MILLENNIUM EDITION

ISSUE NO 17

SLEEP MA TIERS is published quarterly by The Sleep Apnrea Trust. The editors and publishers of SLEEP MA TIERS have no medical knowledge and therefore take no responsibility for the medical accuracy of the content of this nevsletter. Concerned readers are advised to take professional medical advice.

Contributions to the editor:

lim Healing 8 St Mary's Road Oxford, OX4 1 PX

Tel/Fax (01865) 723961

The Sleep Apne2a Trust

· The Sleep Apnrea Trust exists to improve the lives of sleep apnoea patients, their partners and their families and is managed ·rely by unpaid volunteers.

Registered charity no 1056963

Telephone + Fax (01494) 527772

Email: SAT rust@aol.com

Web page: www.sleepmatters.org

SPREAD THE WORD !!!!

Help others to find out about Sleep Apnoea and its

treatment.

When you have finished with your copy of "Sleep Matters" put it in your GP's surgery for

others to read.

Page 1

YEAR 2000 GREETINGS

A message from the Chairman (Frank Govan)

A Happy New Millennium to all of you! Let us share the hope that very early in this new millennium we shall be able to provide all who need it with the means to control Obstructive Sleep Apnoea, and thus ease the misery felt by so many people. To have any hope of doing this we must press forward in a number of areas of endeavour.

In this spirit I have been giving some thought to New Year Resolutions which SAT A might adopt, and the following ideas suggested themselves:-

1. We need to become more visible.

We are now having a measure of success in placing articles in publications, and some of our members have been appeanng In radio

,. ~ --_- ---=-----

FROMSATA

broadcasts, all of which help to spread our name and our message. So far we have been responding to opportunities as they arise, but we need to take the initiative by having ready made articles and seeking out opportunities to publicise them. If there is anyone amongst our membership who has a flair for this type of work, perhaps they would get in touch with me. We have a real need in this area.

2. We need to increase our education efforts.

We have had a marvellous response to our mail shots, which have been sent to General Practitioners. The response rate has been no less than 12%, which is more than 10 times the response expected by the professionals, who do this for a living. A tremendous result for our team of unpaid amateurs! However, there are no less than 30,000 GPs in the country

SATA is most grateful to

MEDIC-AID

and so far we have barely scratched the surface.

3. We need to build on our success.

We tend to forget how much has been achieved in a few short years. We have a successful Association of 600 members, and we had another wonderful conference last year, which really had a special aura all of its own. Increasingly we are spreading out to help patients and sleep clinics in all parts of the country. All of this has been achieved by your hard working committee, to whom I offer my grateful thanks on your behalf.

Whilst we have plenty of tasks on hand, there are other areas which we should be tackling. What do you think? I would welcome your views.

Please write or telephone me at SATA (Phone/fax 01494 527772) or email me at frankgovan@aol.com.

for sponsoring this Millennium edition of SLEEP MATTERS

Millennium edition

SATAdoy

· · A note from the Editor

In previous years Sleep Matters has been a quarterly publication. Last year, for reasons beyond our control, only three editions were possible so we thought that a larger edition would be a good way to catch up and to welcome in the new Millennium.

You will see that not all the items are about sleep. Some are there as a light hearted and hopefully entertaining change.

The larger edition does give us a chance to put in more articles from members but we need to

. hear from you! If you like the idea of a larger edition like this please let us know. If it was felt to be a good- idea we could think of moving to a larger edition twice a year rather than a four page edition four times a year. This is up to you -it is your journal and we want to meet your needs.

SATAday (Claire Mitchell)

SATAday was held at the Tingewick hall, John Radcliffe hospital Oxford on 6th November 1999. The conference was attended by a record 260 participants.

Page 2

In his opening address, our Chairman, Frank, announced that we now have 620 members, told us about our funding for the Dental Device Research, the development of our web site, and our GP Awareness Campaign. He thanked the manufacturers of CP AP equipment for sponsoring "Sleep Matters" and the Conference. He also an-noun c e d John Stradling' s appointment as Professor of Respiratory Medicine, at the University of Oxford.

The Chat Shops were as popular as ever, with many problems, ideas and situations to discuss and mull over. As always there was much help and sound advice from members of the Sleep Unit who ran them.

