Trying for chc any advice please - PSP Association

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Trying for chc any advice please

ciilat profile image
7 Replies

My partner was diagnosed with cbd 4years ago after 3years of going back and forth to the doctors.He has no mobility at all and has an alien hand.He also has dementia. We are in the last stages of trying to get chc ,I am not holding out much hope,but would love to hear from someone who has received it.Many thanks Cillax

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ciilat
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7 Replies
Tippyleaf profile image
Tippyleaf

Dear Cilla

Lots of very knowledgable people on this site who can offer valuable guidance.

My hubby awarded CHC recently. The advice I gathered from here was to be prepared read through all

The documents/ checklist carefully and plan for the assessment make sure you have a wide range of examples, copies of hosp letters, keep a diary which outlines the falls, challenges etc, always use worst rather than best case scenarios.

Good luck - it is an exhausting process I do hope you have a successful outcome - it makes a huge difference

Love Tippy

ciilat profile image
ciilat in reply to Tippyleaf

thank you Tippy for your reply. It was encouraging to hear from somebody whom is receiving chc. I had the assessment yesterday and I have been told that Brian meets the criteria but now it goes to the panel keeping fingers crossed.

love to both .Cilla x

Kaylewis profile image
Kaylewis

Hi so sorry about your partner, I applied twice for mum and failed, then I got in touch with the local hospice who applied for me and it was granted within two weeks of them putting in an application.

This is an old post that might help.

healthunlocked.com/psp/post...

BattlingCHC profile image
BattlingCHC

We're still trying for CHC (from way back in 2015). I can't advise what "works" but I've some experience of how to avoid the pitfalls and that might be useful to you.

Would strongly recommend that you keep on file on your PC (and back up) every email, letter, supporting documentation etc. Also that you take the time to organise such information very carefully. CHC seem to lose key information and to wish to proceed not in accordance with statutory procedural requirements. You need to be able to counter such practices through your own record-keeping.

Patmimi profile image
Patmimi

Hi,

I don’t have any advice for you about chc? as I’m not sure what that is? Your post sounds the most like my husband who has CBD He started with mild cognitive impairment diagnosis and finally in the last 6 months his neurologist said he has CBD

Jack has difficulty with balance so he is now using a cane. His speech is fine although very quiet. He has alien limb in left hand and he has left side neglect. With the neglect he doesn’t “see” anything on his left side. Makes walking through doors, finding his way around the house, eating, sitting basically everything difficult.

He doesn’t know my face or other family. It’s not that he’s forgotten us but that he can’t recognize our features. If I speak to him he’ll know or he tries to memorize what color I have on .

He does have short term memory issues as well. I so wish I had someone to help me understand all this! Even his neurologist just gave me a one page print out and sent us on our way .

Anyway I wish you luck on your chc journey!

in reply to Patmimi

You are on the right site to start to find out what you might expect. You should do this post as a separate one for yourself. More people will see it.

Everyone with these neurological diseases has a different set of symptoms. Some overlap with other diseases. Doctors might be able to answer a question if you know what the question would be. Most doctors have no idea what to tell anyone about these diseases.

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