Obstructive
sleep apnoea
Project
Year 2
Report
Obstructive Sleep Apnoea
Project
Year 2 Report
This report summarises what the BLF’s OSA project has achieved in its second year,
from February 2012 to January 2013.
It also provides a summary of the project’s impact since it began in 2011, and our
plans for the third year.
Contents
Page
Foreword
5
Section 1
6
Background
Project Development
Aim and objectives of the project
Summary of Year 1 (February 2010-January 2011)
Section 2
9
Year 2 (February 2011-January 2012)
Year 2 plans Year 2 activities
Summary of achievements in Year 2 Impact of BLF OSA campaign Supporting statements
Section 3
18
Looking ahead
Plans for Year 3 (February 2012-January 2013)
Section 4
19
Foreword
Dr Penny Woods, Chief Executive, British Lung Foundation
We have made significant progress with the OSA project during its first two years, and this would not have been possible without the engagement of a wide range of stakeholders, who have supported, challenged and partnered us on the development and management of our programme. These stakeholders include:
• patients with OSA and their families who have come forward to tell their story for our press and media campaign, as well as advising on our patient information and attending our meetings;
• staff in sleep clinics who have shared their expertise and provided guidance on identifying the issues they face every day;
• experts in OSA and sleep medicine who have provided medical expertise and guidance, and been a critical friend to the BLF, for example in the development of our policy campaign;
• professional bodies and organisations who have worked in partnership with us to raise the profile of OSA at a national level (See section 4);
• Sleep Industry partners who have supported and funded the campaign, particularly our founding partner Philips Respironics, and our other significant funding partner, ResMed.
However, we are not complacent and recognise that there is still a huge amount of work to be done to raise awareness of OSA, to improve the lives of people with OSA in the UK, and to ensure that OSA remains a priority in the years ahead. I hope you enjoy reading this report and that you will continue to help us make a difference.
Dr Martin Allen, Respiratory Physician, and DH clinical lead for OSA in England
What a successful year with more to come - the only way to describe what has been achieved by the BLF Obstructive Sleep Apnoea campaign.
In a short space of the time the awareness of OSA has increased, especially in the media so that patients are more likely to present to their GP, and the soon to be released GP advice booklet will add to this recognition.
Perhaps the greatest aspect of raising the profile will be identifying “hot spots” across the country where associated conditions such as diabetes, high blood pressure and obesity can be linked to low diagnostic or treatment rates, helping to identify the missing thousands of patients who have OSA but are neither recognised nor treated. The BLF have just completed this project and the results are eagerly awaited.
Identifying patients with suspected OSA and signposting them and their families to appropriate services is only one aspect of care. The resources to diagnose and offer the most appropriate treatment in a timely manner need to exist, and delay may put lives and jobs at risk. Further raising the profile with the government and the Department of Health is essential, so the BLF OSA patient charter which highlights what should happen is a big step towards this, especially when launched with the mapping exercise to parliament, planned for April.
Could we make more progress? It’s difficult to see how, but in the forthcoming year change is likely to accelerate. Obstructive sleep apnoea is now firmly on the map thanks to the hard work of the BLF.
Section 1
Background
Project Development
OSA: the issues -
Up to 2% of middle-aged women and 4% of middle-aged men have symptomatic obstructive sleep apnoea (OSA) – this means they have apnoeas (breathing pauses) when asleep and are also very sleepy when awake. Up to 3% of children have OSA, with prevalence much higher in children with certain disabilities / conditions e.g. Down’s syndrome. Having undiagnosed OSA increases the risk of high blood pressure, and is associated with other serious conditions such as strokes and heart attacks, type 2 diabetes and depression.
OSA affects men, women and children. You are more likely to have OSA if:
• You are a man and middle-aged;
• You are a woman past your menopause and not on HRT; • You are overweight, with a neck size of 17 or over;
• You have a small airway, a set back or small lower jaw, large tonsils or a large tongue. • You are a child with a particular condition / disability or are overweight.
Untreated OSA poses a serious economic health care burden. OSA can seriously affect the quality of life of the patient and their immediate family. Driving when sleepy is associated with 20% of road traffic accidents, and driving with untreated OSA increases the risk of RTA by 3-7 times. Studies suggest a particularly high rate of OSA in truck drivers and estimates of prevalence in the US range from 28% to over 50%. Up to 80% of people with OSA have not been diagnosed.
Benefits of successful treatment
• Benefits to the patient – health and quality of life can be drastically improved
• Benefits to their loved ones – better sleeping at night for partners and a better quality of life • Benefits to health care costs – reduced health care burden
• Benefits to society – reduction of road traffic accidents
Barriers to treatment include:
• Lack of awareness of OSA amongst the general population • Lack of undergraduate training for medical and dentistry students • Lack of recognition of the key symptoms by general practitioners • Lack of widespread screening based on the key symptoms
• Possible referral bias towards middle-aged overweight men amongst general practitioners • Lack of standardized, accredited training for sleep medicine health care professionals • Lack of standardized, specified service provision
• People not coming forward: embarrassment; fear of losing driving licence; not knowing there is treatment
Addressing these issues:
The British Lung Foundation (BLF) teamed up with sleep therapy solutions provider Philips Respironics on a three-year project, aimed at raising awareness of OSA among the public and health care professionals, and to improve diagnosis of the disorder.
