Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

3 Year Mission to Raise Sleep Apnoea Awareness in the UK

This can only be good news for all the poor people who are struggling on, unaware their problem is connected with their sleep (or should I say lack of)!  Meanwhile, we you are the lucky ones with the diagnosis need to keep on watching out for our families and friends.  Our 'condition' is so much more common than people realize.

 

http://ow.ly/4oGVr

 

"The British Lung Foundation and Philips Respironics partner to raise awareness of Obstructive Sleep Apnoea
29 March 2011

The British Lung Foundation and Philips Respironics, leader in sleep therapy solutions, have partnered to create a three year programme that aims to raise public awareness and improve diagnosis of obstructive sleep apnoea (OSA).

In the UK it is estimated that over one million people may be suffering from OSA, with prevalence being higher in men and those that are overweight. To date only 10% of sufferers are aware of their condition and are being treated to alleviate their symptoms. Obstructive sleep apnoea is a disorder that is characterised by the airway collapsing (behind the tongue) during sleep, which stops breathing. This can result in snoring, laboured breathing, gasping and choking. The collapsing of the airway is followed by attempts to breathe leading to a fitful and restless night’s sleep. If untreated, it can contribute to the development of high blood pressure, diabetes, heart attacks and strokes.

The three year partnership between Philips Respironics and The British Lung Foundation will begin with a research programme to uncover issues and opportunities to improve the awareness of OSA and diagnosis channels and treatment for patients.

The research will form the backbone of discussions of the advisory panel who will lobby the findings onto the health agendas throughout the UK. This activity will be coupled with a communications programme where the latest educational materials about OSA will be developed for both healthcare providers and the public. The activity will culminate in pilot OSA testing events throughout the country.

Dame Helena Shovelton, Chief Executive, British Lung Foundation, said:
"Obstructive Sleep Apnoea (OSA) doesn't just affect your health; the interrupted sleep reduces your ability to work and leaves people at risk of accidents and in danger of falling asleep throughout the day. Many thousands of people suffer from this condition yet few people are diagnosed. The British Lung Foundation will be carrying out a range of activities over the next few years to raise awareness of OSA and the help that's on offer. We will also be gathering information about the patient pathway to drive improvements. We're delighted to be working in this area of health as it has been an ambition of ours for some time"

“OSA can be easily and effectively treated using a simple Continuous Positive Airway Press (CPAP) device, which can greatly improve the health and well-being of patient’s lives. However, sleep disorders do not always get the recognition they deserve as a major public health issue. In partnering with The British Lung Foundation, our aim is to show the serious side of sleep and help many undiagnosed suffers in the UK.” Comments Darren Umbers, Regional Director, Philips Respironics UK."

Views: 226

Reply to This

Replies to This Discussion

Thanks for the info Kath, it is about  time the word was spread more.  

Do you think they will be asking diagnosed osa sufferers for any information or trialling? I would certainly be interested in following just what they are achieving and how during the 3 years.

It would be fantastic  if everyone knows more about it - who knows how many lives could be saved - even just one is worth it and considering that diagnosed sufferers like me have little knowledge of it and are given 'dumb' treatment, it could also be of benefit.

 

The medical world and certainly the NHS, need sleep apnoea highlighting and clinicians to be given more knowledge and appreciation of how serious it can be. Advice is so conflicting to sufferers within sleep clinics at times that it frightens me how bad it is in the general medical world.

 

If raising awareness could bring attention to the NHS Sleep Clinics,  in the form of funding and training, this would benefit a lot of people.

If huge number of people are diagnosed and have to rely on the NHS sleep clinics I would think this will have a critical effect on people receiving and continuing their treatment this way.

Cynical me, knows that raising awareness will also benefit businesses and I have no objection to this, but not at the expense of good customer care.

I do not have the energy or will to keep on trolling everywhere for news and information to make a dent in my ignorance, so this forum is a fantastic way of feeling more up to date and gaining more knowledge and confidence  - God bless for the internet and this forum, because without it I would be a shrivelled heap of depression in bed!

thank you  Jacks xxx

 

What an excellent scheme and thanks to Philips Respironics and the British Lung Foundation for carrying out this work for people like myself. Had my endocrinologist at Eastbourne DGH not noticed the fact that the sleep disorder questionnaire needed to be completed; rather than continuing to treat all of the separate symptoms as isolated conditions in need of treatment, I believe that I would now be dead or close to death. I am very lucky that I didn't have a heart attack or a stroke.   

