Therapy on the NHS at last - CPAP on prescription?

[Topcat]

From THe Hull Daily Mail
NEW HOPE FOR SLEEP DISORDER VICTIMS

10:51 - 26 March 2008

East Yorks: People suffering from a sleep disorder have been given new hope after a health watchdog looked set to approve a treatment offered at Castle Hill Hospital on the NHS.

Those with obstructive sleep apnoea-hypopnoea syndrome (OSAHS) - or sleep apnoea - have irregular breathing at night and are excessively sleepy during the day.

Their upper airway (pharynx) collapses repeatedly and at irregular intervals as they sleep.

This leads to the airway becoming blocked, or partially blocked, which cuts off airflow.

Sufferers can stop breathing or suffer restricted breathing for about 10 seconds at a time, which causes them to come out of deep sleep and either wake up for a moment or sleep lightly.

The cycle then begins again as they fall into a deep sleep.

The patient may wake hundreds of times a night, but remember nothing.

In East Yorkshire, specialist treatment for the condition is offered at Castle Hill in Cottingham.

Today, the National Institute for Health and Clinical Excellence (Nice) looked set to approve a treatment for use on the NHS.

According to the British Thoracic Society (BTS), the watchdog will recommend continuous positive airway pressure (CPAP) as a treatment option for adults with moderate or severe sleep apnoea.

CPAP involves the patient wearing a soft mask over their nose and mouth, which is attached to a machine that regulates the pressure of the air they breathe.

This prevents the airway from collapsing during sleep.

According to NHS Direct, sleep apnoea affects about one in 100 people.

Men aged between 30 and 65 are more likely to suffer, and anyone who is overweight or obese is more at risk.

Symptoms include heavy snoring, daytime sleepiness and poor concentration.

[dogtired]

It looks like NICE has told the Healthcare Trusts to fund Obstructive Sleep Apneoa treatment, but as usual no more funding is being provided from government so they've got to find savngs elsewhere.

My specialist said it could take 8 months and even then they would probably only be able to afford the basic cheapest models. Still any little helps.

[James @ Intus]

Next up, in an ideal world, the insurers should start to cover OSA therapy like they do in Germany, USA, Holland etc.

[Brian2]

Haning lived and worked in Holland I can tell you that although the insurers may sometimes cover CPAP costs the insurance premiums for the Dutch equivilent of our National Health is 4 or 5 times what we pay here in the UK. You only get what you pay for and our national health is so bad because no one is willing to pay for it. We pay far less than Holland, Belgium, france etc and thats why their service seems better.
Brian

[Snoozy]

Hi everyone
Am new to this forum and only recently diagnosed with sleep apnoea.

I have difficulty coming to terms with the concept that the only way I would be accepted for a sleep study to find out if I had sleep apnoea was if I signed a piece of paper which obliged me to pay £500 for a CPAP machine. No choice regarding which one. Subsequently the diagnoses has been made but no other forms of treatment have been suggested. Only the knowledge that if I do not purchase a CPAP machine I will lose my driving licence. As I am the main breadwinner for the family this would cause a significant problem, so stress of new diagnoses coupled with risk of losing my job. I realize the Health Service is struggling financially. I work in it, however I feel it is wrong to force patients in this way and then not mention any other treatment which could be explored prior to this expense.

I am learning a significant amount from this website and hope that discussion may assist me to formulate a way forward which would explore all avenues before committing to a machine. Sorry the trial of this item felt like I would have to come to terms with an alien invading my airways each night. It was a nightmare! So would prefer to know if there was another way to treat this problem so that I can keep my job and feed my family.

[puffin]

Hi Snoozy
welcome to the forum.

That's the first time I've heard of someone being made to sign a contract to buy a machine before being tested. This sound illegal to me, do they say that you have to purchase the machine off them? Blackmail is what I call it. Most either are loaned or are given machines via the NHS. Or they completely go private. Do you have the option to be refereed to another better funded sleep clinic? It would be worth asking.

Sadly, CPAP machines are possibly the best available method of treatment for OSA so far. I personally would not waste time and money trying to find alternatives as most don't seem to work! It is surprising how quickly you can become accustomed to silicon and plastic night-ware. If they make you pay for your mask as well, it's going to get very expensive. Approx. £120 a shot and in 12 months I've tried 5 being I was comfortable with one.

