Sleep Clinic

grannyneedsanap Do hope your journey with a cpap machine is successful.
Mine has been, although I still dislike the idea of using it every night - I have moved forward for the early weeks when I did use it, but hated it. Even had to cover it over during the daytime, so I would not see it whenever I went into my bedroom.
The therapy is working for me. I have gained so many hours in each day - I had been down to something like 5 or 6 functioning hours in each 24. Had given up some of my groups, etc.etc. I would fall asleep even sitting at a committee meeting!
would not say I actually 'love' that machine yet, but no longer hate it. We are on good terms now......and I usually get a good nights sleep using it. I have purchased covers for the hose and for the straps on my head, cpap cleaners for the mask and brushes for when I wash the two hoses.

In a few weeks time, I am going away for three nights (being taken to London to visit some of my friends there), staying at Premier Inn. Be the first time I have needed to take this machine anywhere to use other than home.

When I did see the Consultant for my review after usage for 7 weeks, he told me (looking at them on his computer), my results were very good, and he would not need to see me again for three years (which I thought, given my current age, was a little optimistic). Can email the sleep clinic if I have any specific queries.

I (rather foolishly) joined facebook cpap users groups. As with any other similar groups I have looked into, people who use these tend to be those who have problems with this therapy, which does give a very distorted view of it. I think most people put onto CPAP machines by NHS find them annoying but very successful for their wellbeing. They do not write on those fb sites.

Did make me have a deep appreciation of our NHS (even in its very cut down form these days), when I read from CPAP users in the USA, how much they have to pay for their machines, and each and any replacement parts for them. Can't pay - then no machine, and untreated sleep apnoea can cause heart attacks, strokes and death.

Franbern, I've just this week received my machine and here in Kent it was quite efficient.

I was referred to cardiology a year ago as I had high blood pressure but low heart rate warnings popping up on my watch. various tests and 6 months later, I attended an appointment for the results (I reckoned if it was an issue I'd have been called sooner!) and as an aside at the end of the appointment I was asked if I snored.... I was referred to the sleep clinic and was given a monitor to wear overnight at home.

I was then given a telephone appointment mid November to discuss the results and was told I had severe sleep apnea and would benefit from a CPAP machine.

I was then given 3 appointments for the Respiratory department ~ one to be issued with the machine, one for a follow up phone appointment to see how I'm doing, and then the third to return with the equipment, but not sure why other than to assess it?

I've used it for the past week, but no great changes as I was never falling asleep in the daytime.... unless I lay down! I guess I feel a bit brighter, so that's good!

For me, from the question being asked to getting the machine, it's been 6 months total. So not as bad as it might have been.

I'd happily join you in a CPAP Support Group!

M0nica

Good efficient systems and ways of doing things are what managers are there to do and do not cost money, they save it.

People constantly making excuses why things are not done properly cost us money.

Your last sentence, I couldn’t agree more.
This attitude that the majority of the population has hasn’t helped the abysmal ( sometimes dangerous) treatment that we have come to accept.

Good efficient systems and ways of doing things are what managers are there to do and do not cost money, they save it.

People constantly making excuses why things are not done properly cost us money.

I agree Franbern.
I was given a test to do at home recently by a nurse practitioner, even though I had asked for a doctor.
She prescribed me the test which I collected from the pharmacy. She gave me no instructions.
The instructions in the pack were vague and the web-site given did not correspond to the instructions in the pack.
I then contacted the centre I should have sent the test to and she said just to do the test and send it to them in the envelope provided. I didn't need the web-site.
When I opened the test it said I should stop taking my medication for two weeks before doing the test- no one had mentioned this!
I went back to the pharmacy and she explained it in more detail.
The clinic I was to send the test to then rang me twice to see if I needed more info and I asked for some clarity regarding the medication I was on.
She said exactly the same as the pharmacist and was pleased when I told her this- she also said that she realised the messaging was unclear and she would suggest amending it to make it easier for patients.
Despite what seemed incompetence sometimes people are unaware of the issues we face, but when we make contact with the people in charge things can get done.
This isn't the first time a small communication has brought about changes in the system. Sometimes patients don't realise how much they can effect those changes themselves.

Oh Monica - that is very harsh. It was nothing to do with convenience of anyone, that caused so much problems for me with regard to my travel. it was NOT having enough drivers and crew for their ambulances.

One of the major reasons why this sort of thing occurs and appointments get cancelled as that there is no spare money for any replacement staff when any of them are off sick, etc.

