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Hello,
I have joined today as I would like to try and get an understanding of options that are available to me. Regrettably I have been unwell. I have been suffering for about 40 years. I am 54 now. It's been a difficult journey and not one I would recommend to anyone. Sometimes life just simply sucks.
Before I go further may I offer up the good news. On Tuesday I will travel to The Royal Brompton Hospital in London for the third time in less than three months. I cannot find the words to describe how incredible this hospital has been. My referral was made by the Hospital directly and it is to their Rapid Response Clinic. I am assuming that the name of the unit and the speed with which the hospital has reacted to the results of my sleep test indicate there is an elevated threat to my life. If I have understood the various reputable websites that I have read I am in a very high risk category for heart attack, stroke, sudden death or passing away in my sleep.
I have asked the Consultant who has been looking over the process for some answers. He's asked that we speak about them when I arrive in London. And again I cannot find words to describe how thorough and meticulous he has been. He really is a credit to himself, his employer and his entire team.
However, in the meantime I do know some information. which was made available to me by the Hospital when they wrote to me.
Currently I have been told that the recommendation for my treatment going forward will be CPAP. This involves wearing a mask style device at night which will prevent my soft palate from collapsing. My Initial thoughts when I received my test results, especially after 40 years of non events by the NHS, I did some reading. Although the Hospital have not given me a diagnosis I assumed the diagnosis was going to be OSA (Obstructive Sleep Apnoea). When I read the symptoms of OSA I ticked all the boxes. Except one. I haven't snored. I am also not overweight. I weighed less than 8 stone when I was 18.
It took me four hours to work through the information and I came up with my own model of events which appears to withstand the evidence I have.
I do not have OSA. Well I do. However, I am reasonably comfortable to say that the OSA is actually induced by one of the medications I have been prescribed in 2013. The medication being Mirtazapine which has sedating qualities.
What I do have is something called "flow limitation". This is virtually the same as OSA although the stark contrast is sufferers do not snore. The treatment for both is the same.
I'm aware that it will take me a while to adjust to CPAP. Not least of which both my body and my mind will have some substantial repair work to do.
The prognosis, therefore, is good.
But after 40 years I can't help feeling that the NHS have been woefully slow in getting to me. Indeed I paid to see the consultant at the Hospital myself and offered to pay for the sleep study myself. He refused and sent me through the NHS. He was convinced there was "something happening". It took him five minutes to gather the evidence he needed and from that point he was a man on a mission and he's turned up the answers.
I first started suffering with excessive daytime sleepiness when I was about 13/14. I first saw an NHS GP about this when I was 17. I was prescribed sleeping tablets. They didn't work. Over the next 21 years I saw 5 more GP's and every time I complained of excessive day time tiredness I was tested for thyroids, diabetes and other stuff and told there was nothing wrong with me.
In February 2000 I was diagnosed by my current GP (well actually she retired in January this year) with clinical depression. I later spoke with her and asked her to look over my records and tell me how long I had been complaining of symptoms connected with depression. She had 17 years records in front of her and they all showed the symptoms had been on my records for all that time.
Over the next 16 years I have struggled. And I have asked to be referred to a sleep clinic on many occasions.
It wasn't until I put the process in place myself by my own actions in April this year that my GP (a new one) agreed I should have a sleep study.
I was with single point services from October 2014 to February 2016. I have now wish to sound disingenuous but they really didn't help. In particular I asked them to prescribe Modafinil. I was refused. I obtained some Modafinil myself and on January 29th 2016 I took my first tablet.
And, please for give me .... boooom!
I was awake within an hour. I couldn't remember ever being that awake. And this allowed me to escape the clutches of my condition long enough to work out how I could get the help I needed.
It took the NHS 21 years to diagnose clinical depression. Then and despite numerous requests to be referred to a sleep clinic they did not get me the correct help which, as can be seen by the incredible speed that the Royal Brompton have moved was clearly available.
Indeed in 2013 my request to be referred to a sleep clinic resulted in being diagnosed with depression and insomnia. And I remonstrated with the neurologist at the time about his diagnosis. This is in his letter. I was prescribed Mirtazapine. It's now clear that this has exacerbated my condition and increased the risk to my life.
My personal life has revolved about being tired. I've been irritable. Actually I been quite bad tempered. I have recently been told that my behavior was not a choice. It was a "coping mechanism". However, many in society have take time to tell me I made a choice. I do feel some resentment towards them.
I have not worked since January 2010. Before that I struggled to hold work down. I was constantly tired.
Should I consider how I can obtain compensation ?
There's clearly been an incorrect diagnosis. There's also been the issue of the timelines which are just appallingly long. I have also been prescribed the wrong medication which has increased the risk of death. And the NHS have constantly not listened to me. I first asked to be sent to a sleep clinic in about 2001/2. During all this I have never been asked to complete an Epworth Sleep Test. The Royal Brompton had done one within less than a minute of me arriving with them.
It is probable that all the medications I take can, ultimately, be withdrawn. I take Cipralex, Mirtazapine, Melatonin, Vitamin B12, Vitamin D3. I also have sinusitis and have acid reflux which are both symptoms of my condition.
I have a nine year old daughter and as I have not been consistent (able to rely on good health) I have not been able to keep pace with all the bills. There's some debt to sort out.
I can say I am not feeling sorry for myself. I am, however, completely numb. It's been too much for too long and if I may suggest just a little too much for an individual.
Is anyone able to tell me what options, if any, I have available please.
