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

SEPTEMBER 2014

THE SLEEP APNOEA TRUST ASSOCIATION

SATA’S LEAFLET RANGE PLAYS A VITAL LIFE-CHANGING ROLE

In this series of articles that inform you about some of the work we do on your behalf, the focus in this edition of Sleep Matters is on the range of leaflets we produce. First of all we have to deal with the two words, sleep apnoea. It is the opposite of heart attack. Everyone understands the words heart and sleep. But then comes the crunch, everyone understands the word attack but hardly anyone understands the word apnoea. So the challenge starts with the medical description of the affliction. Almost no-one understands the name. Apnoea means temporary cessation of breathing, especially during sleep. It comes into the English lan-guage from the early 18th Century, and was derived from the Modern Latin interpretation of the original Greek “apnoia” from “apnous” breathless (New Oxford Dictionary of English 2001). So, would “sleep with tem-porary cessations in breathing” or “stopped breathing episodes during sleep” or “sleep interrupted by short periods of not breathing”, or even “sleep breathing attack” work better? Not really. So we are stuck with “apnoea” and therefore we have to use an unfamiliar term to describe an illness that affects up to two million people in the UK. That is a main reason why a fundamental pillar of our work is to inform, educate, raise awareness and above all define sleep apnoea. This represents a major chal-lenge for the Trust’s Committee and a large proportion of its work. While great progress is being made and the rate of diagnosis is ever increasing, there are still over one million people to be diagnosed in the UK alone. We are all aware of the road safety risk that drivers with OSAS (obstructive sleep apnoea syndrome) pose, with their excessive daytime sleepiness. However, less well known is that untreated sleep apnoea can shorten life expec-tancy by up to 20% (https://www.gov.uk/government/news/motorists-warned-about-dangers-of-untreated-obstructive-sleep-apnoea-syndrome).

That is, on average, a life expectancy reduction of up to 15 years for a man and 17 years for a woman.Yet treatment is simple, effective, with no surgical or drug intervention using a CPAP machine, supplied free

of charge by the NHS. And, despite the dramatic growth of NHS Sleep Clinics throughout Britain since the NICE guidelines of March 2008, we are still climbing a moun-tain in terms of treatment. SATA’s leaflets originated well before free treatment for OSA on the NHS and have developed over the years into a comprehensive range that informs people about sleep apnoea, deals with snoring, the benefits of weight loss, the driving implications of OSAS and CPAP use when in hospital for other treatment. Their quality is guaranteed because they are written by the charity and its Medical Advisor and Trustee, Professor John Stradling. They are updated regularly, reflecting any changes that occur in either treatment practice, government regulation or new developments. The latest editions were revised in June 2014. The most important focus has been on making them easy to read and understand but most important of all, free of charge. The leaflets tend to sit in Sleep Clinics/Respiratory/Cardiac waiting areas, so are exposed to a wide range of patients. Unlike a “cold call”, they are picked up by visi-tors and taken away because they have either a direct or indirect interest. So, three years ago, we redesigned them into a corpo-rate style, made the title more attention grabbing, used colour to catch the eye and publicised their availability.The result is that SATA now regularly supplies over 50 Sleep Clinics in England and Wales with the leaflet range and they are becoming a significant cost burden for the Trust. So, the donations many of you make, in addition to the membership subscriptions, play an important role in funding the ever increasing demand.

The RangeThe range comprises six different leaflets, all with a dif-ferent role:

Educational and Prompting ActionWhat is Obstructive Sleep Apnoea – The FactsThis asks simple headline questions related to snoring, breathing and sleeping. It goes on to describe the con-sequences in a progressing level of detail, and possible

Page 2 | SLEEP MATTERS – SEPTEMBER 2014

SATA’S LEAFLET RANGE PLAYS A VITAL LIFE-CHANGING ROLE

treatment using CPAP. Finally the closing page is the Epworth Sleepiness Scale questionnaire to self-assess, and if the score is over 10 a recommendation to see your GP.