The Senior and not-so-senior Managers that I know involved in NHS Work are themselves so very overworked and under so much stress from this. Many work almost twice the number of hours they actually get paid for - and do so on an on=going basis, day and after day, week after week - as this is the only way they can possibly get through their workload.

Managers have been paired down to dangerous levels, without these people who organise and arrange things, the system quickly grinds to a total hault.

I know it is fashionable to blame everything on Managers (too many Chiefs, not enough Indians - people say), but those people would not be able to describe what Managers actually do.......and how many of them have been got rid off, and then their jobs joined up, so what was being done on a 36 hour a week by a Managers- now have these as a combined job, trying to be covered by one person, where previously there were two or three or more.

So, these Managers are so overworked, so stressed that they either leave or have a breakdown - and then their work is just shared around the remaining ones causing even further problems.

The whole of the NHS is totally and completely under-funded, from top to bottom, We need more health Care Workers junior and senior nurses, Doctors, Social Workers, OT's. SLT. physios, etc.etc. Until people start to understand the need for slightly higher taxes to go directly to NHS then we will just have to put up with a third rate system for those of us who are unable to afford private health care.

Another example of the sheer adminstrative incompetence of the NHS. They do not need more money, they need a good analysis of their systems and design their systems around their patients and not round the convenience of pen-pushers.

I am bumping this up and also updating on my usage of my CPAP machine after seven weeks.
Yesterday I attended BRI for my 'assessment'. In the meanwhile I had been told by a friend of 'hospital transport', door to door for physically disabled and elderly people like me. Sounded wonderful and I booked it for an appointment for 11.00. They said I would be collected around 9.00 am. I was ready in wheelchair, at front door of flats by that time. Four phone calls to them later, being told 'transport was on its way', three phone calls from them and two hours late ambulance turned up for me. Meanwhile I was in tears and panicking. Transport did contact sleep clinic to say my extreme lateness was their fault and the Consultant said he would see me when I got there.

The actual consultancy was excellent. Over past seven weeks I have struggled with a love/hate relationship with this machine. Usage of it has had a wonderful result - it has given me back my life. I was down to a maximum of five functioning hours in each 24, would fall asleep in the middle of meetings and always felt dreadful. Felt I had very little time left for me. CPAP machine works for me. Cannot believe how different I now feel - all day fully awake, and how different I look. Yet, I detest this machine and have to cover it over during daytime, so I do not 'see' it each time I go ino my bedroom!!!!

This machine 'magically' sends my usage results direct to hospital computers and Consultant looked at these and told me 'I was Star'. Excellent results. Made me feel really good. No need for any further appointment, for me to contact them if I need to. He even suggested that I take home with me a spare mask, so I have one for when I need it. I will now learn to love my cpap machine (I hope)!1!!

Transport had contacted clinic to say my return journey was delayed to 2.30. I decided to go to canteen and get some lunch, and returned to clinic waiting room at 2.15. At 2.40 clinic phoned transport and got told further delay, for about 45 minutes. Did arrive at 3.30 then a lot of waiting round for another patient and I was finally dropped at my flats at 5.00 pm. A long, and emotional draining day. Do not think I will use this hospital transport again.

During these weeks, I had put in a complaint to PALS regarding me being sent appointments to collect one day and return 48 hours a piece of machinery. When I was sent two further appointments for testing my oximeter levels, someone must have read my complaint as these were followed by a phone call from hospital saying they would send this little box by Courier direct to my home and I could return it at my appointment.

Noticed that a couple of other people who read my original post mentioned they used CPAP machines. Would really like to have a thread for us where we can discuss our experiences with these and exchange information, etc.

Will see if anyone is interested in a self-support group for this would work.

Yesterday afternoon I attended my CPAP clinic, where along with five other patients, we were taught to use and care for our Cpap machine. As Thursdays are a difficult day for my daughter to take off work, I said I would use public transport, took train in my wheelchair to Temple Meads = excellent as usuall with Passenger Assistance, then taxi from station to BRI. All taxis there are properly wheelchair complaint. Simple ramp into their 'boot' chair, with me in it carefully strapped in, etc. Great care, cost £9. Whole journey from when I left my flat just under one and a half hours.

