Any advice.. being fobbed off by ENT clinic

[KeithB]

Hi.. i'm a newbie but am in need of help please..

I will try to be brief but concise..
I have a history of OSA going back over 10 years but the symptoms of fatigue, breathlessness on waking etc have got worse of late.
I saw my GP and got referred to an NHS ENT consultant as my BUPA won't cover apnea.
Had the blood test,the overnight pulse and oxygen test which proved the apnea (it was, in fact, a good night, as many are much worse than that one was)
I went for the followup a couple of days ago and was told the next procedure was investigatory to discover if the cause was palette or base of tongue and they would laser it or prescribe a CPAP if it wasn't the pallete.

Up to this point I was totally with the programme and looking forward to maybe one day soon waking up refreshed for the first time in many years.

However the blow was about to come and he said to me they won't do it unless I get my Body mass index down to 27!
I am currently a BMI of 30 and he calculated I would need to lose two stone taking me to a weight I haven't been since I was under 30 years old. (am now 63 so losing large amounts of weight is much harder than when I was younger...)
He said he would make an appointment for 3 months time (lose two stone in 3months.. I wish!)
Despite my protestations, he wouldn't prescribe a CPAP, even if I was able to maybe lose 10 pounds or so.
So I have to continue to watch my health erode and to continue dropping off to sleep whenever I relax..So.. I'm sorry it still ended up like "War and Peace"
but I plan to write to the consultant and register my disappointment in effectively being refused relief from my symptoms..

Any other advice that anyone has would be much appreciated..

[Tigers Fan]

Declare war!

Hi KeithB

My first reply disappeared in a puff of computer magic - maybe not a bad thing as it was quite incensed!

First try is to go back to your GP and ask for a referral to a different consultant. Second try - and I'd do it concurrently - is to write a strongly worded letter to the NHS Trust which operates your ENT Clinic, naming the arrogant sob who turned you down, and copy it to the arrogant sob, your MP, your local newspaper and your local radio station. I recommend you speak openly of your feelings about being refused treatment because you are fat, having paid your NI contributions all your working life, it not being in the remit of a consultant to decide whose lifestyle is acceptable to the NHS and whose isn't - throw away your trowel and use a shovel!

I'm a firm believer in the spray technique when trying to create a storm, you may wish to focus your thrust.

Good luck ! Fight for your rights!

TF

[KeithB]

Hi KeithB

My first reply disappeared in a puff of computer magic - maybe not a bad thing as it was quite incensed!

First try is to go back to your GP and ask for a referral to a different consultant. Second try - and I'd do it concurrently - is to write a strongly worded letter to the NHS Trust which operates your ENT Clinic, naming the arrogant sob who turned you down, and copy it to the arrogant sob, your MP, your local newspaper and your local radio station. I recommend you speak openly of your feelings about being refused treatment because you are fat, having paid your NI contributions all your working life, it not being in the remit of a consultant to decide whose lifestyle is acceptable to the NHS and whose isn't - throw away your trowel and use a shovel!

I'm a firm believer in the spray technique when trying to create a storm, you may wish to focus your thrust.

Good luck ! Fight for your rights!

TF

Hi

Thanks for your reply....
I have formulated a letter to said consultant because when I attended last week, I saw one of his team who kept running out of the room to go ask his boss the next step.. not very inspiring.

I have seen my GP who suggested I write first in a calm manner to see what the reponse is and she gave me a note endorsing my action to include with it.

I'm glad i saw her because, on the back of that, I will seek another referral if the response is negative.
I went to the consultant I did because my GP rated him even though I had to travel a distance to his clinic.
I will go for a local consultant for my next referral.

I will keep you posted and once again, many thanks for your advice.

K

[Richard]

Fobbed Off By Ent

Hi Keith,

What an appalling experience!

Before you declare war, though, have you thought the reason you have OSA is precisely because you have a BMI of >30?

Your consultant might have said you need to lose weight "and here is a low-calorie diet that I recommend". But he didn't, and now he has one very seriously dis-chuffed patient.

Accept that you need to lose weight, and acknowledge that when you see your other consultant, otherwise the same thing will happen again.

You cannot expect to have one condition treated successfully when you have other conditions that mitigate against that happening.

So, put away the shovel and bite the bullet!

All the best

Richard

[Tigers Fan]

Shovel harder!

Hi Keith

I think Richard is not wrong in that it would be sensible to lose weight, same as it would be good for me, too. But it is the patients choice whether or not they want to eat too much, not move enough, smoke, drink, drive a car, etc.

Each and every time anyone in the NHS and/or government try to dictate a lifestyle to us - by withholding treatment in your case - they must be resisted by every lawful means at our disposal.

90-odd% of CPAP patients are over-weight, I'll warrant. The population is increasingly obese and OSA is on the rise. We know the connection.

It is not the job of a consultant to dictate anything to you, but to offer treatment and advice. You have a legal right to treatment and I encourage you to fight for that right.

TF

[andysnorer]

The "weight" issue

This to me has to be the ultimate "chicken and egg" situations. What comes first the undiagnosed sleep apnea, or the escalating weight.
Having paid numerous, fruitless, frustrating visits to my GP, I was diagnosed with OSA in 2002, by which time my weight had gone from 70 kilos to nearly 100 kilos.
The reasons are all too obvious for those of us who suffer from OSA:

Sleep deprivation
Depression
Constant tiredness, lack of strength, leading to a natural urge to eat more.

