Georgepa' s funding appeal

[Katet68]

This is what my Dad does best - he fights for fairness, beyond proud when I know his heart is breaking. Keep fighting Dad, with you every step of the way!

[abirke]

You have a fine dad, and mom...and they have a fine daughter....keep fighting the good fight!

AVB

[Yvonneandgeorge in reply to abirke]

Kate it is not enough having this horrible illness, then you have to fight to help you care for loved ones. Kate you have a wonderful caring dad, and you must be a lovely daughter, praying for you all Yvonne xxxxxxx

[jillannf6 in reply to abirke]

I agree svb

Lol jill

[Doglinton]

I support him 100% but have no experience to contribute. I am taking notes for the future for us.

I agree its the unfairness of the system that infuriates me !!

Keep fighting, although he doesn't really have the time, does he ?

Love, Jean x

[Heady]

Don't worry Kate, we are with him, every step of the way, any bit of knowledge that will help, is whizzing its way to him! And anyone else that needs it. One day, one day, as soon as you put PSP on the form, it will be a signed deal!!!

Lots of love

Heady

[easterncedar]

Thanks, Katie, for encouraging your father to join us, as I believe he mentioned back then. He has given us all so much. We do care about him and your mother and you. Hang on. Love and peace, easterncedar

[NannaB]

Oh how I wish I could help, but I can't other than keeping your dear mum and dad in my thoughts and prayers. Stay strong, all of you.

X💐

[cabbagecottage in reply to NannaB]

Bev , still not heared anything about Johns CHC , other than a phone call from a company I have never heared from tell me that social services have asked them to give us four hours respite sits .

The CHC lady did say 5 months ago when they did the assessment we might get half and half whatever that might be .

There appears to be so many people involved it really does your head in knowing which one to go to for advice .

th head district nurse was the person who gathered the information after the social worker called . Since then we have been having assessments for swallow speech , dietician , and mental health nurse . it is going on and on . As you will know during all that Time John is progressing . it's a madhouse isn't it .

o will ring social services on Monday and I think the district nurse who is involved .

I know if John was in hospital or nursing home it wouldn't take them long to discover how band complex he really is . he is very different each day . cannot plan at all .

[Heady in reply to cabbagecottage]

Hi, when you phone these people, talk about Johns decline, since the assessments. They are meant to take into account the progression of the illness!!!!

Lots of love

Heady

[NannaB in reply to cabbagecottage]

Colin has never seen a mental health nurse. I read on the Internet somewhere that some councils try to get out of paying CHC by saying it's a mental health need. It also said you either get CHC or not. They don't give a proportion. I'll try and find the site again. If they are paying for the sits it sounds hopeful but ring and find out what's happening. It's taking far too long.

Hope things work out OK and soon.

X

[cabbagecottage in reply to NannaB]

I was surprised when they sent the mental health consultant , she was very nice and seems desperate for him to be able to get more help with the Parkinsons because mentally his is really good , except for the slowness and cognivity . Mental health in Parkinsons is different Is it .

It's why she is trying the Memantine . I do believe it is the Parkinsons making the thought process so bad . What do I know though. It's so complex isn't it .

I know it shouldn't be taking so long , I think it's probably because she is trying so hard . jOhn doesn't go out and is unable to see a Parkinsons consultant and he only gets to see the Parkinsons nurse very occasionally .

She did tell me they sometimes give half and half ,

The Memantine is making him unable to wee though , he has generally been good at controlling that . I do worry about it though he can go from the night before to the following evening ,

I tried today giving the pill at a different time ,

[NannaB in reply to cabbagecottage]

Caretobedifferent.co.uk What are the different stages of NHS Continuing Care assessment and appeal is very interesting.

X

[cabbagecottage in reply to NannaB]

Will look at that now x

[cabbagecottage in reply to NannaB]

it's mind boggling isn't it especially when you are tired .. I continually care for John and if they we don't Tick enough boxes . they should change the name lol ..

we get the attendance allowance for the social care part don't we .

we are lucky in Wales that we only ever have to pay it now £60 a week . however much saving u might have . I'm a way I would like if we get it to have direct payment but would have to interview and sort everything out myself . I a, able to do it , just to busy caring as well .whatever we might get they will never be hear when I really need them .. for instance . I commode do him 15 mins before they arrived midday and thirty mins after they left , lol

[NannaB in reply to cabbagecottage]

I've never been offered direct payment but it works well for me not having it.

X

[cabbagecottage]

the ones who make the final decisions sit in their ivory towers checking ticked boxes without ever meeting the person concerned . I do hope it all goes well for all of you

Parkinson's affects all the family . a big hug fo a big heart X x

[Katiebow]

Your mum and dad are lucky to have such a caring and supportive daughter. Fingers crossed that justice is done very soon xx