Found my a little overwhelmed at training. Wished I did have my daughter there, but left that clinic just after 3 pm, with machine thinking that at least I would be home before rush hour. Hospital reception had 'run out' of schedules for the bus to station, and nobody told me how close the bus station was to BRI - I could have got to it in less than ten minutes in my lovely electric wheelchair, so I asked reception to get me a taxi. Me sitting in that chair all the while. 25 minutes later taxi turned up, led me out to where he had parked, and then expected me to get in taxi and somehow magic the chair in there as well as he told me he is not permitted to lift it into his boot!!!!! Back to reception, they phoned taxi firm again, I asked if they could use the station company, No, they use a different one!!! Long phone call saying I need a wheelchair compliant one, another 20.25 minutes wait, Great big van type thing which had a very, very steep ramp into his back seats, my wheelchair tipped at top of this ramp backwards. Shook me. No strapping in, either for chair or for me. Off he went. Got to station and then he asked me for £18. No I said I would only pay same as I had on first journey. Gave him my name and address and told him to sue me for any more.

So I arrive at station in the middle of rushhour. Thank goodness for Passenger assistance, who as always were wonderful, got me on next train back and I finally arrived back in my flat three and a half hours after I had left the clinic!!!

On the plus side, I made myself - although totally exhausted last night use the machine. Did still to get up for loo, a couple of time, but directly back to sleep, but undoubtedly it gave me the best nights sleep I have had for years. Feel so very different this morning, and did not need my usual after brekkie sleep. Have managed to get apart to wash it all as shown. Been told it us about a fortnight to feel full effect, but I really think this is going to work for me.

|Perhaps we need a special group of CPAP users to exchange advice and information on here. It is very daunting being presented with this large contraption and so much told to us in one hour of joint training. I was by far the oldest person there, the only other one near my age was accompanied by carer from his care home, who was the one actually being trained for him. Just hope my elderly brain did take it all in and I can continue to use this now.

As for BRI, whereas there medical practices might be excellent, I am more than unimpressed with their skills at dealing with us patients non-clinically. In future will probably get a bus all the way from WsM from nearby bus interchange to the bus station just down road to BRI at a total cost of NIL and not reliant on taxis or receptionists, etc.

Anyone reading this who uses a cpap machine, any advice you can give to me would be more than gratefully received.

Secondwind

I have to travel to the BRI for this and had to do exactly as you did! I catch the train to Bristol Temple Meads. The free shuttle bus from the station that I used to catch now only runs a very limited service, so I had to take a taxi last time. If your mobility is OK, a very helpful person at the BRI told me that the bus station is quite close to the hospital and that buses run to the railway station from there, so that was how I made my way back. The bus stop from the railway station to get to the BRI, via the short walk from the bus station, is down on the main road. Cross the road and it’s easy to see once you’re there and there are generally plenty of people around to ask. I don’t know how long the direct trains take from Weston to Bristol, but this might help you at the Bristol end.

This is the problem when specialised care is concentrated in a hub. I always make clinics aware that I can’t make early appointments if I have to travel a distance.

Google says that the National Express Coach from Weston to Victoria stops 5 mins walk from BRI and takes 50 mins. But around my home you can ask for patient transport and an appointment that fits into that service. Often takes longer but it is a home to hospital service and you get to travel with other outpatients.

I had to go for a pre-op assessment the other day, an hour and a quarter on the bus both ways. It turned out that all they needed was to give me an MRSA swab. I did wonder why my local pharmacy, local hospital or GP couldn't have done this - and it would probably have been cheaper than getting it done in the hospital.

I have to travel to the BRI for this and had to do exactly as you did! I catch the train to Bristol Temple Meads. The free shuttle bus from the station that I used to catch now only runs a very limited service, so I had to take a taxi last time. If your mobility is OK, a very helpful person at the BRI told me that the bus station is quite close to the hospital and that buses run to the railway station from there, so that was how I made my way back. The bus stop from the railway station to get to the BRI, via the short walk from the bus station, is down on the main road. Cross the road and it’s easy to see once you’re there and there are generally plenty of people around to ask. I don’t know how long the direct trains take from Weston to Bristol, but this might help you at the Bristol end.

This is the problem when specialised care is concentrated in a hub. I always make clinics aware that I can’t make early appointments if I have to travel a distance.

I had a sleepover with a Cpap machine and found it very difficult as I’m a side or front sleeper. The nhs made me a dental splint which worked perfectly bringing my lower jaw forward but I had to return regularly for adjustment. Now a clever anaesthetist in the sleep clinic offered me a choice of 3 . One of which is self adjustable . My dentist can supply and fit the same model for £300 when I can no longer adjust it. It does help that I’ve lost weight too.
Remember you have to inform the DVLA if you have sleep apnoea.

