SLEEP · 2016-06-30 · the sleep apnoea trust exists to improve the lives of sleep apnoea patients, their partners and families and is managed almost entirely by unpaid volunteers

THE SLEEP APNOEA TRUST EXISTS TO IMPROVE THE LIVES OF SLEEP APNOEA PATIENTS, THEIR PARTNERS AND FAMILIES AND IS MANAGED ALMOST ENTIRELY BY UNPAID VOLUNTEERS

SLEEPMATTERS

DECEMBER 2013

THE SLEEP APNOEA TRUST ASSOCIATION

SATAday CONFERENCE REVEALS A SERIOUS WEAKNESS IN SLEEP APNOEA

MANAGEMENT BY THE NHS

SATA’s annual conference at Oxford on 12 October focused attention on the risks associated with drivers suffering from undiagnosed Obstructive Sleep Apnoea Syndrome (OSAS = OSA with symptoms of daytime sleepiness) and in particular those driving heavy goods vehicles. Joan Pearce gave a presentation on how Allied Bakeries is monitoring driver health, after which Graham Hill presented interim results of a SATA survey on how the NHS is dealing with the problem (not very well). Finally, CPAP patient Nikki King, CEO of Isuzu Truck UK, described from her personal experience that the variation in time from GP referral to diagnosis and then treatment can be many months. Let’s examine the figures. According to the Royal Society for the Prevention of Accidents (RoSPA) a driver with undiagnosed OSAS is up to 15 times more likely to have a road accident, representing a worse risk than drunk drivers. Apart from the misery of loss of or serious injury to a loved one, each fatal road accident costs the UK £1,917,766, a serious injury £219,043 and a slight injury £23,336. (Source: Dept of Transport). The human carnage costs are born by the NHS.

CPA P T R E ATM E N T PROV I DE S A N 85% REDUCTION IN THE CHANCES OF A DRIVER WITH OSAS HAVING A ROAD ACCIDENT. (NICE TA139)

CPAP THERAPY PROVIDES AN ESTIMATED 9 YEAR LIFE EXTENSION AS THE THREAT FROM THE CONSEQUENCES OF NON-TREATMENT ARE REDUCED. (http://news.bbc.co.uk/1/hi/health/8549619.stm)

The Driver Vehicle Licencing Agency (DVLA) has clear rules on driving with a medical condition and, working with SATA, other charities and interested parties has recently made these rules easier to understand. In UK law, the driver is completely responsible for his or her decision to drive and must take into account their ability to do so safely. Following diagnosis of OSAS, a driver must inform the DVLA and, if their Consultant confirms that CPAP therapy has commenced and is successful, they can continue to drive. Driving is not permitted during any time delay between diagnosis and successful commencement of CPAP therapy. For HGV drivers, this also becomes part of their annual medical assessment. Since March 2008, when the NICE Guidelines made CPAP therapy the recommended treatment for OSAS on the NHS, there has been a rapid increase in the number of Sleep Clinics in the UK, providing investigation, diag-nosis and treatment of OSAS following a GP referral. However, a SATA survey last year revealed that patient access to such diagnosis and treatment is variable across the NHS and that there is an element of postcode lottery. Perhaps as a result, only about 400,000 people have been currently diagnosed, leaving an estimated 1.4 million still in need of diagnosis and treatment. The majority of these will be adults and holding a driving licence. The variation in speed of diagnosis outlined by Nikki King is well known in the HGV fraternity. As a conse-quence, fear of losing their driving licence for a period

