Diagnosis – the UK experience
Question:
Following my postings of early January ‘Anyone in UK’ I said I would keep the list informed of my progress through the UK NHS (National Health System). The blood tests were analysed within a week. I have a feeling that the Thyroid results were my GP’s focus and they were normal. He was surprised at a higher than average glucose level (the blood had been taken after fasting) and we will have another blood test next week – and further hospital tests if necessary – in case diabetes is a factor. Fatigue, I believe, is also a symptom in diabetes. I have now been referred to a sleep specialist at the ENT hospital and have just notice of their earliest available appointment – first week of May this year. Overweight contributes to problems in both apnoea and diabetes so I am working around to gradually improve my diet. Luckily (?) I know there is a lot of surplus in my present one! Clive.
Response:
On Thu, 10 Feb 2005 10:35:52 -0000, "Clive Sollish" <clivesoll…@REMOVEyahoo.com> wrote: >Following my postings of early January ‘Anyone in UK’ I said I would keep >the list informed of my progress through the UK NHS (National Health >System). The blood tests were analysed within a week. I have a feeling that >the Thyroid results were my GP’s focus and they were normal. He was >surprised at a higher than average glucose level (the blood had been taken >after fasting) and we will have another blood test next week – and further >hospital tests if necessary – in case diabetes is a factor. Fatigue, I >believe, is also a symptom in diabetes. I have now been referred to a sleep >specialist at the ENT hospital and have just notice of their earliest >available appointment – first week of May this year. Overweight contributes >to problems in both apnoea and diabetes so I am working around to gradually >improve my diet. Luckily (?) I know there is a lot of surplus in my present >one!
Clive Having been through the mill on both of these issues in the last year and a half (NHS and private), I think that I can give you some information that will be of help. Although diabetes isn’t strictly on topic for this group, there are a few people here in the UK with both OSA and diabetes and there are overlapping factors with all of this. Have a look also in the alt.support.diabetes.uk newsgroup. This has good people, good signal to noise ratio and predominantly good help in my experience. The first point to realise is that you do have to look at the UK situation of what is available to you. While some of the clinical practices in other countries may appear to be or actually are better clinically is always a debate, but rather an academic one since it is not operated where we are. The NHS, especially, has cookie-cutter approaches in terms of the diagnosis, treatment and management of most common ailments. A lot of this comes from the National Institute for Clinical Excellence (NICE). Take a look at their web site and you will find papers with guidelines for many things. These are handed out to the Primary Care Trusts and Hospital Trusts. Many of the guidelines have more detailed clinical information with references to the clinical studies to back up the policies. One thing that you will realise is that the thinking behind many of them is how to obtain the optimum outcome for the minimum expenditure, in an attempt to cover as many people as they can. Therefore you will notice that diagnostic tests and various other factors are often a subset or organised in a different way to other countries. Rather than throwing a battery of tests at you in one hit, it gets done in stages, proceeding to the next step depending on the outcome of the present one. This of course becomes intensely frustrating for the patient because of all of the hanging around waiting for appointments etc. The game is partly one of keeping waiting times below certain figures, so patients are passed from step to step with a "shortish" delay at each step. Of course the elapsed time from start to finish can be quite long, but overall it doesn’t get flagged on the statistics. This is all from my own experience and from talking to various people working in the NHS at several levels who have admitted that this is what goes on. Once you are in the system, you can squeeze a bit for sooner appointments, but frankly this is quite limited. If you are flexible on timing and cancellations then that can help. The GP is an important factor in it all because he is the gatekeeper to whichever paths you need to follow, so it is important to push for the right referrals with him. If you feel that you are not getting the support and referral that you need, then you can change – even to another doctor in the same practice. Obviously frying pans and fires spring to mind here though. My own experience with OSA was one almost of desperation from feeling totally exhausted as a result of poor quality sleep, low oxygen during sleep and so on. Because of this and my business activities, I had come to the point where it had to be addressed and as quickly as possible. I discussed the whole thing with the GP and it was clear that via the NHS track, OSA diagnosis and treatment was going to take 6 months, possibly more. There were no options to accelerate that. I have a fairly standard UK private healthcare policy. The insurer will pay for diagnosis of ailments like OSA, but not for the equipment such as CPAP or follow-ups. The guiding principle is to address acute and short term, especially surgical issues, but not anything chronic. So for OSA, they draw the line after the study and I had to pay for the CPAP equipment and follow up visits to the specialist after the first. I went for this, and from GP referral to diagnosis and having first CPAP machine to try took two weeks. This consisted of two meetings with a consultant pulmonologist plus overnight sleep study. Both in this scenario, and almost entirely in the NHS, this type of study is set up specifically to screen and diagnose OSA and other sleep disordered breathing. They do not tend to do polysomnograms in the first instance unless there is strong evidence to suggest a need. The argument is that if the patient has OSA, it needs to be treated anyway. If the patient still has other sleep issues after that (typically neurological in nature), then they go down that track. The result for me was instant success. Had there been problems with masks etc. the backup was there from the manufacturer directly. I’ve had a couple of follow up meetings with my pulmonologist this week and we talked briefly about how OSA diagnosis and treatment works in the NHS. He does some work in each sector. He told me that the biggest issue is that the whole area is underfunded – it just doesn’t have the visibility. You can deduce this from the fairly scant information that NICE has. There has been a Sleep Apnoea Bill going through Parliament as an attempt to raise awareness and get resources, but it rather looks as though it will crash and burn this time. The thrust of it is that OSA is a serious problem in terms of long term consequences and the potential cost to the NHS to deal with them and that there is a lack of joined-up-ness with people not being allowed to drive with untreated OSA, but there being inadequate resources to deal with the problem. In the UK, virtually all of the NHS diagnosis centres are run in respiratory medicine departments of hospitals (look on the Sleep Apnoea Trust web site for details), so you get to see a pulmonologist. Considering the protocol of OSA diagnosis first, this is reasonable. You get referral elsewhere if needed for other tests related to other sleep disorders. My pulmonologist told me that in his centre they get quite a lot of patients with snore and not OSA and a small number with various other sleep disorders. These people are referred on to neurologists etc. I’m a bit bothered that your GP is considering putting you along an ENT track. First of all, very few of the OSA diagnostic centres are in ENT departments. Secondly, ENT surgery is now specifically discouraged within the NICE framework, so as far as I am aware is hardly ever used in the NHS world. It’s entirely possible that your GP is not up to date because surgery was considered an attracive option a few years ago. It was relatively cheap to do and the hope was that it was a permanent cure for OSA – you can see the attraction. Of course, experience has shown that soft tissue surgeries like UPPP have poor success rate often in a short timescale as well as it not being reversible. It’s possible that the GP believes that there are other ENT issues to correct, but to me this raises a red flag, so I would ask the GP what the intent is of the ENT visit and what he understands that they typically do. That will tell you more. So….. regarding OSA, from what you describe of yourself, you are a candidate. If you don’t have any private medical cover, but you can find approx.