I would be very tempted to try and get myself refered elsewhere with a bigger budget.

[Snoozy]

Hi Puffin

Many thanks for your response. It's a funny thing. As a fellow sufferer you will understand that it is a constant state of semi somnolence. I feel I am constantly at a disadvantage which does not affect me when I have a long time to ponder on a project, however in a hospital situation when a nurse comes to you in an ENT clinic on your first visit and states she has a routine questionnaire regarding your state of alertness you are a little slow on the uptake. Then to be told your score is 19 out of a possible 20 you feel somewhat concerned and accept the offer of referral to the sleep clinic.

It is when you arrive at this clinic,having used up another annual leave day to attend that you are informed that yes, you have a high score, we are concerned but will not test to see if you have sleep apnoea unless you agree to pay £500 for the CPAP machine we will provide if you need it. You are also informed that if you are confirmed as having this difficulty the DVLA will be informed as you are not considered safe to drive unless your symptoms are treated with this machine. This caused instant alarm bells for me. This same hospital treated my husband for the wrong condition for 5 years causing him to lose his job. I am now the main breadwinner for the family because of this. So state of panic now ensues and clouds anything else you are told.

At this point you are not certain you have the problem therefore you sign on the dotted line just to find out if you are sick. Having used up a day's annual leave it would have been a waste of my time not to sign and find out the reason for my being there.

When diagnosed I was given a machine to try to see if I could become accustomed to it. I am a confirmed non smoker. The machine used smelled of cigarettes which pushed the smell of nicotine into my lungs which was disgusting. Added to the other difficulties of sinus and heat etc it was a terrible experience. I managed circa 2 hours of this torture before I gave up. The following a day at work trying to come to terms with the prospect of yet another night of the same I caved in. Went on a 20 mile walk deep into the countryside and caused panic throughout the family as they thought I was about to commit suicide rather than try another night with this machine. My husband refused to let me do another attempt until I had seen the Respiratory physician. So the 3 week loan was reduced instantly. I felt I could not deprive another individual the opportunity of experiencing this longed for event. Please do not think that I had entered into the trial period in a negative state. I was looking forward to the longed for complete night of rest so found this all very disappointing.

So far I have been given no information regarding different types of machines, or any data regarding types of mask etc. I am given to understand that the privalege of paying £500 does not let me have the opportunity of knowing there are any alternatives and from the way other forum members are speaking I feel very ignorant regarding my condition. I do not even know the make of the machine that was given to me to trial.

This website has been a adventure in discovery. I have only been a member less than 24 hours and already I have your data plus the knowledge that Hampshire is a negative postcode lottery. I can take on board that CPAP is probably the only way forward.

Referral to another sleep clinic. Can anyone suggest where a decent clinic would be in a days travelling distance from Portsmouth. I can find accommodation in London if necessary. I am already losing a day each consultation time of my annual leave allocation to get this problem sorted out and feel perhaps my local hospital is not the right place to be.

Most people research a product prior to purchase. Is there such a place where different types of CPAP machines can be seen, masks tried. Qualified advice given by the salesperson to tailor the machine to the individual. It looks like I am going to have to pay despite the NICE guidelines stating that as a lifelong contributor to the NHS there is nothing provided for me in my area. I wonder what the Healthcare Commission would make of this.

So far from the website I understand 40 % of people with sleep apnoea have type 2 diabetes yet I have never had a glucose tolerance test. Has anyone else on the forum had this test done as part of their apnoes investigation?

Thanks again for all your advice. I think perhaps the document I was made to sign under duress is perhaps not legal and will take advice regarding this.

[puffin]

Hi Snoozy, I think by just taking on here, will help with some of your worries. Talking to those around you at home, sometimes can be a painful process and difficult. Particular if they don't know what you are going through. Most of us have had many of the same problems when we first started on CPAP, so don't worry you are not alone.

It does sound very much like your hospital is a joke. If you go to the very top of this page, you will see a tab marked "CPAP Portal", klick on it, scroll down til you see a map. Type in "Portsmouth, UK". This will show you the sleep clinics around your area. A good one will run a battery of tests first, some do them in house, while other send you home with a couple of gadgets you put on over night. It does mean at least two visits. They will also make sure that the mask option is the right one for you. Companies will charge you for each mask you try. You will need a prescription to be able buy a machine privately, that way they can be sure of what you need in terms of machine and mask.