Judy Harris joined the BLF to take up the new post of OSA project manager, having previously worked as a speech and language therapist, a service manager for children with disabilities, and a project and team manager in a local authority.
Initial aim and objectives of the project
Aim:
To enable the British Lung Foundation to proactively develop a programme of research, canvassing, communications, and support for OSA.
Objectives:
1. To promote OSA as a strategic priority for the BLF, Department of Health and governments across Scotland, Wales and Northern Ireland;
2. To help increase awareness of OSA among the public and health care professionals; 3. To help to find undiagnosed people with OSA and improve their quality of life; and 4. To help to improve OSA services across the UK.
Summary of Year 1 (February 2011-January 2012)
1.
To promote OSA as a strategic priority for the BLF, Department of Health and governments
across Scotland, Wales and Northern Ireland
Engaging key stakeholders in sleep medicine. This included professors, consultants, respiratory nurses, physiologists, technicians, researchers and epidemiologists, brought in to help inform the British Lung Foundation’s work. More than 2,000 professionals received information about the project, and the BLF began to send out an OSA news bulletin to health care professionals every two months.
Involvement with sleep medicine organisations and groups, including professional bodies, patient groups and other voluntary organisations. These included the Association of Respiratory Technology and Physiology, the British Sleep Society, the British Thoracic Society, NHS Lung Improvement, the Association of Respiratory Nurse Specialists, the British Society of Dental Sleep Medicine, the Sleep Apnoea Trust Association (and affiliated patient groups across the country), road safety charity Brake and The Stroke Association. These partnerships helped to position the BLF as one of the leading organisations for awareness-raising, provision of information and support and campaigning to improve services.
Boosting the BLF’s profile in the field of OSA. This was achieved through attendance and networking at a number of relevant conferences and courses; delivering presentations across the BLF and to partner organisations and groups; membership of relevant national and international bodies, and publication of articles in relevant journals.
Developing support systems for the project. These ensure the project remains a priority and has maximum strategic impact. The OSA Project Manager set up an advisory group (comprising eminent experts across a range of OSA
specialist areas, patients and a carer); a sleep industry forum (comprising companies specialising in sleep medicine products and services); the BLF OSA working party (comprising staff from across the organisation); and regular update meetings with the project’s founding funder Philips Respironics.
Development of a portfolio of written material. This ensures the project is informed by the most up-to-date and relevant resources, and includes a series of reports on issues associated with OSA, and reports from interviews and meetings with more than 30 health care professionals and more than 50 patient case studies.
Drafting of the OSA Charter. The 10-point charter was drafted; it forms the core of the OSA campaign and calls on governments, sleep services providers, primary care practitioners and commissioners to improve awareness and treatment for patients with OSA.
2. To help increase awareness of OSA to public and professionals
Media and events.158 OSA awareness events were delivered during the BLF’s 2011 Breathe Easy Week by Breathe Easy volunteer groups, and 65 pieces of media coverage were generated from this, resulting in an advertising equivalent of more than £92,000. The BLF became the charity of choice for major national media coverage about OSA, including the BBC and The Daily Mail. Our speedy responses to less favourable media coverage of OSA and treatment led to appearances on the Chris Moyles Breakfast Show and a lead feature in The Daily Telegraph, and our case studies
appeared on many national and regional television and radio programmes throughout the year. Results from two major surveys that were conducted among more than 5,500 people helped the BLF shape its OSA campaign. These surveys indicated that approximately 50% of men and 60% of women had heard of OSA.
The BLF’s obstructive sleep apnoea website pages.These were transformed with a huge amount of new material, including the Epworth Sleepiness Scale, a video of a man having an apnoea in his sleep, updated information about symptoms, assessment, treatment and management, and information for drivers and GPs. The ‘top tips for GPs’ page was sent to all primary care practitioners in the Primary Care Respiratory Society. The NHS Choices website now has a link to the BLF’s OSA pages (via the Epworth Sleepiness Scale) from its OSA section.
Patient health information. The BLF’s patient information on OSA was reviewed, with significant input from key stakeholders including patients and clinicians, and a new leaflet published. This is available to all sleep clinics and is used by the BLF as a resource.
Information for other stakeholders. A series of PowerPoint presentations was developed for use across the BLF to ensure consistent messaging about the condition and the project.
3.
To help find undiagnosed people and improve their quality of life
Research into at-risk groups. This took the form of health care provider interviews and in-depth study of research papers, which helped to guide the campaign by highlighting that OSA can affect those outside of people’s perception of a stereotypical sufferer.