Page 2 | SLEEP MATTERS – DECEMBER 2013

SATAday CONFERENCE REVEALS SERIOUS PROBLEMS …

(which would at best lead to loss of earnings and might cost them their job) is a major deterrent for HGV drivers referring themselves to their GP and submitting to the investigative process. SATA decided to investigate what special arrange-ments were in place at Sleep Clinics to provide a fast-track service to HGV and other drivers whose job depends entirely upon holding a driving licence. In the survey, carried out this autumn, only 15 of the 136 English Sleep Clinics questioned have a formal fast-tracking service for HGV drivers. We are shocked by these results as, in a health system where costs are constantly under pressure, there seems to be a lack of coordinated thinking. Focus on costs has been underpinned in the NHS by the very laudable policy of “prevention is better than cure”. Simple examples are winter f lu jabs and HPV vaccination for 12–13 year old girls to prevent cervical cancer. So fast-tracking for a section of the population whose job has major safety implications for all road users, and potentially substantial costs for the NHS from the significantly increased risk of accidents caused by untreated OSAS, seems to present a compelling case for inclusion under this policy. This is especially the case given that the network of clinics, the ease of diagnosis, and the simplicity and modest cost in the provision of

CPAP therapy, makes treatment of OSAS one of the more straightforward and cost-effective forms of treat-ment provided by the NHS. NHS England has diverted major resources into establishing 26 major trauma centres in the UK, such as Addenbrooke’s in Cambridge and John Radcliffe in Oxford, with the goal of saving up to 600 lives per annum. Accidents with trucks tend to involve major trauma, yet the potential to reduce up to 20% of those accidents, and thus save millions of pounds, is not getting the priority it deserves.

SATA calls upon all GP Clinical Commissioning Groups and Hospital Trusts to introduce fast-tracking systems for heavy goods vehicle drivers with immedi-ate effect.

Is there any good news, you may ask? Can the industry take action and assume the corporate responsibility for their business activities? Joan Pearce, of Allied Bakeries, presented at the con-ference what has come to be regarded as best practice in the haulage industry. Every day, their fleet of 1,000 vehi-cles and their 1200 drivers deliver 2 million products to 15,000 locations in the UK. If a driver is suspected of having OSAS, they move onto office duties until further investigation, diagnosis and treatment takes place and they can return to driving duties. This takes on average two weeks. Allied Bakeries mainly use the private sector, as the NHS cannot meet their requirements, especially in speed of diagnosis and treatment, despite the national network of sleep clinics. The Allied Bakeries example is being increasingly communicated to other major fleet operators, such as the supermarkets, so progress is beginning to taking place. However, the enlightened approach by Allied Bakeries is so far exceptional even amongst large com-panies; it is unlikely that even smaller operators could afford the additional costs of drivers being off the road for a period, or the use of private sector treatment, and this is even more the case with the self-employed driver population, so the need for the NHS to raise its game is overwhelming. Is there anything SATA can do on a practical level to change things? We will introduce a new section on our website informing visitors which Sleep Clinics provide fast-tracking for HGV drivers. We hope this will encour-age drivers in the proximity of these Sleep Clinics to see their GPs and start the referral process. We will raise awareness with the Government and the NHS on these shortcomings by working with other members of the Obstructive Sleep Apnoea Partnership Group. Is there anything you can do as SATA members to change things? Perhaps send a copy of Sleep Matters to your MP and ask them to demand change. For extra copies please call Chris Rogers on 07833 076332.

Nikki King CPAP Patient and CEO Izuzu Truck UK

Joan Pearce, National H&S Advisor, Allied Bakeries

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FROM THE CHAIRMANWelcomeWe have had a most successful annual con-ference and Annual General Meeting. My thanks to everyone involved. The very good news is that this year the generosity of the delegates, various donors and the manufac-turers has allowed us to establish a bursary scheme, which I will explain later.

LeafletsWe have recently revised all our leaflets, and re-written the driving version to reflect the clearer understanding reached with the DVLA. Now we need to get them into your local GP Surgeries and Sleep Clinics. This is a certain way of getting more people diagnosed and helping those on CPAP with its management. So, please can you see if there is a chance to put some of them into these locations? Our recommendation in order of priority is: Snoring & Sleep Apnoea, What is Sleep Apnoea, Driving & Sleep Apnoea, Weight Loss & Sleep Apnoea and Sleep Apnoea & Hospital Admissions. We do have a few members already carrying out this role, but we really need to have nationwide coverage. So, please contact Chris Rogers by phone, email or letter and he will arrange supply.

