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introduction and tips ref claiming etc

(13 Posts)
aninsecurewomanwhoisabitweak Thu 09-Jul-15 12:47:02

My dd is 20 and some of you may have read a post I've had in general health - she's got a rare degenerative form of encephalitis
It's affected the left side of her brain so her cognitive function is affected
Understanding is more or less there
But you can't talk fast or in a complex way.her speech is worse and she can't read and write
She's in rehab unit but it's not helping and she's upset being there. Self harming.
We want to get her home but need to sort out the assessment of needs from ss and look at guardianship and power of attorney while she has capacity.
Just keen on getting some support and encouragement and somewhere to ask questions?

aninsecurewomanwhoisabitweak Thu 09-Jul-15 22:02:55

(anyone think if I moved this to aibu or chat or somewhere else I'd get more luck?)

GrumpyOldBiddy2 Thu 09-Jul-15 22:23:03

I don't have any advice I'm afraid as I don't know much about it. Are SS on the same page as you?

Have some flowers

aninsecurewomanwhoisabitweak Thu 09-Jul-15 22:26:08

Dunno yet
Assessment of needs meeting in 2 weeks booked for on ward
however, after seeing her today she's so so low.
Requested psych asap to ring us and see her
She's got weekend leave so that's good

aninsecurewomanwhoisabitweak Thu 09-Jul-15 22:27:45

Just need her home

GrumpyOldBiddy2 Thu 09-Jul-15 22:29:21

Who does she feel is on her side in the unit? Does she get on with any of the staff in particular?

I think I would try to contact them and talk to them about your concerns and also go to the meeting with your own report of her needs. Would suggest an OT assessment regarding a return home would be good.

aninsecurewomanwhoisabitweak Thu 09-Jul-15 22:36:12

She likes the psychologist
OT is awful as is physio
(written or complex verbal instructions for simple task then - oh she can't do it (session over)) hmm she's been there for a month and you don't realise this.

Icimoi Thu 09-Jul-15 23:19:37

Have you contacted social services? I suspect you have to make a formal request for an assessment leading to a care plan.

aninsecurewomanwhoisabitweak Thu 09-Jul-15 23:22:24

They are coming to hospital for assessment of needs in 2 weeks
Is there a different request we need regards a care plan?

Anomia10 Fri 10-Jul-15 11:16:12

No, if its agreed she meets the criteria (and it sounds like she will), then the care and support plan (= Part 3 of the statement) leads on from the assessment of need (= Part 2 of the statement). There should also, as part of it, be a carers' assessment on you, which leads to a support plan for you.

Has she been assessed by a speech and language therapist? If she hasn't, I'd request an assessment asap!

Is she in an NHS ward/unit? I'd look on their website for their policy on learning difficulties. Under the Equality Act 2010, they have to make reasonable adjustments for disabilities, such as comprehension difficulties. My nearest hospital has an A4 "All About Me" folder for people with learning disabilities/dementia to show professionals, which has sections on comprehension, how to communicate with me, etc! There are also two learning difficulty nurses to accompany a disabled person and carer to appointments; ensure the disabled person is enabled to understand the doctor's message, etc. Appointments are supposed to be the first in the clinic, double the time and in a quiet room.

It would be a reasonable adjustment for the OT/physio to slow down their language, speak clearly, model the desired actions or whatever your daughter needs for her comprehension. Paediatric physios and OTs are usually very good on this, because so many of the children they see, also have speech and language difficulties! Its not enough for them to walk off, session over, because of her disability!

FreshWest Fri 10-Jul-15 12:21:42

You might have some luck with getting advice from the Encephalitis Society, they have people who have experience in all areas of getting help and support and may be able to give you appropriate advice and guidance.
Good luck flowers

aninsecurewomanwhoisabitweak Fri 10-Jul-15 20:59:36

Psychologist said don't think needs meds.,.
Need to get forms filled for poa
Ss assessment should be OK
Sent letter to Dr to request which med we want them to apply for (had choice of 2) off licence so needs to go a board

aninsecurewomanwhoisabitweak Sat 11-Jul-15 17:54:51

Dh just told me rehab coordinator text him from the ward (dd on weekend leave) and said a referal for different more suited rehab come through and consultant wants to meet. Also found out ss meant to be coming to assess for going home ( we didn't tell them)
Worried how this will pan out. I hate conflict. She's not happy at all in hospital though...

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