fightback against discrimination by some in medical profession Lyme

[Allyson]

Lyme Disease Association of Australia
One of the huge barriers that Lyme disease patients face is discrimination in Australia - this affects Lyme sufferers (& their families) ability to access medical care, schooling, disability services and much more.

Currently the main discrimination is happening in regards to being denied medical care - we hear horrendous stories every day of people who are kicked out of emergency departments, yelled at by specialists and mistreated in the medical system.

The LDAA is currently compiling these stories to be used in our next advocacy & lobbying push. If you would like your story of discrimination to be included in this work, please feel free to send it to us by email (info@lymedisease.org.au).

Nikki Coleman will be the contact on this if you need to contact her about it as well. Thank you for your support -together we can fight Lyme disease & WINSee More


can those with other illnesses besides lyme partake?

this is a great idea - we will see if they will open the books to ohter ilnessoe or perhaps we can organise similar....

 

[Esther12]

It is complicated by the fact that, with Lyme, there are some dodgy practioners promoting treatments which are likely to be inappropriate. Also, our understanding of Lyme and why some people go on to suffer long-term symptoms is poor, so we don't really know what treatment is appropriate.

It does seem that this has added up to mean that some doctors have responded to this by being dicks to patients ill with Lyme (even if wrongly diagnosed), and making things much worse - but it's quite possible that the treatment the ldaa want is scientifically unfounded. Increasingly, I think that medical appointments should be routinely recorded, so that there is a clear record of what was said. At the moment, the power relationship in doctor's surgeries is so one sided that doctors do feel able to just follow their prejudices.

 

[Allyson]

It is complicated by the fact that, with Lyme, there are some dodgy practioners promoting treatments which are likely to be inappropriate. Also, our understanding of Lyme and why some people go on to suffer long-term symptoms is poor, so we don't really know what treatment is appropriate.

It does seem that this has added up to mean that some doctors have responded to this by being dicks to patients ill with Lyme (even if wrongly diagnosed), and making things much worse - but it's quite possible that the treatment the ldaa want is scientifically unfounded. Increasingly, I think that medical appointments should be routinely recorded, so that there is a clear record of what was said. At the moment, the power relationship in doctor's surgeries is so one sided that doctors do feel able to just follow their prejudices.

Thanks esther - a good point - and they write up their version of events too.

just got this reply in from -

Lyme Disease Association of Australia
Quote

sadly at this point the scope of our work on this is only with Lyme disease patients who have experienced discrimination. The material is in relation to the Chief Medical Officer's Clinical Advisory Committee on Lyme Disease, which is why it is limited to Lyme disease patients, not because ME/CFS/EDS people don't suffer similar discrimination. The ME/CFS/EDS organisations are very welcome to put forward their own case to the CMO (in regards to the discrimination ME/CFS patients face), or to the disability discrimination commissioner.

unquote

 

[Allyson]

I did see talk somewher of a class action being mounted - perhap we could unify for that

and i had this thought
]
If a guy has a motorbike accident he will get hundreds of thousands of dollars of free medical care in Australia- intensive care, hospital, IVs, drugs , rehab.. til he is better - we get NOTHING and we get abused to boot.

We pay our taxes and medicare levy too. This is discrimination!

He can also go out and ride again and take the same risk and go through it all again....

 

[taniaaust1]

Thanks esther - a good point - and they write up their version of events too.

just got this reply in from -

Lyme Disease Association of Australia
Quote

sadly at this point the scope of our work on this is only with Lyme disease patients who have experienced discrimination. The material is in relation to the Chief Medical Officer's Clinical Advisory Committee on Lyme Disease, which is why it is limited to Lyme disease patients, not because ME/CFS/EDS people don't suffer similar discrimination. The ME/CFS/EDS organisations are very welcome to put forward their own case to the CMO (in regards to the discrimination ME/CFS patients face), or to the disability discrimination commissioner.

unquote

This is the whole issue.. or orgs are not doing anything to help us re discrimination. I rang SA ME/CFS years ago in tears due to the discrimination I was getting and was told we just need to be strong and wait and with time things will become better (I was suicidal at the time due to the unbearable discrimation I was up against). I WANT some kind of class action set up, I experience shockng discrimination and still do. (this morning I was printing off photos of the mess my house is in due to DisabilitySA not providing me with enough home support to send to the media which Im now trying to involve again.. I keep trying to do these things alone cause Ive had no help from our ME/CFS orgs, Ive been discriminated against at every single level except by the HCSCC commissioner, who seems to be listening.. I can go no further then what Im doing now except take our health system to court!!).