BursariesIn the past few years SATA has funded research, but we are now faced with a situation where the complexity of validation through processes such as clinical trials has made it difficult to find sufficient funds to make a difference. So we have decided to focus our resources on funding to improve and create excel-lence in this new field of sleep medicine by providing bursaries to allow NHS staff to attend training courses. The first release of funds will be to provide £1,000 towards funding for clini-cians to attend the Sleep Apnoea & Hypoventilation Clinicians Update at Worcester College, Oxford in April 2014.

DVLAAt the SATAday conference Professor John Stradling outlined the progress that has been made with the DVLA in providing clearer information about what a driver has to do if they are diagnosed with OSAS (Obstructive Sleep Apnoea Syndrome), the official definition of obstructive sleep apnoea with the symptom of daytime sleepiness. The detailed guidance is pub-lished on the SATA and RealSleep websites and a simplified version is on the GOV.UK website. However, as we well know, our range of leaf lets is often used as the reference by Sleep Clinics and GP surgeries. So, we have revised our Driving and Sleep Apnoea – The Facts leaflet and it is now being distrib-uted. It is also on our website in both leaflet form and also as an easy to print at home A4 download. We are very grateful to John Stradling for the hard work and effort he has put into this.

Survey of Sleep ClinicsThis has been a major challenge for us and Committee Member Graham Hill. He has been emailing and phoning the 136 England-based Sleep Clinics to try and get a response to what was a very simple set of questions. However, despite some being contacted several times, we received no answer, so we decided

if they could not answer the simple question as to whether they fast-track truck and bus drivers, we recorded it as a “NO”. The results are dreadful with only 11% offering formal fast-tracking, and the editorial says it all.

OSA Contact GroupWe did provide some information in the last edition of Sleep Matters on this emerging and effective group. We are delighted to say that Nikki King, following her impressive presentation at SATAday, has agreed to join the group. Her knowledge of the commercial vehicle industry, her contacts and her sheer determination will be a major asset in helping it to achieve its aims. Quite simply, the group wants all drivers with OSAS to be treated as soon as possible both for their own good and that of others.

Telephone Help Line VolunteersIn response to the request for more volunteers following some retirements, I am happy to say four members came forward. We held a training day on 4th November at the Churchill Hospital and two were able to make it. So, with some further training I think they will soon join the team. The Help Line continues to be at the forefront of dealing with many questions about sleep apnoea and continues to be a foundation service run by the Trust.

Respiratory AllianceUnder the major reorganisation of the NHS, from April this year the Department of Health (DoH) no longer has a dedi-cated policy team working in respiratory disease. However, anticipating this, in 2012 the DoH asked major charities in the field to consider establishing a Respiratory Alliance (RA). The aim of the RA is to be representative of the respiratory community. Most of the main functions of the former respiratory policy team have been taken on by the new NHS Commissioning Board, but there is some important residual work that will need to be progressed by the RA. SATA has participated in the setting up of the RA and will be playing an important and active role once it is fully estab-lished, to ensure sleep apnoea is a national priority. Of course, being a patient support charity, run by patients, this works in our favour in the new patient-centric NHS, so we will make sure the OSA patient voice is heard, loud and clear. The initial funding for 18 months has been provided by the DoH, but then will have to be self-funding. It will involve a small member-ship fee from a charity such as ours but it will also mean we get a place at the decision-taking table. So, in summary, it will comprise of around 35 not-for-profit organisations and profes-sional societies with a common interest in achieving excellence in all aspects of respiratory health.

DonationsWe have been very fortunate to receive many donations, both small and large during the past 12 months and I just want to thank all of you who have been so generous. I want to single out one member, Joan Harrington, as she has been very active in raising funds and reflects the request I made to all members who are able to engage in fund raising activities. She ran a fund raising stall for a number of charities at the Wendover Woods Summer Fair and more recently, held a coffee morning. The money raised helps us to meet the ever growing demands for our help, especially printing and distributing our range of leaf-lets to Sleep Clinics all over the UK.


