Urgent - Nippv machine - Any Advice? (UK)

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MishMash

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Hello

Am trying to get access to a NIPPV machine quickly ... Does anyone know where we can get to buy or rent one from urgently ?

My mums hubby has MND/ALS and is in final stages - he was taken into hospital and ahs been rescusitated a few times, he has chosen to decline a Trachy tube and now has a NIPPV machine in hospital..... He desperately wants to get home, we have managed to coordinate specialist care who can work with him at home and are trained in NIPPV equipment but we need to get him the equipment asap.

Too much bureauocracy and too little time....

I have this evening found the ResMed website which we are contacting asap tomorrow, but if anyone else knows of any other network or services which can assist in our situation it would be a great great help :)

We are in the North West.....

Thanks ........

MM
 

Granny

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hi Dana,
According to the site I looked at NIPPV is a Nasal Intermittent Positive Pressure Ventilation machine, or what we call a BiPap. Guess it is called NIPPV in England.

MM:
Hope you were able to get what you needed, and quickly!
Hugs and prayers to your family at this hard time.
 

Al

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Another company is Respironics. They have a distributer in the UK. Google search Respironics and you will find the site. Good luck.
 

MishMash

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Got there eventually!

Hi again

Didnt realise this chat room was all USA... I just joined whilst surfing the net looking for a NIPPV machine (I found out today NIPPV is a generic term in the UK for these respiratory machines like HOOVER is for a vacumn cleaner , so sorry if I confused everyone....)

Anyway I appreciate your replies... thank you all.... and I DID manage to get more information this morning and have a stock order and timescales in place if we need it.

I have information from the hospital about the specific model they recommend he needs for his respiratory assistance.

In the UK all our health services are state funded through national insurance contributions which are deducted from wages the national health service (or the NHS as we call it) it is very good overall and and we are very lucky here in the UK, BUT there are so many waiting lists for so many things, and all the form filling, co-ordinating of care services, assesments and delays can be really long and frustrating .... especially when someone needs help fast!
So we hope we can get one of these machines this week for his through the NHS otherwise
we will be digging deep to pay for one! (They are about £3500-4000 in the UK)

My Mum covers most of his care needs at home and he gets all his equipment, power chairs, hoists, special beds, etc.... paid for or loaned from the NHS, and all the home nursing medical care staff at home is paid from an allowance from the state and the state also pay the primary carer (my mum) a small allowance towards their contribution in caring for him at home too. So overall he has been well provided for.

He is very ill and tired and so much wants to get home so he can see get to see the children, watch over his garden, hear the birds, see the sky and smell the flowers.......

My Mum is knackered! She is running on adrenelin staying in the hospital with him overnight (NHS staff deal with the main Medical needs but are unable to give him the specialist care he needs at the moment. He is waiting to be transfered to another hospital ward (which is currently closed because of an infection epidemic!) there he will quickly get assessed and hopefully get the equipment arranged from the NHS and he can go home.....

We try and keep his spirits up, and he is looking forward to getting home soon ... It feels a bit like the Of Mice and Men story by John Steinbeck...... where they are following the dream of getting to the garden and being able to tend the rabbits......... I hope he can realise the dream.....soon .......

It is a difficult journey, but he is not alone, many many friends and family support him,

Love to all, and Thank you for your payers :)

MM
 
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Al

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Hi there MM. You are mistaken. This site is actually Canadian. It is an off shoot of the old ALS Society of Canada website. David the Administrator didn't want to give it up so with the help of a few of his friends and a couple of us older members we moderate and try to keep things on track. We ask people to indicate where they're from on the registration so that we can look in the corner at your profile and know if we are giving an answer to someone in Canada the US or GB. We have members in about 30 different countries so it helps to have an idea of who you are talking too. Hope we can be of some help. There are other UK members so they may give advice as well.

I actually checked today and we have registered members from 92 countries. Even I didn't think we were that popular. Now 92% are from North America but 92 countries with ALS patients makes you think.
 
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ekoozmin

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Hi MM,

and there is lots of crossover between this forum, BUILD, and some of the other ALS/MND forums. But, you may get more local advice there.

My Dad uses a Respironics Synchrony. Finding the right mask has been a challenge. If your stepfather is told he has to wear a full face mask, be very careful with the bridge of his nose--that's where all the pain will be unfortunately. These mask manufacturers don't have any idea what patients like him have to deal with.

Best of luck--sorry you and your mother have to go through this.

Liz
 
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Al

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Hi Liz. I use the Res Med Ultra Mirage 2 and have not had any problems. Good fit and seal and soft gel double seal. I occasionally get a bit of skin redness on one side but a bit of cream clears it in a day.
 

kathmc

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Hi mishmash,

Everyone in the League of Woman Voters group I was in in Carbondale raved about the UK & Cancdian health care system. I see from your post that it has problems, as has any bureaucracy. I have a nosy question please. How old is your stepdad? I want to know this because of something my nurseing aid was taught in school last semester.

Just last week she was told that there is no pain involved w/ ALS. This teacher has a private ALS patient that can not even blink. I do not know if that is true at that stage but I have not read anything like that. Welcome replies from everyone on this. Plan to call or write the school if this is incorrect.