Diagnostic waiting times. There was an increase in NHS diagnostic waiting times during the first year of the project. There is a possibility that this is linked to the first year’s work: an increase in awareness could have led to a boost in referral rates, resulting in longer waiting times.
Online sleep test. The Epworth Sleepiness Scale test on the BLF website was taken by more than 21,000 people between June 2011 when it was launched and January 2012, potentially identifying 1,200 people with the condition, who may not otherwise have known about it.
4. To help to improve OSA services across the UK
Identifying gaps in service provision. The BLF gathered a vast amount of information from patients, health care professionals, and research and literature about what gaps there are and about what improvements are needed. This enables the campaign to have maximum impact within the resources available.
Focus on driving. OSA and its potential consequences for drivers if untreated was a focus during the year, and the BLF has worked to highlight the importance of this key issue.
Section 2
Year 2 (February 2012-January 2013)
For the project’s second year, the project priorities were agreed with the project’s advisory group, the project funders and also amongst the relevant teams across the BLF.
Funding for the project in Year 2 was provided once again by our founding partner Philips Respironics, and for the first time, the BLF also received funding from ResMed to support the project.
Year 2 plans
1. To promote OSA as a strategic priority for the BLF, Department of Health and governments
across Scotland, Wales and Northern Ireland
Activity to achieve this was to include:
• Launch and roll-out of the 10 point BLF OSA charter, including a major Communications campaign focussing on between 1and 3 key points in the charter, including raising the profile of OSA with the Department of Health and improving awareness of OSA in the general population
• Communications strategies on press / media and on parliamentary / policy work, based on different elements of the charter
• Planning for a parliamentary event – e.g. round table or dinner
• Produce a scientific poster for the British Thoracic Society conference 2012, possibly about the online Epworth Sleepiness Scale
• OSA targets to be included in corporate plans for teams across the BLF including Communications, Fundraising, nations and regions
• Local campaigning and influencing OSA to begin across the UK
• Work to ensure that OSA is discussed at government level
• Support mechanisms: OSA Advisory Board, Sleep Industry Forum and working party to continue to support the project through meetings and other activities
• Develop plans for the third year of the project, focusing on awareness raising to targeted groups
• Produce a BLF report on OSA in children for use across the organisation to ensure consistent messaging
• Deliver presentations and run stands at national conferences
• Upload video of OSA case study patient being interviewed
2. To help increase awareness of OSA among the public and health care professionals
Activity to achieve this was to include:
• Promote and disseminate the new BLF OSA leaflet, especially targeting sleep clinics not currently using BLF materials
• Produce a campaign poster to increase public awareness – to be sent to sleep clinics, GP surgeries and distributed as widely as resources allow
• Ensure OSA information is included on noticeboards managed by BLF in hospitals and other settings
• Produce the OSA patient information pack and with regional and national teams to launch and disseminate the pack – to include signs and symptoms, referral, assessment, treatment, after-care / management and life-style changes
• Plan and deliver pilot awareness campaigns in a selected targeted area (one in year 2 and one in Year 3 of project)
• Develop a package for work-place events
• Produce information packs for primary care including a GP fact sheet, OSA leaflets and awareness poster and distribute in a systematic way e.g. during targeted campaigns
• Produce articles in a major GP journal, a major women’s magazine and a weight-watching magazine
• Ensure the BLF website information on OSA is linked to other major websites to help place the BLF at the forefront of web traffic for OSA queries
• Look into the feasibility of Google ads
• Look into the feasibility of putting Epworth on facebook and Twitter
• Produce a glossary of terms about OSA and upload this onto the BLF website
3. To help to find undiagnosed people with OSA and improve their quality of life
Activity to achieve this was to include:
• Work with Helpline team to develop OSA helpline information and telephone screening for OSA on the helpline
• Do an online poll on OSA via the web community
• Ensure BLF OSA information is widely available through a variety of sources and that information dissemination is planned methodically
• Ensure that people attending awareness campaigns who are screened as being at risk of OSA are advised accordingly and followed up using a tracking system