Rob Davies talked about some of the Unit's research into OSA - the relationship between Sleep Apnoea and blood pressure, and the trials with people on CPAP. He asked for those present to leave their e-mail details if they want-ed to be contacted to help with the research. He also urged us to write to our MPs requesting them to sign the Early Day Motion on Sleep and Road Accidents. He announced that Melissa Hack and Chris Davis now have Consultant

posts in south Wales and Reading respectively and that Lesley Barnett is now a Consultant at Oxford. There are two new members of the academic staff of the Unit, Mark Slade, a Consultant from Cambridge, with specialist knowledge in Intensive Care, and Justin Pepperell, a Research Fellow.

Frank then introduced Jean Gall, Chairwoman of the Scottish Association for Sleep Apnoea, She talked about setting up local groups and noted that the SASA is now well established and there are four local groups in Scotland.

Chris Hanning, director of the Leicester Sleep Clinic told us about the work of that unit. They have, 700 patients and are due to hold their 4th Annual Meeting on 8th April 2000. They have an active Patient Group, producing two news letters annually, and an advice leaflet that goes to GP surgeries, Clinics etc.

At the AGM the minutes of the last year's meeting were approved and signed, the Treasurer's Report was read, and all the Officers re-elected. Following one question from the floor, a hand poll indicated 98 % favouring an increase in the subscription to the

SHIP ·MATTERS Trust to £10. A vote of thanks was given to all the officers.

Our Patron, the Earl of Buckinghamshire, talked of methods of influencing the Government on Health Policies He will write to John on the process to be gone through to influence Government.

Ian King and Tim Healing talked, about travelling with CPAP. They gave advice on power sources (local voltages etc.) and on items to take (adapters, extension leads, fuses, insulating tape, spare parts). Ian ad vised travellers to check with their airline if they want to take their CP AP as hand baggage and to get a letter from their sleep clinic to show to security or customs.

Melissa Hack then talked about her research on the effects of SA on driving, highlighting the severe effects that the condition can have on individual's ability to drive safely.

Finally, Frank summed up the day, the raffle was drawn and we said fond farewells at the end of a very fulfilling day.

Warm thanks to the speakers for a most stimulating day and to conference committee for organising such a

Millennium edition

SlllP MATTIRS su~cessful event. The whole thing went so smooth! y that it is easy to forget that such a result is only achieved by a lot of hard work.

The numbers attending the conference have been growing from year to year. To some extent this may reflect the increased knowledge of Sleep Apnoea among the medical profession ( and hence an increase in diagnoses) but it also reflects a continuing enthusiasm for the conference amongst longer serving members.

SATAday -

those questionnaires!

(Denise Roberts)

Many thanks to all of you who ~ompleted our assessment quest-ionnaires after SAT Aday last November, and for

your comments, many of which were extremely complimentary!.

We certain! y take notice of your comments and suggestions, and try to incorporate them into the next conference. How-ever, there are some things which we cannot change, much as we would like to. For example several people commented that the seats in ,the lecture theatre were small and not very comfortable. However, because we can use the venue at the John Radcliffe Hospital free of charge, we can charge much less for tickets. A more comfortable venue, big enough to accommodate our ever growing numbers, would make the price of attending prohibitive for a lot of our members.

Most of you agreed that the catering was excellent, but some were

SAT Aday evaluation.

concerned about the queues. Jayne, our caterer, does her best to keep costs as low as possible, and this means using the minimum number of staff. We tried a double sided queuing system this time, which was an improvement on the previous year.

Finally many of you would like to see more trade stands in the main hall. Unfortunately this time one of the usual companies was unable to attend, but actually the number of companies manufacturing CP AP machines and accessories is limited, and we always invite the four main suppliers (Respironics / Heal thd yne_-MedicAid who declined this year, Sunrise Medical Ltd/ De Vilbiss, ResMed UK Ltd, and Mailinckrodt/ Puritan Bennett). As you will see, several companies have amalgamated. The other

Proportion of replies falling into the six categories [1 = Poor to 6 = Very Good]

%

2 3 4 5 6

Millennium edition

· SATAdoy

suppliers in the UK are very small and would not really be interested in commg.

