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Been declined Nhs treatment
Hi.
I did a home sleep study privately which showed I have moderate sleep apnoea. That wasn’t really a surprise as I snore terribly and my partner tells me that I stop breathing. According to the results I stop breathing 21 times an hour.
For background, my dad has sleep apnoea and a range of cardiac and blood pressure problems that he has been told are likely related. I don’t have any other issues and I am not tired during the day.
My gp referred me but has rang today to say the referral is rejected due to the fact I am not tired during the day. He’s very unhappy with this and is going to go back to them to appeal but says that ultimately it may be out of his hands.
I’m aware that I can buy cpap privately but I’m concerned about the lack of long term follow up, given that I’m only 38 and I want to avoid the associated conditions which my dad has. I’m really worried about what to do from this point and would be grateful for any advice.
Thanks.
Views: 808
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Hi Natalie
This frustration is more common than you think as there are still some clinics that accept referrals based on the Epworth Sleepiness Score. The current NICE guidelines (due to be updated this August) state that patients with SYMPTOMATIC sleep apnoea may be offered CPAP https://cks.nice.org.uk/topics/obstructive-sleep-apnoea-syndrome/ma...
The most common symptom of sleep apnoea is daytime sleepiness, but there are people who don't particularly suffer from this, but there again there are others who don't feel tired, but once they get on CPAP and start to feel better they often realise they were tired after all, but due to the sleep apnoea being untreated for so long they think what they feel is actually 'normal.'
As you'll be aware with your father having sleep apnoea, it is a risk factor for many other medical conditions - heart attacks and strokes being the most common https://www.hope2sleep.co.uk/sleep-apnoea-information
My advice at this stage would to get your GP to appeal against this decision to the clinic, and state you are symptomatic even though not tired - list the other symptoms as well whatever they are, such as disturbed sleep for your partner as he witnesses your snoring and worries about you stopping breathing, plus any other symptoms or medical conditions you have. Also tell them your own father has sleep apnoea.
The hospital may not accept your private diagnosis and insist on a repeat sleep study (some do and some don't).
Yes, you're correct, now you have a diagnosis you can purchase CPAP, and if you did want to take this route we can certainly help with this as the charity do sell CPAP with a diagnosis or prescription. However, we'd rather hear that you were treated by an NHS sleep clinic.
Don't hesitate to contact us at the charity if you need further support on the charity line 0300 102 9711 or email support@hope2sleep.co.uk and you can send us the sleep study results to have a look at as I don't think we did the private sleep study for you.
Good luck!
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Permalink Reply by Natalie Gray on
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Hi,
Thank you for your reply. That is so frustrating. My partner would certainly disagree that I’m asymptomatic! I will wait and hear what my gp says once he has heard back from them again.
Many thanks
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Hi,
I had the same problem in that I was not a priority to be screened because my Epworth Score was low but was an epic snorer! I waited 26 months before seeing a specialist.
You have an option to be preferred to another “provider” or hospital if you have choices near by. See https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-...
You’re GP could also refer you to a remote screening and sleep therapy management service such as the one run by Philips Respironics https://www.philips.co.uk/healthcare/medical-specialties/sleep-apne...
I have finally been tested and shown to have a high AHI, but have now joined a waiting list for CPAP. Fortunately I am in a position to purchase my own AUTO CPAP and now a couple of nights in with great results.
Hope you get sorted.
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I had a private assessment so I already know that I have a moderate AHI. I don’t need another assessment but I think the hospital will probably want me to. Ideally I’d just join a list for cpap as recommended on my report but I don’t think it works like that and I’m not really in a position to be able to pay privately for it.
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If no other hospital, I am sure the Philips service is CQC and NHS registered. Your GP could refer if the local CCG approves funding.
Hope you get sorted.
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Philips don't have a service at the moment Michael but hoping to set it up again soon.
Michael Jones said:If no other hospital, I am sure the Philips service is CQC and NHS registered. Your GP could refer if the local CCG approves funding.
Hope you get sorted.
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So I’ve been turned down again. I asked about a different Trust and was told that they would turn me down too as I’m not tired during the day. He’s right, I’m not tired during the day however I don’t fancy the associated cardiac conditions which my dad has got due to sleep apnoea either! Apparently my only option is to go private now so that’s what I’m doing. So annoying as surely 40+ years of blood pressure treatment etc are going to cost the Nhs much more than supplying a one off cpap machine.
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i'm rather late to the conversation, but i was in almost the same situation.
I did manage to get an nhs sleep study, but my numbers were under their threshold. Hardly surprising as i didn't actually sleep during the night. So I got a private home sleep study done - which was basically a wrist worn o2 monitor overnight. The resultant graph showing my o2 levels spiking down to 50-60% was enough to convince my GP to send me straight back to the sleep clinic, and convince them to give me a cpap machine. I was also very low on the Epworth scale and snored enough to drive my husband into a different bedroom up the other end of the house, and he could still hear me. (we are re-united now!)
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