Thank you in advance for any replies :-)
I have joined today as I would like to try and get an understanding of options that are available to me. Regrettably I have been unwell. I have been suffering for about 40 years. I am 54 now. It's been a difficult journey and not one I would recommend to anyone. Sometimes life just simply sucks.
Before I go further may I offer up the good news. On Tuesday I will travel to The Royal Brompton Hospital in London for the third time in less than three months. I cannot find the words to describe how incredible this hospital has been. My referral was made by the Hospital directly and it is to their Rapid Response Clinic. I am assuming that the name of the unit and the speed with which the hospital has reacted to the results of my sleep test indicate there is an elevated threat to my life. If I have understood the various reputable websites that I have read I am in a very high risk category for heart attack, stroke, sudden death or passing away in my sleep.
I have asked the Consultant who has been looking over the process for some answers. He's asked that we speak about them when I arrive in London. And again I cannot find words to describe how thorough and meticulous he has been. He really is a credit to himself, his employer and his entire team.
However, in the meantime I do know some information. which was made available to me by the Hospital when they wrote to me.
Currently I have been told that the recommendation for my treatment going forward will be CPAP. This involves wearing a mask style device at night which will prevent my soft palate from collapsing. My Initial thoughts when I received my test results, especially after 40 years of non events by the NHS, I did some reading. Although the Hospital have not given me a diagnosis I assumed the diagnosis was going to be OSA (Obstructive Sleep Apnoea). When I read the symptoms of OSA I ticked all the boxes. Except one. I haven't snored. I am also not overweight. I weighed less than 8 stone when I was 18.
It took me four hours to work through the information and I came up with my own model of events which appears to withstand the evidence I have.
I do not have OSA. Well I do. However, I am reasonably comfortable to say that the OSA is actually induced by one of the medications I have been prescribed in 2013. The medication being Mirtazapine which has sedating qualities.
What I do have is something called "flow limitation". This is virtually the same as OSA although the stark contrast is sufferers do not snore. The treatment for both is the same.
I'm aware that it will take me a while to adjust to CPAP. Not least of which both my body and my mind will have some substantial repair work to do.
The prognosis, therefore, is good.
But after 40 years I can't help feeling that the NHS have been woefully slow in getting to me. Indeed I paid to see the consultant at the Hospital myself and offered to pay for the sleep study myself. He refused and sent me through the NHS. He was convinced there was "something happening". It took him five minutes to gather the evidence he needed and from that point he was a man on a mission and he's turned up the answers.
I first started suffering with excessive daytime sleepiness when I was about 13/14. I first saw an NHS GP about this when I was 17. I was prescribed sleeping tablets. They didn't work. Over the next 21 years I saw 5 more GP's and every time I complained of excessive day time tiredness I was tested for thyroids, diabetes and other stuff and told there was nothing wrong with me.
In February 2000 I was diagnosed by my current GP (well actually she retired in January this year) with clinical depression. I later spoke with her and asked her to look over my records and tell me how long I had been complaining of symptoms connected with depression. She had 17 years records in front of her and they all showed the symptoms had been on my records for all that time.
Over the next 16 years I have struggled. And I have asked to be referred to a sleep clinic on many occasions.
It wasn't until I put the process in place myself by my own actions in April this year that my GP (a new one) agreed I should have a sleep study.
I was with single point services from October 2014 to February 2016. I have now wish to sound disingenuous but they really didn't help. In particular I asked them to prescribe Modafinil. I was refused. I obtained some Modafinil myself and on January 29th 2016 I took my first tablet.
And, please for give me .... boooom!
I was awake within an hour. I couldn't remember ever being that awake. And this allowed me to escape the clutches of my condition long enough to work out how I could get the help I needed.
It took the NHS 21 years to diagnose clinical depression. Then and despite numerous requests to be referred to a sleep clinic they did not get me the correct help which, as can be seen by the incredible speed that the Royal Brompton have moved was clearly available.
Indeed in 2013 my request to be referred to a sleep clinic resulted in being diagnosed with depression and insomnia. And I remonstrated with the neurologist at the time about his diagnosis. This is in his letter. I was prescribed Mirtazapine. It's now clear that this has exacerbated my condition and increased the risk to my life.
My personal life has revolved about being tired. I've been irritable. Actually I been quite bad tempered. I have recently been told that my behavior was not a choice. It was a "coping mechanism". However, many in society have take time to tell me I made a choice. I do feel some resentment towards them.
I have not worked since January 2010. Before that I struggled to hold work down. I was constantly tired.
Should I consider how I can obtain compensation ?
There's clearly been an incorrect diagnosis. There's also been the issue of the timelines which are just appallingly long. I have also been prescribed the wrong medication which has increased the risk of death. And the NHS have constantly not listened to me. I first asked to be sent to a sleep clinic in about 2001/2. During all this I have never been asked to complete an Epworth Sleep Test. The Royal Brompton had done one within less than a minute of me arriving with them.
It is probable that all the medications I take can, ultimately, be withdrawn. I take Cipralex, Mirtazapine, Melatonin, Vitamin B12, Vitamin D3. I also have sinusitis and have acid reflux which are both symptoms of my condition.
I have a nine year old daughter and as I have not been consistent (able to rely on good health) I have not been able to keep pace with all the bills. There's some debt to sort out.
I can say I am not feeling sorry for myself. I am, however, completely numb. It's been too much for too long and if I may suggest just a little too much for an individual.
Is anyone able to tell me what options, if any, I have available please.
Thank you in advance for any replies :-)
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