Sleep Clinics - What is your experience?

[Sleeplessinkent]

I was fitted with a CPAC machine 6 months ago and I have struggled ever since.

It is interesting to pick up the threads off this forum which suggest I should speak to my clinic and ask them to look at the settings on the machine, new masks and so forth.

It is actually impossible to speak directly to my clinic since all calls divert to an answering machine. Calls are invariably answered a few days later.

The clinic is very good at throwing email questionnaires at me but not so good at responding if my ongoing treatment is, it would seem, failing.

I have private insurance.

More recently, I sent the clinic an email (the only way of communication) in which I suggested it might be appropriate if I had another overnight study. I have yet to receive a reply.

Incidentally, my overnight CPAC trial took place in a room where the door was propped open so that the nurse could here my snoring / sleeping and as necessary adjust the settings on the machine. Given the fact that a patient opposite had more demanding needs, my own overnight stay was a disaster.

What are the experiences or expectations of other users regarding their initial study and ongoing support from their sleep clinics?

[Bullie4me]

At Arms length

Dear SleeplessinKent

A similiar story I'm afraid in west sussex - It appears the patient focussed approach and accessibility is not high on the agenda. On initial consulation I was provided a lung capacity test with an overnight finger monitor and returned the next day for evaluation. The results were a big shock, even though I was expecting a poor result, when my 'events' of over 30 in a 30second period were humourously dismissed as being "off the scale" and before I had absorbed this information I was straight into "here is your machine", a rapid explaination and a stream of information i could hardly keep up with,told to return in a month. It appears I was on my own.
Having been informed if I had any worries, "don't bother ringing up, I never get round to my messages, email me instead" So after a few days needing a bit of advice and reassurance I did just that. I'm still waiting for relpy 3 months later!
As you experienced, a call to arrange an appointment is organised via another department and messages diverted to an answer machine with no feedback of receipt, just a 7 day delay and a written appointment sent out.
A 3month check up was just as rewarding(not) Assured everything was going fine, provided with a few replacements and an alternative mask to try. A negative response to a few tentative questions and almost pushed out the door. Perhaps a few counselling training sessions would'n't go amiss. If I treated my clients with the same attitude I would very soon be taken to task. What ever happened to respect, dignity and valueing people as individuals? Whilst I am fortunate enough to seek information and evaluate my progress independently, I feel for those less able.
This forum has been a lifeline and has provided me far more than the local PCT in regard to information, advice and reassurance that someone out there is willing to support others.
Well moan over and good luck, just glad I didn't have to endure an overnight in hospital.
regards Bullie4me.

[mintra]

Very good service but you do not need them

The service I got from the national health Wythenshawe clinic Manchester was exceptionally good. It is clear that they are processing a lot of patents, and on my first four visits I saw a different doctor or technician every time.

However each one had something different and positive to offer, and they were all clearly obsessed with their jobs (one even came out of retirement as he believed in what he was doing).

I dont think with modern equipment the overnight sessions are as important, they just gave me a unit that cliped on my finger that I took home.

I did not like my first CPAP machine so they changed it for and better one, I wanted a better one still, and I asked for it and they gave it to me.

In the end I have found the clinicians menu and set the machine in its most basic mode, like the first machine they gave me, the most basic systems can be better than the fancy ones.

However what I have learnt from them all is that there is no magic it is all very simple. You can, if you have a machine take control of it yourself learn from these forums.

I would not be inclined to go private as they do it for the money, so you will not get best service, but don't blame them they have to feed themselves, and they may not be happy in their jobs. You don't need them just believe you can make it work.

If you have apnea it is worth the effort, if you don't have it then the machine will have no value. Make your mind up if you have the apnea use the machine, it really works for me.

John

[Mr Stefan]

Sleep clinics

I too was given a finger monitor rather than an overnight stay for an initial diagnosis but for me this was a plus point as it was natural to sleep in my own bed, but this is where my experiences differ, since been prescribed the CPAP machine, the sleep clinic I visit is great if you phone them with a concern it may go to answerphone if they are busy, but they get right back to you and have always arranged an appointment for the following day, if required, first class service. They have been very understanding and have proved very positive in making the use of CPAP for treatment of OSA, I was given a full briefing in what to expect what I could do to improve the use of the equipment. I have nothing but praise for the personnel and the facilities at the clinic.
Stefan

[jossmax]

For me ( a newbie here ) my experience has been a very positive and supportive one. From seeing the ENT consultant at Doncaster Royal Infirmary for nose and throat problems, he suggested that I may have OSA. The consultant transferred me to the chest consultant who arrange a sleep test ( probe on finger all night).
The results were a classic case of OSA he says. 350 apnoea a night. So then he arrange for the cpap trial which I started yesterday.
The machine I was given was a brand new Resmed S8 autoset spirit ll, with a full face mask as I can't breath through my nose.

so the time scale for all this? 4 weeks. The consultants and staff have been very helpful and supportive at Doncaster Royal Infirmary. I was given two contact numbers in case I need to talk with them. One is for an answer machine if non urgent, the other is a direct number which is manned during opening times.

[Floatyboaty]

I had to overnight in hospital, they have turned an office into a bedroom which although close to, is off the ward.
At 4pm I was completely 'wired up' with sensors all over the place (even in my nose)
The shocking result of this was that I have 90 episodes an hour so it was no wonder I was so sleepy all the time. Life with cpap is great. I was lucky I took to it right away with very little problems but my experience of the clinic and staff mirrors that of Mr Stefan. Nothing but praise for them

[pilewis]

With regards to experience with sleep labs I would like to say how highly I rate mine. I go to a specialist sleep lab in Aintree Hospital in Liverpool and cannot rate them highly enough on support and helpfulness.

Currently it can be awakward for me getting in during the week due to being out the house so early for work and home so late. When I was having problems a few months back i phoned the sleep lab and got a late appointment with a very good technician who also agreed to make an appointment outside of normal hours for a sunday evening.

All the staff at my sleep lab are so polite, friendly and knowledgable and are a credit! It is however, a very small unit and under funded but does a great job with what little resources they have availalbe.