100 signatures reached
To: Humza Yousaf, Cabinet Secretary for Health and Social Care
Diagnosis and Treatment Needed for Rare Disease
Meaningful action needs to be taken by UK health professionals to address an undiagnosed medical case and give it the medical attention it needs.
I ask that health professionals and research groups in the UK get in touch with me and help solve my medical case, or grant me access to the resources and treatment I need to do so.
I ask that health professionals and research groups in the UK get in touch with me and help solve my medical case, or grant me access to the resources and treatment I need to do so.
Why is this important?
I am Sean McQueen, I'm currently 27 years old and from Glasgow, Scotland in the UK.
I am writing this petition to call on health professionals and research groups to help get to the bottom of an unresolved medical case of mine, which is falling through the cracks in the UK's medical system.
Since 2016, I've had a seemingly progressive neurological illness which has remained without any definitive answers, a confirmed diagnosis or any kind of treatment pathway for over 5 years now, while I continue to deteriorate and remain frustrated in my ongoing search for answers. I have been forced to abandon my future career prospects, cannot work, have lost much of what constitutes a normal life and have had to become my own advocate and project manager for my health.
My condition began in June 2016 with a sudden onset of flu-like symptoms and cognitive decline, after being more or less completely healthy the day before. The cognitive problems I speak of were severely debilitating from the onset, enough to force me to give up a 2-year college course which I was days away from completing. Since then, this cognitive decline has never improved in any way at all and continues to follow a worsening course, with me gradually developing more progressive symptoms of ill health over the course I've remained with this mystery condition.
I still remain without a definitive diagnosis and treatment pathway. So far, I have only been given false reassurance from doctors and several vague 'wastebasket' diagnoses such as post-viral fatigue, chronic fatigue syndrome and functional neurological disorder. The medical testing and investigations I've received over the years has been mostly limited to standard routine blood tests and MRI or CT scans of the brain, with consultants and senior specialists not referring me for any further investigations. Further action has to be taken to address this problem and give it the medical attention it desperately needs. I have valid reasons to suspect that my condition could be a rare autoimmune disorder of the brain and I'm looking to get my condition investigated accordingly. The investigations currently on the top of my list are a PET scan, an EEG and a full autoimmune encephalitis workup.
I ask now that health professionals and research groups in the UK get in touch with me and help solve this medical case, or at least grant me access to investigations I may need to do so. Just now, my top priority is getting medical evidence that will validate my symptoms and show that there is in fact an objective problem for doctors. I do not intend to further burden the NHS with my case, and so, I am willing to make any arrangements necessary and can cover the costs of all medical tests, investigations, research studies, treatments and logistics it may take to finally get to the bottom of this mystery condition. I may also consider getting treatment overseas if I'm unable to get access to it in the UK.
I am in a similar boat with many who have chronic health conditions, both diagnosed and undiagnosed, who are being failed by their doctors. So, if you can relate to my story and feel that this petition resonates with you in any way, then be sure to sign it and get your voices heard too. Perhaps even start your own petition if you feel you have to. Hopefully some good will come out of this for others in similar situations.
And to all my fellow musicians, concertgoers and friends/followers on social media, if you would like to continue supporting my musical endeavours and want to see me back on deck at future gigs, then have your say here and help me get the word out.
For all those who have signed, thank you very much for your support!
I am writing this petition to call on health professionals and research groups to help get to the bottom of an unresolved medical case of mine, which is falling through the cracks in the UK's medical system.
Since 2016, I've had a seemingly progressive neurological illness which has remained without any definitive answers, a confirmed diagnosis or any kind of treatment pathway for over 5 years now, while I continue to deteriorate and remain frustrated in my ongoing search for answers. I have been forced to abandon my future career prospects, cannot work, have lost much of what constitutes a normal life and have had to become my own advocate and project manager for my health.
My condition began in June 2016 with a sudden onset of flu-like symptoms and cognitive decline, after being more or less completely healthy the day before. The cognitive problems I speak of were severely debilitating from the onset, enough to force me to give up a 2-year college course which I was days away from completing. Since then, this cognitive decline has never improved in any way at all and continues to follow a worsening course, with me gradually developing more progressive symptoms of ill health over the course I've remained with this mystery condition.
I still remain without a definitive diagnosis and treatment pathway. So far, I have only been given false reassurance from doctors and several vague 'wastebasket' diagnoses such as post-viral fatigue, chronic fatigue syndrome and functional neurological disorder. The medical testing and investigations I've received over the years has been mostly limited to standard routine blood tests and MRI or CT scans of the brain, with consultants and senior specialists not referring me for any further investigations. Further action has to be taken to address this problem and give it the medical attention it desperately needs. I have valid reasons to suspect that my condition could be a rare autoimmune disorder of the brain and I'm looking to get my condition investigated accordingly. The investigations currently on the top of my list are a PET scan, an EEG and a full autoimmune encephalitis workup.
I ask now that health professionals and research groups in the UK get in touch with me and help solve this medical case, or at least grant me access to investigations I may need to do so. Just now, my top priority is getting medical evidence that will validate my symptoms and show that there is in fact an objective problem for doctors. I do not intend to further burden the NHS with my case, and so, I am willing to make any arrangements necessary and can cover the costs of all medical tests, investigations, research studies, treatments and logistics it may take to finally get to the bottom of this mystery condition. I may also consider getting treatment overseas if I'm unable to get access to it in the UK.
I am in a similar boat with many who have chronic health conditions, both diagnosed and undiagnosed, who are being failed by their doctors. So, if you can relate to my story and feel that this petition resonates with you in any way, then be sure to sign it and get your voices heard too. Perhaps even start your own petition if you feel you have to. Hopefully some good will come out of this for others in similar situations.
And to all my fellow musicians, concertgoers and friends/followers on social media, if you would like to continue supporting my musical endeavours and want to see me back on deck at future gigs, then have your say here and help me get the word out.
For all those who have signed, thank you very much for your support!
