1. I have been indisposed for the last 10 days or so, and stayed away from the keyboard and thus have only today read the thread started by you on 08 September.
You raise a number of points and ask a number of questions. This is me dealing with them not in any particular order. I will try to be informative. And in case you're wondering if what I say can be relied on, I might add that, for a significant part of my life, I worked as a medical journalist.
2. And you are right in saying that the NHS is in bad shape at the moment. There are many people, who think that the running down of the NHS by the present Conservative (roughly equivalent to US Republican) administration is quite deliberate. And many within the Conservative party have called for an American style insurance system.
Part of the running down of the system has been (a) the government preventing nurses' pay going up – so that the average nurse's salary is effectively 19 per cent lower than what it was 12 years ago. And (b) the goverment preventing doctors getting paid more – so that the average hospital doctor's salary is effectively 25 per cent lower than what it was 12 years ago.
And it wasn't just that the Covid pandemic took money out of NHS's budget. Before that, and just to keep up with the increased number of people living longer, and to just to cover the wider range of possible and effective treatments, it was calculated in 2010 that the NHS would need an annual increase of 4 per cent per year. On average over the 12 years since, the Conservative government has allocated an increase of just 1 per cent per year
But, bizarrely, the money not spent on the NHS has not gone somewhere useful. The smaller sum of money spent on health did not result in what a UK financial conservative – like a US financial conservative – wants – lower taxes.
Instead, money has gone on vanity projects, such as the still-unfinished high-speed train from London to Leeds, etc, and on other pork-barrel boondoggles.
So, yes, athinglikethat
, I do know that (a) for NHS family doctor patients, it's hard to get an appointment, and (b) for NHS hospital doctor patients, it's hard to get a referral for specialist treatment – especially in cardiology, lung function, dermatology, and rheumatology.
As you probably know, but our American cousins may not, ten years ago in the UK the longest any NHS patient had to wait to be seen by a specialist – for any condition – was 18 weeks. And many were seen much sooner than that.
The waiting time now for rheumatology in my area is two years.
Of course, those who can afford it are 'going private' –¬ but not with this or that medical insurance outfit (there's that old 'pre-existing condition' thing) – but by selling the family heirlooms, or downsizing the house, and so on.
What I'm saying, athinglikethat
, is: I do know the context you are having to navigate in.
3. The first thing I notice from all that you have posted here – and keeping in mind that I am only a journalist and not a doctor or nurse – is that what has been going on is: finding the diagnosis – with the complicating factor that connective tissue disorders – if present – cut across other categories.
I hope the POTS notion bears out. As you say, there is a treatment.
However, because of that cut-across characteristic, I still think it's worth getting other areas optimal. So for example any tendency to arrhythmias will be minimised by building and maintaining good breathing habits.
4. You ask about the oxygen charts you posted and I think they look OK – but in the UK, my opinion isn't worth anything.
Remember, under OfCom rules, I can't give you an opinion.
But I can give you infornation.
If you ever turn up in A&E (US, the ER) and they put that clip on your finger, and the number appears on screen, and if it is between 94 to 98 (and including those two) then the people looking after you will be happy.
If it falls to between 90 and 94 and stays there
, they will keep a watchful eye on you.
And if it falls to below 90 and stays there
, they will most probably do something.
So having said that, I invite you to look back over your charts above, and form your own opinion.
5. Looking for a diagnosis II
Have any of the people seeing you asked if your symptom picture might be hyper-ventilation syndrome? Here I am quoting one of my doctors, and a journalistic source, Dr Claude Lum, a FRCP, who campaigned assiduously for his colleages not to overlook this very prevalent syndrome.
It is not only widely overlooked, he said, but it is relatively easy to treat.
6. Looking for a diagnosis III
You ask if the device they used to test you for sleep apnea – the WatchPAT device – might not be relied upon because you only had one night with it – and surely that is unrepresentative – and by implication, wearing it for a week would be better.
Not so. The WatchPAT is now a third generation instrument and they have compared its use with the previousl 'gold standard' – the at-home three-channel sleep-study that the NHS was offering 15 years ago, and which studied finger-tip pulse-ox, physical chest movement, and in-and-out nasal flow – and the WatchPAT's ability to provide a diagnosis is just as good – while at the same time the physical managing of the study is easier, and there are fewer things to go wrong.
In short, this machine is reliable. If you have sleep apnea, this machine will show it. Oh, and it will also indicate how severe.
Another piece of information: sleep apnea varies in severity, going by the number of apneas per hour. If it's 0 to 5 per hour, this is called 'normal'. If it is 5 to 15, this is 'mild to moderate'. If it is 15 to 30, that is classed as 'moderate to severe'. And if the number of apneas per hour is 30 and above, that is called 'severe'.
The NHS sleep medicine departments only provide treatment at 15 and above.
That means it's possible in the UK to have, say, 10 breathing interruptions per hour – which many people might find quite disruptive – but the NHS won't treat you.
And if this is you, athinglikethat
, then you are allowed to treat yourself, and/ or to go to one of the independent suppliers which are available now.
NB. If you buy your own machine (and I always recommend buying direct from the manufacturer for warranty reasons), then you will need a prescription to give to the vendor.
Your GP can sign it, and if you do indeed buy from one or other of ResMed or Philip Respironicss, they can send the form electronically so it can be 'signed' on screen.
7. Speaking of the private sector providers, I note that you ask about the possibility of renting one of the better machines to (a) use it as a data-providing source for a week, but also to (b) find out if APAP treatment passes the simple test: Do I feel better? Do I feel more rested?
And thus provide a diagnosis.
There are several problems here. The most prominent being sterilisation. Especially after Covid.
Four years ago there was at least one place in the UK, in London, which hired out CPAP machines by the week.
But hire was expensive – £100 per week per machine.
And as far as i could see, they offered neither of PR or ResMed – the two machines judged by users
as 'best on the market'. You would get whatever brand they decided to give you.
These days and post Covid, I don't know of any private providers currently who lend.
Now the position with the NHS is different. For one thing, all their machines are on permanent loan. If a patient decides after, say, three months that 'This treatment isn't for me,' then they just hand back the machine. And the hospital's engineering department has the time and the tools and the level of committment to open up the machine and render it cross-patient sterile..
But as I said – and this is AFAIK – none of the current private providers of SA treatment in the UK wants to be in the rental business. But they are willing to sell a machines to you.
8. BTW, in my role as consumer guide, I add that some private providers also offer some
user support. And I stress that is 'some'. And some don't offer any.
One provider which looks to me like they do a good job is bettersleep.co.uk
– run by two doctors whose day job seems to be working in one of the sleep medicine departments in the Bristol area. And their standards appear to be the same as what they are 'at work'. Ie, high.
Their 'gimmick' – and something that wasn't widely available before the pandemic – is the use of Zoom software to interview you and to have their physiologists talk you thru mask-fitting and any other problems in getting used to treatment. And from what I could see, they use the mobile phone network to both read your progress and to remotely alter your machine's settings.
And because they are in start-up mode, athinglikethat
, they might be better presdisposed to help you. In their website, for example, they talk about being happy to treat people they haven't tested and happy to test people that others might go on to treat. Which shows an admirably flexible attitude.
And being fully qualified doctors, with years of experience of SA, they might have something to say about that when presented as a 'co-morbidity' with Ehlers-Danlos.