Review today : Hi We have an urgent review... - PSP Association

PSP Association

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Review today

Suebatt profile image
18 Replies

Hi

We have an urgent review with chc this afternoon

I just got to my worst nightmare (the hospital) and a stupid dr has said that he is going home today

What a bloody joke and he won't accept that he's not going home

There is no care in place these people make my blood boil

Sorry for the venting

Sue x

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Suebatt profile image
Suebatt
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18 Replies
Stevewithpsp profile image
Stevewithpsp

It's very hard when you and you're loved one are treated like sides of beef rather than human beings going through the struggle of your lifetimes. My personal belief is that this happens because the medical profession is ignorant concerning the disease and the effects on everyone involved. They, like us, fear what they don't understand, but are too arrogant to confess their ignorance. Therefore they choose make stupid and uninformed decisions without a second thought as to the effect it has on you.

Sorry you have to pay the price for that ignorance. I wish I could suggest something constructive, but we are little people fighting a monolithic bureaucracy and only get proper care through sheer luck of the draw when it comes to who makes these important decisions.

With best wishes for better days ahead, I remain,

Steve

Suebatt profile image
Suebatt in reply to Stevewithpsp

Thanks Steve

I agree they are ignorant the lot of them

I have more knowledge then them about it and I will continue to voice my opinions till he's home

Sue x

Stevewithpsp profile image
Stevewithpsp in reply to Suebatt

Good for you. It's unfortunate that they don't take us serious, and sometimes you have to take matters into your own hands.

Warmest wishes,

Steve

Kevin_1 profile image
Kevin_1

Hi Sue

Good luck]and, you vent away. You have plenty to vent about!

I do hope it goes well for you both.

It's so damned stressful.

Warmly

Kevin

Suebatt profile image
Suebatt in reply to Kevin_1

Hi Kevin

Chc came and it wasn't fast track cause he's not at end of life. Goes in front of panel next week now

After giving her the paperwork that I'd got and wanting to know what he's been like since November and said that she can see a difference in some things but I don't think it has changed his scoring .

I asked her to present the checklist for chc healthcare professionals pawl to read too as they won't know about it either .

So the long and the short of it he will be there for another week

Sue x

Kevin_1 profile image
Kevin_1 in reply to Suebatt

Thanks for coming back.

(For the record Fast Track is not just for end of life.)

Good luck.

Best

Kevin

Julieandrog profile image
Julieandrog in reply to Suebatt

Hi

We had a similar journey with fast track, it can be done for sudden deterioration also, but there has to be a full assessment after six weeks so we were advised to go for that. You are sensible enough not to commit to anything which is not right for you both. But it is sooooo frustrating.

Julie x

Suebatt profile image
Suebatt in reply to Julieandrog

Hi Julie

Thanks for that and yes so frustrating as it really does my crust in

What's maddening too is at the moment nobody can pick him up so there he stays . His care package is for four and half hours a day and still nobody

So again my chimney lid has come off to let the steam out

Sue x

Bargiepat profile image
Bargiepat

I have not yet come face to face with the bureaucracy that you seem to be facing........ I suspect that there is a danger that if you fight it they may become more difficult to deal with.

To stop them sending him home you could just go out and leave the house locked but that might go against your case.

As others have said psp has so much shit attached to it and anymore just makes it worse.

Good luck,

Patrick.

Suebatt profile image
Suebatt in reply to Bargiepat

Thank you Patrick

It is a long haul but archie isn't going from there till he has care

Sue x

Satt2015 profile image
Satt2015

Sue

I'd simply refuse and say that you won't be able to cope (end of) tell the 'stupid dr' no one will be at home as your now away for 2 weeks! See what they make of that!! X

Suebatt profile image
Suebatt in reply to Satt2015

Hi

It was a new consultant who knows naff all at what's going on so again unfortunately for them he's there a bit longer

Sue x

doglington profile image
doglington in reply to Suebatt

It doesn't make sense for anyone, does it ? Its wasting money and causing stress.

Suebatt profile image
Suebatt in reply to doglington

That's so true but they must like wasting money instead of looking at it for what it is psp

Sue x

doglington profile image
doglington in reply to Suebatt

It just makes me so angry. And I've plenty of that looking for a home !!!

Suebatt profile image
Suebatt in reply to doglington

I agree I've got a spare chimney for the top of head to let the steam out.just lately I have the lid open often

I haven't got that problem yet looking for a home it's just homecare but hopefully that is sorted now

Sue x

doglington profile image
doglington in reply to Suebatt

I meant my anger looking for a home. I still care for Chris at home.

Jean x

Suebatt profile image
Suebatt in reply to doglington

Sorry I thought you meant a care home

Sue x

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