Informative and Prompting ActionSnoring and Sleep Apnoea – The FactsIn a recent survey by the Daily Mail, it seems that I in 5 relationship breakdowns in the UK are attributable to snoring. Add to this that snoring can indicate that there are problems with breathing at night, and the humor-ous character of snoring becomes much more sinister, with life changing and possibly life shortening conse-quences. So this leaflet addresses the issue of snoring, explains why it happens, what it can lead to, introduces the term sleep apnoea, describes the symptoms and how it is diagnosed and treated.

Simplifying UK LawDriving and Sleep Apnoea – The FactsThis leaflet is a summary of the detailed work done by the Obstructive Sleep Apnoea Partnership Group and the DVLA in providing much clearer guidelines on the difference between OSAS (Obstructive Sleep Apnoea Syndrome - OSA with excessive daytime sleepiness) which must be reported to DVLA, and simple OSA which need not be. It covers the regulatory position as regards informing the DVLA and managing that process. It is one of the clearest explanations available and partners the DVLA’s excellent “Tiredness Can Kill” brochure.

Health management adviceWeight Loss and Sleep Apnoea – The FactsMany people who have OSA are overweight. There are many cases of patients losing weight and ceasing to suffer from OSA. The leaflet advises on what the correct weight should be and on some of the routes available to lose weight. Recent changes in NHS guidelines concern-ing bariatric surgery are also covered in the new version of the leaflet.

Patient Management AdviceSleep Apnoea and Hospital Admissions – The FactsThis contains advice for both patients using CPAP and hospital staff on how to cope with and manage CPAP during a hospital admission. It is often the case, though it is decreasing, that the hospital staff are unfamiliar with OSA and its treatment. This leaflet fills that gap.

Trust InformationJoin the Sleep Apnoea Trust – The FactsA brief explanation about the Trust and what it does. In addition a brief overview of sleep apnoea and finally a membership form with a Medical Alert card application and a Gift Aid tick box

Leaflets vs. the webSome of you may question why, in these days of rapid and easy access to the Internet, does SATA continue producing and distributing printed information?

In the past three years initiatives by SATA, the BLF and especially the BBC (Goodnight Britain), have helped create interest in sleep-related breathing problems.We also know from research that leaflets, as part of any business marketing strategy, do work.They sit in Sleep Clinics and in GP surgeries and get picked up, taken away and read. Sometimes they are used by other concerned family members or close rela-tives to stimulate interest with a hope that action may follow. But for the final judgement on their role, we talked to the front line - the Sleep ClinicsHere is what they say about the role SATA’s leaflets play in their operations.

Dr Vicky Cooper, Principal Respiratory Physiologist, Salford Royal Hospital;“The SATA OSA leaflets are invaluable to our service, giving patients clear information on the causes of OSA, weight loss, driving and hospital admissions. As they are produced by a patient support charity that is run by patients they give the information that patients want to know in a language they can understand. It is fantastic that they are provided free of charge to the clinic. We even get patients that are not under our service wanting to know more about OSA, having picked up and read the leaflets that are in our waiting area.”

Jill Meeres, Principal Sleep Technologist, Conquest Hospital, St Leonards-on-Sea.“Just to say that we are so grateful for the supply of SATA’s leaf lets. Our patients and their families often need to ‘digest’ information in their own time and your leaflets help them to do this.”

Andrew Bain, Sleep Nurse, University Hospital of North Staffordshire, Stoke on Trent.“We at the Sleep and Ventilation Unit, University Hospital of North Staffordshire are delighted to have access to SATA leaflets as a) staff find that they are a great resource which serve to both complement and rein-force information given and b) patients value these for the breadth, quality and clarity of information given but also as they instil a sense of belonging to a particular patient body.

Carrie Toal, Highly Specialised Clinical Physiologist Blackpool Hospital“The leaflets produced by the Sleep Apnoea Trust are a truly valuable source of information. We issue them to all our new CPAP patients and have them available in all our follow-up clinics. Our patients find them very useful, they also love the web-site and forum.”

Donna Woodbury, Assistant Practitioner, Sleep Clinic, Yeovil District Hospital,“Our sleep service has around 1000 patients and still growing! The Sleep Apnoea Trust is a fantastic organisa-tion offering support to patients as well as sleep services. We have all 6 SATA leaflets available for our patients. We find them comprehensive & informative.