I can not see why you need to have Leave days off. This is a treatable medical condition, speak to you employer, explain that by getting treatment you will become a better employee as you will be a more productive and not walking around in a daze all the time. By law they have to let you have medical time off.

As to type2 diabetes, your GP can do a simple prick test in his surgery, I believe Lloyd's Chemist will do the test as well. They only need a drop of blood to do it. But again I would not worry to much about it. The numbers quoted just means that 40% of OSA sufferers MAY have it. It does not say how many Type 2 sufferers have OSA? People use numbers all the time to put the wind up those of us who feel venerable.

You must be fairly fit to walk 20 miles anyway. So do not worry if you can do that you can do anything you wont. So keep in there. As Anneliz said about your better half, they may laugh at you for a short while, my wife did. So what, she now makes sure I've got it packed when we are going away. She much prefers the person I've become by sleeping with a lump of plastic on my face, then the grumpy evil person I was before.

Keep smiling and hang on in there, it will be all right in the end.

[Topcat]

Keep at it, you will never regret it

Hello Snoozy. Without writing almost exactly the same advice I would only reitterate what Barry has written. Once you find the right machine and the right mask your life will change dramatically. You will sleep and dream deeply, your skin colour will improve and you will feel a different person. I overcame some of the mask problem (as I did with smoking) with a level of relaxation and self hypnosis which is not difficult to learn. You don't say what type of mask you have tried/used to date or whether the machines you have tried are auto or manual. The thought of a machine smelling of tobacco must have been the last straw and demonstrates a total lack of professionalism on the part of the clininic. Is it an NHS repiratory clinic? If I can help in any way please let me know, and please persevere. You must get it (your OSA) treated! Is there a support branch in Hampshire? I'm just off to have a quick search.

Back again........... no support in the immediate vacinity that I can see but check out http://www.sleep-apnoea-trust.org/ and see what other support is available.

[James @ Intus]

Hi Snoozy,

Sorry to hear the story. Having to pay £500 for a second-hand machine is terribly bad luck (we could have given you a brand new APAP for that).

If you are now looking for a private clinic in your area, the very best one we know of is in Haslemere run by Dr Andrew Hopkirk. He sends home nearly 300 new patients with CPAP annually so he and his team know exactly what is required to make therapy work for each patient. They are very pro-active in ensuring compliance too.

See more info on the hospital here: http://www.nhs.uk/ServiceDirectories...x?v=2&id=RA219

Dr Hopkirk runs his services part-NHS and part-private.

Alternatively, you can contact Dr. Abbassian in Gosport on 02392 580 795 and speak about a CPAP alternative which is worn in the mouth. Rather than using air as a splint, oral appliance therapy ensure that the lower jaw doesn't drop backwards and hence prevents obstructions. This is a clinically validated, safe way to treat OSA.

Hopefully, amongst those options you find something that works well for you, fast. Please don't hesitate to discuss any of this here in the forums or by ringing us on 0870 744 6811.

At least you have been diagnosed already. That means you're miles ahead of hundreds of thousands of others.

[Snoozy]

Hi everyone

Just want to say a BIG thank you to you all. What lovely people. Yes I have been so very down and no one seems to have understood how I feel.

Believe it or not I work in the NHS so no, they do not make allowances for staff to have their health improved - funny thing that. I do not work in the hospital where the Respiratory Clinic is situated.

As of 2008 big New Year resolution was for my son and myself to increase activity so we routinely do a 5 mile rough terraine walk. Dieting has not worked as I do not seem to lose the weight so we have both increased exercise. So far have not lost any weight but leg muscles have got stronger. It must be a female thing about the weight being so comfortable that it intends to stay attached!!! If it was a mouse I would get a cat.

My husband has coeliac disease and people with his condition can attend conventions to learn more about their condition. Wouldn't it be fantastic if this was the case for people with our problem. It would be nice to put faces to names, just support and share experiences with trade stands to demonstrate the latest available on the market.

Will take all suggestions on board and make a plan. 2008 certainly is an eventful year.

Many thanks to everyone again.

Snoozy