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Feeling Abandoned by the Sleep Clinic
I was diagnosed with OSA back in 2017 following having used the Hope 2 Sleep diagnostic home thing. (Thank you!).
Since being diagnosed with OSA I've also been diagnosed with hypertension and am being treated for this with medication.
I was given a Philips Respironics RemStar Auto A Flex (System One). Since then I was lucky enough to have a couple of reviews before Covid set in. But since then I've not been seen, so that's around 4 years.
My machine isn't hooked up to Bluetooth or anything so the clinic won't be getting any of my readings so I've no idea whether the pressure on my machine is still appropriate for me.
In addition, I don't feel at all comfortable about using a machine that may have cancerous implications due to foam particles. (I believe lawsuits are taking place in the US around this.)
In short, I don't know if I'm doing myself more harm using the machine than not.
I know that the NHS is under incredible pressure and that the pandemic has caused a backlog at sleep clinics, but I just don't know what to do for the best.
Is anyone else in the same boat? Does anyone have any advice?
Thank you.
Views: 233
Replies to This Discussion
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Permalink Reply by Ejog1 on
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I can’t offer any advice but I sympathise with the feeling of being abandoned.
I got given my current Resmed machine about 8 or 9 years ago by my clinic, and I think it’s overdue replacement, but I can’t get a reply from my clinic, and short of doorstopping them, I’m not sure what to do.
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Permalink Reply by Jonathan on
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Hello
It seems you can check with Philips Respironics whether your machine is affected by the recall
https://www.philipssrcupdate.expertinquiry.com/?ulang=en
Hopefully it's not one of the problem machines, and at least you will know that your machine is not doing more harm than good. You don't say how you've tried to get in touch with your sleep clinic, but if you have a sympathetic GP they might be able to help.
I've been using CPAP for 15+ years, and gone through 2 rounds of open heart surgery, and various medication changes. In all that time, my pressure setting hasn't really changed.
All the best.
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I'm sorry to hear that. I emailed Kath about this and she was very helpful. She advised me to get in touch with my sleep clinic and I have had a reply from them. I so hope that you get a response soon.
Ejog1 said:I can’t offer any advice but I sympathise with the feeling of being abandoned.
I got given my current Resmed machine about 8 or 9 years ago by my clinic, and I think it’s overdue replacement, but I can’t get a reply from my clinic, and short of doorstopping them, I’m not sure what to do.
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Yes, my machine is affected. Seems I slipped through the net. I'm now on the sleep clinic's radar again and am hopeful that this will be sorted soon. Thanks for your reply and stay well.
Jonathan said:Hello
It seems you can check with Philips Respironics whether your machine is affected by the recall
https://www.philipssrcupdate.expertinquiry.com/?ulang=en
Hopefully it's not one of the problem machines, and at least you will know that your machine is not doing more harm than good. You don't say how you've tried to get in touch with your sleep clinic, but if you have a sympathetic GP they might be able to help.
I've been using CPAP for 15+ years, and gone through 2 rounds of open heart surgery, and various medication changes. In all that time, my pressure setting hasn't really changed.
All the best.
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Thanks.
Good news for me today, my clinic did finally reply to me and they’re giving me a new machine.
The person I spoke to was super helpful.
The NHS clinics are great when you’re able to speak to them, but they seem to be completely overwhelmed.
I think it’s inevitable as the number of treatments increase along with the number of people needing them.Anyway, I’ve been lucky.
I hope you are just as lucky.
Jenny Wren said:I'm sorry to hear that. I emailed Kath about this and she was very helpful. She advised me to get in touch with my sleep clinic and I have had a reply from them. I so hope that you get a response soon.
Ejog1 said:I can’t offer any advice but I sympathise with the feeling of being abandoned.
I got given my current Resmed machine about 8 or 9 years ago by my clinic, and I think it’s overdue replacement, but I can’t get a reply from my clinic, and short of doorstopping them, I’m not sure what to do.
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Good news. I've got lucky too! I can collect a new machine next week. It's been really helpful to 'speak' to people here and to Kath. It alerted me to the fact that I'd slipped through the net. The clinic was very apologetic and now all is well.
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