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FROM THE CHAIRMANThe Committee is currently hard at work getting everything ready for the annual SATAday Conference and AGM on 18th October at the John Radcliffe Hospital Academic Centre in Oxford. Bookings are ahead of previous years so, if you have not booked, do it NOW, to avoid disappointment.

DonationsRecently we received a generous donation of £215.31 from the Pierrepont Gamston Primary School School in West Bridgford, near Nottingham. It originated from the tragic death of 39 year old Gary Huxley-Binns, who, among other health complica-tions, also had OSA. His daughter Abbie and wife Rebecca decided, in the midst of their grief, that they should celebrate his life with other pupils by staging a performance of “Oliver” and raising money for our Trust. We are extremely grateful to the school, and extend our most sincere condolences to Abbie, Rebecca and the rest of his family. Since then, a team of people, made up of members of the school community alongside the Huxley Binns family are running the Nottingham 5km Run or Dye race on the 11th October. The team, Gary’s Rainbows, was put together by Rebecca and the funds raised will also be donated to SATA to help us continue our work. This heart-rending story illustrates two of the most important characteristics of the human spirit. The first is to carry on in spite of all the adversity that life throws at you. Secondly, the ability to use tragedy as a way of helping others and preventing avoidable deaths. We shall use the funding to help our leaflet campaign. Leaflets are now distributed to 60 Sleep Clinics, fulfilling our role to raise awareness, to educate, and advise potential patients and their fami-lies about sleep apnoea.

UK Government Publishes Shocking Life Expectancy for Untreated OSAIf the previous paragraph challenged you in terms of the loss of such a young man, it links to a recent official confirmation of the potential health conse-quences of OSA. In an excellent press release issued by the DVLA on Oct 18th last year, basically inform-ing people more precisely about the road safety risk that untreated OSAS drivers can cause, a short sentence seems to have been added almost as an afterthought, which underlines officially for the first

time, just how serious untreated OSA is to overall life expectancy (https://www.gov.uk/government/news/motorists-warned-about-dangers-of-untreated-obstructive-sleep-apnoea-syndrome). It states quite simply “It can also reduce your life expectancy by 20%.” For men in the UK this means up to 15 years and for women up to 17 years lower life expectancy. This is twice the risk from smoking 20 cigarettes a day, all things being equal (height, weight, lifestyle, diet, etc.). So, if you are struggling with your CPAP therapy and thinking of giving up, or if your partner fails to recognise that they have a major health problem, this is all the evidence you need. We will continue, with your support, to raise awareness of the risks of OSA, as there are still an estimated one million people undiagnosed or treated in the UK. It is a shame that, with such a focus on smoking (and rightly so), by comparison the risks of untreated OSA receive scant public health attention. Working with our partners in the Obstructive Sleep Apnoea Partnership Group, initiatives are being prepared to address the road safety risk of untreated drivers, and SATA will be pushing for OSA to be recognised as a major public health issue.

Northern SATA Conference – Help Needed to Assess ViabilityAs the membership of the Trust grows, especially in the north of England, we are increasingly aware that an Oxford-based Conference is not easily accessible for all members. Therefore, we are investigating the possibility of holding another Conference next year in either Leeds or Manchester, as well as the AGM in Oxford. The idea is to mirror the arrangements, duplicate the presentations and add items pertain-ing to the locality. This is dependent upon us finding similar facilities to those we have at the John Radcliffe Hospital Academic Centre, not necessarily with the same capacity of 300 delegates, but we also need the availability of members who can give local support. If you are able to help and discuss the viability of this idea, please contact Chris Rogers, by email, phone or letter.

New WebmasterFollowing the sad loss of Peter Wherritt, a new Webmaster has been appointed to take on this vitally important role. Andy Bleakley is already at work updating the website working closely with Secretary Chris Rogers. The backlog of updates has taken place and the English Sleep Clinics list has been updated. While the Trust does its own research to make sure this list is up to date, you, the Membership, can play a

Page 4 | SLEEP MATTERS – SEPTEMBER 2014

Bill Johnston, Chairman, SATA

FROM THE CHAIRMAN

FROM THE CHAIRMAN

crucial role in making sure we have the correct details for your local Sleep Clinic. Any changes should be informed to Chris Rogers.

