something to think about is a one or two paragraph comment at the front which introduces the issues. Say what you are looking for and why, but no details. Then proceed to flesh it out in the main letter. Most people in offices lose interest after the first several paragraphs - they need to know this is a case of both discrimination and repeated failure to provide basic services to a disabled person, amounting to wide spread institutionalized abuse. Bye, Alex
     
    WillowJ, taniaaust1 and justinreilly like this.
  3. taniaaust1

    taniaaust1

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    Ok.. so summarise my summary. (Im going to work on this letter a little bit each day till I have it all done... probably take me a week or two or more). I've excerted a lot doing what I did so will do the summary of the summary tomorrow.

    Thanks
     
  4. Ocean

    Ocean Senior Member

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    I agree with Alex. I don't know what an MP is but reading this I see a description of your situation but not info on why you are writing and what you are hoping to get out of it. I would put that at the start of the letter, along with your "summary of your summary." Good luck. I have spent far too much time writing this type of things myself as well.
     
  5. taniaaust1

    taniaaust1

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    MP is a Member of Parliament ..someone who is part of government and takes problems to parliament etc.
     
  6. taniaaust1

    taniaaust1

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    An MP is a Member of Parliament (an people elected offical who can take issues to government).
     
  7. Esther12

    Esther12

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    Sorry for not reading this through more thoroughly, but I had a quick look, and thought that the opening paragraphs were a bad idea. MPs get lots of letters from crazy people about crazy things. Starting it with "I know this sounds crazy but..." is a risky strategy. Good luck with it all.
     
  8. Megan

    Megan Senior Member

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    Tania,

    It needs to be clearer what you have been diagnosed with (CFS) and what your limitations are. There is too much focus on the psychological consequences with not enough explaining why you need support services for your CFS. Do you have a doctor's letter or copy of medical records showing you have been diagnosed with CFS? I know it might be hard in SA, but I would have thought it important to have a doctors record of what your symptoms/limitations are to help back your claims.

    I'm not trying to minimise the psychological consequences, as these have obviously been very traumatic and are an issue in themselves, but they are a separate issue. Though I would expect such psychological factors could add weight to any claim for assistance you make through Centrelink, or perhaps other support services.
     
  9. Megan

    Megan Senior Member

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    Tania,

    It needs to be clearer what you have been diagnosed with (CFS) and what your limitations are. There is too much focus on the psychological consequences with not enough explaining why you need support services for your CFS. Do you have a doctor's letter or copy of medical records showing you have been diagnosed with CFS? I know it might be hard in SA, but I would have thought it important to have a doctors record of what your symptoms/limitations are to help back your claims.

    I'm not trying to minimise the psychological consequences, as these have obviously been very traumatic and are an issue in themselves, but they are a separate issue. Though I would expect such psychological factors could add weight to any claim for assistance you make through Centrelink, or perhaps other support services.
     
  10. taniaaust1

    taniaaust1

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    I was avoiding saying CFS in the summary of it as Ive personaly found that as soon as people hear that, they like turn away.

    So i was going to give details on it on the main part of my mail in which I also was going to provide links to accurate ME info, when explaining all which has gone on.

    I didnt mention my limitations in the summary of my letter as there is a HUGE amount of limitations I have and that wouldnt fit well in the summary part so hence I just said i was severely disabled... (would a MP even be interested in all the limitations I have? wouldnt they be more interested in actual bad treatment Ive had by services?)

    I have been verbally diagnosed with CFS by three doctors/specialists. I think the only place it is actually listed is on the forms which were used to apply for disability. After that that specialist calls my illness "fatiguing illness" (stupid as not much about it is about fatigue) or CFS like illness and dont really say much else. As nearly all of my symptoms have been ignored..I dont have much at all in the way of medical back up. All the doctors letters make it sound like Ive got mostly just psych issues even the CFS specialist did that with the referal to the professor of pathology im going to see.

    I dont have good doctors.. that is part of what Im going to complain to the MP about.. hard to get good doctors as they arent well trained in this illness. Not enough education on it to our health providers and the gov disability assessors and hence discrimination.

    thanks for your comment.. I made me go back and look at how many points of my letter Im going to write about in more depth had to do with mental health stuff. Only two out of the 10 points i will be going into more depth over are mental health stuff or treatment.. with the other 8 it will be about physical stuff.

    I do need to mention the mental health stuff cause that has been a direct result of being badly treated (or rather not helped at all) for the physical issues. I want to make it clear what a bad affect lack of services I should of got has had on me.

    All the "discrimination issues I mention and will go into further are all ME discrimination stuff (and not mental health stuff).
    ....

    Ester. I see what you mean. I'll take the word crazy out of it and think more about my opening paragraphs. (i'll do that tomorrow)

    Can someone please tell me how can i make sure my letter will be believed? when sharing about all the things which have happened to me?? police assault, jail assault, car smash ups due to centrelink threats which forced me to try to work etc etc It truely sounds like a movie but I want to tell all whats happened.
     