Of course, if anyone has any ideas for improving our annual conferences, we would welcome them. Send them to me at:

The Osler Chest Unit, Churchill Hospital, Headington, Oxford, OX3 7LJ.

SATAday

analysed

A detailed analysis of the questionnaires that were returned to SAT A has been undertaken (mainly by Denise Roberts). To present the detailed results here would be tedious but we are giving a summary so that our readers can get a flavour of the results.

Sixty-nine questionnaires were returned (26.5% of those attending). Of these, 44 (64%) were attending their first conference, seven their second, and the remarnrng 18 had attended three or more.

The results are summarised here in the form of a graph of the proportion of the overall replies which fell into the various scoring categories (from 1 = Poor to 6 = Very Good).

Page 3

SATAdoy

Of the 64 who replied to the question "Was the Conference good value for money, 63 considered that it was. The overall response to the other questions was also very favourable and showed that most of those attending were satisfied with the proceedings.

Over 83% of the scores were in Categories 5 and 6. However just under 20% were less satisfied with some aspects of the conference and these scores are particularly important for future planning.

Of equal value were the comments that

individuals wrote on their replies. Whilst the scoring system gives an overall result these highlight particular items and allow problems to be identified.

The results of this evaluation will allow us to continue to improve the annual conference in line with members' expressed wishes.

GP awareness campaign (Claire Mitchell)

The first phase of our GP awareness campaign is now complete. We were able to target seven

Normally mild and inoffensive, the Kraken was eventually driven to earn its fearsome reputation by the sailors' incessant snoring

Page 4

Health Authority Regions (Lincolnshire, South Derbyshire, West Kent, North Essex, Wiltshire, Portsmouth, and Dudley) thanks to the help and co-operation of their Chief Executives, and the Heads of their Communications Departments. They provided address labels for us to stick on our Target cards and these were then returned to the Health Authorities for mailing.

In all 2,355 cards went out. The response has been marvellous and we have received 3 2 6 requests for further information.

The package we send to the Practitioners is a folder with a title and our logo contammg our information leaflet, and that of the British Lung foundation. There are also letters from our Chairman and Professor John Stradling together with the definitive article on Sleep Apnoea by John, which was published in the Lancet, other articles from medical journals and a newspaper article about a driver with SA

We will shortly be selecting another group to target!

Jhea\'>en an6 JhelT

.i,ea"en is wnere:

tne pofice are ~ritisfj, tne

SlllP MATTlRS Last night I slew my wife

Stretched her on the parquet flooring

I was loath to take her life, But I had to stop her snoring

Harry Graham, "Necessities", Ruthless Rhymes, 1899

And now for a something completely different!!!

Did you know that

HEAVEN IS HOTTER THAN HELL?

(This little item appeared in Applied Optics in 1972 - ever in the forefront of science we repeat it for your Millennial

. education!}.

The temperature of Heaven can be rather accurateLy computed from available data. Our authority is the Bible: Isiah 30:26 which reads, Moreover the light of the Moon shall be as the light of the Sun and the light of the Sun shall be sevenfold, as the light of seven days.

Thus Heaven receives from the Moon as much

the Sun and in addition seven times seven (forty-nine) times as much as the Earth does from the Sun or fifty times in all. The light we receive from the Moon is a ten-thousandth of the light we receive from the Sun so we can ignore that. With these data we can compute the temperature of Heaven. The radiation falling on Heaven will heat it to the point where the heat lost by radiation is just equal to the heat received by radiation. In other words Heaven loses fifty times as much heat as the earth by radiation. Using the Stefan-Boltzmann fourth power law for radiation

(HIE)4 = 50

Where E = the absolute temperature of the earth (-300K), this gives H as 798K (525° C).

radiation as we do from The exact temperature of

There ain't no way to find out why a snorer can't hear himself snore

Mark Twain, Tom Sawyer Abroad, 1894

Millennium edition

Something different

'Xau3!i' amf tfi'e W'orf d fau3!i'.F -witli

you, snore and you .Ffef!P alone/

Anthony Burgess, Inside Mr Enderby, 1968

Hell cannot be computed but it must be less than 444.6° C, the temperature at which brimstone changes from a liquid to a gas. Revelations 21: 8: But the fearful and the unbelieving ... shall have their part in the lake which burneth with fire and brimstone. A lake of molten brimstone means that its temperature must

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be below the boiling point which is 444.6° C. (Above this point it would be a vapour, not a lake).