4. To help to improve OSA services across the UK.
Activity to achieve this was to include:
• Complete a mapping / audit exercise and produce a campaign paper across the 4 nations and targeting groups at risk of OSA. Disseminate findings of the report across the BLF
• Plan, deliver and produce findings from a BLF OSA patient survey – aim for this to be completed by 500 people with OSA about the impact of OSA on their lives and their experiences along the care pathway
• Work to ensure OSA is on the agenda at Breathe Easy network days and other key meetings
• Ensure BLF OSA campaign messages (especially the charter) are discussed at key meetings
• Look into the feasibility of developing an online forum for people with OSA or a penpal scheme, and deliver these support systems as appropriate
• Develop a “model of care pathway”, with examples of clinical practice to share with health care professionals
• Look into costs and feasibility of commissioning health economics research re OSA
Year 2 activities
During the year February 2012 to January 2013, the following activities took place
1. To promote OSA as a strategic priority for the BLF, Department of Health and governments
across Scotland, Wales and Northern Ireland
• Teams across the BLF were involved in planning and delivering the OSA programme of activities, including press and campaigns, design, website, fundraising, regional teams in England and teams in Wales, Scotland and Northern Ireland. Meetings were held with key stakeholders in different nations and regions throughout the year, in order to support the campaign and to help us position the BLF as a key partner in OSA. These included the OSA clinical leads in England and Northern Ireland, the Department of health OSA project manager, a GP who has set up an OSA screening programme, a respiratory physician who has led on the development of a local OSA commissioning structure and service agreement, a company who screen their drivers for OSA, and a leading health economist in Wales. The project manager attended regional
• The 10 point BLF OSA charter was launched in July 2012, and an extended version for specific audiences was also developed. The charter is used as the BLF’s primary campaigning tool. The main messages in the charter are that:
- The BLF believes that people with OSA and their families have a right to access screening, diagnosis, treatment, information, and on-going support;
- The BLF calls to governments in the UK to make OSA a priority by increasing awareness levels; data collection; research;
- The BLF encourages employers to arrange for employer screening for those employed as drivers or in vigilance-critical roles
• Communications strategies on press and media and on parliamentary and policy work, based on different elements of the charter were developed and campaigns launched:
- The policy and parliamentary campaign was also very successful, and key achievements were: All MPS were emailed when the BLF OSA charter was launched
Attendance by the BLF at all 3 major party conferences in England, resulting in over 20 meetings with MPs
Believes that people with OSA and their families have a right to: OSA screening, through primary care wherever possible;
a speedy and accurate diagnosis in a sleep clinic, wherever they live in the UK; access to appropriate treatment and to a comprehensive specialist sleep service if needed, wherever they live in the UK;
appropriate information and ongoing support for the management of the condition, according to agreed national standards and provided by suitably qualified and trained staff; and timely and relevant information on the implications of an OSA diagnosis for vigilance-critical job roles, and fast-tracking for diagnosis and treatment if people with OSA drive for a living.
Calls on governments across the UK to: make OSA a national priority;
increase awareness of the symptoms and dangers of, and issues that surround, OSA among medical professionals, employers, the general public and those at greatest risk; ensure collection of comprehensive data to enable commissioners and service planners to provide effective services; and
encourage investment in research, including clinical trials, recognising the potential cost savings and improvements to quality of life that could be made.
And encourages employers to:
arrange for all staff who are employed as drivers or in other vigilance-critical roles to be screened for OSA.
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The British Lung Foundation…
Obstructive sleep apnoea
Charter
(OSA)
Registered charity in England and Wales (326730) and in Scotland (SC038415). Leading the fight against lung disease
73-75 Goswell Road London EC1V 7ER T 020 7688 5555 F 020 7688 5556 enquiries@blf.org.uk Helpline 03000 030 555 www.blf.org.uk
A report was written for the APPG on cardio-vascular outcomes
Involvement in the DH OSA working group on OSA, and the resulting scoping paper for the DH respiratory programme board, in which it is recommended that support is given to the BLF’s campaign and priorities A parliamentary reception was planned, due to take place in Spring 2013
Questions on OSA have been tabled in parliament in England, Scotland and Wales, and relevant ministers Involvement in the development and production of the IQIPS Respiratory and Physiology Guidelines
• A scientific poster for the British Thoracic Society conference 2012 was produced, highlighting the results of the BLF’s online Epworth Sleepiness Scale
• The OSA Advisory Group met 3 times, and continued to provide the project with expert and patient-led advice and support, with several new members joining the group to ensure it represented key geographical and specialist areas
• The BLF hosted two meetings for Sleep Industry colleagues to meet, share best practice, and hear about developments in the project and at government level
• A BLF report on OSA in children was completed, and patient information on OSA in children was drafted, which was going through Information Standard approval at the time of writing
• The project was represented at various national and regional conferences and meetings, particularly: Association for Respiratory Technology and Physiology conference – the conference in 2012 included
references to the BLF project and in 2013. The project manager is to speak about the impact of the project to date
The project manager attended the Scottish Sleep Forum in March and September, giving a full presentation in March with an update in September
We ran a stand at the British Sleep Society conference, where our work was referenced during some of the presentations