FROM THE CHAIRMAN

Bill Johnston, Chairman, SATA

SLEEP MATTERS – DECEMBER 2013 | Page 5

SATAday 2013 – A BREATHTAKING EXPERIENCE

New Developments in Obstructive Sleep Apnoea

Emeritus Professor John Stradling opened the conference with a review of some of the latest developments

Provent Therapy Nasal EPEP System.This device was covered in our Summer 2012 edition of Sleep Matters, just prior to international clinical trials taking place, and the Oxford Sleep Unit was conducting the UK based studies. The device consists of a small valve attached exter-nally to each nostril with hypoallergenic adhesive. The valve acts as a one-way resistor, permitting unobstructed inspiration. During expiration, airf low is directed through small air channels, increasing resistance. This increased resistance during expiration increases pres-sure in the throat, hopefully holding open the pharynx and stopping sleep apnoea. It was also hypothesised that there were other ways this might hold open the upper airways. There were data from units in the US, sponsored by the manufacturers, which suggested this approach worked. The careful randomised controlled trial by the Oxford Sleep Unit and Zurich Sleep Unit clearly showed that there was no useful effect whatsoever. The company

have since withdrawn the product for this purpose (but hope to sell it for snoring).

Winx Sleep TherapyThe Winx Sleep Therapy System is a novel treatment for sleep apnoea that includes a small plastic moulding that sits on the back of the tongue, tubing connected to it, and small pump that sucks on the tubing, thus lower-ing the pressure in the mouth. This gentle vacuum pulls these tissues forward, relieving obstruction of the upper airway that often causes sleep apnoea. There is no exter-nal mask or headgear such as would be used with CPAP. The pump is remarkably small and unobtrusive. Once the mouthpiece is in place and the machine is turned on, it quietly generates the vacuum that is delivered through the mouthpiece. However, at the moment there are no proper trials to justify its introduction into clinical practice. The Oxford and Zurich sleep units are hoping to test the device starting in the summer and will be looking for volunteers!

SATAday 2013 – a breathtaking experience

Provent Therapy Nasal EPAP system

Winx Sleep Therapy

Association Between OSA and Cancer Incidence in a Large Multicentre Spanish CohortThe Spanish Sleep Research Consortium, a remarkable alliance of Spanish sleep units, has recently produced some very extensive data to suggest that sleep apnoea over a long time period might increase cancer risk. The effect is small and could well be due to what are called confounders, that is some other risk factor that tends to associate with both sleep apnoea and cancer, for example overweight. The Spanish group is reasonably confident they have allowed for confounders, but you cannot allow for confounders you do not know about. The hypothesis is that recurrent falls in oxygen levels may stimulate cancer cells, but there will have to be an enormous amount of work done before this unlikely association is shown to be truly causal.


SATAday 2013 – A BREATHTAKING EXPERIENCE

Defining the Causes of Obstructive Sleep Apnoea: Identification of New Therapeutic TargetsWe have in the past always known that although the majority of sleep apnoea is related to being overweight, there are some people with sleep apnoea who are not overweight at all. Thus in some cases there must be other factors apart from overweight. A recent paper has explored what these other factors might be, and has identified some important contributors. For example, there seems to be a small group of individuals who wake up ‘too easily’ when their throat begins to narrow with much sleep disturbance. If they can stay awake a bit longer, then the body increases nerve activity to the throat muscles and sorts out the problem, thus allowing continuing undisturbed sleep. So the problem would be solved if only these individuals did not wake up so easily. Another group seems to recruit the muscles that open the throat rather poorly and fail to defend the airway. All these problems are overcome with CPAP of course, but where these data are interesting is that there may be subgroups of patients with sleep apnoea who might respond to different, and perhaps simpler, therapies.

What Causes the Rise in Blood Pressure in Patients with Untreated Sleep Apnoea?A recent large study tried to identify if it is the recur-rent falls in oxygen or the recurrent awakenings that cause a rise in blood pressure in patients with sleep apnoea. This group treated patients with sleep apnoea with added oxygen at night, which blocked the falls in blood oxygen, but did not stop the apnoeas and recur-rent awakenings. What was interesting, was that this extra oxygen made no difference to the blood pressure, whereas CPAP reduced it. This strongly suggests that the recurrent awakenings in sleep apnoea are the cause of the raised blood pressure, perhaps through increasing adrenaline levels in the body, and not the falls in blood oxygen levels.