My husband suffers with this and the sleep clinic is useless - very understaffed. Promises of phoning him (only while he’s at work) so has to take the ma hike in only for them not to call. He’s had this since before Covid and never had a follow up

Can sympathise fully. Waited 64 weeks for eye appointment. Referred by optician who tried twice to clear tear duct. At appointment saw Dr, placed chin on equipment, declared yes can be fixed. Will take a two minute procedure. Saw Dr for whole two minutes! Have to wait likely another 64 weeks for procedure. Took me an hour to drive and find parking. Like you Franbern, feel there has to be a better system.

Our NHS works on the principle of ‘ Occam’s Razor’: that is, clinicians look for the most likely cause of a problem first. For example, a family member suffered from TLoC (temporary loss of consciousness). Visit GP and the ECG is normal so best we change your hypertension medicine: rinse and repeat. This went on for 4 years. She now has a pacemaker.

Those who defend the NHS’ approach do so on the basis that the most likely cause of a problem is more often than not correct. It does make the diagnose of some complex conditions a time consuming process.

Other countries such as Australia have a significantly higher ratio of scanners per 100K of population. The downside of this approach is that the greater use of scans reveals a greater number of incidental findings.

I hope by now you have a date to see a specialist - thanks for the update.

Just to continue this thread. Have now received the results of that wrist contraption from Respitory COnsultant

Evidently categorised as either Mild, Moderate or Severe. Mine has come back as severe.
Due to collect a CPAP in a few weeks time.

However, it is two years ago, I began telling Doctors and Practice Nurses at my GP about my excessive tiredness. None of them ever suggested or looked into Sleep Apnoea.

It was my two eldest daughters who diagnosed this for me - Note I have it =Severe. First two times I tried to get a referral it was refused, they claimed because my BMI was too high, although nobody looking at me would consider me fat or even actually overweight.

It was only the insistence of the Respitory Nurse I see at my GP clinic that got me this appointment. When I read of the dangers of severe Sleep Apnoea, I am feeling quite angry.

I was seen immediately as I was having a pre-op and said I thought I might have sleep apnoea.Having worn the wrist contraption and been diagnosed I was given an epidural type anaesthetic (can’t remember what it was called!) instead of a general for the operation . I generally find I can wear the CPAP machine for about 4 - 5 hours a night as I am a poor sleeper and it does help a lot.

My D and GD both have sleep apnea, my GD worse than her mother.
Both were seen quite quickly by W Sussex hospitals.
Both had night stays in the sleep clinic and were fitted with CPAP equipment and both are better than before.
I am so pleased they live where they do.

You can get a train from Weston & there's a free hospital shuttle bus - but it's very time-consuming & I agree you should be able to return the gadget to WGH.
I got taken off the waiting list by that clinic - but they didn't inform me or my GP. By the time I found out & my GP got me re-instated, I'd been waiting 2 years. I then had to wait another 6 months, and I did have sleep apnoea when I was eventually seen.
The service once you are diagnosed & have the machine is better than pre-diagnosis though, & the treatment does really improve daytime sleepiness.

Franbern I can understand how you feel and the BRI is a nightmare to get to, I remember doing a course there years ago. Presumably the Sleep Clinic is held there but if you are just collecting something I can't see why they cannot deliver it to Weston Hospital and collect it from there as there must be regular deliveries between those two hospitals.

Can you phone up and ask?

I was sent for a pre-op assessment at a hospital 40 miles away, had to be there at 8.00am. A few weeks later, at another pre-op appointment at yet another hospital, the nurse practitioner said I could have phoned and made another appointment at a nearer hospital. The operation itself was at a third hospital!!

Hid appointment came later by post.
Forgot to say.

BTW I called and asked "do you really need this 1st thing and will he see anyone on that visit?
The answer was they needed to clean and sterilise for the next person - as it would go out again the next day. This cleaning would be done by x time so "by all means bring it before then"

We did the same with another gadget.
That one was dropped off quite late - I'm guessing 7 or 8 pm.

It's worth calling to ask.
It may not really be needed till after work hours.

I feel for you Franbern. A total lack of consideration for you and others who will have the same experience. Where is their common sense?
I feel that the care given by the Sleep Clinics in recent years has declined at least in my experience. I have a CPAP machine and used to be seen regularly by a sleep nurse.These were then replaced by physiotherapists (???) and now it is all done remotely with just an answer phone and no opportunity to speak to anyone. A new mask used to be sent yearly. Now we have to order remotely via said answer phone. Just last week l ordered a new mask and the wrong model was sent which is non compatible with my machine. I ordered F30 and was sent F40 ! Back to answerphone but no response so far!
I think you need to be very firm with them Franbern so that you know exactly what is going on.