We delivered a presentation and ran a stand at the Humber Sleep Apnoea Support Group meeting We attended a meeting of the Welsh Sleep Group
Our work was showcased at a press event in July at Wimbledon organised by Philips Respironics, which we used as a platform to launch the OSA charter
We ran a stand and gave a presentation at the Leicester Sleep Apnoea group, and supported the local hospital to set up an OSA support group
We ran a stand at the Yorkshire Thoracic Society meeting We ran a stand at a national study day for respiratory nurses We delivered a staff engagement session at ResMed
At the British Thoracic Society conference, we ran a stand, delivered a presentation about the OSA project, presented a scientific poster about our online Epworth Sleepiness Scale results and our work was mentioned in several key presentations
• The BLF underwent a re-brand and new website launch over the year and new OSA pages on the BLF website were created. During this transition time an organisational decision was taken not to upload any new content, therefore a new video was not uploaded. However, new diagrams and a new layout meant that the information online was visually much enhanced: www.blf.org.uk/Conditions/Detail/OSA
2. To help increase awareness of OSA among the public and health care professionals
• We produced, promoted and disseminated a range of BLF OSA information materials: The new BLF OSA leaflet, with Information Standard accreditation, was promoted through the BLF website and also by features in the newsletters of the Association for Respiratory Technology and Physiology, and the British Sleep Society. The BSS also supported the BLF in sending out 500 hard copies to 50 sleep clinics across the UK. Orders of the OSA leaflet through the BLF website increased from 7,500 per quarter to over 10,00 per quarter
A campaign poster was designed using the same strap line and “Triple S” symptom list to increase public awareness – this will be sent to sleep clinics, GP surgeries and distributed as widely as resources allow. We were unable to distribute this during year 2 of the project due to staff changes in the Communications team and the BLF re-brand, which delayed production of new materials
• A comprehensive OSA patient information pack was written, including sections on signs and symptoms, referral, assessment, treatment and living with OSA. Dissemination will occur early in Year 3 of the project
• The pilot awareness campaign was planned in detail and will be delivered early in year 3 of the project in a targeted area in England – this campaign will include a range of awareness activities, events and meetings and will include the dissemination of BLF OSA information
• A model for delivering training and awareness activities tailored for
work-place settings was developed, with a view to this model being piloted in Year 3 of the project
• Due to the BLF re-brand and new website, work on developing new adverts and applications such as an Epworth app and a Google ad were postponed
• An information pack for GPs was created, including the re-branded OSA leaflet, the awareness poster and a new GP OSA guide. The GP guide will be launched at a national respiratory learning event in February 2013. Planning for distribution of this pack took place.
• The press and campaigns team ran a very successful campaign
Press coverage – a total of 34 pieces of coverage were achieved by the press and campaigns team, including a range of different media and targeted at a range of audiences. 17 online pieces were placed, including the Mail online, and NHS Choices; for 6 days our OSA campaign featured on the NHS homepage. 6 pieces of trade coverage were placed, including British Heart Foundation, a health and safety journal that reaches fleet drivers, and articles in health care professional newsletters (Association for Respiratory Technology and Physiology and British Sleep Society). 2 pieces of major national press and 6 pieces of regional coverage were placed. The total circulation potential for this coverage was 216,646,548, and the advertising equivalent value was £152,342.82
The BLF OSA e-action which was launched in late 2012 has resulted in 336 parliamentarians across England (150), Scotland (112), Wales (60) and Northern Ireland (14) being contacted about OSA by their constituents Our facebook posts about OSA have been viewed 9,545 times
• The BLF OSA web pages and OSA project have been featured and supported by other major websites and organisations, including NHS Choices, British Heart Foundation, Diabetes UK, the Stroke Association, The Association for Respiratory Technology and Physiology and the British Sleep Society
• A glossary of terms has been written and will be launched with the OSA patient pack in 2013.
3. To help to find undiagnosed people with OSA and improve their quality of life
• The BLF Helpline staff were trained in OSA and supported to develop a simple telephone screening model, based on the BLF Triple S and Epworth Sleepiness Scale
• An online poll was conducted with members of the BLF web community, with the following results:
- 200 people responded to the web community poll asking about OSA.
- 24% of respondents had not heard of OSA.
- 64% of respondents had heard of OSA but did not have it.
- 12% of respondents had been diagnosed with OSA.
- 33% of respondents diagnosed with OSA had good training in how to use their equipment.
- 50% of respondents diagnosed with OSA were happy with their treatment.
- 17% of respondents diagnosed with OSA were not happy with their treatment.
Take Action
on OSA
to write to your local representative Click here Obstructive sleep apnoea A guide for GPs www.blf.org.uk/osaDoes the patient snore loudly (louder than talking or loud enough to be heard through closed doors)? Y/N
Does the patient often feel tired, fatigued, or sleepy during the day? Y/N
Has anyone observed the patient stop breathing during their sleep? Y/N
Does the patient have, or is the patient being treated for, high blood pressure? Y/N
Does the patient have a BMI of more than 35? Y/N Age. Is the patient older than 50? Y/N
Is the patient’s neck circumference greater than 40cm? Y/N Gender. Is the patient male? Y/N
S T O P B a n g
Scoring:Y ≥ 3 = high risk of OSA Y < 3 = low risk of OSA
British Lung Foundation, 73-75 Goswell Road, London EC1V 7ER. Registered charity in England and Wales (326730) and in Scotland (SCO38415) © British Lung Foundation 2012
Screening tool for OSA: STOP-Bang
Developed by Chung F, Yegneswaran B, Liao P, Chung SA, Vairavanathan S, Islam S, Khajehdehi A, Shapiro C: STOP Questionnaire A Tool to Screen Patients for Obstructive Sleep Apnea, 2008.