Next YearOver the next year there are going to be at least three interesting trials being reported. There is a trial being

run by the Oxford Trials Unit with the Brompton Hospital, looking to see if treating sleep apnoea in the elderly is as effective as younger people. There is some evidence to suggest less benefit but we do not know for sure. We are hoping that a trial of CPAP for sleep apnoea in patients with diabetic eye disease will be fin-ished. This trial is again being run by the Oxford Trials Unit but with Newcastle (Dr Sophie West is a consultant there and trained in Oxford). Finally there is an enor-mous trial run out of Australia (the SAVE trial) looking to see if treating sleep apnoea in patients with various prior cardiovascular problems (e.g. high blood pressure, previous heart attack, previous stroke or mini stroke) reduces any recurrences. This is a really important study and unlikely ever to be repeated.

DRIVING and the Activities of the OSA Partnership GroupOver the last year there have been several initiatives to try and sort out how the problem of sleep apnoea and driving should be better managed. There are differ-ences of opinion and not all doctors, even specialists in the area, behave the same way and give similar advice. The DVLA has taken a rather draconian view that all people with sleep apnoea should stop driving until treated. This of course will frighten off suffer-ers from coming forward to be diagnosed and treated - the worst of all worlds. The DVLA initially failed to understand that there are lots of people with sleep apnoea that have no symptoms and do not need treat-ment. They have been persuaded of the error of their ways after a protracted campaign. The DVLA website now makes it clear that only sleep apnoea associated with sleepiness sufficient to impair driving needs to be reported to them. This is a great step forward! They have also agreed a carefully worded document dis-cussing the issues, which is now on the SATA website. There has also been an initiative to develop a train-ing module on sleep apnoea that can be used as part of the compulsory training that lorry drivers have to undergo each year. The British Thoracic Society is trying to put together advice for clinicians but this is some way off.

SATAday 201418th October 2014

John Radcliffe HospitalOxford

would like to wish all SATA members a very

Merry Christmas

and a Happy New Year!Thank you for your support through 2013, and we enjoyed meeting many of you in person this year.

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We’ll see you again in 2014!

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NEW PRODUCTS FROM THE SATAday SUPPORTERS


D e b b i e S m i t h , S A T A Committee Member and Advanced Nurse Practitioner at Oxford Sleep & Ventilation Unit, presented a brief over-view of the new products that the manufacturers sup-porting the SATAday event would have on display. Much of the focus this year has been on comfort as CPAP users demand the highest levels of comfort and ease of use.

ResMed ResMed presented two new masks, the Swift FX Nano Nasal mask ‘for him’ & ‘for her’, and the Quattro Air Full Face ‘for him’ and ‘for her’ mask.

Technology. The forehead pad has been eliminated using a Touchless Spacebar.

The Nano is a new compact nasal mask that is claimed will deliver an excellent user experience, in the areas of fit, comfort and ease of use. Just like the Swift FX nasal pillows, the Nano has minimal headgear without a rigid frame or forehead support. It also comes with a low-profile nasal cushion that provides natural breathing comfort, and a new ball joint elbow that moves freely.

The Quattro Air full face mask is 45% lighter than the current Mirage full face mask, and features an enhanced spring air cushion, comprising just four parts for ease of cleaning and assembly.

DeVilbissDeVilbiss unveiled a range of new and updated masks: the new Innova Nasal CPAP mask, the updated Flexset and Serenity, and the D100, in both Nasal and Full face versions The Innova provides excellent facial comfort and skin protection using its AIRgel and Advanced Cushion

The Flexset and Serenity masks have been improved with silicon or gel Comfort Touch cushions, there are new soft forehead pads, an improved better quality and softer headgear and a newly designed exhalation process for noise reduction.

The D100 masks are now available in nasal and full face versions. They both feature a lightweight and comfortable moulded silicon cushion, with three sizes of forehead pad included with every mask to achieve maximum comfort.

