Hi,

Is anybody else out there going to the Scottish Association for Sleep Apnoea AGM and Conference in Livingston on 10th June?

I intend to go as I think that it is good for fellow sufferers to get together with the health professionals to share our experience and knowledge. Hopefully we will all come away from the day a little bit wiser.

As this is my first time I don't really know what to expect, but I will post on here and let you know what I thought about it all.

Hi,

I went along to Livingston today for the SASA AGM and conference.

The first thing I should say is that Livingston is not an easy place to get to by public transprt (it is 11 miles outside Edinburgh for those who do not know where it is) and this necessitated an 0700 start in order to get into Livingston for 1000.

The hotel that it was held in was one of those typical business type hotels, alright but they all look the same and tend to excel at being bland. I suppose the same comments could be made of the buffet lunch, ok but bland and oh so typical of these places.

Anyway, on to the conference itself. The organisation seemed to be very good with proper registration and name badges which always help especially at an event like this.

Christine Graham MSP gave a talk about how the lobbying campaign was going in the Scottish Parliament and what she intended to do in the coming months to ensure that MSP's were kept aware of the problems of getting proper diagnosis and treatment. Unfortunately, she had another engagement so left immediately after giving her presentation and taking a few questions from the floor, but I did get the impression that she was genuinely on our side.

Dr Tom McKay from Edinburgh Royal Infirmary then gave a talk on sleep apnoea and the work that is carried out at the ERI. He pointed out that they are seeing about 500 new patients a year on top of all the review cases and now have about 4000 patients on their books. Unfortunately they have not received any extra resources or the necessary funding to support this. As a result although they have reduced the waiting time down to 57 weeks, this was still totally unacceptable in his eyes. Dr Mckay also pointed out that GP's still do not know enough about the condition and that ideally he would like to see them share the workload by looking after routine matters like replacing worn out hoses, straps, filters, etc.

Sister Phyllis Murphie from Dumfries and Galloway NHS trust spoke about the role of the smaller clinics and the work that she is carrying out at Dumfries. Due to the extensive use of home sleep tests they do not have a waiting list for an overnight sleep study, but as she stated they are currently able to manage but expect that as more GP's realise that there are these smaller clinics out there and that not every patient in Scotland needs to be referred to Edinburgh, this may well change unless they get the necessary funding.

Lizzie Hill from the Edinburgh Sleep Centre (nothing to do with the ERI) gave a talk about what the private sector could offer. Actually, it would be fair to say that she gave a competent if low key sales pitch.

From my point of view it was good to know about these smaller clinics and what the private sector can offer as when I started down the road towards diagnosis I was told by my GP that the ERI was the only sleep unit in Scotland and that it was impossible to go private. I should point out that my GP's practice is a teaching practice, so you would have thought that they would have been fairly clued up on what was available. This really does illustrate just how widespread the problem re lack of awareness is.

Dr McKay was able to stay for the whole of the morning session and answered many questions from the floor re the causes of SA and some of the alternative treatments. He dismissed surgery on the soft palette as being a waste of time as it does nothing to help alleviate the main problem of the narrowing of the airways. It was quite clear that he subcribes to the widely held view that CPAP is the only effective treatment currently available, although he did acknowledge that having to wear a mask and being hooked up to a machine was for some people far from an ideal solution.

Resmed had a stall here and they showed off some of their latest machines such as the S8 Escape (the machine I use and although quite basic, it certainly does the job quietly and effectively) and the S8 Autospirit machine complete with humidifier. They also had a variety of different masks that people could try on.

I found the lady from Resmed, Finella Connell very helpful. She showed me the correct way to fit my mask, as I had never been shown this at the sleep clinic and from the number of people she helped and the questions she took from the floor in the workshop session in the afternoon, it would seem that this is a common probem. It did seem amazing that there are so many of us out there who just assumed that we knew the correct way to fit the mask and that leaks were simply unavoidable. While you may still get the odd leak, it really was amazing the difference that fitting the mask correctly makes, not to mention ensuring that you have the right size mask in the first place.

She also provided tips on how to prolong the life of the straps and avoid the marks on your face, which not surprsingly tied in with fitting the mask correctly and on using humidifiers and indicated that she would be happy to conduct a session at next year's conference on mask fitting and care of your machine.

So all in all a very useful day, where I got a chance to share experiences with fellow sufferers and their partners and to learn some useful tips. I will definitely go again next year and would reccomend it to anyone in Scotland.

Thanks very much for an excellent report Tony. I just wish I were nearer and I'd go to. Is there an equivalent for England coming up?

Excellent stuff Tony.

Hi,

Thanks Dan and Alsacienne for those kind words.

The Sleep Apnoea Trust Association or SATA (there is a link to their website on the links page of the main website), are an national body with many affiliated groups in England and Wales.