  11. taniaaust1

    taniaaust1

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    Megan..this is my CFS specialist referal the other day to another specialist. (for the first time he FINALLY tested my BP with me laying and standing which I'd been trying to get him to do for 4 years).

    "Re Tanya Selth dob 8/03/71

    Dear Anne,

    Tanya has many aspects to her problems, but it is a seeming lability of her cardiovascular responses, which I think could benefit by your help.

    Tanya knows about postural hypotension syndrome with tachycardia, as well described in the CFS literature as in hypertension circles and dysautonomias.

    We have never explained Tanyas collapses, but note that she believes she was fit and active until age 14years.

    I first saw her in 2006, when there were many complex factors to consider.

    I enclose earlier letters to give some idea about these.

    She is consistently exhausted and becomes very distressed and suicidal from time to time.

    In 2006 her BP was 122/85 with pulse 67/min sitting, and 137/97, P 87 standing.

    There have been 24 hour monitoring, echocardiograms and cardiological assessments. (She will bring records)

    More recently she has frequently reported to local doctors or emergency services, and has noted episodes of pulse rising to 150/min, and BP rising to 156/138.

    VMA and adrenaline and noradrenaline have been normal.

    ECU consistently normal.

    She has long been a consumer of large volumes of water 4litres/day, but up to 7litres, so she may have disturbed her own fluid regulation(?psychogenic polydipsia)

    On Tuesday her sitting BP was 142/85, P72/min.

    Supine was 131/90, P68/min.

    Standing 121/95, P 83/min. Continuing standing 165/105, P 95, and repeat after one more minute standing 169/120 with pulse varying between 80 and 11/min, but with varying amplitude of beats.

    Tanya is convinced that she has an autonomic disorder, and she is due to have repeat serum and urine osmolality, as well as renin and angiotensin,

    I would be grateful if you can see her, "
    ....

    Thou I dont tell him.. his attitude is bugging me.
    "she believes she was fit and active until age 14years" .. doesnt he believe me? what's this "she believes" part

    He provided letters on my "many complex factors" all the letters he linked to the referal were to do with mental health ..nothing on all the physical issues Ive tried to get him to listen too.

    "noradrenaline have been normal." I have an out of normal range test of that but he dont count that as it isnt enough out of the normal range. I did also have to do that test I think it was 4 times..as the results the lab was getting were so abnormal, they couldnt believe the test results so kept on blaming solution in bottles, thought I must of spilt it etc etc.

    The part I just love (being sarcastic is the part which he suggests I may have (?psychogenic polydipsia) (cause I do often get POTS and hence need to drink a lot.. he thinks my drinking a lot is psychological too).

    "More recently she has frequently reported to local doctors or emergency services, and has noted episodes of pulse rising to 150/min, and BP rising to 156/138"

    he's got that wrong.. i told him i get tachycardia at times but didnt say it went to 150 (unless i confused my BP with my pulse). "more recently"... well Ive been telling him that about my BP when I stand up for at least TWO YEARS so thank god he finally decided due to hearing about POTS and BP issues on the radio, decided to test mine.

    "and repeat after one more minute standing 169/120 with pulse varying between 80 and 11/min, but with varying amplitude of beats."

    So even with seeing that BP dysregulation result of having me stand for 1 minute (so hence I FINALLY get a referal to another specialist).. he still is stressing all the psych stuff with me.

    "She is consistently exhausted"

    I havent been able to get throu to him that its not exhaustion which is stopping me from doing things but rather my other symptoms eg POTS, neurological symptoms.. tremors when i excert, head pressure etc etc.

    As I said.. my doctors are being quite poor. I dont think they've even bothered to note all my symptoms down in their medical reports. It took several years for him to just pay attention to my terrible insomina... it had to get to the point where i wasnt sleeping for 48hr periods.. before he even decided to let me have melatonin. This is my CFS specialist.. my GP is even far worst.

    GP blames my mental health but of cause all the psychriastrists Ive gone to all say Im fine. (so I guess now its just seen that Im faking illness by him or something along those lines).
     
  12. taniaaust1

    taniaaust1

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    I already get disability allowance for CFS (not for mental health issues).. so as far as I know there isnt any other assistance throu Centrelink.

    nope.. the fact I get situational depression at times and go suicidal at times when ive been abused due to the ME/CFS or whatever.. dont help me get any support services.. all the mental health people say I dont have a mental health issue so I dont qualify throu any of their services.. (even when I are getting suicidal at times.. they say its just situational). They are recognising I have illness outside of their field.

    (it is mental health people who have been encouraging me to find new doctors to get my physical health issues taken care of as they know they cant really help)
     
  13. Ocean

    Ocean Senior Member

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    Oh yes, I thought that too but forgot to comment on that. Totally agree with Esther12.
     
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