Any Advice Please

[Tigers Fan]

B****y consultants!

Hi Dave

Sorry I've taken so ling to come back to you - only found your post this morning.

You and Prof. Stradling are far, far from alone in disliking the DVLA. Behaving in a way that is informed by that dislike is, in my opinion, a waste of energy. The DVLA just is! and it's up to us to make sure we know how best to interact with 'it' - the people who work there. They are constrained by a set of rules, practices and procedures. We have to abide by them. Not quite 'end of' - rules are for fools and the guidance of wise men, after all.

Sleep Clinic Staff, Professors and Consultants included, have caused endless pain for many of our members (which, no doubt, can be multiplied up for the general population) by giving mis-information about infoming DVLA. We will never get these medics to stick to talking about that which they know and handing us leaflets about DVLA. What we can do, is inform ourselves about DVLA and ignore medical advice on the subject.

You do not need to lose your (car) driving license because of OSA if you act swiftly and correctly. Many of our members can attest to this.

There is a thread here about being sacked because of OSA -it constitutes unfair dismissal because OSAis a treatable condition.

I agree with you when you say, "I understand completely the need to safeguard our roads - of course I do. We do not need drivers who fall asleep at the wheel."

Whether or not The Powers That Be "need to understand" anything about our lives is a debatabale point - the next set are in power and a few OSA sufferers added to the 2.51 million on Job Seekers might not be high on their agenda.

The family of the guy run down by a sleeping OSA driver might well argue that the DVLA rules need to be much tougher.

I contend that "feeling upset" with the DVLA and expressing those feelings is a very different kettle of fish to your comments on 6th May. I am filled with dread every time I am about to engage with a bureaucracy but find that speaking pleasantly and courteously, listening carefully, asking for help, advice and guidance, thanking them for their time and attention, spending a little time enquiring about their day, eases my way through the minefield. I never engage without a detailed map in front of me, though.

Dave, I'm really enjoying your company! What better beginning than a difference of opinion, rationally discussed? May the gods forbid that we all see the world from the same perspective!

Drewsnoresnomore, I'm so sorry you've fallen foul of sleep clinic instructions about DVLA.

Rule 1. Ignore sleep clinic advice about DVLA
Rule 2. NEVER tell DVLA that you have OSA until you have a confirmed, in writing, diagnosis. At that point, ask DVLA to send you the medical reporting forms. That is the start gun for a race to get onto CPAP treatment so you can honestly say you are being successfully treated when you return the forms.

There is endless info about OSA and DVLA in this forum.

TF

[davejwhite]

Not your fault, TigersFan

For some reason my post took ages to appear.

Drewsnoresnomore, you most definitely do not have to pay to re-apply for your licence. Well, at least not for a regular licence. I would be very surprised if you did, though. Re the forms - get their Fax number and when you have filled them in, Fax them through. Then ring to confirm they have received them. Avoids being caught in Transmission Limbo (sounds like a dance :-)).

Tigersfan, I agree completely about being courteous and polite with the DVLA - it isn't the fault of the people that the system works against us. But I'm not averse to attempting a bit of mountain-moving when it comes to it, and if we all pulled together, who knows what we could change? What bugs me is that 'the system' has no sense that it is causing upheaval in peoples' lives and making things difficult by virtue of its slowness.

I wonder whether we could put together an advisory leaflet on what to do once diagnosed, so that before newbies fill out the dreaded form they could see what not to put! That was my problem. I was trying to be honest and responsible and it backfired on me, so it felt. Which is rather wounding - particularly when you are reeling from the diagnosis.

Didn't know that about unfair dismissal - fortunately, my employers were extremely understanding..

Did you see the prog about Long Distance lorry drivers - they estimated that about 20% of them have undiagnosed OSA. Now THAT's scary!

[Tigers Fan]

And again

Hi Dave

And again, I see it differently to you. I don't think the 'fault' lies with the DVLA. I put the responsibility at the feet of the good old NHS.

As I outlined yesterday, the public and our Parliament could have a good old debate (in my dream world) about DVLA Rules - and I can see at least two vehmently opposed points of view. Outcome? Probably a compromise and keep the status quo.