They have their annual conference caled SATA-day around about the beginning of November according to the information about last year's conference on their website. As they are an Oxfordshire based society they hold their conference at John Radcliffe's Hospital in Oxford, where Dr John Stradling, a leading expert in SA is based.

I certainly intend to go if I can as Oxford is very easy to get to by public transport and has an excellent local public transport system. From what I heard at the SASA conference it also sounds as if the quality of speakers at this conference is usually top class.

If you want more information check out their website and if you want to join then annual membership is £10.00.

Hope this information will prove useful to anyone who wants to attend one of these conferences.

Thanks for posting this Tony, most informative. Livingstone is one hell of a place to get in and out of, I've been lost there before.

Is there any way you could describe the correct way of putting the straps on.....any tips???

Thanks
Rosie

Thank you for your report, Tony - it is very interesting and informative.

I know Lizzie Hill - she used to work in the public sector before she went to work at The Edinburgh Sleep Centre. I had my tests done at the Edinburgh Sleep Centre and she may have given a sales pitch but the treatment is second to none. My initial interview was with the Director of the Centre, who is an internationally renowned sleep specialist based in Harley Street and is an adviser to multinational companies on sleep, including British Airways. At no time do you ever see another patient - your appointments are timed so you are the only one there. I was the only one for a sleep study the night it was done and the technician was a doctor. The diagnosis was fed back to me 10 days later by a consultant neurologist and I was issued with my machine and fitted with my mask there and then - by the one and only Lizzie Hill. I get a review every 3 months and am on the Most Plan so that I am never left without a machine or mask should anything go wrong. The sales pitch was because it is a private clinic but it is great value for money.

Pinky,

I am sorry if I came across as being a bit negative as this was certainly not my intention. I only mentioned that there was an element of sales pitch precisely to remind readers that it is a private clinic and therefore you will have to pay. I make no recommendation on the quality of the service as I have not experienced it.

Actually I should point out that Lizzie Hill was at pains to point out that they viewed their service as complimentry to, rather than in competition with the NHS.

I took the opportunity to speak with Lizzie during lunch and was impressed with the whole set-up. Lizzie told me that she had worked at the ERI for a number of years before joining the private sector and certainly from the information she gave in the presentation it was clear that the consultants and doctors clearly know their stuff.

I have passed this information on to my union, partly as extra information in my fight against my employer and partly because I would like to see them consider offering this service as part of their membership package.

I also want to set up a meeting via my union with my employers to see if they will look into providing this as a benefit to employees.

It is good to know that you have had good first hand experience of the service on offer and hopefully I can get the same sort of positive response from my union and my employer.

Rosiebud,

I would be happy to pass on tips regarding the right way to fit your mask, although I can only give advice about the Resmed Ultra Mirage full face mask as this is the mask I use. Subject to this proviso I hope that people will find the tips useful.

Do you loosen and unloosen your straps and pull the mask and straps over your head and then readjust the straps? Yes I used to do this too and by the number of people who were getting advice re fitting the mask, it seems that I am not alone.

If you do this all you are doing apart from not ensuring the mask is correctly fitted is shortening the life of the straps. The correct way to do it is to have the straps attached to the top of the mask where the headrest is but to ensure that the straps that are at the bottom of the mask are not attached to the mask.

Put the mask over your nose and mouth, making sure that the bottom of the bridge contraption is level with your eyebrows. This will ensure that the mask and the cushion will seal properly around the bridge of your nose and will help to prevent marks and ensure that the bridge of your nose does not hurt due to the actual mask sitting on the bridge. The lady from Resmed did say that it looks as if the head support is sitting far too high, but that this is where you want it to be.

You should also ensure that the ratchet device on the head support is at the top as this tends to be the best position for the vast majority of people according to the lady from Resmed.

Once you have done this you can attach the straps at the bottom to the mask and tighten them just enough to ensure that everything will stay in place. Do not over tighten them as apart from causing facial marks it can also cause the mask to leak as it will not seal properly.

If you do this you should never have to adjust the straps, apart from the odd bit of fine tuning and you should feel more comfortable with less leaks. Unfortunately, you cannot guarantee that the mask will not leak as you move about during the night, but so far two nights in I have not had any leaks.

Finally, and in hindsight it may seem blindingly obvious but do make sure that you are given the right size of mask as one that is too small will almost certainly not fit properly and cause leaks and facial marks.

I hope that this will prove useful to people. Perhaps Dan could add this post into the CPAP masks and machines part of the forum, so that people who do not normally check this part of the forum will also see it, or at least tell me a quick way to transfer it across.

Hi Tony

thanks so much for passing on this advice. I will re-read it and make sure I take it in.

This is good advice for everyone.

Rosiebud