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Permalink Reply by Jackie on April 2, 2011 at 17:40

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

 

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Permalink Reply by Rosemary Kemp on April 2, 2011 at 19:35

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)        

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Permalink Reply by carol murphy on April 16, 2011 at 22:46

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 :)

 

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Permalink Reply by Kath Hope on May 3, 2012 at 19:08

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

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Permalink Reply by 99 on May 4, 2012 at 22:32

may is sleep apnoea month

plan for next year

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Permalink Reply by Kath Hope on July 13, 2012 at 22:33

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.

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