Membership Renewals.We do still have a number of members who have not renewed their membership, even some long term members, which is unusual. We appreciate that, despite London’s optimism (UK Gov & BoE) many of us are suffering for the continued national austerity programme. But, as we almost completely dependent upon your support to run the charity and meet the ever increasing demands upon our ser-vices, we do please request that your membership is kept up to date. On a brighter point, almost 50% of the former St. James Sleep Apnoea Support Group (Leeds) have renewed their subscriptions and we are delighted to welcome them into a fully contributing Trust membership.

Resources for Sleep Clinics.As I have referred to before, demands for our ser-vices are ever-increasing, from giving presentations to supporting hospital patient groups to supplying free of charge our comprehensive range of up-to-date leaflets. They are a fundamental part of our core role in both raising awareness of sleep apnoea, helping people to seek medical advice and assisting in man-aging the affliction. As you will see from the feature in this issue, they are considered indispensable by the staff at the Sleep Clinics, all faced with ever-tightening budgets and limited resources.

In the past 18 months we have supplied over 40 Sleep Clinics and this is becoming an increasing factor in our expense. Our current list of Clinics extends to supplying 60, and we see this growing by a significant figure this year, as NHS staff look for support from the only sleep apnoea total focus patient support charity in England. To that end, we are grateful to all those who have donated extra to their subscriptions, as this does allow us to go the extra mile. We have also produced some posters for Sleep Clinics to publicise the affliction, inform about our Medical Alert cards and to recruit Members. If your Sleep Clinic does not have a SATA poster or you feel your GP Clinic could use a poster, please contact Chris Rogers.

One World AllianceIn our last issue we did state an intention to contact the World’s largest airline group, the One World Alliance, to persuade them to introduce a consistent CPAP policy across the group, especially as one of its strong-est members, British Airways, is probably the best of all the airlines on dealing with CPAP patients. Sadly, as we were finalising the last edition, disaster struck OWA member Malaysian Airlines, one of the safest airlines in the world, with the mysterious loss of flight MH370. Then, just when we thought that it would now be appropriate to make contact, a second disas-ter struck with the shooting down of MH17 over the Ukraine. We are now, sensitively, contacting the OWA and will keep Members informed of any progress.

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Page 6 | SLEEP MATTERS – SEPTEMBER 2014

OBESITY, DIABETES AND BARIATRIC SURGERY

Obesity & diabetes cost the NHS £billions a year. The National Institute for Health and Care Excellence (NICE) draft guideline, out for consultation, has rec-ommended lowering the threshold of eligibility for weight loss surgery, and obese people with type 2 dia-betes should be offered weight loss (bariatric) surgery. If obesity levels continue to rise at their current rates, it is estimated that by 2050 the annual cost of treating obesity-related complications will be £50 billion, more than half the current NHS budget for England.

The expansion of bariatric surgery is controversial, but NICE says the move is supported by the latest evidence that surgery can reduce the effects of, or even reverse, type 2 diabetes. In particular, NICE advises that those with recent-onset type 2 diabetes who fulfil certain body mass index (BMI) criteria should have surgery.

Currently, NHS-funded bariatric surgery is offered to people with a BMI of 40 or more, or those with a BMI between 35 and 40 if they have another significant and possibly life-threatening disease that could be improved if they lost weight, such as type 2 diabetes or high blood pressure. Patients must have tried and failed to achieve clinically beneficial weight loss by all other appropriate non-surgical methods and be fit for surgery.

The updated draft guidelines include additional rec-ommendations on bariatric surgery for people with recent-onset type 2 diabetes, which include:

• Offering an assessment for bariatric surgery for people who have recent-onset type 2 diabetes and are also obese (BMI of 35 and over)

• Considering an assessment for bariatric surgery for people who have recent-onset type 2 diabetes and have a BMI between 30 and 34.9. People of Asian origin will be considered for surgery if they have a lower BMI than this as the point at which the level of body fat becomes a health risk varies between ethnic groups. Asian people are known to be particularly vulnerable to complications of diabetes.

