Level of care?

[Music man's wife]

Hubby is into his third year now with MND and is doing really well, emotionally that is.
His care is paid for by CHC and I've put the cat among the pigeons by asking them to pay for 24 hour care at home. Possibly too big an ask!
I don't know if that request is unreasonable but he needs a lot of help day and night. I need to return to work and just can't leave him on his own.
Has anyone any experience they can share?

[Piglet]

Hi
At least you have asked CHC. They may offer for someone to be with him whilst you go to work but not heard of anyone actually having 24 hour care at home. I hope you get support with this. Good luck and let us know.

[Jo jo]

This is a fear I also carry. I have to return to work soon and worry about who is going to care for him while I’m away. Hope all works out and please keep us posted of the outcome.

[Tess]

This is a possibility for me also, with returning to work post Covid soon. I've had a few thoughts about what to do in terms of flexible hours, or even part time. But i've not really looked into carers allowance, if that is a thing (should probably look up more information today actually). I almost don't want to leave his side as he's so comfortable with me and the thought of someone else doing the caring makes me very nervous. Covid has been a strange blessing in disguise.

[Polly]

I’ve not been on the forum for some time, but browsing this evening, I was interested to hear that music man has care paid via CHC. My husband’s condition has progressed quite rapidly. After being diagnosed with bulbar onset MND 16 months ago he has totally lost his speech, can only stand with a hoist, is unable to use his right hand, and has minimal use of his other hand. Nutrition is almost entirely via a PEG and most medication is given in this way too. He is almost totally dependent on me for personal care. During lockdown I was unwilling to look for help but things are getting more difficult. We haven’t yet had a carers assessment as when the situation eased, I didn’t find social services very helpful. And I have asked our OT twice about CHC, but felt I was being fobbed off. I know I can’t manage indefinitely, as I have issues with my back, ankle and shoulder, but I don’t know the best way to go. Any input from all you knowledgable people would be much appreciated!

[Polly]

I should add that the reason I would like to go via the CHC route if possible is to get the best care for my husband as his condition progresses.

[Ellie]

Polly, you can always start the CHC application process and remember to answer the questions on a worst day scenario - i.e. what it's like on a day when your husband is exhausted and in pain. Often people are rejected and appeal. And it seems that CHC is not awarded consistently, it might come down to postcode and personalities 😫

Info sheet on CHC: https://www.mndassociation.org/app/u...uksWXp-nryVrDs

It's often good to have help with the application from the hospice or palliative team.

Good luck.

Love Ellie.

[Banned]

The reality is LOVE provides the best care. Some carers have lots of it, while for others the job is just a means to an end. It is essential for the person with MND to have full control of care for success in my opinion.

[Music man's wife]

So the process has been slow. The district nurse called and we agreed the level of care we would be happy with. Or to be more precise I would be happy with. Hubby really prefers to get all care from me. I would love to be able to do that but physically and emotionally I know I can't.
He will get 6 visits per day with 24 hour care 5 days a month.
The district nurses have found a care agency and we will wait and see.

Regarding the CHC process, all was speeded up as hubby had a DS 1500. Without wishing to appear insensitive this is the form that states you may only have 6 months to live. I really apologise if that is upsetting for anyone.
On a lighter note his hospital OT calls this the golden ticket as it does make a lot of processes simpler.
His CHC application was processed in days.
With CHC it's a bit of a dark art with no one health professional really understanding it. The district nurses started off the process with guidance from our local MND coordinator.
There appears to be 6/7 categories with the assessment, you must fall into at least 2 of these. Hubby qualified as he cannot walk and requires ventilation.

I wish everyone well xx

[Ellie]

Oh that's good news MMW.

There are bound to be teething problems initially as both MM & his new carers get to know each other and figure out the best way to do things and it's often best to have a written task list for when you meet the care agency.

Best of luck to you both.

Love Ellie.

[Music man's wife]

Just thought I'd give an update.
Hubbies new care package has started, he now gets 4 visits per day and 5 waking nights. That means I can get a bit of respite. We also have an additional budget so his original carer visits twice a day as well.
This took some time, partially our fault as our phone broke and we missed a CHC panel where funding is agreed.
The new care agency are good and so far all is well and hubby is happy with them.

[Ellie]

Great to hear a Good News Story - thanks.

[Mary C]

Hi All.The Continuing Health Care funding process is not easy to negotiate.You have to demonstrate that the person with MND has predominantly a primary health care need that is complex and unpredictable.Suggest people look up criteria on internet and you can get copies of the assessment process forms.It starts with a checklist and this can lead to more in depth assessment.I would feel the palliative care team are best placed to make an application if they know the applicant well.I used to work in a hospital as a social worker so was often involved in this process.The applicant /carer should be fully involved in the assessment process.Also if awarded it is subject to reviews so may not be awarded long term.Best to get familiar with the process and forms.