Update on carers: Hi all Thanks to everyone... - PSP Association

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Update on carers

Spiralsparkle profile image
25 Replies

Hi all

Thanks to everyone who took time to comment on my post earlier in week about our agency giving 5 days notice.

The social worker has worked so hard this week trying to get care in to start Monday. As she put it we have been thrown into an emergency situation. .

Anyway to cut long story well 3 day story short... She has managed to get the agency who Admiral nurse recommended to take Mum on. They are very expensive so she is coming out next week to discuss options with us as we won't be able to have the 4 calls a day with them long term but she wants us to have them for as many calls as possible. She had been very impressed by them.

The manager came out yesterday to quickly meet us and explained first few weeks will be a bit erratic as they normally don't take on care this quick. They rang to let me know manager was running late. That impressed me straight away lol. They also introduce the carers to Mum before they start the shift. Another good touch I feel. She said unfortunately we will have to use more carers than we would like initially as rotas already been done, apparently will be 6. I was like we have more than that in one day currently as no consistency.

Please keep all crossed this works out for the better in the end after what has been a very worrying week.

Added bonus they have cared for people before with PSP. I gave her a leaflet and she said oh it is similar to PSP (Mum has Cbd) we have had clients before with that. Felt much more at ease and probably why Admiral nurse said to try get with them.

Love to all

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Spiralsparkle profile image
Spiralsparkle
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25 Replies
vlh4444 profile image
vlh4444

That all sounds very positive - hope it will work well for you.

If you need four calls a day you must be getting near the stage where you might get CHC. Might be worth getting the wheels in motion now.

Vicki x

Spiralsparkle profile image
Spiralsparkle in reply to vlh4444

We got turned down for it. I have sat on it for ages to appeal & just lost the will and very overwhelmed last few months with everything but this has given me the push to appeal.

A friend who has been fighting for CHC for her own mum, who is more advanced in her illness has been turned down twice here so that put me off aswell as Mum isn't as far along.

vlh4444 profile image
vlh4444 in reply to Spiralsparkle

Oh dear I know what you mean about not having the will to do it. It IS so exhausting having to fight for everything. When you can summon the energy do try again. I expect things have moved along a bit since your mum was last assessed anyway. Don't forget to tell it as it is on the worst day and use all the trigger words like 'unpredictability', 'danger to self and others', 'sudden progression' etc etc!

Good luck for Monday.

V x

Spiralsparkle profile image
Spiralsparkle in reply to vlh4444

Nice words! Thanks will throw those in

Satt2015 profile image
Satt2015

I'm so pleased for you and mum spiral! I'll be thinking of you Monday, do let us know how it goes x

Spiralsparkle profile image
Spiralsparkle in reply to Satt2015

Thanks. Mum has been so distressed and confused. She woke up in night crying about it all and said i don't want to be like this anymore. Breaks my heart x

Satt2015 profile image
Satt2015 in reply to Spiralsparkle

Bless her!! I don't blame her, it's all grossly unfair x

jillannf6 profile image
jillannf6 in reply to Satt2015

I agree satt

;lol jill

xxxxx

doglington profile image
doglington in reply to Spiralsparkle

Big hug to you all. Love, Jean x

doglington profile image
doglington

Well done for fighting. I know you are exhausted but you have achieved something. Hope it works out and you can gird your loins so as to speak, for the Appeal.

We are all with you !!

Lots of love, Jean x

Spiralsparkle profile image
Spiralsparkle in reply to doglington

Thanks Jean. Much appreciated. Liking all the fighting talk. X

Yvonneandgeorge profile image
Yvonneandgeorge

So happy your social worker managed to get you the care you need so badly, keeping everything crossed for Monday, hope all goes well, sending you a big hug, get on with the appeal for CHC xxxxxx

Spiralsparkle profile image
Spiralsparkle in reply to Yvonneandgeorge

Will do. Everyone here is making me get the spirit back again to fight x

Debbieann profile image
Debbieann

Hope it works out for you xxx

Spiralsparkle profile image
Spiralsparkle in reply to Debbieann

Thank you x

abirke profile image
abirke

American Hugs to you...we don't get that good of care with our democrat president....can't imagine we will ever get near what you have with this new man "in charge".....I'm pretty sure he believes that if you can't afford medical care, you don't deserve it....so Good luck to you and your mum...

(HUGS)

AVB

Spiralsparkle profile image
Spiralsparkle in reply to abirke

Thank you

Patienan profile image
Patienan

So pleased that you may have found a caring agency: please also let me know how you get on with the CHC appeal, I may have to try to claim it if ..... (no, we won't go any further atm)

Best wishes, Ann

Spiralsparkle profile image
Spiralsparkle in reply to Patienan

I've been reading over the weekend how to appeal. Blown my head off!

Patienan profile image
Patienan in reply to Spiralsparkle

I believe it can be very difficult; I take it that you know about the website caretobedifferent.co.uk ? IT does stress how problematic it can be to overcome the resistance of the NHS/LA to paying out. I found the section on 'The Coughlan Case' useful in that it gives definitions of what is a health need as opposed to a social need and which authority is responsible for the funding. But I do have to admit to having an advantage over some sufferers or carers because I worked in the Private Client department of a law firm until I retired.

I do hope you succeed!

Ann

Spiralsparkle profile image
Spiralsparkle in reply to Patienan

That's the website I've been looking at. In all honesty is was complete gobbley gook, especially that case law. I didn't notice it defined health need as brain had it.

Pentland profile image
Pentland

Really glad you have such a supportive Social Worker. looks like the new agency knows what they're doing. Unfortunately the better ones are more expensive as they usually have a good Care Quality Commision report. Hope it all works out for you. Keep us posted as we are all on your side.

Spiralsparkle profile image
Spiralsparkle in reply to Pentland

The current ones have just got a good CQC report too but believe me they are not.

Noella21 profile image
Noella21

So glad you are getting care again. I also am waiting for my agency to find new carers. I new one started last night for pm care and puts R to bed. We have a new woman starting next week to work 9- 12. It is hard to get all things in place security and reference checks in a few days.Sometimes agency's go through a bad spell with full time staff having to take personal or sick leaves etc. there is light at the end if the tunnel and new people have been hired.

Spiralsparkle profile image
Spiralsparkle in reply to Noella21

Hope the new recruits work out well for you.

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