What is Bariatric Surgery? Bariatric surgery consists of the use of a range of techniques (gastric band, bypass, sleeve gastrectomy and duodenal switch), all usually based on the principle of surgically altering the diges-tive system so it takes less food and makes the patient feel fuller quicker after eating.

The two most common types, usually performed using keyhole surgery are:

OBESITY, DIABETES AND BARIATRIC SURGERY

• gastric banding - a band is used to reduce the size of the stomach so a smaller amount of food is required to make someone feel full

• gastric bypass – where the digestive system is rerouted past most of the stomach so less food is digested, which makes the person feel full.

What are the risks? As with all types of surgery, weight loss surgery carries a risk of complications, which include:

• internal bleeding• a blood clot inside the leg (DVT)• a blood clot or other blockage inside the lungs (PE)

It is estimated the risk of dying shortly after gastric band surgery is around 1 in 2,000, and a gastric bypass carries a higher risk of around 1 in 100.

Other side effects include excess skin (removal is not normally available on the NHS), gallstones, gastric band slippage and psychosocial effects.

Main concerns? There is concern about how many people will be eligible for treatment under the new guidelines and how much it will cost, with Diabetes UK estimating that 850,000 people could be eligible for surgery; NICE expects the figure to be nearer 20,000 additional operations a year!

Bariatric surgery should only be considered as a last resort if serious attempts to lose weight have been unsuccessful and if the person is obese. Although bari-atric surgery can lead to dramatic weight loss which in turn may result in a reduction in people taking their type 2 diabetes medication, or in some cases needing no medication at all, this does not mean that type 2 diabe-tes has been cured. These people will still need to eat a healthy balanced diet and be physically active.

The recommendations also provide guidance on the use of very low-calorie diets (800kcal per day or less). These include:

• Not routinely using low-calorie diets to manage obesity

• Only considering very low-calorie diets for a maximum of 12 weeks as part of a multi-component weight management strategy with on-going support

• Giving counselling and assessing people for eating disorders or other mental health condi-tions before starting them on a very low-calorie diet – to ensure the diet is appropriate for them.

SLEEP MATTERS – SEPTEMBER 2014 | Page 7

OBESITY, DIABETES AND BARIATRIC SURGERY

The risks & benefits of surgery should also be discussed. Patients should be made aware that very low-calorie diets are NOT a long-term weight management strategy and that regaining weight is likely, but not because of a failure on their or their clinician’s part.

Dr Vicky Cooper, Principal Respiratory Physiologist & Co-chair of the Association of Respiratory Technology and Physiology (ARTP) Sleep commented that “Within this draft there is a brief mention of sleep apnoea but more noticeably there also still appears to be a clear lack of understanding of the cause of obesity, for example, there is much mention of low calorie diets but no mention of the problem of sugar and in particular fructose. The data in the studies within the document and many others show that calorie restriction per se does not work. All the studies reported here show regain of at least half the weight at the longest term follow-up.

The only successful diets are those that restrict fructose content. Low fat diets are particularly difficult to main-tain. It is difficult to have a low fat diet without it being high in fructose since reduced fat products get dosed with fructose and/or artificial sweeteners (many of which turn to fructose in the blood) to give back the flavour which is removed when removing the fat. Fructose can only be metabolised by the liver where it is rapidly turned to fat and causes insulin resistance. It is the principal cause of obesity, metabolic disease and heart disease. It has increased massively in our diets over the last 30+ years and is the major cause of the global pandemic in obesity and diabetes, yet not a mention of it is made in these guidelines”.

Bariatric patients have clinically significant OSA: The majority of bariatric surgery patients have clini-cally significant OSA, but report fewer symptoms than other sleep disorder patients, according to a study in the journal of Sleep and Breathing by lead author Dr. Sharkey. The report’s author warned that patients with severe obesity need evaluation for OSA as they under-report symptoms, and self-report measures are not an adequate substitute for objective assessment and clinical judgement when evaluating bariatric patients for OSA.