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One person in five in the UK is affected by lung disease. The British Lung Foundation offers hope and support at every step, so that no one has to face it alone. We campaign for positive change in the nation’s lung health. We fund vital research into new treatments and cures. We are the UK’s lung charity.
Leading the fight against lung disease.
- 33% of respondents diagnosed with OSA receive regular check-ups.
- 33% of respondents diagnosed with OSA did not receive regular check-ups.
• The BLF OSA leaflet was widely publicised and distributed – batches were sent out to 50 major sleep clinics in the UK, as detailed above, and the leaflet was promoted by other professional bodies, such as the Association for Respiratory Technology and Physiology, and the British Sleep Society. The distribution of the OSA patient pack, awareness poster and GP OSA guide were planned with the Communications team and all will be launched in spring 2013.
• Detailed planning took place for the delivery of the first OSA awareness campaign in a targeted geographical area. The delivery of the campaign was delayed due to difficulties in recruiting a project officer – an officer was recruited in January 2013, to start in February. The campaign will consist of community awareness and screening events, meetings with key stakeholders, and distribution of BLF OSA awareness and information materials.
• There were 45,252 visits to the BLF’s OSA website pages during the year.
BLF Online Epworth Sleepiness Scale – the following charts show the number of Epworths taken and some analysis of the results. There are two lots of date presented, firstly the numbers relating to year 2 of the project, and secondly numbers relating to the total numbers taken since the Epworth was uploaded onto the BLF website in 2011.
Results for the year (1/2/2012 - 31/1/2013)
Total Epworths taken 11053
Males (percentage of total) 5016 (45%)
Females (percentage of total) 5276 (48%)
Unknown gender (percentage of total) 761 (6.9%)
Results of tests by sleepiness
Number scoring 11 or over (percentage of total) 4835 (44%)
Normal <11 6218
Mild 11-14 2593
Moderate 15-18 1562
Severe >18 680
Results so far (up to 31/01/2013)
Total Epworths taken 31382
Number scoring 11 or over (Mild, Moderate or
Se-vere) 12381 Percentage of total 39% Males 5016 Percentage of total 16% Females 5277 Percentage of total 17% Unknown gender 21089 Percentage of total 67.20%
Results of tests by sleepiness
4. To help to improve OSA services across the UK
• An OSA mapping project was completed, for which the BLF commissioned specialist mapping company Lovell Johns to create an innovative set of maps, showing the location of known sleep services in the UK, and highlighting potential hotspots of obstructive sleep apnoea (OSA) prevalence. The set of maps produced show known sleep clinics by health area, and also show prevalence of OSA risk factors across the UK (health areas and parliamentary constituencies):
• Age – OSA is more prevalent in older people (Young et al, 2002)
• Hypertension prevalence - hypertension can be caused by OSA (Levy et al 2011)
• Obesity prevalence - Obesity is present in about 40% of OSA patients (Levy et al 2011)
• Type 2 diabetes prevalence - recent reports have indicated that the majority of patients with type 2 diabetes have OSA (Levy et al 2011)
• Sex – OSA is more common in men than women (Young et al 1993).
The results are being analysed by researchers at Guy’s and St Thomas’ Hospital and the results will be written into a report for publication later in 2013. The mapping results will be revealed at our parliamentary reception in April, and used in the BLF’s parliamentary campaign, media campaign, local influencing programmes and awareness campaigns. This is the first time that potential OSA risk has been mapped in the UK.
• The OSA patient survey was planned, and a pilot survey took place with 3 sleep clinics in order to test out the questionnaire and the survey process. The aim of the survey is to find out what people diagnosed with OSA and who had experienced symptoms of excessive daytime sleepiness (EDS) think about their condition, and the treatment and care they have received. During the pilot, 44 people with OSA completed the questionnaire. From this small sample, some interesting findings emerged:
• 43% of people had heard of OSA before their diagnosis
• 75% of people went to their GP about their symptoms. 45% of people only needed to see their GP once before referral, and 30% went more than once (25% did not answer). 7% went 5 or more times before referral
• 50% of those who were prescribed continuous positive airways pressure (CPAP) treatment found CPAP easy to get used to straight away, 23% said it took up to 6 months to get used to it, and 14% could not get used to it
• 41% are given a regular check-up appointment, 32% can ring in if they have any problems and 2% receive no support at all to manage their condition
• Prior to treatment, only 11% said that they slept well at night (agreed or strongly agreed). After treatment, 64% said they sleep well at night (agree or strongly agree).
• Only 5% of people said that their quality of life had been excellent before treatment. After treatment, 45% said their quality of life was excellent.
