Declined Nhs sleep apnoea treatment

[boredinthouse]

Hi

I did a home sleep apnoea test which confirmed I have moderate sleep apnoea and stop breathing 21 times an hour. I don't have any daytime sleepiness. My gp referred me to the hospital but they have declined the referral because I'm not tired during the day. My gp rang to tell me that he is going to appeal as in his opinion I still need treatment. For background my dad has OSA and a whole host of probably associated conditions. He's diabetic, has had a stroke and has heart failure and AF. The gp is aware of this.

I'm so worried. I know I can buy a machine privately but I'm more concerned about a lack of follow up care. I'm only 38 and it's something that often gets worse as you get older. I assume it's a cost decision but I don't understand how it will be cheaper not to treat when it'll potential result in cardiac and blood pressure conditions in the future.

I'm so worried. If anyone else has OSA and has gone privately for treatment please can you tell me how you did it. I'm not sure where to go if my gp can't get them to change their mind.

Dh was refused at his first appointment- he didn't emphasise how bad he felt despite me telling him he'd underestimated the impact it had.

I eventually dragged him back to the GP and went with him. I insisted on a second opinion, pointig out his sleep apneoa was going to have a significant impact on him as I was so sleep deprived from his snoring, despite him sleeping in another room that I was at risk of murdering him just to get undisturbed sleep. We got a referral to another hospital where the clinic lead laughed when I turned up as well and said that he always knew things were bad when the partner insisted on coming too! Dh walked away from that appointment with the machine which has made a massive difference to him.

The lead did say it was an area where hospitals were giving vastly different services and was very critical of the first hospital. (If you are NE based, try to get a referral to the Freeman. They were fab.)

Oh I didn't think of that, so my gp can refer me to a different trust? Luckily my gp is very supportive so I'll ask him about that if the hospital turn me down again. Not NE based, I'm in the midlands.

Yup- we just asked for a second opinion.

Really think about your symptoms as well- dh said the he didn't fall asleep during the day, completely ignoring the fact that we had 3 small children and he would stay active and not sit down in case he did not off. The rare times he did allow himself to rest during the day he would fall asleep. But because he rarely did it he ticked no on the sheet.

DH has severe OSA, and he gets no followup/support at all, so I wouldn't worry about it if you can afford an initial private appointment and buying a CPAP. This way you get to choose a nice quiet one too - DHs current one is silent, automated (so it increases the pressure if needed) and has an app so he can see exactly what has happened every night

Yup- we just asked for a second opinion.

Really think about your symptoms as well- dh said the he didn't fall asleep during the day, completely ignoring the fact that we had 3 small children and he would stay active and not sit down in case he did not off. The rare times he did allow himself to rest during the day he would fall asleep. But because he rarely did it he ticked no on the sheet.

Yup- we just asked for a second opinion.

Really think about your symptoms as well- dh said the he didn't fall asleep during the day, completely ignoring the fact that we had 3 small children and he would stay active and not sit down in case he did not off. The rare times he did allow himself to rest during the day he would fall asleep. But because he rarely did it he ticked no on the sheet.

@boredinthouse

Oh I didn't think of that, so my gp can refer me to a different trust? Luckily my gp is very supportive so I'll ask him about that if the hospital turn me down again. Not NE based, I'm in the midlands.

Ask for a referral to Queen's Hospital, Burton.

@BobBobBobbing

Yup- we just asked for a second opinion.

Really think about your symptoms as well- dh said the he didn't fall asleep during the day, completely ignoring the fact that we had 3 small children and he would stay active and not sit down in case he did not off. The rare times he did allow himself to rest during the day he would fall asleep. But because he rarely did it he ticked no on the sheet.

I definitely don't nod off during the day at all. Although I have snored all my life so maybe I'm just not aware of what it's like without sleep apnoea.

@CMOTDibbler

DH has severe OSA, and he gets no followup/support at all, so I wouldn't worry about it if you can afford an initial private appointment and buying a CPAP. This way you get to choose a nice quiet one too - DHs current one is silent, automated (so it increases the pressure if needed) and has an app so he can see exactly what has happened every night

Yeah I've been looking at private ones. I've seen a great one but it's about £900. If I go private I need it to be self adjusting as I don't know what pressure I need and I need it to clearly display data so that I can give that to my gp at least

@WhipperSnapperSteve Thank you, that's not too far from me.

@CMOTDibbler, please can I ask the name of your husband's quiet machine and app?

@Sunnyflowers11 its the Resmed Airsense 10. The app is a Resmed one, the data automatically appears on his phone and he can see what pressure it sets, how many apnoeas he's had and so on. I honestly can't believe how quiet it is.
@boredinthouse you really should get a diagnosis before getting a cpap. When I just looked on the resmed site to link their cpap I noticed they have their own clinics now as well which might be cost efficient if you wanted to go private.
Despite his really bad OSA (bad enough that they stopped his sleep study as his oxygen was so low), DH didn't have daytime sleepiness. Like you he'd always snored and they think his body had never known anything else

[quote CMOTDibbler]@Sunnyflowers11 its the Resmed Airsense 10. The app is a Resmed one, the data automatically appears on his phone and he can see what pressure it sets, how many apnoeas he's had and so on. I honestly can't believe how quiet it is.
@boredinthouse you really should get a diagnosis before getting a cpap. When I just looked on the resmed site to link their cpap I noticed they have their own clinics now as well which might be cost efficient if you wanted to go private.
Despite his really bad OSA (bad enough that they stopped his sleep study as his oxygen was so low), DH didn't have daytime sleepiness. Like you he'd always snored and they think his body had never known anything else[/quote]
I do have a diagnosis. Moderate sleep apnoea. I did the sleep study privately but I was hoping to use the nhs for treatment.

Thanks ever so much.

Place marking. I need to come back to this later. I think I have this and would love to know more OP.

@boredinthouse, sorry I misread and thought you'd done an app based one rather than a Dr led home study.

I had a home sleep study for 2 nights and was genuinely shocked it didnt show sleep apnea apparently. I have chronic fatigue and was hoping this would explain it.

How have people done the sleep study? I think I need to do one but I don't k is where to start.

Do you have a partner? And if so did they have to complete anything as part of the assessment? My DH had the tests (a number of years ago now) which also concluded a moderate apnoea. We were told that on the impact on him alone they wouldn't usually pursue treatment, however the information I had shared about the impact it was having on me tipped the balance. Might be another angle for you to come at it from?

@MrsMoose0

Do you have a partner? And if so did they have to complete anything as part of the assessment? My DH had the tests (a number of years ago now) which also concluded a moderate apnoea. We were told that on the impact on him alone they wouldn't usually pursue treatment, however the information I had shared about the impact it was having on me tipped the balance. Might be another angle for you to come at it from?

Yes he had to fill in a questionnaire about the impact on him. My snoring is awful. I used to get bullied on school trips by the other kids and my mum used to say she couldn't here the tv downstairs when I was asleep. They measured the level of my snoring and it was between 60 and 72 decibels

@Scrumptiousbears

How have people done the sleep study? I think I need to do one but I don't k is where to start.

I did mine through a company called sleep test. They send the equipment out, you do the test and send it back. Two days later they emailed me the report.