Campaign For Fairer Medical Assessments & Understanding of Lupus Sufferers and Associated Connective Tissue Disorder
This petition is to increase government awareness of the complexity of this debilitating disease. Systemic Lupus Erythematosus is hard to say and much harder to live with. It affects lives, ruins relationships and can stop people working. At a time when the government's mission is to get as many people off sickness benefits and back into work, as a means of easing the deficit, the Lupus community need to raise the profile of this disease: One which is bewildering, unpredicatble and debilitating. We need our voice to be heard... We need DWP Doctors to understand that the current medical assessments are by no means fair when assessing a Lupus sufferer. Most of us have suffered for many years; we have more hospital appointments in one year than most people have in a lifetime. We never know from one day to the next how we will feel, we can't predict or even plan. We need the government directive for medical DWP assesments to include that all claimants with a diagnosis of SLE or associated connective tissue disorder should complete a relevent questionnaire focusing on how the disease affects us. Rather than have a DWP Doctor carry out a 'one for all test' and based on his/her findings on the day declare us fit or unfit for work. Our own physcians involved in our care should be allowed to provide supportive evidence. We should be exempt from having to prove to a DWP Doctor (who doesn't know us!) that we are 'sick' Our supportive medical evidence should be all that is required, thus preventing the additional stress this situation is causing and in turn can exacerbate symptoms. Lupus is a difficult disease to diagnose. On average it takes six years from onset of symptoms to diagnosis; however, in some cases it can take much longer. It is therefore unfair that someone, who has no knowledge of how the disease affects us day to day; or does not know how much our lives are compromised, can be responsible for determining our future.
If you are a Lupus sufferer or can support someone who is, please sign your name to the petition below. We need to fight back, we need to stand up and have our voice heard and in doing so free ourselves from a future fuelled with fear.
Updates
Reached 1,000 supporters
June 16, 2011
May 23, 2011
I AM ABSOLUTELY BLOWN AWAY BY THE MOMENTUM WE HAVE BUILT TOGETHER!! THIS ENERGY PROVES THAT THE GOVERNMENT CANNOT IGNORE OUR STRUGGLE ANY LONGER BECAUSE WE ARE A UNITED FORCE FOR CHANGE!!
May 16, 2011
ONE HUNDRED PEOPLE HAVE SIGNED!! THIS IS ABSOLUTELY INCREDIBLE AND I AM SO GRATEFUL FOR THIS SUDDEN SURGE OF SUPPORT FOR THE LUPUS COMMUNITY!!
Reached 100 supporters
May 14, 2011
May 11, 2011
WE ARE ALMOST AT ONE HUNDRED SIGNATURES AND THE MOMENTUM IS EXPLODING!! LET US BLAST THROUGH THIS MILESTONE RIGHT NOW BY SENDING THIS LINK TO EVERY PERSON YOU KNOW!! THE DWP NEEDS TO SEE THAT WE ARE AN UNSTOPPABLE FORCE!!
7 Comments
My sister has lupus and shes had hell with these assessors. They dont listen to a word she says even with doctor letters. It needs to change.
Been there and done it. The process is completely dehumanizing and designed to make you fail. Absolute joke.
Total incompetence. Government needs to get real about invisible illnesses.
Ridiculous that a doctor who sees you for 10 mins knows better than your own specialist who has treated you for years. Sort it out.
So tired of fighting for basic respect. My specialist knows my limits better than any random assessor ever will.
I have found in my case the DSS to be very unsympathetic because my symptoms are very variable. I have the brain form of Lupus but this was ignored and I was told I was fit to work. Gps med certs were ignored and conveniently lost at my local jobcentre. I contested their esa decision which suddenly stopped with a number of specialists consultants letter and my GP who I attended since a child. I then was lucky enough to get a supportive member of the jobcentre after seeing different members each time. He advised me that i could go on EPS for 13 weeks maximium. I was told this week even though I had a reputable Drs med cert for 2 months that I have to look for work now. Even though I have a severe Neuro Lupus condition with a multi system involvement which is still under investigation and active. There is no cure but in time it van go into remission. I am currently searching for employment as have no choice as do not want to incur more stress with debt and end up homeless. As this has a knock on effect. But I also have been warned going back to work before my illness is in remission could cause more damage but no one seems to care and just says it is the law I cannot claim again if I get ill now within 6 months unless it is for a different condition. This law has to change why are we treated hard working people who get ill like criminals!!!
