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Cookewitch
17th February 2014, 09:26
I've got the afternoon off for this......need everyone to have everything crossed!

pete
17th February 2014, 10:05
I've got the afternoon off for this......need everyone to have everything crossed!

Good Luck CW ,yes got everything that can be well and truly crossed for you and Dad .

Pete

ccvsd
17th February 2014, 10:05
Good luck! I hope you get adequate support offered.
x

Terry
17th February 2014, 11:23
Remember Cw;

Tell them what things are like on the worse days and not the best ones.

Terry

Brazilnut
17th February 2014, 12:55
Good luck CW as Terry said tell them the worse case scenarios. xxx

Jangobie
17th February 2014, 15:16
Fingers crossed for you cw, I think you are amazing the way you cope and work as well. All carers who have to work as well as cope at home are superstars. Let us know how you get on. Love Diane

ccinjersey
17th February 2014, 17:05
Hi CW

I don't know what a CHC Review is, but it sounds very important. Hope you get everything you want and need from it, keeping everything crossed just over the pond for you.

CCxxoo

Cookewitch
17th February 2014, 17:30
Well the review is just finished, two and a half hours! I now have to wait until the end of the week to find out!!! I think the fact that there was no immediate answer doesn't bode well......

magic
17th February 2014, 19:51
We did not get an answer on the day when Peter had his assessment. I did get the feeling that the assessor wanted to grant it . Heard some days later by phone. Do hope you have the same outcome.

Magic

Wurzel
17th February 2014, 22:50
Everything crossed for you cookwitch
Mandy x

Cookewitch
18th February 2014, 13:11
I sat and told the CHC people yesterday that I didn't think Dad could tip himself up out of the riser chair with the rise function......today I got summoned home by the lifeline to find him in a pool of blood where he'd managed to do just that! He has a cut above his eye and will have a right shine as his glasses broke and cut him. Fortunately he didn't pull out the syringe drive, PEG or catheter.....he's now dozing in his chair whilst we wait for someone to look at his eye that the paramedics have arranged.

I'm stumped now as to what to do. The MNDA said they only really do riser/recliner chairs and not ones with a recline only function, they might after an OT referral. The other option is that the bed is moved into the living room and Dad becomes bed bound which I'd rather not....not yet....

magic
18th February 2014, 13:50
So sorry Cookewitch. We can never be off our guard with this unpredictable disease. Good that he didn't disturb PEG etc but the poor man is going to look a bit battered . Try giving MND. Connect a ring. It is never a positive experience.

Magic

john
18th February 2014, 14:20
When Irene could no longer look after herself and we needed help as I was still working full time we had carers initially just to help her to the loo and back and give her a coffee but ultimately 9 to 5 Monday to Friday. Chc paid for this.

John

Jangobie
18th February 2014, 14:34
CW my heart goes out to you. It is unimaginable how you must feel being at work and getting a call like this. I hope that CHC is granted for Dad. As magic said it is a constant battle to keep things on an even keel.

Just a silly thing but went to collect Ed's medication for the month, half not there as the drs hadn't sent all the prescriptions and the chemist had run out of a couple that he had sent. It just feels that it is another thing to worry about that I really don't need.

Hope that all get sorted for Dad very soon. Love Diane

Cookewitch
12th March 2014, 09:32
Not that it means much now I found out yesterday that Dad did get CHC.....as he died only 2 days after the assessment it probably doesn't matter. Perhaps if they'd done the fast track like they were asked to we would have got more help sooner....maybe he'd still be here.

It amazes me she sat and said 'fast track is only for people very near end stage'. As Dad died less than 48 hours after I would say he should have qualified!

Just makes me so sad....my Dad is still gone. It's been 3 weeks today and the longest 3 weeks of my life.

john
12th March 2014, 10:38
Hi Cookewitch,

I know it will never compensate for the loss of your Dad but if he was awarded chc then you will be able to recover any money paid out for his care that would have been covered by the NHs after his assessment. You can go back to when you first applied for chc. In my case with Irene I was able to recover all care costs from March when we applied to October when they finally agreed her entitlement. I was eventually repaid between 4 and 5 thousand.

John

Jangobie
12th March 2014, 11:02
Hi CW, little compensation now, too little too late. People do not seem to understand the complexity of this awful disease and how rapidly it c change.

I hope that the brighter weather will make you feel a bit stronger, as a carer myself I can only feel a little of what you are going through as we all know what the outcome is.

Take care of yourself. Love Diane

Cookewitch
12th March 2014, 11:41
Yes I found out that they will refund anything paid out since we applied, however, local authority covered that period so they'll get their money back. It looks like there is a 5 day period from when carers started coming to the CHC application date so I may receive a bill for those 5 days....I don't really care a great deal, it doesn't change the facts.

Graham
13th March 2014, 20:10
Dear CW,

I am lost in sadness at what keeps happening time after time. Yes, your loss is a tradgedy that could have been prevented. I am sure that the previous day's incident and the stress of dealing with beurocrats whose mission is always to deny, contributed to your father's death. I for one would convict the system and the responsible individuals guilty of manslaughter if this was put before me in court as a jury member on the basis that ignorance is no defence.

God bless you with strength in these terrible times. Graham xx

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