Now, if the NHS were to get its collective, nationwide finger out of its managerial anus (who IS the new Minister for Health?) and bring the supply of CPAP much closer - the same day? - to the time of diagnosis of OSA, would not he problems we experience just disappear in a puff of common sense?

That, to me, is an achievable goal - and one we can press with our MPs and PCTs.

I can hear the retorts about not even having a clinic in some areas - you guys have a very, very steep hill to climb. Tony Brentwood of this forum has caused one to be created!

The leaflet of which you rightly speak, Dave, is in this forum (guess who authored it) and in legalese on the DVLA website - easy to be mislead by that one unless you are an extremely careful reader.

TF

[Richard]

Don't blame the ruddy DVLA

It is my belief that the problems in dealing with the DVLA are very similar to the problems that a great many returning-officers encountered last Thursday night: they could not believe, and were totally unprepared for, the number of people who turned up to vote.

As a result people were denied their fundamental right to vote; and, as we know, government departments do not change their ways in anticipation of change, only when it is made clear that things are not as they were. Then they will think about it, but it may take a while.

Don't hold your breath, but we're on the case. . . . .

Richard

[davejwhite]

Ha ha

'Don't hold your breath'.

That's funny!

[drewsnoresnomore]

dvla aaarrrrgh

hi guys just thought i would add some more info to my post.
I have been diagnosed with severe osa and am two months into treatment, and yes I did contact dvla on the advise of the hospital, but i didnt expect to be treated by dvla the way I did.

The forms have been sent back to them and i await with baited breath for there reply

Andy

[Tigers Fan]

A copy of an e-mail

Here's a copy of an e-mail I sent to Andrew Lansley, Secretary of State for Health, copied to my MP:-

OSA and CPAP; a very poor relationship between the NHS and DVLA

Dear Mr. Lansley

Congratulations on your appointment as Secretary of State for Health.

I should like to draw to your attention a situation that causes a huge problem for many people and yet one which has not only a very simple solution, but one which would not cost your Department anything more than it is already spending.

When Obstructive Sleep Apnoea is diagnosed in a patient, the gold standard therapy prescribed is Continuous Positive Airway Pressure. The time taken between the diagnosis of OSA and the delivery of a CPAP machine to the patient varies between PCTs but, typically, is several weeks. It is the responsibility of the OSA patient to inform the DVLA that s/he has the condition and the duty of the DVLA to suspend the driving licenses of untreated OSA patients with immediate effect, though short delays are sometimes experienced due to mailing report forms to the patient.

The problem to individuals is caused by the difference in time of action between DVLA suspending a driving license and the NHS issuing a CPAP machine so that therapy can commence. The patient must be compliant with CPAP therapy before DVLA will permit driving again.

For any driver, a suspended license is a considerable inconvenience. For drivers who need their car to get to and from their place of work because public transport in inadequate, a suspended license can put their livelihood at risk. For drivers who drive for a living, a suspended license means a suspended or lost livelihood.

NICE requires all PCTs to issue CPAP machines to OSA patients and, as far as I am aware, most comply with the guidelines – but they only comply eventually. They issue CPAP equipment but only after driving licenses have been suspended.

My suggestion to you and my request of you are one and the same, that you cause as a matter of urgency all NHS PCTs to issue CPAP equipment to OSA sufferers within days of the diagnosis being made. This would not require extra funding, only the maintenance of adequate stocks of equipment. Rather than waiting for a diagnosis before initiating a purchase, a PCT would need to purchase and hold stock, knowing month on month what level of stock would be required.

It is within your power to prevent the needless distress of newly diagnosed Obstructive Sleep Apnoea patients without incurring any extra costs.

Yours faithfully

Tigers Fan

I have received an acknowledgement from the DH - but don't hold your breath for a response.

So let's get campaigning with the new government! I e-mailed him at [email protected].

TF

[Tigers Fan]

Fobbed off as well!

If you're going to be fobbed off, it may as well be by the folk running the country!

Is it just me or could the e-mail below be translated as, "We're in power now and thus far too busy to bother with the electorate (for five years anyway)."