Hope things have smoothed out for you & yours.

Kathy
 

ekoozmin

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Mishmash, Al, and Kathy--Couple of things:

My dad uses the BiPap 24/7, taking it off only to eat. We've tried lots of masks. I think he is using the ResMed UltraMirage (not sure if it's "2" or not, but it covers the nose and mouth). He has a long and narrow face, and neither the medium nor the large size fit properly. It's been explained to us that he is one of those rare ALS patients who chose not to vent, but has lived extraordinarily long using only a BiPap. Everyone who has evaluated him says they can'r believe he is still alive.

Now to the PAIN issue, because my Dad suffers a lot of pain. It's true that the death of the motor neurons is not painful, but the ensuing results are. As my father's muscles became more and more atrophied, he lost all his padding. Walking skeletons do not walk comfortably. He gets very painful pressure sores along his spine, cramps occasionally, horrible constipation, and his mask eats into the bridge of his nose, which he says is excrutiating. His posture has collapsed so radically that it is painful to get in and out of bed and wheelchair, or on and off the commode. He says he feels like a sack of potatoes being thrown around. He has not responded well to morphine and quit taking it months ago.

As for the poor patient who can't even blink, I sincerely hope that he is asked repeatedly if he is in pain and what needs to be adjusted in order for him to be comfortable. If he can't blink, perhaps they should test and see if there is even a shred of movement left anywhere that could help with communication. There are all sorts of switches that can be activated with even the slightest of movement. These switches can be connected to a computer system and used for basic answers to questions, or calling for help.

Basically, I hope that the teacher is not assuming that, just because he is paralyzed, he must feel no pain.

Liz
 

Al

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Hi Kath. The Canadian (Ontario) health system is pretty good but is having it's problems as are systems everywhere from what I have read.
Hi Liz. I have a round face I guess and use a med. full face as they call it. Covers nose and mouth. Iam not at the stage your dad is but I can say that while for the most part there is no pain directly involved with ALS there is associated pain. As you describe it it is fairly accurate. When a muscle cramps it hurts like heck. Most of the muscle is gone in my hands. That brings nerve endings closer to the surface. Hot is hotter, cold is colder and when you bang your hand on something it hurts like blazes, just like a burn. So there is pain, maybe not directly from ALS but associated with it.
 

marlo

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Hey Liz and Al,
I agree completely about the pain thing with you. I had a neuro tell me that i would lose my motor skills, then my breathing would become more shallow,, my body would build up with carbondioxide, i would go into a coma and die. However, he then said,, not to worry,, cause there IS NO PAIN. Spoken like a person that ,, doesn't have ALS.

I do have a question about feeding tubes. Where do they normally put it,, and also,, does this mean the end of eating away from home?

Thanks in advance

Love and Prayers
Marlo
 

Al

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A feeding tube is usually inserted in the abdomen around the navel area. A few inches either way. It does not mean the end of eating away from home but that would depend on the person. Some can still eat regular food with it. I had a friend that used one for feeding when he had cancer and he would come over and we'd eat dinner and he would have his bag of ensure hanging from the dining room fixture while we ate. Sometimes he took longer to get his 2 cans down so he'd sit in an easy chair after dinner and finish with it hanging from a light fixture. They put in a short tube that is easily hidden under your clothes and you put longer hoses together depending where you hang the food container. He would still be able drink a beer while he was getting dinner.
 

Jane

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mask irritation

Hello: The problem of irritation on the bridge of the nose when using BiPap 24/7 is difficult but not impossible to deal with. We used a cream called invisible aid ( made by Alloette cosmetics) or another called Cavlon then cut pieces of Duroderm in a tear drop shape to go down each side of Lyn's nose and one more rectangular piece to go across the bridge of her nose. The duroderm is self adhesive, soft and seemed to give just the right amount of padding can be changed easily as needed. eventually we had to cut pads of duroderm to go under the mask straps as one side bothered her. We were very sucessful with this method and were able to keep her skin from breaking down into open sores.
We also used this method on her ear, as she spent most time on one side it would quickly breakdown and become open. The combination of duroderm and a piece of soft foam cut into a doughnut shaped helped the ear for her, but it was the most troublesome and needed constant attention.
There most definitely is pain with ALS when muscles no longer work they hurt!
Hope this is of some help .

Jane

P.S. I donot work for or sell Alloette just know it is a good product.
 

marlo

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Al said:
A feeding tube is usually inserted in the abdomen around the navel area. A few inches either way. It does not mean the end of eating away from home but that would depend on the person. Some can still eat regular food with it. I had a friend that used one for feeding when he had cancer and he would come over and we'd eat dinner and he would have his bag of ensure hanging from the dining room fixture while we ate. Sometimes he took longer to get his 2 cans down so he'd sit in an easy chair after dinner and finish with it hanging from a light fixture. They put in a short tube that is easily hidden under your clothes and you put longer hoses together depending where you hang the food container. He would still be able drink a beer while he was getting dinner.
Thanks Al, its just that a restaurant is my primary outing and figured it would be pointless to go to one if and when i get to that next step of needing a feeding tube.

Marlo
 
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