Philips Respironics HomecareThe next generation of masks were on display from Philips Respironics Homecare, with the nasal Wisp, a new minimal contact mask, and an enhanced Amara full face mask, building upon its performance, simplic-ity and appeal.



Copies of the SATAday speeches from Nikki King and Joan Pearce, plus Prof John Stradling and Debbie Smith’s presentations are available on

the Member’s Area of the SATA website.www.sleep-apnoea-trust.org

The Wisp features a unique t ip-of-the-nose cushion for minimal contact and superior seal. Its compact design fits more than 98% of patients, with a choice of two frame options: clear or fabric.

This mask is aimed at getting the best of both worlds with the performance and comfort of a nasal mask and the minimal footprint of a pillows mask

T he A m a r a h a s b e e n enhanced with a ten point fine-glide adjuster to give more flexibility and fit. The RS frame is now adopted across the range giving a smaller overall footprint, reducing pressure at the nasal bridge and an improved seal on the chin, made from 100% recyclable materials.

Intus HealthcareThe NightBalance Sleep Position Trainer is a new treat-ment option for the majority of OSA sufferers. Sleeping on your side is an important factor in CPAP therapy and this lightweight and comfortable intelligent sensor system held in a fabric chest pouch vibrates slightly when the patient moves onto their back, encouraging a return to the side sleeping position. This device can be obtained directly from Intus or through the NHS.

Transcend (Med Support BV)The Transcend Sleep Apnoea Therapy System made its debut at SATAday 2012 and is changing the way CPAP Therapy is delivered. The lightweight and small size CPAP machine make this a unique offering for an active lifestyle, with its mobile power adaptor and battery options. The pack of playing cards size P4 battery powers the CPAP unit for up to 8 hours, and the larger P8 provides 16 hours operation. The Tap PAP is a nasal pillows CPAP mask that addresses two of the most common issues with CPAP masks - overburden-ing headgear and leakage. The Tap PAP does away with traditional headgear, instead using a small mouthpiece to position the nasal pillows - and keep them in place throughout the night.

The company offers a wide range of options to make CPAP therapy more comfortable, ranging from pillows to nasal congestion solutions. Finally, its range of cloth Sleepweaver masks has now been extended to a full face version. These are a solution to those who are silicon or latex intolerant.

Fisher and PaykelSimplus, Eson and Pilairo form the dynamic range of Fisher and Paykel masks on display at this year’s conference. The Simplus is a full face mask that simply fits and performs with its one size, easy-fit frame. The Eson is a nasal mask made of only three parts, so it is very easy to clean and is available in three sizes. Finally the ultra lightweight Pilairo nasal pillow system, allows you to sleep freely on pillows of air. The pillows are a self inflating micro fine contoured silicon seal and one size fits all.


CHAIRMAN’S AGM REPORT SATAday 2013

Sleep Apnoea Trust AssociationChairman’s AGM ReportSATAday 201312th October 2013

This report covers the period from 13th October 2012, [our last AGM], until today.

CommitteeThere have been no changes to either the Trustees or the Committee and their names are as shown on your documents. We have had a stable year on the Committee and I am pleased to say that it is functioning well in every aspect and working as a well-practised team.

Progress ReportI did say last year that our major challenge was to con-tinue the wonderful work done by Frank and Wilma Govan, our former Chairman and Treasurer. We had under-estimated just how much they did do, but through having such a strong Committee, we have not only met this challenge, but started a modernisation programme that takes account of the pressure on time that is such a factor in modern life. Modernisation, that is, while striving to continue the friendly club-style culture that makes, we hope, our Trust such a pleasure to be associated with. I will give a brief overview of what has changed. We introduced a new and very powerful computer-ised database programme to replace the manual card index system. This allows us to do in minutes, what took hours: for example, a Gift Aid claim now takes an hour to produce. It covers hundreds of members, and replaces what used to be a 2 or 3 day manual process. Updating membership details and recording new members now takes only a few minutes. Using this database as a foundation, we have recently purchased a plastic card printer in order to meet the ever growing demand for Medical Alert cards and provide a modern credit card style version. Some of you have

