Overnight NIV

[eurocamper]

Hi Everyone,
I wondered if anyone could give me some advice, Martin has been told he needs to use niv overnight. The problem we have is he has no speech and little use of arms and legs, so if he needs repositioning during the night he grunts and I go and move him, when he has his mask on he cannot make any noise so we are not sure what he can do to alert me.
The other problem is martin could not remove is mask at all and the respiratory nurse told us it would be better to have waking carers every night, we have Marie Curie sitters for 2 nights but what can we do for the other five, I would find it impossible as martin needs a lot of help during the day. We have chc carers for 1 hour in the morning and ten minutes at night just to get Martin into bed, would they provide night care as well?
Would really appreciate your opinions on this.
Thank You

[Ellie]

Hi EC,

First, I have a silly question for you, but are you sure Martin's grunts are not audible with his mask on? Do you use a baby monitor with volume turned up high to hear him? (I do, that's why I ask.)

Also, can he move his head from side to side, or do a few "pretend" yawns to move the mask enough to let some air escape and trigger the NIV to alarm? (My favourite trick!)

If he's any hand or foot movement, a wireless doorbell could be an option, or place it by his head. I am not talking about a push button bell, but one with a large area with which to make contact - maybe with his heel, whole hand etc.?

Failing these, it's worth asking Martin's OT for possible solutions.

Sorry, I can't help you with the night sitters, hopefully others can, only to say it's definitely worth asking for them.

Love Ellie.

[Kayleigh]

Hi Eurocamper,

I don't have personal experience of CHC or using NIV, but I have read some information which might be helpful:-

- on the NHS website, info about CHC (info. under the heading 'NHS continuing healthcare reviews')

http://https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

- on the Mnda website, Information about Ventilation (info about NIV in Section 3 - further to the respiratory nurse's advice about the need for waking carers, there is some info about this issue at the end of page 5).

http://https://www.mndassociation.org/wp-content/uploads/2015/07/08b-ventilation-for-motor-neurone-disease.pdf

As Martin is already receiving CHC, there should be a way of getting this reviewed so that the provision of his care can be increased, if necessary. According to the NHS guidelines, a patient's CHC should be reviewed within the first three months, and at least annually after that.

As Martin needs carers at night-time (so that he can use his NIV safely etc), hopefully there will be a strong enough case for his CHC to be increased, so that it covers the provision of carers every night.

I don't know who you need to contact about getting Martin's CHC reviewed, but perhaps his MND nurse or GP would know (or possibly phone the MND Connect helpline for advice).

Good luck with getting the night cover that he needs.

Best wishes to you and Martin,
Kayleigh

[eurocamper]

Hi Girls,
Thank you for your thoughts and advice, this is very helpful. We are seeing the district nurse tomorrow and will ask er about night time carers. Lots of Love, Linda.

[Kayleigh]

Hi Linda,

Hopefully getting CHC increased to include night cover won't be very complicated or time consuming to do. It's good to hear that you are seeing the district nurse tomorrow, as hopefully she/he will be able to help with getting night carers provided for Martin, as soon as possible.

Love and best wishes,
Kayleigh x

[shrew]

hope youve managed to get overnight help