We have then temperature of Heaven, 525° C. Temperature of Hell less than 444.6° C.

Therefore Heaven hotter than Hell!.

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SA Glonory SlllP MATTIRS Glossary of terms used in the Sleep Apnoea world. Part 4. Professor John Stradling

PALATE The soft tissue flap that hangs down the back of the throat attached to the roof of the mouth. The tip is also called the uvula. The whole structure is often called the soft palate to differentiate it from the roof of the mouth (a bony struc-ture) also called the hard palate.

PANIC AROUSALS Episodes of awakening with sensation of panic. Sometimes due to bad dreams and stress or as a consequence of waking and sensing the upper airway is blocked.

P ERIODIC MOVE- Also known as nocturnal myoclonus. A condition where the legs move every 40 MENTS OF THE LEGS seconds or soproducing brief arousals. Commonly seen in the first few weeks DURING SLEEP (PMLS) on nasal CPAP (not understood why). Another cause of daytime sleepiness.

PHARYNX (fa-rinx) Essentially the throat area between the voice box and the back of the nose be-hipd the tongue. A floppy muscular tube.

PICKWICKIAN An old term for large people with problems of underbreathing. Included a lot of SYNDROME diagnoses. No longer used by those who know!

POL YSOMNOGRAPHY Simply means a recording of lots of things during sleep. Has come to mean re-cording at least EEG, EMG and EOG all night

POST POLIO In some people who had polio years ago problems of muscle weakness can re-SYNDROME turn 30 years later. If the breathing muscles were originally involved then these

patients may need breathing support over night 30 years on.

REM-SLEEP See sleep stages

RINATEC Nasal spray that reduces congestion and discharge. Can be used on a long-term basis. Prescription only.

SCOLIO~IS A twisting of the spine that can limit lung expansion and lead to problems of underbreathing which can be alleviated by overnight breathing support.

SILASTIC RING An operation to limit eating. Unpleasant. If you overeat you are sick! GASTROPLASTY

SLEEP STAGES Sleep is conventionally divided into 5 stages. One is called REM (Rapid Eye Movement) sleep, the other four are non-REM sleep. We dream in REM sleep, the brain is almost awake. Non -REM sleep (refreshing sleep) is graded 1 - 4 and represents increasing depths of sleep. The two deeper stages (3 &4) are called slow wave sleep.

SLOW WA VE SLEEP See sleep s/ages

SNORING The noise resulting from vibration in the upper airway; anywhere from the back of the nose down to the voice box. Often involves the palate

I

SNORING AROUSALS Sleep can be disturbed not only by actual episodes of stopping breathing but also by snoring alone ( when a big increase in breathing effort is required to overcome the narrowing of the upper airway that led to the snoring).

STRYCHNINE Has been tried to cure sleep apnoea! Works a bit but there are worries that spouses might be tempted to give an overdose at 3 am when the snoring is par-ticularl y bad!

Page 6 Millennium edition

SlllP MATTIRS News L

Some dates for your diary

4th Nov 2000 SATAday For information or if you are willing to lift share please contact Wilma Govan on 01494 439 719

8th April 2000 Leicester Scientific meeting Mrs Phyllis Allsop

*

*

(Leicester Sleep Apnoea Patients LSAPA meeting, 2B Laurel Rd, Blaby, Leics, LES 4DL Conference)

NEWS FROM THE OXFORD SLEEP UNIT

Congratulations to John Stradling on his appointment as Professor of Respiratory Medicine at Oxford University. After training at the Middlesex Hospital, John came to the Churchill Hospital as a research registrar and then as a senior registrar. After a year in Toronto working in the University sleep laboratories he returned to Oxford as a Wellcome Senior Research Fellow and then as a Consultant Physician and University Senior Lecturer.