• Before treatment, 11% felt happy. After treatment, 48% are happy.
The full survey, aiming to collate findings from 5,000 people with OSA in the UK, will take place later in 2013. This will be the biggest survey of people with OSA ever undertaken in the UK.
• OSA, and the OSA project, were discussed at a number of BLF meetings: The OSA project manager, a respiratory nurse colleague in the north region, and development officers (especially in London and the South East) visited many Breathe Easy groups during the year to deliver presentations about OSA and the BLF’s project. The OSA project manager also met with BLF regional committees in London and the South East and the North regions.
• BLF OSA campaign messages were discussed at key meetings such as the Department of Health OSA scoping project meeting, and the British Thoracic Society Winter conference 2012. Continued support of the BLF’s OSA work was recommended in a report presented to the DH Respiratory Programme Board in autumn 2012.
• The BLF web community featured several OSA streams during the year and the OSA programme manager posted blogs and responses on the BLF online community pages
• An OSA model of care pathway was drafted. This document sets out evidence along the patient pathway (signs and symptoms, referral, assessment, treatment, management) from BLF findings, literature and clinical practice, which highlights the need for OSA to be made a priority and for equitable services to be available across the UK. The BLF then put together a project brief to develop this work into a more robust report focussing on OSA health economics, and we identified health economists who were interested in being commissioned to carry this out. We approached potential funders to support the project, with a view to carrying out this piece of work in 2013.
Summary of the BLF’s OSA project achievements in Year 2
The 10 point OSA charter was launched
Successful OSA media campaign was delivered
OSA e-action was launched (over 320 parliamentarians contacted so far)
Successful OSA parliamentary and policy campaign was run (all MPs contacted; over 20 MPs engaged; parliamentary reception booked)
Involvement in strategic meetings with Department of Health
Scientific poster on Epworth Sleepiness Scale results presented at British Thoracic Society conference
New information on OSA in children produced ready for launch
New guide for GPs produced ready for launch
New awareness poster produced ready for launch
New 3 part OSA Patient Pack produced ready for launch (What is OSA? Do I have OSA? Living with OSA)
OSA leaflet re-branded and OSA information on website updated to follow patient pathway
Presentations about OSA at a range of meetings, and OSA information stands at conferences
BLF OSA project supported / publicised by NHS Choices, Department of Health, British Thoracic Society, Diabetes UK, Stroke Association, British Heart Foundation, Association for Respiratory Technology and Physiology, British Sleep Society, Scottish Sleep Forum, Welsh Sleep Meeting
The OSA mapping project was completed, with the results to be written up and disseminated
The OSA model of care pathway was drafted and health economics project planned
The OSA patient survey was piloted, with the full survey due to take place in 2013
The OSA awareness campaign in a targeted geographical area was planned, for delivery in 2013
Impact of OSA campaign
• In the first 2 years of the programme, the BLF has established itself as the leading charity working on OSA in the UK
• The BLF has become more involved in OSA at local and national levels across the UK, working with individual patients, patient groups, health care professionals, commissioners, governments, sleep industry and professional organisations
• THE BLFs work on OSA, particularly the OSA charter and other key reports and documents, has become heavily used in DH scoping work for improvements to OSA services in England, and the BLF has encouraged and supported nations and regions to work together more to improve services
• Expert health care professionals have endorsed the programme, and there are better links between the BLF and experts in OSA
• The BLF has established robust OSA press and parliamentary campaigns; more press coverage has been achieved reaching wider and more diverse audiences, and the parliamentary contact campaign means all MPs were emailed when the charter was launched, and particular MPs have been followed up with in terms of particular angles of interest, many of whom have taken action to raise OSA by tabling parliamentary questions or by writing to the relevant minister
• The BLF has produced high quality patient information and advice so that more people are being supported to find out if they might have OSA, and so that they receive good quality information after diagnosis
• Our “Take action on OSA” e-action has been our most successful ever, with over 320 parliamentarians contacted by their constituents
Supporting Statements
As impressive as it gets. The BLF OSA leaflet is now the standard, and the mapping exercise, when disseminated, will take Sleep to another level in the UK. Thank you to all the team, from a front-line Sleep Physician. Keep up the good work!
Adrian Williams Professor of Sleep Medicine
The team (at the BLF) have done a colossal amount of work and deserve a big thank you from us all.
David Dawson, Consultant Anaesthetist, Bradford
Considering the amount of progress achieved in the first year of the project the second year is even more of an achievement. As a patient myself, and my wife as a carer we continue to appreciate being able to “tell it as it is” from our personal experiences and be on an equal footing with the experts. The education and understanding is obviously helping as the reality of sleep apnoea illustrates more effectively how patients suffer.
Brian Reynolds, OSA Advisory Group, OSA patient
I am delighted to be involved in the BLF Obstructive Sleep Apnoea project. As GPs and Commissioners, we are becoming increasingly aware of this common yet under diagnosed condition and the BLF has been invaluable in supporting us and raising its profile. I look forward to working with BLF in the year ahead, so that the profile of this condition can be further improved.
