NHS My sad Tale ....

[Joe McManus]

Hi and welcome! Great first post, it's fine where it is considering the great tips at the end.

The NHS/NICE/Government is reviewing their own stance on CPAP and it looks like come January every PCT will HAVE to dedicate money towards sleep apnoea therapy. So on paper it's all set to improve. But... There is no evidence more money actually becomes available so they'll have to cut elsewhere, possibly making the customer services even worse. We'll have to wait and see.

You did what I did; remove yourself out of the mess and invest in your own health privately. I bought my own equipment too.

If you can get them for free, great, do it! But here are the benefits of buying them yourself:

- You pick! You don't get a second hand big one from the 80's but a shiny new one. Why get a turntable when you can get an iPod Nano?
- Accessories that match. Integrated humidifier, same colour equipment etc.
- Speed! Order today, get it tomorrow. Delivered. No waiting, no traveling.
- No risk of catching superbugs when waiting amongst the ill.
- No dealing with stressed/rude staff.
- Own it. Do with it what you want.

Downside:

- You have to pay. But it works out at roughly £0.50 a night over 5 years (new mask yearly, top of the range machine) which can't be a bad deal compared to waiting lists etc.
- No fitting help other than some print guides and manuals. It's a bit of a DIY job without an experienced nurse. Some trial-and-error at your own expense is to be expected.

[fromtheboro]

Hi All,

Well I have been reading this forum for about 6 months now and its so good to hear other people have benefited from the advice and postings as much as I have.

So here is my NHS story ….

My wife is a Paediatric Sister and about 4 years ago she was getting worried about my sleepless nights, loud snoring and what she described as me “holding breath”. I travelled to the sleep clinic at Battle Hospital, part of Reading Royal Infirmary. I had the monitor strapped to me over night and I was diagnosed with one of the highest occurrences of OSA of any patient so far. Its hard to remember the exact amount but it was in excess of 130 episodes per night. They supplied a Remstar Plus and Ultra Mirage Mask, I was fitted by the sleep nurse and well you can guess the rest … but I will say it was exceptional service and care for all those involved.

They sent me yearly appointments to check equipment and to gauge general heath condition and replace any worn parts, mask etc. The problem I found was that they only had a limited scope of equipment manufacturers and on a subsequent follow up appointment a month later I was supplied a separate unit humidifier as I suffered from a really dry nose and throat and this resolved the problem, but this became cumbersome and turned my bedroom into a hospital room. I decided to purchase a Respironics Humidifier for the Remstar about 18 months ago, perfect combination (god bless eBay)

About 2 years ago the sleep clinic was transferred to the chest clinic within the main hospital and that’s where things started to decline. No more appointments were made, I had to request replacements for broken or worn parts. This was a pain as I had to travel to pick up the parts personally as they would not post them.

Most recently I was diagnosed with high blood pressure. The doctor suggested that it may be my machine in need of maintenance or my mask needing replacement.

He referred me to the chest clinic. At the Reading Royal, The couple hours turned into my worst nightmare possible. I was waiting for over an hour (yes I know the NHS is over burdened so I expected to wait) and I was greeted by a nurse technician not the sleep nurse. She was the rudest woman I have ever met in my life, no caring nature or concern over my condition, just lead me into a room and asked for my machine.

I explained that I had no appointment in two years and said that my doctor had referred me to check my machine as my high blood pressure may be as result of this. The nurse basically went off like a firework and blasted me saying that I was to make my own appointments and how could a doctor relate my high blood pressure to my CPAP machine. I was stunned to say the least. She returned my machine after verifying the set pressure, replaced the silicone mask piece and I had to request new filters. She grumped away and returned with two filters saying that in future I should replace them myself including all mask pieces as funding is now being withdrawn as your local GP pays for these consumable parts, now this was a shock and I don’t think is right.

I have now bought my own Respironics M Series APAP machine and wash my hands of the NHS. I think that Apnoea support is diminishing within the NHS and the general level of care we are getting is rubbish to say the least. I will be handing my equipment back before Xmas with a letter to the Chief Executive of Reading Royal detailing my experiences. They need to know how bad their clinic is ! I’m never very reactionary at all but I feel I need to do this to protect others from this treatment.

Now don’t let me put you off seeing your doctor, my advice is to get diagnosed and your condition confirmed BUT and this is a big BUT, stand your ground at the clinics as they have a duty of care to help you in your condition, if you are unsure ASK, if you need anything ASK. I have had a bad experience at Reading but it may not be the same with your clinic.

My advice you all you newbie CPAPer and even you older more wiser CPAPer’s –

• Clean your filters every month (replace the pollen filters)
• Make sure you get your mask replaced every six months (insist if it’s the NHS)
• Clean your mask/water tank every night (I’m a little obsessive over this)
• Clean and replace your water in your humidifier daily, try and avoid tap water
• Use Sterilised or Distilled water
• Insist on seeing the Sleep Nurse before the technician (NHS)
• Get your lung volume & machine pressure checked yearly, you change you machine doesn’t
• Keep reading this forum and share your knowledge & experience

Keep the good work going guys, best CPAP/Apnoea forum worldwide

Apologies to the moderators if this is posted in the wrong forum, please move it accordingly