Bariatric surgery reduces OSA in severely obese patients: Bariatric surgery results in a reduction in the symptoms of OSA according to the results of a ran-domised clinical trial in Brazil & Italy (Aguiar et al). The findings of the study demonstrate that weight loss following bariatric surgery for severe obesity effectively reduces neck and waist circumference, improves pulmo-nary function, improves sleep architecture and reduces respiratory sleep disorders especially OSA via a reduc-tion of the apnoea-hypopnea index.

Therefore in Summary, Sleep services across the country should be prepared for an increase in pre-bariatric

surgery diagnostic sleep studies and subsequent CPAP set-ups!

Find out more:

Obesity: Identification, assessment and management of overweight and obesity in children, young adults and adults. National Institute for Health and Care Excellence (NICE) draft guideline for consultation

http://www.nice.org.uk/Guidance/GID-CGWAVE0682/Consultation

NHS choices: your health, your choices

http://www.nhs.uk/news/2014/07July/Pages/Offer-weight-loss-surgery-to-diabetics-says-NICE.aspx

Diabetes UK: http://www.diabetes.org.uk

NICE draft on obesity guidelines update 2014: http://www.nice.org.uk/guidance/GID-CGWAVE0682/Consultation

Sharkey et al:Subjective sleepiness and daytime functioning in bari-atric patients with obstructive sleep apnoea. Sleep and Breathing March 2013, Vol 17, Issue 1, pp 267-274

http://link.springer.com/article/10.1007%2Fs11325-012-0685-3#page-1

Aguiar et al:Obstructive sleep apnoea and pulmonary function in patients with severe obesity before and after bariatric surgery: a randomized clinical trial.

Multidisciplinary Respiratory Medicine 2014 9:43.http://www.mrmjournal.com/content/9/1/43

SATA’s “Weight Loss and Sleep Apnoea – The Facts” is available from many Sleep Clinics and can be downloaded from the SATA website,

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This year’s conference will take place at its regular venue, the Academic Centre, John Radcliffe Hospital, Oxford on 18th October from 09.30 until 16.30

New for 2014• Mask Corner – Bring your CPAP equipment if

you are having mask trouble and get it sorted by the specialist nurses

• Chat Shops will revert to previous arrangements; delegates will stay in the room allocated by surname, with three groups of presenters visiting in sequence over a 90 minute period.

• An earlier start time of 09.30, to give you more time to look at the manufacturers’ displays and the SATA stands, visit the Nurses’ Corner and the new Mask Corner or have a cup of coffee.

• Reception will be to the left of the main entrance to reduce congestion.

Morning SessionsWelcomeBill Johnston, Chairman, will welcome delegates and introduce guests.

Manufacturers’ New ProductsDebbie Smith, Advanced Nurse Practitioner and Lead at the Oxford Sleep & Non-invasive ventilation service, will present the latest products from each of the man-ufacturers, to help you decide which stand to go and see first.

OSA and Driving Initiatives UpdateProfessor John Stradling will provide a brief overview of the latest initiatives to improve both the quality and speed of diagnosis particularly for vocational drivers.

OSA ResearchProfessor John Stradling will bring you up to date on all that is going on in the world of sleep.

The Treatment of Sleep Apnoea in Older PatientsDr Alison McMillan, Research Fellow, National Heart & Lung Institute, Imperial College, London, will provide a brief overview of the four year research project the “Continuous positive airway pressure in older people with obstructive sleep apnoea syndrome (PREDICT): a 12-month, multicentre, randomised trial”. This is a follow up to Professor Mary Morrell’s presentation two years ago.

The evolution of diagnosis and treatment – moving it into the community Professor John Stradling will outline the potential future.

SATAday 2014 – BOOK NOWThe Case for Routine Pre-Operative OSA Screening of Surgical Patients Professor John Stradling will discuss whether all patients due an operation should be screened for OSA first, to avoid complications under anaesthetic.

AGMChairman Bill Johnston will preside over the AGM and discuss the progress SATA has made in the past three years.