Dr Malav Bhimpuria, GP and CCG chair
Workers in sedentary occupations, such as truck drivers, tend to be more overweight than those in other employments, which predisposes them to OSA. Often, the excessive daytime sleepiness is just seen to be due to their irregular work and sleep hours. Also, they may be reluctant to seek medical help because of an unfounded fear of losing their driving licence. OSA increases the risk of a sleep related collision by around seven times. There are at least half a million licensed truck drivers in the UK, and since around a quarter of them are obese, it is likely that many have significant OSA. As OSA is most common in middle aged men, and the population of truck drivers is ageing steadily since the profession attracts few young adults, the problem is worsening. The cost of diagnosis and treatment is equivalent to that of 3 or 4 truck tyres, or a tankful of diesel, which contrasts with £1.5 million estimated by the Department for Transport as the cost of a fatal truck collision.
The BLF, in conjunction with the British Sleep Society, is actively bringing this concern and its cost effective remedy not only to the public at large, but to employers, unions, road safety and governmental organisations as well as truckers and their families, for the benefit all concerned and to reduce road deaths.
Professor Jim Horne, Sleep Research Centre, Loughborough University
Great work you’re doing.
Kath Hope, Hope2Sleep, OSA patient
Thank you again for all the work you are doing for our patients. We are looking forward to you sharing this with the Scottish Sleep Forum.
Eric Livingstone Consultant Respiratory Physician, Glasgow, and Lead for adult sleep services in Greater Glasgow and Clyde
Section 3
Looking ahead
Plans for Year 3 (February 2013-January 2014)
In year 3 of the project, we intend to embed the OSA programme of activities by working to two key objectives across the BLF. These are:
1. To promote OSA as a strategic priority in England, Scotland, Wales and Northern Ireland, in order to improve provision of, and access to services along the patient pathway for people with OSA
2. To help increase awareness of OSA to the general public and health care professionals, especially primary care, to find undiagnosed people and improve their quality of life
Activities that will take place to address these objectives include:
Policy and Parliamentary activities:
• Including working with key stakeholders in the new NHS structure and Department of Health, attending relevant meetings and hosting a parliamentary event
Nations and regions:
• Local campaigning and influencing in nations and regions – using mapping results and charter to ensure that OSA is on the agenda at key meetings – re assessment, diagnosis, treatment and management as appropriate
• Local HCP involvement and engagement re awareness and services
BLF resources:
• On-going distribution of OSA leaflet
• Helpline calls
• Work with BLFS on distribution of OSA patient pack through sales
Promoting best practice:
• OSA charter – continue to use this as a key tool for influencing programmes at national and local levels
• OSA mini - conference for key sleep experts in 4 nations
• Produce report based on outcomes from mapping exercise
• Carry out first UK-wide OSA patient survey
• Lead on OSA health economics research (depending on funding)
• Attendance at key meetings and conferences across UK as appropriate
• Lead on review process for OSA Map of Medicine
Press / Media campaigns:
• National and regional – especially with local MPs, using mapping results
• Publicising BLF OSA work – patient survey, OSA patient pack, awareness campaigns, health economics
Awareness materials:
• Distribution of BLF materials – GP OSA guide, awareness campaign poster, generic awareness poster, OSA leaflet, OSA patient pack
• Look into costs and feasibility re developing new materials – e.g. card and poster for targeted venues - service stations, pubs (funding dependent), OSA app
• Online Epworth – continue to report on this and publicise it in various media
• Promote OSA materials in BLF and other publications
Awareness campaigns:
• Deliver one awareness campaign
• Roll-out of OSA awareness campaigns based on evaluation of pilot (funding dependent)
• Develop workplace training and support package
Evaluation mechanisms and reporting:
• Mid-year review of project August 2013 involving all relevant BLF staff teams
• Produce report of Year 2 activity
• Evaluate awareness campaigns
• Survey of public awareness levels at end of year 3 compared with beginning of year 1
• Produce 3 year evaluation report of the OSA project
Section 4
Acknowledgements
Thank you to the following for their support of the BLF OSA project during its second year:
Most importantly, thank you to the people with OSA and their carers who attended meetings, had their photos taken, read and commented on documents, told their stories for our media work, and much more!
Judy Harris February 2013 BLF OSA Advisory Group John Stradling
Martyn Partridge and Ramesh Ghiassi John O’Reilly
Cathy Regan
Joerg Steier and Panagis Drakatos British Thoracic Society
Association for Respiratory Technology and Physiology British Sleep Society
Sleep Apnoea Trust Association Humber Sleep Apnoea Support Group Hope2Sleep
British Heart Foundation Diabetes UK Stroke Association Papworth Hospital Lister Hospital Philips Respironics ResMed
Fisher and Paykel Air Liquide
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