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Campaign For Fairer Medical Assessments & Understanding of Lupus Sufferers and Associated Connective Tissue Disorder
This petition is to increase government awareness of the complexity of this debilitating disease. Systemic Lupus Erythematosus is hard to say and much harder to live with. It affects lives, ruins relationships and can stop people working. At a time when the government's mission is to get as many people off sickness benefits and back into work, as a means of easing the deficit, the Lupus community need to raise the profile of this disease: One which is bewildering, unpredicatble and debilitating. We need our voice to be heard... We need DWP Doctors to understand that the current medical assessments are by no means fair when assessing a Lupus sufferer. Most of us have suffered for many years; we have more hospital appointments in one year than most people have in a lifetime. We never know from one day to the next how we will feel, we can't predict or even plan. We need the government directive for medical DWP assesments to include that all claimants with a diagnosis of SLE or associated connective tissue disorder should complete a relevent questionnaire focusing on how the disease affects us. Rather than have a DWP Doctor carry out a 'one for all test' and based on his/her findings on the day declare us fit or unfit for work. Our own physcians involved in our care should be allowed to provide supportive evidence. We should be exempt from having to prove to a DWP Doctor (who doesn't know us!) that we are 'sick' Our supportive medical evidence should be all that is required, thus preventing the additional stress this situation is causing and in turn can exacerbate symptoms. Lupus is a difficult disease to diagnose. On average it takes six years from onset of symptoms to diagnosis; however, in some cases it can take much longer. It is therefore unfair that someone, who has no knowledge of how the disease affects us day to day; or does not know how much our lives are compromised, can be responsible for determining our future.
If you are a Lupus sufferer or can support someone who is, please sign your name to the petition below. We need to fight back, we need to stand up and have our voice heard and in doing so free ourselves from a future fuelled with fear.
Updates
Reached 1,000 supporters
June 16, 2011
May 23, 2011
I AM ABSOLUTELY BLOWN AWAY BY THE MOMENTUM WE HAVE BUILT TOGETHER!! THIS ENERGY PROVES THAT THE GOVERNMENT CANNOT IGNORE OUR STRUGGLE ANY LONGER BECAUSE WE ARE A UNITED FORCE FOR CHANGE!!
May 16, 2011
ONE HUNDRED PEOPLE HAVE SIGNED!! THIS IS ABSOLUTELY INCREDIBLE AND I AM SO GRATEFUL FOR THIS SUDDEN SURGE OF SUPPORT FOR THE LUPUS COMMUNITY!!
Reached 100 supporters
May 14, 2011
May 11, 2011
WE ARE ALMOST AT ONE HUNDRED SIGNATURES AND THE MOMENTUM IS EXPLODING!! LET US BLAST THROUGH THIS MILESTONE RIGHT NOW BY SENDING THIS LINK TO EVERY PERSON YOU KNOW!! THE DWP NEEDS TO SEE THAT WE ARE AN UNSTOPPABLE FORCE!!
7 Comments
Lupus is a nightmare. Some days I cant even hold a pen but they look at you and say your fine. Makes me so angry.
My sister has lupus and shes had hell with these assessors. They dont listen to a word she says even with doctor letters. It needs to change.
Been there and done it. The process is completely dehumanizing and designed to make you fail. Absolute joke.
Total incompetence. Government needs to get real about invisible illnesses.
Ridiculous that a doctor who sees you for 10 mins knows better than your own specialist who has treated you for years. Sort it out.
So tired of fighting for basic respect. My specialist knows my limits better than any random assessor ever will.
I have found in my case the DSS to be very unsympathetic because my symptoms are very variable. I have the brain form of Lupus but this was ignored and I was told I was fit to work. Gps med certs were ignored and conveniently lost at my local jobcentre. I contested their esa decision which suddenly stopped with a number of specialists consultants letter and my GP who I attended since a child. I then was lucky enough to get a supportive member of the jobcentre after seeing different members each time. He advised me that i could go on EPS for 13 weeks maximium. I was told this week even though I had a reputable Drs med cert for 2 months that I have to look for work now. Even though I have a severe Neuro Lupus condition with a multi system involvement which is still under investigation and active. There is no cure but in time it van go into remission. I am currently searching for employment as have no choice as do not want to incur more stress with debt and end up homeless. As this has a knock on effect. But I also have been warned going back to work before my illness is in remission could cause more damage but no one seems to care and just says it is the law I cannot claim again if I get ill now within 6 months unless it is for a different condition. This law has to change why are we treated hard working people who get ill like criminals!!!
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Lupus is a nightmare. Some days I cant even hold a pen but they look at you and say your fine. Makes me so angry.