The ideal sleep clinic!

[Alleycat]

In response to a number of posts of late it got me thinking about the ideal clinic and what is my ideal may not be everyone's. So here's some ideas (mostly already at my clinic) but wondered what others think and if I've missed anything. Which bits do you think are most important?

1. Regular reviews until established on treatment and then yearly reviews after with the nurse showing you the data and offering advice around any difficulties and refitting of new masks if necessary
2. A wide range of mask options with latest offerings from the major companies.
3. A range of machine +/- humidifiers to suit individual needs.
4. A telephone helpline for advice and to request replacement parts / filters/ masks etc. (And postage of said items)
5. An email address for support as in 4.
6. A weekly drop-in clinic to deal with difficulties (no appointment necessary)
7. A user support group meeting 2-3 times a year with the consultant or people like BLF or SATA sharing information

[Sleep2Snore]

I have found that if you want to run a support group most hospitals will help, but they don't have the time to run it.
We did try one up here but people would turn up a couple of times and then not bother. Maybe part of the problem is the main body was down south.
I would have liked to have had one set up just to exchange ideas locally within 50 miles as the crow flies but it just didn't happen.
In an ideal world you should get everything explained on your first day with a machine and time should be taken to explain about mask fitting and other problems. But they are busy and of they went through everything it would be information overload anyway.

[DeeNJai]

The Ideal Sleep Clinic

What would help all patients would be to give everyone the software that they can use to monitor their data from their machines. This would help the patient to monitor their treatment and also see if they are compliant with their treatment. Also know when to contact the clinic if there is a problem with the data and treatment. My clinic has a equipment phone number and also an email. they suggest that you use the email as it is quicker than leaving a massage on the answerphone.
Dee

[Poppy56]

My sleep clinic has a brand new website, most of which is taken up by a list of prices for non NHS patients - a sign of things to come?

[Sparticus]

All comes down to money, I found that our Edinburgh clinic was good but as I now look after myself I found that the best equipment to check my AHI is me. I spent a fortune on gadgets that have sat in the draw for a few years now. I found if its working why mess with it and if anything changes I know as soon as I am awake if there are problems. Clinics are dealing with new peeps every month and I believe it runs into the hundreds but if I need anything a quick call and its sent out.

I believe that these forums are an Ideal way to self-teach yourself everything about Sleep Apnea with the added bonus that if I ever do get stuck my clinic are only a phone call away. My ideal clinic would be an on-line clinic (National)

[Alleycat]

Would you worry less about how often you are seen if you knew your clinic was monitoting you remotely, by your machine data being sent to the cloud? How often ideally would you like to be seen?

[Aspasia]

I would love remote monitoring, Alleycat! I live 280 miles from my nearest sleep clinic and it is a royal pain whenever I have an appointment there.

There seems no good reason why basic sleep tests can't be managed by a GP. All it would need is training for one nurse. Then, when SA was suspected, the sleep clinic could post a monitoring machine to the GPs surgery, and the nurse could fit it and instruct the patient in how to use it, which is all the clinic would do anyway. The patient could then return the machine to the GP, and it would be posted back to the sleep clinic for the data to be downloaded and analysed, and the machine maintained for the next patient. This would have the added advantage that the patient would be sleeping in their own bed, so there is more chance of a decent amount of good data.

If not remote monitoring, why not follow-up appointments via video conferencing or by telephone, for those who want it? (Me! Me!) This, combined with more regular monitoring of the data on the SD card (either returning them by post or emailing the data) should be perfectly adequate for many people. Equipment could be exchanged by post for maintenance, so the clinic would send out a freshly maintained machine and then the patient would return the old one in the same packaging for deep cleaning and maintenance.

I would also hold out for improved data collection capabilities for NHS-provided CPAP machines. For those of us with more than one chronic condition, it can be difficult to know whether we are exhausted because something about the position we are sleeping in - or the equipment itself - is increasing apnoeas, or whether we are exhausted because our other conditions/s are flaring up and need treatment. To complicate this picture, inadequately treated SA could, in itself, trigger a flare-up n another condition, so if you try a wait-and-see approach, it could end up being both. When the only data on the SD card is compliance data, there is no way to eliminate apnoeas as a probable cause. We then have no idea whether we just need to address a leak problem, or whether we need an increase or change in meds for the other problem - and neither does our GP or consultant. In the worst-case scenario, we could end up on additional meds (and all their lovely side-effects) to treat our other condition, and still not have resolved a CPAP problem because we are unaware of it.

...in an ideal world where money is no object...

[dravidio]

Let's remember how fortunate we are to have the NHS

In most countries of the world - we would have to pay for treatment, and medical equipment. This is not to say that the NHS should not (within its budgetary constraints) aim to provide the best possible service for people who cannot afford the cost of private treatment and equipment. However we have to recognise limitations.

I can afford to pay for the equipment I need - so I'm lucky - and I think that by paying for some medical services I am not taking advantage of a system that caters for people who need it, but really can't afford it. I do use the NHS, but if things are quicker or better I will go private...