CHC - Cont.....

[Heady]

Hi, things can move fast! Got a phone call this morning from the assessment team." Can I come and see you? how about now?"!!!!!!!!!!!!!

So this very nice lady (well time will tell!) came to see us an hour later. Took about 3 hours, but I have had the assessment! Some of the questions? They just don't fit PSP, do they? Where does, no he has no short term memory problems, but can't remember how to get out of a chair!!!! Fit into their wonderful forms?

Still, she did say, that she could see life was hard for me(some joke!) and was not happy about me leaving S on his own at any time. Whether that means she is going to recommend us or not. I know it's a points system, but don't know if we passed that. I think we did. Did get a priority, but not sure if they will accept that!

Oh well time will tell, just got to wait for the panel to meet! Trying to think of this, as a driving test, you need one, before you know how to pass. (Or in my case three!!!). Certainly not going to build my hopes up. But feeling very fed up with the hoops I have to jump and the feeling of putting the begging bowl out, just to get help for S. If someone could come and sit with me and discuss S's needs and recommend what help would be of benefit to us and where to go to get it. I might not need CHC yet, but as nobody will talk to me until I get this funding, I no choice!!!

Life sucks. Still it is Friday, I'd like to say Wine night, but been naughty all week. Hey ho, PSP would have driven Mother Teresa to drink!

Lots of love

Heady

[Doglinton]

Whoopee ! Joining you [ 3rd G /T tonight.] It sounds promising. Crossing fingers and anything else I can think of.

Keep us posted. They can move quickly if they recognise the situation.

love and hope, Jean x

[Heady in reply to Doglinton]

Think they have only moved fast because it has suited the individuals involved. Nothing to do with me and S!

My wine is going down well, hope your G & T is?!!!!!

Lots of love

Heady

[Doglinton in reply to Heady]

Cynical ? You ? And me !!!

Bottoms up !!

Love, Jean x

[cabbagecottage]

That's good it's made a start . Was the woman the social worker . They sent us a social worker and then she arranged for the District nurse sister to visit , she was brilliant had an uncle who Had had Parkinson's , Ashe knew exactly how it was .

She then arranged the Parkinsons and the lady fro CHC and the social worker to all visit us together it's when the box ticking happened .

You can hold the meeting at home or meet them at their office or Surgery . we helped it at home .. have you anyone who can be there with you . have you read up on it . .

[Yvonneandgeorge in reply to cabbagecottage]

We have our 3rd meeting next week xxxxx

[Heady in reply to Yvonneandgeorge]

Why another meeting? I was told this meeting was the actually assessment and our application was going in front of the panel in the few weeks. Have I got to expect another assessment? Hope not!

Lots of love

Heady

[Joeglad in reply to Heady]

If you were told it was going to the panel then you will not need another assessment. It sounds hopeful for you getting it.

Please take all the help you can NOW! Don't wait until you are on your last legs. If you get CHC you will have a review in 12 months time. Deep joy! Fingers crossed.

[cabbagecottage in reply to Yvonneandgeorge]

Check out Continuing health care in England ! explains a lot .

or Wales if you live in Wales I couldn't remember

[cabbagecottage in reply to Yvonneandgeorge]

maybe they I'll fast track it for you . What help do u have already ! you got to crawl on your hands and knees to get anywhere haven't you and we don't have any spare nerdy or time really . got enough in our plates

[Amilazy]

Fingers crossed, glass of red raised to wish you and S success in your application.

Best wishes Tim

[Heady in reply to Amilazy]

Cheers!!!

Lots of love

Heady

[Yvonneandgeorge]

Heady we have had 3 so far and we have a meeting with the district nurse, social worker and myself and George on Wednesday, then they send it off to the panel. We I think every borough does things differently, here's good luck to you heady and S, and good luck to all that are going through this. Yvonne xxxxxx

[NannaB]

Only had one glass tonight cos it's Friday ( that doesn't mean I have more other nights) but not telling you how big the glass was. Before Cs huge pile of paper went to Panel, we were sent a copy and I was able to make additions which I was told the panel would see. They hadn't scored him very high on the section to do with behaviour/aggression as he has never been aggressive. It was leading to safety of himself and others. I said he has never been agressive but his stubbornness, a symptom of PSP caused him to have accidents, a danger to him and me. I then listed many of the accidents he had doing things I had told him not to and the consequences, injuries and breakages. His scores went from the lowest to the highest.

I hope you get it, all those with PSP should.

X

[Heady in reply to NannaB]

Behaviour is the one that we are concerned about! We assessed high on a good day, priority on a bad day, with most days severe, due falling, trying to get up at inappropriate times. S is not aggressive, but very apathic, so will not do anything and occasionally gets very stubborn. This is a definite danger to both of us! Whether they believe me or not is another matter!

One glass, NannaB, not sure if I would be able to lift the size I need!!!!

Enjoy your weekend

Lots of love

Heady

[toyota11]

Hi Heady, just heard we got it, direct payments for 4 hours every day and 4 weeks respite. Comforting. Peter.

[Heady in reply to toyota11]

Well done! I hope it makes a difference to you.

Lots of love

Heady

[Kathie48]

Hello! I have not posted before but I am the main carer for my lovely husband who(probably) has CBD. He is in a poor condition and I have applied for CHC partly because I have been diagnosed with Parkinson's disease for 9 years and sometimes I find it hard to cope. But it bugs me that my condition is not taken into account and I am treated as if I was 100% able bodied. Just to add to the fun I am only 4 foot 10 so lifting and lumping Bill can be difficult. He is in hospital at present and I am refusing to take him out until they have at least tried to get CHC for us. Am I being unreasonable?

Just wanted to share that

[Heady in reply to Kathie48]

OMG!!! That's awful. I thought one part, states about causing danger to others. Surely your husband is doing that all the time!

You are right about letting them keep in him hospital. I think you should apply for CHC for yourself as well. You must need caring for, for some of your needs!

Get Social services involved, get everyone you can think of involved!

Glad you have found this site and have started to post. Like to say welcome, although this is the best site on the Internet, it's the worst group to have to join! We are all carers or sufferers on here, so will know what you are going through. Please feel free to rant and rave as much as you like. We are all here to help each other, through these hard times, we find ourselves in.

Hope you manage to get a good package of care for both you and your husband.

Lots of love

Heady

[NannaB in reply to Kathie48]

Hi Kathy, read Heady's post and put ditto from Nanna B. Not being lazy but can't add much more other than to say please let us know how you get on.

X