Sleep Apnoea – How the Trust helps

The Sleep Apnoea Trust supports patients through Education, Advocacy (lobbying), Raising Awareness Information and assisting Research & Development. It also raises awareness of the condition and acts as a lobbying group to represent the interest of Sleep Apnoea sufferers.

Education

Website
Our website is the most up to date UK source of accurate information about sleep apnoea. All information is checked by senior NHS medical professionals and cross referenced with UK professional medical organisations, such as the Association of Respiratory Technology and Physiology (ARTP), the British Sleep Society (BSS) and the British Thoracic Society (BTS).

Sleep Matters
This is our regular newsletter, published at least twice a year, sometimes more frequently if major issues are being discussed. The establishment of a News section on our new website will increase the information flow from the charity.

Information leaflets
These range of seven leaflets is supplied free of any charge to Sleep Clinics in the UK. The latest leaflet, “Dealing with CPAP Claustrophobia & Panic Attacks” has quickly become the most popular.

Annual Conference
The SATAday Annual Conference and AGM takes place in the Autumn and provides a focal point in the UK sleep apnoea year, when hundreds of sleep apnoea patients can meet, discuss, see new products and attend presentations from the leading NHS professionals. Sadly COVID-19 means this year’s event is cancelled.

HOWEVER, thanks to the kind assistance of the British Sleep Society, we are holding a Virtual SATAday 2020, a two hour webinar with contributions from some of the best Sleep Consultants in the UK. Click here for more information on the webinar.

Local patient groups
SATA is committed to local groups, but the recent trend has been a decline. Think about starting one and we can help and can the several manufacturers of the CPAP equipment who supply the NHS.

Advocacy

• Fighting the DVLA to correct a poorly drafted EU Directive – we successfully lead the campaign to get the driving assessments clinically and professionally assessed and eventually got the changes needed.
• Getting the NHS to recognise OSA is an epidemic driven by the obesity epidemic – this is ongoing-see Sleep Matters, April 2020 pages 6&7.
• Participating on the new NICE Committee to widen the range of patients that sleep apnoea treatment free on the NHS – this is ongoing.
• Checking all aspects of sleep apnoea related healthcare in the UK to make sure the patient is at the centre of attention – continuous

Raising Awareness

• Working with other organisations, e.g. OSA Alliance & OSA Partnership group, ARTP, BSS, to improve detection, diagnosis and treatment of people on risk related work, e.g. lorry drivers, train drivers, pilots, critical industrial processes (nuclear).
• Membership of the European Lung Foundation – active participating in the organisation.
• Membership of European National Sleep Apnoea Patients Organisation (ENSAPO) – early days for this new organisation of sleep apnoea patient support groups.
• Respond quickly to media enquiries – This makes sure that fact and not fiction is published about sleep apnoea.
• Short talks at Rotary Clubs, U3A, etc – Taking the sleep apnoea story into other well worthwhile organisations events.
• Web optimisation – using skilled advice, optimising our website to make it the first choice in non paid for listing on search engines, such as Google, Bing.

Assisting Research & Development
For some time now, in response to request from researchers in the UK, we have started to invite our members to become involved in Clinical Trials. This done on a strictly ethical basis, in that SATA invites members to participate and they are free to make a choice to become involved or not. This invitation done anonymously, observing strictly the GDPR requirements.

We also provide Committee Members as patient representatives for Clinical Trials related to sleep apnoea

Major projects in which we have helped are:

• Screening patients and treating for OSA before planned major surgery – questionnaire for members.
• Sleep T2D – To analyse the effects of Type 2 diabetes on sleep apnoea patients – patient representative.
• ROSA – A clinical trial to see if continuous positive airway pressure (CPAP) in patients with impaired vision due to diabetic retinopathy is less severe in patients with concurrent Obstructive Sleep Apnoea (OSA) – patient representative.
• MIMOSA – Effect of intravenous morphine administered in emergency medicine on patients with sleep disordered breathing – patient representative.
• POSA – Positional Obstructive Sleep Apnoea trial to make patients sleep on their sides – recruited patients
• The Hidden Burden of Sleep Apnoea – Analysing the Current Diagnostic Pathway and Its Problems and Delays-survey of members.
• Other trials that cannot be identified owing to confidentiality.

IMPORTANT NOTICE
We do not provide medical advice. If you suspect you may be suffering from sleep apnoea please contact your GP who will be able to refer you to a specialised sleep clinic.

Helpline Support – Email only – Please try to find an answer first by using the extensive information available on our website.

If you have a problem with your CPAP machine or mask, please contact your Sleep Clinic directly and it will sort out your problems.
If you are worried about sleep apnoea and cannot find the information you need on our website, then email the helpline on:

info@sleep-apnoea-trust.org

Practical advice is available in our leaflet , “Living with your CPAP- Your Frequent Questions Answered” available in Information Leaflets.