Bill Johnston, Chairman, SATA

already replaced your cards with new ones that have been produced in just a few seconds. For those of you who wish to change yours, please contact Chris Rogers. The website, which has been subject to intense scru-tiny by a sub-committee, has become to some extent our shop front. It has been changed on a step-by-step basis to provide more information, enable online payments and above all to promote the activities of the Trust to attract new members. Over 80% of new members now join on line. There is a ‘’Member’s Only’’ area that is now being developed and improved. Although it is not usual for me to single out individu-als generally, Peter Wherritt has played a crucial role in making the changes happen to the website, and for this expert work we are most grateful. He has also improved and simplified our database system into an even more powerful administration tool. Our range of information leaflets has been revised, improved and re-designed to make them more visible in the Sleep Clinics and GP Surgeries and, as a result, we are distributing more than ever before. Sleep Matters has been subject to a further substan-tial evolutionary change. For us to represent the interest of sleep apnoea patients, we need to have visible com-munications that grab attention and serve the reader. So we have moved from a two colour 4-page edition to a 12-page, full colour publication, that is now self-financing by carrying advertising from the companies here today, those that support this SATAday conference. I hope you like the changes, as feedback so far has been very positive. You will have read in Sleep Matters that the St. James Hospital in Leeds support group ceased activities recently. We have, under the arrangements with affili-ated groups, taken on 112 new members and hope they find the SATA experience good enough to renew their memberships in May next year. Finally, we have started to attend more conferences and meetings that focus on sleep apnoea and respira-tory care. This networking raises our profile and, as we try to represent all sufferers, we aim to provide the patients’ voice in places where previously it has not been heard. It is important at this point to remind you that in the UK there are a potential 1.8 million people with Obstructive Sleep Apnoea. To date only 400,000 have been diagnosed, so there is still a mountain to climb until we attain treatment rates that match those of European neighbours such as France, Germany and Belgium. Raising awareness is still our greatest challenge.

ProjectsAs you have heard this morning, following the success of our PCT survey, we have been conducting a survey of fast-tracking facilities for commercial vehicle drivers in English sleep clinics. We are grateful to Graham Hill,


CHAIRMAN’S AGM REPORT SATAday 2013

who has brought his analytical skills and tenacity to bear in focusing on both surveys. An important group, as Professor Stradling outlined this morning, is the OSA Partnership Group. Much of today’s content is based on the hard work of that group and the active support that SATA has provided. The chance to get commercial vehicle drivers to over-come the misplaced fear of losing their licence is a goal that will save many lives, directly from CPAP therapy leading to wide awake, alert and safe drivers of 40 tonne trucks. That is the main focus of this group. With so many changes taking place in the NHS, we have joined the Respiratory Alliance. This govern-ment funded group is envisaged to replace much of the excellent work done by NHS Lung, which has been dis-banded. So SATA represents the interest of sleep apnoea patients, much as the British Asthma Association rep-resents asthma sufferers. Dr Miriam Armstrong, CEO of the Respiratory Alliance, is here today and do have a chat with her. Finally, the Gift Aid project is complete. When it started last year, just 45% of eligible members were registered for Gift Aid. The target was 75%. This was achieved just before the St. James group members joined. We hope to continue this level when renewals are issued next year. Gift Aid is an important factor for us by boosting your renewal fees by 25%.

Intus ResMed

DeVilbiss Respironics

Fisher & Paykel Transcend

FutureThere is an area where we have identified a weakness. With the recent retirement of John Patrick, a help line volunteer to whom we are most indebted for many years of excellent service, we now have only four people able to provide this service. It plays a crucial role in assisting people and helping them find solutions, as the current issue of Sleep Matters so ably demonstrates. Therefore, we are looking for volunteers. Training will be provided and we have such a day planned for Nov 4th. So, if you have what it takes to listen, understand and then provide help that can assist anyone who phones, please contact Chris Rogers. To raise funds for research, and following an approach to the Trust, we recently registered with Just Giving, to allow an easy way for anyone to raise money for SATA, from running in a marathon, to baking cakes for a local market stall. Please do think about how you can further help the Trust in achieving its goals. Well, this occasion sees my third year as Chairman, and I am grateful to my colleagues on the Committee for all their hard work. I am also grateful for all the work done by John Stradling, his successor Annabel Nickol, and her team at the Churchill Hospital, for their expertise and their willingness to give so much time in supporting the work of SATA. Bill Johnston October 2013