Beginner’s BasicsDesigned to help those recently diagnosed, Dr Maxine Hardinge, Consultant in Respiratory and General Medicine, will take new patients through the basics.

ManufacturersAll the major manufacturers will be present with their latest offerings for you to look at – and even purchase if you feel so inclined. This year, so far, we are delighted to be supported by: Breas, DeVilbiss, Fisher & Paykel, Intus, ResMed, Respironics

Afternoon SessionsChat ShopsIn the afternoon Chat Shop sessions will cover:

• Medical problems.• Problems with CPAP equipment.• General problems and travel.

Each group will be chaired and facilitated by experi-enced helpline members or members of the Oxford Sleep Team and staff from other Sleep Units.

Summing UpThe final session will cover “Fundraising for SATA”, the Raffle and Top Tips results, followed by refreshments before departure.

GeneralBetween events you will be able to visit the exhibition stands of our supporters and the Trust, drop in at the Nurses’ Corner to discuss matters and also, sort out your CPAP problems at the new Mask Corner with nurse spe-cialists (NB. please bring your CPAP equipment). Reception will be even faster than last year by relocation to the left of the main entrance, making it more self-contained and eliminating congestion.SATA merchandise, tombola and raffle stands will be in the entrance hall and coffee and tea will be alongside, as in previous years.The new Mask Corner, the Nurses’ Corner and the man-ufacturers’ stands, plus catering for lunch will be in the main Tingewick Hall.

SATAday 2014 –BOOK NOW

Page 10 | SLEEP MATTERS – APRIL 2014

NEWS

NEWS Study Links Severe Sleep Apnoea with High Blood PressureResearchers in the USA have found that people with severe, untreated sleep apnoea are at an increased risk of high blood pressure. The study, published in the Journal of Clinical Sleep Medicine, involved 284 people with moderate or severe sleep apnoea, who were also on heart disease management programmes. The research-ers found that, of the participants prescribed three or more types of high blood pressure medications, 58.3% of those with severe sleep apnoea had elevated levels, com-pared with 28.6% in those with moderate sleep apnoea. They also noted that people with severe, untreated sleep apnoea were four times more likely to have high blood pressure that was resistant to medications, even when considering other relevant risk factors. Based on these findings, the researchers recommend that people with high blood pressure should discuss their risk of sleep apnoea with their healthcare provider. (http://www.aasmnet.org/jcsm/ViewAbstract.aspx?pid=29586)

Researchers Find a Link Between Sleep Apnoea and DiabetesA large Canadian study has found that people with sleep apnoea are at a higher risk of diabetes. The research, published in the American Journal of Respiratory and Critical Care Medicine, involved over 8,500 people with suspected sleep apnoea who were tested for the condi-tion between 1994 and 2010. At the time, they were either diagnosed as not having sleep apnoea, or were diagnosed with mild, moderate or severe forms of the condition. Researchers followed up on the participants to see whether they had developed diabetes by examining their

(with assistance from the European Lung Foundation http://www.europeanlung.org/en/ )

medical records. They found that, in the time between their sleep apnoea test and the follow-up period, 11.7% of the people with suspected sleep apnoea had devel-oped diabetes. In addition, they discovered that people with severe sleep apnoea had a 30% higher risk of dia-betes than those without the condition. The researchers hope that these findings could lead to more of a focus on diabetes prevention in people with sleep apnoea.(ht t p://w w w.atsjou rna ls .org /doi /abs/10.116 4/rccm.201312-2209OC#.UyotE10yAV)

Study Links Sleep Apnoea With Hearing LossA large study has connected sleep apnoea with hearing loss. The research was presented yesterday (21 May 2014) at the American Thoracic Society’s (ATS) International Conference. Almost 14,000 people were involved in the study, with each participant taking an in-home sleep apnoea test and having their hearing assessed.  The researchers discovered that, of those that took part in the study, 9.9% had at least moderate sleep apnoea. They then explored the relationship between sleep apnoea and hearing loss. Sleep apnoea was indepen-dently associated with a 31% increase in loss of hearing for higher-pitched sounds, a 90% increase in hearing loss for lower-pitched sounds, and a 38% increase in hearing loss at both levels. The study is slightly limited by the fact that the impact of sleep apnoea treatment on their findings was not taken into account. However, further research into why there appears to be a rela-tionship between the condition and hearing loss could provide useful insights.(http://www.thoracic.org/newsroom/press-releases/resources/Chopra.pdf)

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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.