By the time many patients are diagnosed, the damage has been done. The weight increase leads to high blood pressure, problems with the load bearing joints, heart desease.
Very often the patient has looked after themselves at an early age, keeping fit and active.
Yes, it would be great to be able to turn the clock back and be slim and healthy again, but it is much harder the older you get. I walk miles every day, at a fast pace, but my weight fluctuates between 93 and 98 kilos, and we have a healthy diet at home.
The so called "experts" or "specialists" treating Keith should be ashamed of themselves, both for their willful ignorance and their lack of sympathy.

[KeithB]

Hi Keith,

What an appalling experience!

Before you declare war, though, have you thought the reason you have OSA is precisely because you have a BMI of >30?

Your consultant might have said you need to lose weight "and here is a low-calorie diet that I recommend". But he didn't, and now he has one very seriously dis-chuffed patient.

Accept that you need to lose weight, and acknowledge that when you see your other consultant, otherwise the same thing will happen again.

You cannot expect to have one condition treated successfully when you have other conditions that mitigate against that happening.

So, put away the shovel and bite the bullet!

All the best

Richard

Richard.. thanks for your comments..
I actually offered to reduce my weight by 10lbs to prove that I was serious about getting treatment but he stuck with two stone or he wont treat me.
If I was able to get refreshing sleep, I would be more inclined to take long walks etc with a resultant reduction in weight. I already walk 3 miles a day to the station etc and am concerned more now that I wake with my chest hurting from gulping for breath through a night that is also interrupted by trips to the loo because of a prostate condition.
I am almost six feet tall and have a 38 waist and the BMI of just under 30 I have puts me in the overweight but not obese category.
I have posted my letter to the consultant and am awaiting a reply.
Thanks to all for taking the time to give their opinion on this and I'll keep you all posted on my progress

best regards

Keith

[tallishbloke]

Dear KeithB

I am saddened by your experience - I hope this type of extreme stubbornness is an isolated problem- certainly from my experience it is not the norm.
There seems to be a basis lack of understanding of the clinical side of things by your consultant - excessive levels of weight will at the very least significantly contribute if not actually cause the sleep apnoea. The response should be the other way round and he should be all the more keen to supply the CPAP to treat the sleep apnoea. By treating sleep apnoea, sleep quality improves, you feel more rested refreshed and energetic and therefore more able to tackle the issue of weight-loss because you will have more energy to burn off calories!
I presume you are in tyhe UK - the "Choose and Book" system for appointments in NHS specialities should allow you to choose a different Trust for your treatment.

FInally, you mentioned the treatment of having bits of your soft palate lasered off to treat sleep apnoea. The clinical research evidence suggests that this is usually NOT effective long term, and it can actually make CPAP use afterwards more difficult!!!

Good luck

TB

[KeithB]

Hi
all.. I have a happy ending to report..
After my letter of protest to the ENT surgeon, I received a reply stating that it was unlikely that surgery would be effective but he agreed that a CPAP would be a good idea and has referred me to a colleague to arrange that.
Hopefully, when I am sleeping properly again, I will feel fitter and more able to exercise and that has to be a benefit..

Thanks for all you supportive posts..
best regards

[Tigers Fan]

A feather in your cap!

All hail, KeithB!

Well done, you!

Was this another case of one consultant's narrow field of expertise/vision preventing him from seeing what was actually needed - the expertise of a differnt consultant? Surgery vs CPAP, though both ENT?

Well done for wielding the Sword of Damacles, even if it looked like a shovel to me!

Respect!

TF

[Richard]

Well done, KeithB!

Now you're on CPAP Therapy you will most likely feel more like taking some exercise and losing weight. And if you lose weight to a reasonable degree, you will be free from the CPAP.

regards

Richard

[KeithB]

Well done, KeithB!

Now you're on CPAP Therapy you will most likely feel more like taking some exercise and losing weight. And if you lose weight to a reasonable degree, you will be free from the CPAP.

regards

Richard

Thanks for all your kind words..
I finally got to speak to the secretary for the doctor who was requested by the ENT surgeon to see me about supplying a CPAP only to find I have just moved to the back of another queue ..
I have now been told I will need to wait for an appointment to see him (at least two months as he is on holiday all of August) and he will probably want to do a sleep study as well (possibly not ambulatory) and then, if he decides I need one, I will go onto a waiting list for one as they have more in the list than machines they own (currently a waiting list of 30)..
ho hum.. I reckon I will be able to hang it on my Zimmer frame beside my bed the time I get it..

[James @ Intus]

Frustrating situation there Keith, and unfortunately we hear it happen all too often.

I can't tell from your story whether you've actually had a sleep study yet. Some people in your situation have done a sleep study privately, so with the report of this, they stand a bit firmer in their arguments and sometimes can move up the queue a fair bit. It can show they're wrong (or at least too slow) and that you are proactive. I can tell you more if you want, thought I'd make you aware of the possibility.

[ElleCee]

Hi Keith,
Can you chose where you go for treatment?
I ask because my specialist at the East Surrey Hospital does not have long waiting lists. If I phone I can usually get get to see them the same day.
Can you get referred to there? If you want to send me a PM I can give you his name etc.

Regards
Lorraine

[KeithB]

Hi Keith,
Can you chose where you go for treatment?
I ask because my specialist at the East Surrey Hospital does not have long waiting lists. If I phone I can usually get get to see them the same day.
Can you get referred to there? If you want to send me a PM I can give you his name etc.

Regards
Lorraine

Hi Lorraine.. thanks for the post.. I actually got my appointment and its for 8th sept so not too bad after all.. I had a home sleep study before but although it proved the apnoea he may want to do another..
I will keep you all posted.


cheers

Keith