NHS equipment differences

[criptic]

Hi, I've just started using NIV - so I use my mask for BIPAP.

My NHS Trust that provides this is via the Brompton and I wasn't given a choice of mask - just given one to take home after a 5 minute trial sitting up in the hospital. I got very sore once I started sleeping in it with open pressures sores around my nose. I was offered a second type to try. (moved from Flexi-fit 431 to a mirage). I was told they only purchased these two models due to costs. The Mirage was even worse. The flexi fit pro forma (two models up from what I have) might have been a better model. I am left sore with both and all that has been offered now are creams and basically left to pad out with whatever I can find/afford.

It appears that some NIV users have had better fittings for masks. It also appears that the latest models of the varying types are being offered to CPAP users but not those who have the same mask needs but use BIPAP.

I am wondering - what was the mask fitting and service like in your area - i.e. is this just another case of NHS postal differences? I think my hospital are sacrificing patient comfort for cost?

Is their anywhere you have been that let you try out different masks to make a private purchase? I see their are some events/conferences for CPAP users but BIPAP patients seem to miss out on these unless we can seek in - when the issues are the same for many things.

Lou

[symmit]

Hi and welcome.

It seems to be very hit and miss on the NHS. Unfortunately private is little better, and mask fit is hit and miss.

Give us some more details on the fit issues your having and the collective wisdoms may be able to help, I'm using a Forma occasionally, my next purchase is likely to be a Quattro FX which is getting rave reviews.

[Richard]

As NIV patients you and I are in the minority on this site, Lou. Ventilation is somewhat different to CPAP Therapy, but the Royal Brompton has a superb reputation for respiratory conditions, not that I have first hand experience, but by recommendation.

The Resmed Mirage is a good, well-constructed mask; I have used one with my ventilator for around six years without a problem.

To make your mask fit more comfortably, you have probably been issued with a roll of 1" wide flannel to line your mask and make the fitting more comfortable - forget it!

Here's what you do: buy from this site a pack of Remmzzz face-mask liners. These are fine linen outlines that fit between your face and the mask; there are also, in the same pack, pieces that fit across your forehead and protect against the mask there. You may find that using a wad of these will largely solve the problem of the mask rubbing against your face. You should also use ISOPEL barrier-cream. Slather this on round your nose and chin before you get into bed, everywhere that the mask touches your face and forehead.

Let us know if that works, if not, we can try Plan B.. . . .

regards

Richard

[criptic]

Hi, thanks for your response. It's just frustrating that my NHS supplier offer only two masks - if they don't fit then they said I will just need to use the cream you mention (they are sending me some) and patch up open sores! Never mind the fact that mask rub is agony!

Unfortunately I can't use material or the clingy mask liners (well any kind really) because I can't move my head or arms - so my husband has to both hold my head (laying down) and fit the head gear. It's really difficult and he hasn't a spare hand to keep any type of liner in place or even hold the mask to my face whilst trying to put the head gear on!

The hospital never discussed how we were actually going to do it physically! Never tried it laying down in the hospital.

I get frustrated when other, easier to put on and perhaps a better fit type of mask exist which may spare us an hour long ritual getting it on and operational each night - but no nhs funds to try out anything. Other people seem to have an NHS that enables people to try out a range of masks whether for NIV or using cpap. However, I can't afford to buy other masks to try at £120+ a go!! Ended up in tears last night it was so frustrating and we both had only a few hours sleep. I've never even had a proper mask fitting session to measure my face or anything!

I think I will stick to plasters (pardon the pun lol), the cream and my flexifit 431 (and gauze padding under the head support!). Will keep an eye on the forum as new ideas and things are tried in case I hear of something that will help!

Many thanks - Lou

[Barely Awake]

I use 3 snippets of the one inch micropore medical tape (often spoke about on this forum) to hold the liner in place whilst I slip on my mask and it holds it in place if the mask shifts or is removed for any reason. It also helps the liner keep its shape to be reused by reversing the following night (saving pennies), then I wash them at the end of the week in one of those net bags or balls you are supposed to put washing tablets in.
Works for me but may not suit everyone.

[Richard]

Hi Lou,

Try ringing your GP practice and speak to the practice manager/nurse. Tell them of the difficulties you are having in getting the mask on and getting one that fits properly.

Tell them you need some help because you have restricted movement and say you need a nurse to help you in putting the mask on every night. If the mask supplied by the Royal Brompton doesn't fit, the practice should be able to source an alternative through the local Primary Care Trust.

You should also try contacting your local authority and the department dealing with disability/health issues (social care?). They should be able to supply a carer who would come in at the times you request. As an NIV patient you should qualify for the highest level of Disability Living Allowance.

You must have a 'gasket' between the mask and your skin, but you should not have to put up with something you cannot manage properly.

Richard

[James @ Intus]

Is their anywhere you have been that let you try out different masks to make a private purchase? I see their are some events/conferences for CPAP users but BIPAP patients seem to miss out on these unless we can seek in - when the issues are the same for many things.

Lou

Hi Lou,

It would help to know whether you mask has:

- a CO2 exhalation port (probably not as it's NIV)
- an anti-asphyxia valve

We do one NIV version of these masks:

http://www.eu-pap.co.uk/products/masks.html?manufacturer=159

Can send you a sizing gauge free of charge.

I can also recommend contacting the people behind this site:

http://www.asiliveandbreathe.co.uk/index.html

They have a lot of experience with NIV in patients with a series of complex health issues.

[Alleycat]

I am wondering - what was the mask fitting and service like in your area - i.e. is this just another case of NHS postal differences? I think my hospital are sacrificing patient comfort for cost?

It definitely is a postcode lottery. My hospital has lots of different masks. Because it is a much bigger service than the private one they actually have a better selection than the private clinic. It's not really acceptable for them to give you a mask that is not fitting you properly.

[iwant2sleep]

It definitely is a postcode lottery. My hospital has lots of different masks. Because it is a much bigger service than the private one they actually have a better selection than the private clinic. It's not really acceptable for them to give you a mask that is not fitting you properly.

Having read this thread, I realise how lucky I am! I've just returned home with a bipap machine after 3 wks in hospital, during which time I tired 5 masks (all with problems, unfortunately, due to my very petite frame and skull size) and I am confident that my resp nurse will allow me to try a few more; she told me to call her if I continue to struggle and she will see if there are any others she can get hold of for me.

I live in Nth Wales, which is generally not a great place to get sick (for my cancer treatment I have to travel to Manchester, over two hours drive away) but on this occasion I seem to have done pretty well.