John started the Sleep unit in 1986 and it has grown from one sleep laboratory with 30 sleep studies per year to its present size of four laboratories and 22 sleep studies each week. Internationally renowned, the unit produces numerous research studies each year and publishes extensively in the medical literature

Rarely has somebody deserved their doctorate more than Debby Nicoll, Senior Sister on the Oxford Sleep Unit. Debby started her part time PhD with Dr Stradling in 1994, working on a new diagnostic technique for sleep apnoea. This technique has now gained wider acceptability and is proving a valuable addition to monitoring techniques.

Debby managed to do the work required for this doctorate alongside a busy clinical job. She was b1.1sily writing up all the experimental work whilst in the later stages of pregnancy, and it truly became a race to the finish! Her baby son James was born a month early so he won the race! However, Debby was able to finish her thesis whilst on maternity leave, had her viva on 19th

· January and was awarded her doctorate. Many congratulations to Dr Debby, a magnificent effort

TONSILS Tissue involved in fighting infection in the side walls of the throat. Usually melt away by the age of 8 or so but may persist and partly block the phaynx or throat.

TRACHEOSTOMY Creating a hole into the windpipe from outside just below the Adam's apple. ( trak-ee-osto-mee) Used to be the main treatment for obstructive sleep apnoea (opened at night

closed during the day) to bypass the obstruction in the throat.

UPPER AIRWAY l general term for obstructive sleep apnoea and heavy snoring. Used to RESISTANCE describe the relationship between upper airway narrowing during sleep, SYNDROME sleep disruption and the daytime consequence of excessive sleepiness.

UVULOPALATO- The operation that cuts away part of the soft palate and side walls of the PHARYNGOPLASTY (UPPP pharynx ( or throat) in an attempt to reduce snoring volumes. Not very ef-or U-triple P) fecti ve and very painful.

Millennium edition Page 7

TRUST NEWS Membership renewal-a reminder from

the Treasurer

Renewal notices for the year to 31st October 2000 were issued on 1st December 1999. Some of you may have overlooked them in the midst of the Christmas and Millennium festivities. If this is the case, I would be pleased to receive your outstanding subscription as soon as possible.

Wilma Govan .

SlEEP MATTERS Help-lines (It helps to talk)

If you are worried about Sleep Apnrea, having difficulty in coming to grips with CP AP treatment or just need a bit of practical advice ring one of our helplines.

It does not matter whether you are a member of the Trust or not. You will get friendly and confidential advice. Each volunteer has a file of useful information as well as a wealth of personal experience.

We do not provide medical advice. If you suspect that you may be suffering from Sleep Apnrea please consult your own GP, who will be able to refer you to a specialist sleep clinic.

Do call one of our volunteers (listed below) for a chat.

The Sleep Apnoea Trust Association

______ T_h_e_C_o_m_m_it_t_e_e _____ ...... I I ____ T_h_e_He_l_p_L_in_e_V_o_l_un_t_e_e_rs _ __ ___. Role Name Tel no. Area Name Tel no.

Chairman Frank Govan 01494 439719 Devon Eileen Pearson 01803 834150

Vice Ian King 01865 721240 Chairman Dyfed Hugh Roberts 01267 238848

-Secretary Denise Roberts 01865 225236 Essex Tom Pendred 01255 4 75607

Treasurer Wilma Govan 01494 439719 London Claire Mitchell* 0181 992 9920

Editor, Tim Healing 01865 723961 Sleep Matters Northants Aileen Keith 01536 269375

Membership Jane King 01865 721240 Oxon Barry Davies 01295 780291 Secretary Bill Ferriday 01865 880100

Merchandise Claire Mitchell 0181 992 9920 Elspeth Ferriday* 01865 880100

Michael Storm 01869 243 724

Heather Lucas 0121 705 7617 Pat Watson* 01491 832089

Simon Watson 01491 832089

Bob Mitchell 0181 992 9920 Somerset John Patrick 01225 317786 r

Committee Dieter Shaw 01494 443310 members WMidlands Colin Short 0121 742 6256

Colin Short 0121 742 6256 Wilts Tim Webber 01985 300555

John Stradling 01865 225236 Worcs Phil Lawrence** 01527 459621

* Partners ** Nocturnal hypoventilation

Page 8 Millennium edition