 

The cpap treatment which followed my diagnosis has led me to be able to shift over six stones in weight and be removed from the diabetic register (that is what my GP suggested last time I visited the surgery) as I am controlling the glucose so well with effective dieting (only possible once I started to sleep at night and own a body which now behaves more normally). I have also become euthyroid rather than hypothyroid and my blood pressure medication has been quartered. My BP and pulse are now in the normal range.

 

There are no more calls for a gastric band operation to save my life and my cholesterol readings are also close to normal. I survive (not enjoy as such) the gym and now use "profiles" such as "cross country" and "aerobics" on the treadmill and exercise bike and can actually walk after being on the cross trainer, without my knees collapsing.

 

I no longer need to walk backwards into the wind or use my inhaler. I can walk without my back hurting and I can move and climb the stairs on my feet rather than on all fours!

 

The reason I share this on the forum is that without the awareness of one particular specialist just over two years ago, I would not have such a good story to share. Recognising severe OSA has it made it possible for me to reverse my walk into an early grave. I totally applaud a project which aims to improve awareness of OSA and treat it.

 

Rosemary Kemp (Sussex)        

what a fantastic intiative I think alot of health professionals including Ent consultants do not know enough about Apnea and I think any awareness increase is a great thing...... My husband was the brunt of our jokes for years regarding his snoring had I not had a baby diagnosed with OSA he would probably not be here ........my search for information and my own knowledge lead to him being treated with CPAP thank god for the WWW :)

 

The 1st Year's Report from the British Lung Foundation is now available to view, and makes interesting reading.  It's available as a PDF if you click HERE


Also, our own Helen Potts is currently preparing for her Manchester Run to raise funds for this campaign.  You can sponsor her via the Events page on the forum HERE

may is sleep apnoea month

plan for next year

As part of the British Lung Foundation's 3 Year Campaign, which Resmed are now supporting too as well as Respironics, they have just released their new 10 Point Charter:-

The OSA Charter


The British Lung Foundation...

Believes that people with OSA and their families have a right to:
1. OSA screening, through primary care wherever possible;
2. a speedy and accurate diagnosis in a sleep clinic, wherever they live in the UK;
3. access to appropriate treatment and to a comprehensive specialist sleep service if needed, wherever they live in the UK;
4. 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
5. 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:

6. make OSA a national priority;
7. 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;
8. ensure collection of comprehensive data to enable commissioners and service planners to provide effective services; and
9. 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:

10. arrange for all staff who are employed as drivers or in other vigilance-critical roles to be screened for OSA.

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Nick Daniel replied to John's discussion Are every small CPAP machines any good?
"Yes, it does the job. I use a Powapacs Atom for portable power "
Dec 18
John replied to John's discussion Are every small CPAP machines any good?
"Hi Nick thanks. Does it do the job and could you camp with it?"
Dec 18
Nick Daniel posted a discussion

CPAP Total Face Mask

I was curious whether anyone has used the CPAP Total Face Masks and could pass on their observations? I've been using an Airfit F20 for years which is fine apart from the permanent red mark on the bridge of my nose, and have recently tried the…See More
Dec 17
Nick Daniel replied to John's discussion Are every small CPAP machines any good?
"I've been using the Resmed Airmini for about 5 years when travelling - overall lightweight and small and can be controlled by an App, but it does produce a loud whistling/wind sound for me which hasn't been reduced by an inline filter or…"
Dec 17
Greg Lloyd is now a member of Hope2SleepGuide
Dec 6
Jonathan replied to David Hudson's discussion Pressure waking me up. Belching and wind
"Hi It sounds like you need to have more conversations with your sleep clinic.  There's little point in having a high pressure if it means you cannot tolerate the machine.  There's an interesting video here…"
Dec 1
David Hudson posted a discussion

Pressure waking me up. Belching and wind

HiI'm using the prisma smart max machine. Initially I was just on a nasal mask, this changed as I was sleeping with my mouth open. I then went to face and nose mask and complained of bad wind and belching. Sometimes the pressure in the night was…See More
Nov 28
Jonathan replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Nov 9
Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
Nov 3
Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"Hi My first thought is "don't panic"!  We're all a bit different, and there are many things that can be tweaked.  I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
Nov 2
Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Nov 2
Collette rose is now a member of Hope2SleepGuide
Oct 31
John posted a discussion
Oct 30
Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
Oct 29
John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
Oct 24
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep.  Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
Oct 24
Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service