When I sent in evidence of the discrimination I got in applying for heating and cooling rebate.. the letter back to me which states tht a decision was made in which ME/CFS people do not quality for the rebate.. to the ME/CFS org SA branch.. I never heard back.. so still have discrimination as far as that rebate goes too even thou Ive gone unconscious in past (one year three times) due to heat.

We need group class actions but an associations dont seem to want to do anything or help us with anything like this... so I keep fighting the battle I fight alone and without help and trying to fight the situation throu the complaints commissioner office (but unfortunately they cant do anything about the discrimination of ME/CFS patients as far as heating and cooling rebate goes as they said they cant change gov policy which has ruled that out for us).
(GcMAF has been helping me some, put in a complaint to the complaint commissioner over my case and the unfair treatment Ive been recieving).

It isnt up to the lymies to do our fighting for us!! but something our orgs NEED to get more proactive with to help us stop the discrimination going on the gov and health levels.

If I manage to get the media involved does anyone know of anyone else in Sth Australia who is being treated badly and would be willing to talk to the media with me? please pm me if there is.

 

[Allyson]

This is the whole issue.. or orgs are not doing anything to help us re discrimination.....

I keep trying to do these things alone cause Ive had no help from our ME/CFS orgs, Ive been discriminated against at every single level except by the HCSCC commissioner, who seems to be listening.. I can go no further then what Im doing now except take our health system to court!!).....


We need group class actions but an associations dont seem to want to do anything or help us with anything like this...

It isnt up to the lymies to do our fighting for us!! but something our orgs NEED to get more proactive with to help us stop the discrimination going on the gov and health levels.

If I manage to get the media involved does anyone know of anyone else in Sth Australia who is being treated badly and would be willing to talk to the media with me? please pm me if there is.

Yes I agree entirely Tania; in fact when this post was put on the ME/ cfs /lyme australia page it was REMOVED

So not only are they not supporting us they are suppressing comments like yours.

I did not mena for LYmies to do it for us but that we could perhaps ombine forces or take a leaf out of therei booka nd approach the chief medical officer with brief summaries of the discrimination we face.

I think the internet is a gret menas for us to do this is we can get co-ordinated.

Sorry to hear of the troubles you have had, I understand how really hard it is and admire your courage and persistance..

cheers

Ally.

 

[taniaaust1]

Sorry to hear of the troubles you have had, I understand how really hard it is and admire your courage and persistance..

cheers

Ally.

I'll really got no other choice but to keep fighting things as I know if I get sicker (and I are currently going downhill with current situation), like I was in the past, I will end up completely bedbound and unable to do a thing (in past I was completely bedbound to the point I couldnt even walk to a loo... 9mths like that, couldnt be touched, couldnt even talk some times, struggling to understand language and some of the time I couldnt even feed myself with a fork and I couldnt handle light or any noise etc (someone talking to me used to send me into body shaking and near seizure). I fear for my life if I end up like that again without the needed support as people just dont believe how sick we are.. Ive been that sick before so could easily end up that way again.. I have that past hanging over my head.

If I cant get the support I need now, missing meals now at times, how on earth would I fight the system and get it if I get even sicker again? I'll be doomed, I will die (in my past when severe, I used to be comatose for up to 3 day periods at a time, wouldnt even wake for a drink. I are fortunate that I didnt die). I suspect thou if I get worst, that without good doctors, I'll just end up as one of those ME cases we all know about where they just lock you away in a mental hospital to try to force you to recover. Getting worst for me is a horrific thought and soo easily all this could occur. I are progressively slowly going downhill due to the way things are currently, for myself, fighting the system is actually a battle for my life.

I think anyone who has been where I have in the past with ME and who fears for their life due to this illness would do the same.. so really not something to admire me for. Its necessary. I just wish the support orgs could do more so those in fear of their lives due to ME arent trying to do it all alone. The severe ME group needs more aknowledgement and more support.