My rights and my fight for self-regulation on the NHS!

[Sparticus]

I am going to write to my hospital and then to the NHS itself and find out why we cant look after ourselfs with full back-up for reading our own data. If they cant be bothered and are not checking things like Mask leaks, AHI readings and blood sats then who is? They may not be interested but I bloody well am, let the fight begin lol

[symmit]

Good luck! I hope you trigger some debate inside the service for this - I'm sure self regulation isn't for everyone, but I'm also sure that for a majority of CPAP users managing their own therapy with an auto CPAP machine and the backup of being able to drop in for help or make a quick call or email would give outcomes as good as the traditional "blow and hope" NHS methods, for less cost.

[Sparticus]

Diabetic

If a diabetic has the right to regulate their own symptoms and access their own data for their well-being then why cant I? If I have a long journey to take via road or air other than how I feel how am I suppose to check if my sleep is good or bad, a diabetic can check theirs and take action I cant

[Sparticus]

My Hospitals.

NHS Lothian is committed to helping everyone to live a healthier and happier
life, by providing quality health services, promoting the correct information
and advice to help patients to improve their own health and that of their
families.

I now feel I am being prevented from doing this as I cannot check to see if my readings during the night have placed my health and well-being into possible danger. If I have slept for 12 hours, did I have any leaks? Did my blood saturation level drop and did I get any quality sleep or will I start flagging after a hour. These reading are vital for us to be able to live a normal life instead of guessing if Im or we are ok!

[dravidio]

NHS Lothian is committed to helping everyone to live a healthier and happier
life, by providing quality health services, promoting the correct information
and advice to help patients to improve their own health and that of their
families.

I now feel I am being prevented from doing this as I cannot check to see if my readings during the night have placed my health and well-being into possible danger. If I have slept for 12 hours, did I have any leaks? Did my blood saturation level drop and did I get any quality sleep or will I start flagging after a hour. These reading are vital for us to be able to live a normal life instead of guessing if Im or we are ok!

Come on - how are you as a mere commoner meant to understand the arcane doings of the medical profession? This is all secret stuff to mystify and to make you feel inadequate and inferior. Like the operating gowns that show your bum to everyone - just to pinpoint what a grovelling worm the patient is. Despite all the buzz words, mission statements, or whatever - the medical profession remains a sort of magic and there are still many who feel that if they belong to it they are some sort of higher being. It goes back a long long way...Patients are there to be "managed" to be "compliant" - the very vocabulary of the industry betrays its concerns.

[dravidio]

You can check these things by yourself if you are prepared to pay of course. My Sleep Cube provides read outs which can be interpreted in seconds online - and I have an oximeter that I can use to double check what is happening when I sleep. I also know how to get into the clinician menu of the cube so I can adjust pressures. I don't need to involve my GP in this - and s/he has no right to know if I don't want to tell.

[Sparticus]

Bravo!

You can check these things by yourself if you are prepared to pay of course. My Sleep Cube provides read outs which can be interpreted in seconds online - and I have an oximeter that I can use to double check what is happening when I sleep. I also know how to get into the clinician menu of the cube so I can adjust pressures. I don't need to involve my GP in this - and s/he has no right to know if I don't want to tell.

I applaud you, I hope soon to be there with my own equipment and yes I too keep looking at the cube, of course I would love to run a S9 but we cant all have a rolls royce. I have been at this for a year and the big brother known as the NHS wont budge, Im not qualified, I can build a bloody pc in a morning before breakfast inject the mrs and do the school run but Im not qualified to see a chart that says my mask is leaking when I sleep.

I know that this cause of action is not for everyone but for me, its the way I want to go.....

[dravidio]

Good luck Sparticus! I thought all medical records were available if you wanted to see them though. Perhaps I am being naive

[Tigers Fan]

Of course all medical records are available to the individual they concern. However, I very much doubt that the NHS goes to the expense of measuring stats, let alone recording and storing them. The NHS is about treating us and keeping us alive.

Knobs and whistles are for private account and rightly so in my opinion.

TF

[Sparticus]

Of course all medical records are available to the individual they concern. However, I very much doubt that the NHS goes to the expense of measuring stats, let alone recording and storing them. The NHS is about treating us and keeping us alive.

Knobs and whistles are for private account and rightly so in my opinion.

TF

The NHS is not treating me or keeping me alive, I was asked how I felt, please come back in 18 months, no machine checks, no downloads of Data! Nothing! Wheres the treatment? or the checks of AHI or even mask leaks? I take it then unless I go private, again. Im not going to know what the hell is happening to me? what my readings are?

If I was diabetic would I still be left in the dark?

[Tigers Fan]

Jayzus H Cake!

Based on the quote in dravidio's post of 19th April in this thread, I can only guess that Sparticus' clinic is dismissive of him. The fairly complete lack of understanding he demonstrates must be hard to deal with, especially if he goes in banging on about his rights and his fights!

Elsewhere, I read from patients that his clinic (Edinburgh, if I remember correctly from his early posts) is staffed by very helpful and obliging people.

Blood saturation levels from a CPAP, eh?

Here are some simple questions to ask upon waking and to help you know if your therapy is effective, Sparticus.

1. Are you awake? Good, you are also alive so your readings have not jeopardised your health.

2. How do you feel? Refreshed? Good, your therapy is working. Tired after eight hours sleep? Not good - if this happens a lot get yourself re-referred.

TF

[Sparticus]

Firstly......

Oh Im sorry but your unaware that you go to 2 different clinics in Edinburgh the first one softens you up then the second one sticks the boot in, my advise is if you havent been to my clinic then you dont know diddly. Also I do apologise for getting my facts wrong there Doc, its something that us normal people do from time to time.
When I come across another problem with MS or CB that I have sort everyday I will contact you for advise, many thanks......

[James @ Intus]

It sure would be nice to be in FULL control but you have to remeber that the NHS is a public health service. They have a finite amount of tax payer money available to spend on an almost infinite number of people with an even larger number of diseases. It quickly boils down to giving the minimum standards of care to make sure patients get by OK.

I agree with TF in that if you demand more, that's where the private health insurance or private route comes in.

With the cuts being applied in the coming years, you can probably only expect less service instead of more. Luckily, with card readers, oximeters etc. being available quite readily, you do in fact have access to a lot of info about your therapy.