Sleep Apnoea Trust Association (SATA)

Understanding and support by OSA patients for OSA patients

The Sleep Apnoea Trust Association (SATA) was founded over 20 years ago with the objective of improving the lives of patients suffering from Obstructive Sleep Apneoa (OSA), as well as their partners and families. Perhaps the organisation's most significant feature, and the reason for its fiercely loyal following, is that SATA is run by OSA patients for OSA patients. As a result, it has a genuine understanding and appreciation of the issues faced by its members.

All committee members are also OSA patients

Chris Rogers is Managing Secretary at SATA and having been diagnosed with OSA in January 2001 immediately joined up as a member. Such is Chris's belief in the SATA's work that, upon his retirement in 2009, he joined the Committee and is now responsible for the organisation's administration, PR, communications and the SATAday annual conference. Chris is just one example of a Committee member who is an OSA patient himself.

Chris's passion for the work that SATA undertakes is clearly evident. Speaking of his own experience as a patient he enthuses, "There is a tremendous community spirit within SATA's membership, it's like belonging to a unique club, where you can share what has happened to you with others, knowing that they will understand, whereas however sympathetic family and friends are they haven't been through the experience of being a patient. Indeed there is a real sense that each member's story has value, as well as an understanding that there is benefit in sharing these stories with others."

SATA's work

In terms of its role, SATA has four key functions which are education, raising awareness, acting as a pressure group and operating a telephone helpline.

i) Education
SATA's website provides a wealth of information that is regularly updated and designed to support both patients and the medical profession. The website material is supported by a suite of leaflets which are available as downloads and distributed to hospitals, clinics and GPs in printed form. The leaflets address a wide range of topics from hospital admissions to driving with OSA. In addition members receive a copy of Sleep Matters, SATA's quarterly newsletter which provides information and opinion on issues relating to OSA.

Each year SATA holds its National Conference which is well supported by members and offers the opportunity to hear about the latest developments and also to view the latest CPAP equipment. It offers a tremendous opportunity to speak to other patients and partners sharing those valuable experiences and exchanging useful information and tips.

ii) Raising Awareness - OSA Partnership Group
SATA was one of the early members of the OSA Partnership Group which is comprised of leading clinicians, healthcare charities and others with an interest in OSA and which was set up to raise awareness of the impact of untreated OSA and to promote the availability of treatment.

The Partnership Group has recently been focusing on those who drive for a living and has been working with the DVLA to develop a consistent approach to drivers with OSA. SATA played an important role in this initiative by putting pressure on Government ministers and the DVLA to correct the lack of clarity on the central Government website GOV.UK. SATA's membership of this group underlines its important role as a pressure group in delivering its objective to represent the best interests of its network of members.

iii) Acting as a pressure group - lobbying for patient services
Most recently in this role SATA has been monitoring the progress of CPAP treatment by Primary Care Trust. It has also surveyed NHS England sleep clinics to assess the provision of a fast track process for those who drive professionally. As a result of this work a report has been produced highlighting the inconsistency of treatments levels in a drive to bring about higher and more consistent standards of treatments throughout the UK. SATA also intends to exert pressure to establish a uniform fast track system for treatment nationally.

As well as working with the OSA Partnership Group, SATA has teamed up with other charities to promote awareness of OSA symptoms and the relatively simple application of treatment.

SATA is also funding more research into OSA and related areas and provides bursaries to improve the training of sleep clinicians, as well as supporting clinical trials to enhance the treatment process.

iv) Operating a patient helpline
The organisation's helpline is run 24 hours and is manned by an experienced team of volunteer patients and their partners. The service is available to both members and non-members and provides friendly and confidential advice which many find a lifeline at times when they need to speak to someone who understands.

Medical Alert Card

In addition, SATA offers medical alert cards to OSAS patients. The cards serve two core purposes. The first, and most significant, is on occasions when a patient may be admitted to hospital or any occasion when he or she requires medical intervention. The presence of the card ensures that clinicians can make medically informed decisions knowing that OSA is present, for example if sedation is required and the patient stops breathing the appropriate step can be taken rather than full blown CPR.

Secondly it helps with security aspects if a patient is travelling and is able to produce their card to verify that he or she has a CPAP machine for medical purposes. This will save time and effort, and security staff will know what to do.

Given the value of the medical alert card, we're delighted to announce that SATA is providing a special promotion to ResMed RealSleep readers, the details of which follow at the end of this article.

Looking Ahead

So what of the future? It is believed that there are 1.8 million people with OSA in the UK but at present only 400,000 have been diagnosed and treated - that's a lot of people with untreated OSA which could not only be having a damaging effect on quality of life but in reducing life expectancy. Therefore SATA has a very valuable role to play in raising awareness of the symptoms and availability of treatment.

SATA's membership is growing rapidly - numbers have increased by 25% in the last two years so in recognition that it has a broadening responsibility to this growing membership, SATA is undergoing changes to modernise its administration, while still providing a friendly and welcoming atmosphere for this widening network of members. SATA is proud of its heritage and will continue to build on this to provide its members with a trade body that plays a truly positive role in the lives of OSA members, present and future.

Chris's story

In 2000 Chris Rogers, a senior executive at Honda Motor Europe experienced a rapid decline in his health. A heavy snorer, he suffered from Type 2 Diabetes, high blood pressure and gout but this was exacerbated by an overall collapse in his health and notably swollen legs which made mobility difficult.

A friend who worked in occupational health urged Chris to make an urgent appointment with his GP. Chris was fortunate that the GP in question had attended a course on OSA and recognised the symptoms. As Chris had a private medical insurance policy with his job, his GP referred him privately to the Oxford Sleep Clinic for a consultation where he undertook the Epworth Test. His result was exceptionally high and a few weeks later Chris found himself undertaking a sleep study. The OSA diagnosis was confirmed and CPAP therapy commenced. At this point he believes that he got his life back.

He confirms, "Starting CPAP was a life-saver. I genuinely believe that I would not be alive today without it. Instead I'm able to enjoy an active life."