When is a good time to speak with a Secretary of State? Before the election s/he'll say 'Yes! Of course we'll do that!' A few days later it's, 'I'm far too busy and important now to talk to you.' Arghhhhhhhhhhhhh!


Dear Tigers Fan,

Thank you for your email of 14 May congratulating Andrew Lansley on his appointment as Secretary of State for Health. As you will appreciate, Mr Lansley is currently receiving a large volume of correspondence daily and is unable to respond to it all at this very busy time. I have therefore been asked to reply on his behalf.

In your email, you also make suggestions about the future policy on the issuing of continuous positive airway pressure equipment to Primary Care Trusts. I am sure you will understand that there are a large number of issues for the new Government to tackle, and that Ministers are currently looking into all aspects of the Department’s work, taking into account the current financial climate.

I am sorry that I cannot be more helpful at this time.

Yours sincerely,

Joanne Miles
Customer Service Centre
Department of Health

TF

[davejwhite]

Lobby, lobby, lobby

Well done for trying.

I wonder whether we could get up a petition. Perhaps with a few thousand signatures behind it, they might take notice.

[Biggles]

As my GP apologised for the long delay and said to me over 5 years ago after I was diagnosed "..... a doctors life is difficult because the government is funding cancer and heart attacks". Now then what can OSA lead to? answers on a postcard please................

PS TF will be ordering the sinus washing kit very soon. Thanks for the rec.

[silvercarper]

TF
Please note that I had no problem getting a CPAP machine but the hospital did not supply full face masks so I could not use a CPAP until I bought a mask.

[Tigers Fan]

Nice

Hi silvercarper

If NICE says PCTs should issue CPAP and says nothing about masks then why would they? Makes perfect sense to an accountant, no doubt!

TF

[Grumpy]

I must have been lucky

I was referred at the beginning of December and elected to go to Chesterfield Royal Hospital as there is better (and cheaper) car parking than at the Royal Hallamshire in Sheffield. (I live in South Sheffield).

My first appointment for Oximetry was scheduled for New Years Eve; but subsequently cancelled when they realised that no-one would be working the next day! I then had to cancel 2 appointments because of bad weather and finally got seen at the beginning of February.

I got the kit on Thursday and had a review appointment on the following Monday. Apparently I scored 13.5 on a scale where 0 is good and 15 is treatable; as I was borderline they decided to do an Embletta test and gave me the kit the next Thursday and reviewed again on the following Monday. This time I scored 35! They issued me with a CPAP machine and full face mask straightaway and gave me an appointment for the following Monday.
The following Monday they decided I was doing 'ok' and I managed to wangle a humidifier out of them and a large insert for my mask.
I only had to stop driving for one week.

I had a follow-up appointment one month later and got them to give me a nasal pillow to try which I am still using. I still have the full-face mask.
My next appointment is in March 2011.

Apparently Chesterfield Royal Hospital is a centre of excellence for Sleep Apnoea; the respiratory department even has a ring-fenced budget for it (as well as one for lung cancer). I just got lucky in picking it.

[drewsnoresnomore]

still waiting for a decision

hi guys and girls,
After speaking to my sleep clinic and having confirmation from them that they have sent info back to dvla i phoned the medical branch to be told my case was in a queue with the board and will be dealt with whenever!!!!

As I need my hgv licences for work it is causing me no end of issues and it could lose me my job and liveliehood but I doubt if dvla are worried about that.

I know they have a job to do but pleeeease surely they can see the issues that the delays are causing

I wait with baited (lol) breath

[tallishbloke]

It is refreshing to come across individuals who actually reseach their conditions and treatments instead of just blindly following the lead and the advice of the clinician. Having said that, people often do not inform the DVLA until after they have commened treatment on CPAP.

On a more general note, I am always saddened to see "NHS bashing". It is true to say that there is a bit of a postcode lottery when it comes to the treatment of any illness, not just OSA -this will never change. Perhaps people would prefer the American insurance system - I wonder if people realise the cost of this treatment..... its worth checking out just the price of a CPAP machine and mask, let alone the cost that goes into diagnosing the condition and the provision of the specialists flor people to be seen by....

sleep well!