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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

The Tale EndOde to CPAPI’ve Got A LeakI suffer from sleep apnoea - I need a machine to breathe,I also wear a plastic mask, it’s messy if I sneeze,The mask goes on a plastic tube and covers nose and mouth, Fortunately, it’s quiet, Unless the air leaks out!You get a gale up your eyes and a typhoon in your hair,So I readjust the fittings in desperate despair.I settle down to sleep again, the mask and tube in placeAnd drift off to the land of Nod - until I’m in disgraceA sharp dig in the ribs or back “You’re leaking dear”, he says(Odd! I can see no stuffing coming out of any place!)So again I re-adjust it, but by now I’m wide awake.Most nights, I sleep quite peacefully, but tonight “For heaven’s sake”!I get another blast of air - now the liner is awryAgain I re-adjust it, sometimes I could cryAll quiet now, now a blast of air a-blowing with a roar,My airways nicely open-and then HE starts to snore.I dig him squarely in the ribs; he gives a kind of snort.I long to say “you’re leaking dear” but feel I didn’t ought,He says I snore, I know I do, but I don’t hear myselfWhen I’m asleep and my mask behaves, I can sleep on a shelf.Most nights it does play ball with me, although I look like a nelly,With a mask and plastic tubing – faint smell of Savlon smelling,I feel like the thing from the hairy lagoon, wherever that may be,When I first saw my reflection, I thought “Gosh! Is that me?”So should you see a person with a liner, tube and mask,You know where I come from, so you don’t need to ask.I’ve christened my CPAP Albert, it seemed an easy name,I’m saddled with the thing for life - Oh what a rotten shame.I have to disconnect it if I need to have a wee,Or remove the mask and liner if I want a cup of tea.But it keeps my airways open, at least that’s what I’m told,I’m either getting past it, or else I’m getting old.I‘ve learnt to see it as a friend, especially when I sleep,But Oh, I dread those blinking words, “Love, you’ve got a leak!”

From A Patient!!!!!

CAN YOU HELP?Proposed new study looking at OSA and CPAP in patients having major surgery.We have had contact from the Sleep team in Newcastle, Dr Sophie West and Dr Simon Baudouin. They are planning a new research study to look at whether diagnosing OSA and treating it before planned major surgery is beneficial in terms of length of hospital stay and outcome following surgery. It is estimated that between 10 and 30% of patients having major surgery have undiagnosed OSA. Some studies show that having undiagnosed OSA can lead to more post-operative prob-lems, such as chest infections and respiratory issues. Other studies do not show these links. Any issues might be worse following surgery, because of the anaesthetic, pain killers suppressing breathing, as well as the type of surgery, such as abdominal surgery, can affect breath-ing. It is not known whether using CPAP before and after surgery makes a difference to surgical outcomes in people who are not known to have OSA. There are therefore no UK guidelines about whether people who are due surgery should have sleep studies or not, but some centres routinely request these in patients they are concerned about. The advice for people with known OSA having surgery is that they inform the surgeon and anaesthetist in advance and take their own CPAP machine to the hospital with them, for use after the operation. The Newcastle team would be very grateful for the help of SATA members in some aspects of the design of this study, before they apply for a grant from the Health Technology Assessment Programme. There is a question-naire at https://www.surveymonkey.com/s/G6KYWZX, which they would be grateful if you could complete. They will be presenting the outline of the study and the survey results at the SATA day in October. If anyone is particularly keen to be the patient repre-sentative on the Trial Steering Committee for this study, which would mean meetings approximately 4 times a year (usually by group telephone call), perhaps you could contact Sophie.west@nuth.nhs.uk for more details.

© Sleep Apnoea Trust Association 2014