IMAGES FROM SATAday 2013

The Sleep Apnoea Trust Association Reg. Charity No. 1056963

The Sleep Apnoea Trust exists to improve the lives of sleep apnoea patients, their partners and families and is managed almost entirely by unpaid volunteers

SLEEP MATTERS is published by the Sleep Apnoea Trust. The editors and publishers of SLEEP MATTERS have no medical knowledge and therefore take no responsibility for the medical accuracy of the content of this newsletter. Concerned readers are advised to take professional medical advice. Queries concerning membership, SATAday, etc, should be addressed to the Secretary at the address below and not to the editors of SLEEP MATTERS.

Sleep Apnoea Trust, PO Box 60, Chinnor, Oxon, OX39 4XE

Tel: 0845 038 0060

Email: [email protected]: www.sleep-apnoea-trust.org

Affiliated Groups:Bristol Sleep Unit Patients Association 0117 969 5272East Kent Sleep Apnoea Support Group (Ashford) 01303 269830Humber Sleep Apnoea Support Group 0845 0942 872Derriford Sleep Apnoea Support Group (Plymouth) 07880 796803Welsh Sleep Apnoea Society 01633 774087

INFORMATION

Here is a selection of this year’s contributions

The winner this year was:

• If you are over 60 you can get purified water (for your humidifier) free on prescription

GENERAL & COMFORT• Place the machine at the bottom of the bed so that

the tube doesn’t get tangled around your neck or over your face.

• Over flow plumbing piping is the ideal size for air tubing extensions

• Use a straw to have a drink at night with – saves removing mask

• A doughnut-shaped ‘Total’ pillow is as good as many ‘CPAP’ pillows which can be expensive.

• Use a feather pillow instead of man-made fibre. Modern ones are washable.

• Lavish ‘nipple cream’ (pure lanolin) which works well for preventing sore noses - better than ‘Vaseline’

CLEANING• For tubing, wash once a week in warm water with

“Fairy” liquid. Put a ½ “AF socket on a string, tie a bottle brush to the other end and pull through (don’t lose the brush in the middle of the tube).

• Wash your tube & mask with ‘Johnsons’ Lavender baby wash, and you have a lovely smell when you go off to sleep.

• When you wash your mask, rinse it with a few drops of vanilla essence in the water – it smells nice first thing in the morning.

MASK PROBLEMS• Wear an ‘eye mask’ (the lightweight ones you get

free from airlines) as they protect your eyes from the cold air that can come from leaks in the mask.

• Loosen straps and start again and not too tight.• To clean masks, use ‘Baby Soft’ tissues from Boots.

A big pack costs very little.

HUMIDIFICATION• Easiest way to keep the humidifier tank clean is to

take it into the shower every morning.• To descale your humidifier, use 50% boiled water &

50% distilled vinegar.• No need for a humidifier, just stand the unit on a

damp towel.• Put a few drops of Olbas Oil on the filter when suf-

fering a blocked nose (Editor’s note: only use Olbas oil for a maximum of 5 days!)

TRAVELLING• If staying away/ travelling from home, always take

an extension cable as hotels don’t always have sockets near the bed.

The Tale EndThe Top Tips competition at the SATAday conference always has new and unique suggestions concerning how better to manage the relationship you have with your CPAP machine and mask.

Top Tips competition in the Nurses Corner at SATAday A full house in the SATAday lecture theatre

Documents

SLEEP · 2016-06-30 · the sleep apnoea trust exists to improve the lives of sleep apnoea patients, their partners and families and is managed almost entirely by unpaid volunteers