CHC

[Yvonneandgeorge]

Hi all we have the social worker coming in the morning none of the children can be here to support me, any one have any advice for me. District nurse says George qualifies for it, should I show him letters from the hospital? Feeling nervous I just hope all goes well , so frustrating having to fight for everything. Yvonne

[NannaB]

I'll be thinking/praying for you tomorrow. When they ask you a question, tell them how it is on the worst day. It may seem harsh but it's no good saying he is ok sometimes. If they ask how many times he falls over, tell them it's the wrong question. It should be how many times would he fall over if I wasn't here to save him.

There is a question about being a danger to himself or others but relates to temperament/ aggressive (?) . I told them C was never violent or aggressive but his illness makes him stubborn and he does things that are a danger to himself and others and gave examples.

I do hope you are successful. Sending you a hug of confidence.

X

[Yvonneandgeorge in reply to NannaB]

Thank you NannaB it means at lot to me your kind words, I am praying that it goes well, our son works near us, but people on holiday, he is the only one in the office, but he might be able to leave for a while.

Nurse coming back on bank holiday Monday, our son is going to be there then, have sorted out recent letter from the hospital, and also I am goi g to give him booklet and card from the PSP society .

Can't sleep think I an going to make myself a hot drink, and hopefully will be able to sleep, I can't take a table as I need to be up early he is coming at 9.30. Hope Colin had a lovely birthday, and you both had a lovely time. Sending you a big hug. Yvonne xxxxx

[Joeglad]

NannaB is absolutely right - always talk of the worst case scenario. Just because a need is being dealt with (eg falling, risk to self, feeding. Etc) it is still a need. You could download the forms from the internet - that helps to actually see the criteria. They are very specific. Impress the impulsive nature of the disease - the sudden jumping up which they can't help and the problems with communication - it is common to have a yes/no confusion which means their care needs have to be predicted by you. Etc

Is your husband going to be there? It is sometimes hard to discuss the difficulties and problems with them there as it seems so grim.

Do not gloss over any difficulties - make sure they know exactly how it is and don't let them think it's all fine! Good luck and do let us know how you get on.

[Katiebow]

Best of luck with the meeting, yet again having to prove yourselves to get help, such a stressful situation. I do hope that you get what you rightly deserve. Fingers and everything crossed, stay strong and am sure the advise on this forum will give you a fighting chance. Xx

[cabbagecottage]

is it a meeting with the social worker only today .

we are waiting the results of Johns assessment .. it's gone to a panel now to decide .

it is daunting , partly because you are so tired and stressed about everything , Have a you made a few notes to prompt yourself . . If they haven't arrived so it now ,

like Nanna and the others have said , must tell them what the difference would be if you were not there . It feels dreadful have to say some of the problems but it must be done.

The nurses have told me that we should also be having CHC I am not holding my breath though with all the cut back .

tell them you cannot plan anything because of the unpredictability of the condition .

good luck with the visit this morning. Will e thinking of you . Xx go for it.

[Amilazy]

I agree with everyone you must describe the worst days and lay it on with a trowel. I know it is difficult for the patient but if he is there he can illustrate the poor communication, bad mobility, choking, etc. I am concerned that the nurse and social worker are not together as usually medical issues need to be explained to the social worker. If you have any PSPA literature have it to hand give it to the social worker.

Best wishes good luck Tim

[Yvonneandgeorge]

thank you Tim the nurse said it would be to much for George if they were both her together, let's see how we get on, had such a bad night last night hardly any sleep, George fell over, wet bed washing again and the weather is horrible, so fed up Tim, and he is late, good start, then he will be in a hurry to go, you can't win . Yvonne xxxxxxx

[Yvonneandgeorge in reply to Yvonneandgeorge]

Cabbagecottage just the social worker today, you can see from my reply to Tim, what the nurse said, so fed up, he is late, don't know how we got out of bed this morning, just want to roll up and sleep forever, like is rubbish.

Tried to get someone here, lucky my son did not leave work because he has not turned up the social worker, he is late, but what is new. Yvonne.

I have also made notes, he has just phoned he is lost xxxx

[Heady]

Hi Yvonne, thinking of you. No doubt the meeting is proceeding as I type, so know I was sending lots of positive thoughts your way.

Please make notes of the good and the bad, I have to go through this soon. Just about to be referred. Hope you get this CHC the first time of trying. If not, at least you will know what to expect the next time and be even more prepared!

Lots of love

Heady

[Doglinton]

Bit late in but thinking of you.

I can't offer any real help as we are not at this stage yet but I know when we get the letter after a visit to consultant that I have not shown how bad it is. First it is my nature to cope [ sound familiar ? ] and second it is hard in front of Chris.

Perhaps we should ask for a moment alone ?

Good luck Jean x

[Yvonneandgeorge in reply to Doglinton]

Yes it went well in Hertfordshire they don't do a joint visit until the social worker does he's report, which he said he could see its urgent, then when he does his report, they meet up with George and myself and then there is another assessment, then it goes to the panels, so I will push for it before we go away, social worker saying it will be better to do it before, keeping my fingers crossed, he also said that the hospital letters will help, he has taken them and take copies and send them back to me. Also gave him a paper works and a card from the PSP society . Love to you all and thank you for your kind comments. Yvonne xxxxx

[myjual]

I hope all went well and you get all you deserve and need. I an awaiting a visit from social services - more than six weeks now since doctor said he was referring

[Yvonneandgeorge in reply to myjual]

We waited over 9 weeks, we were waiting for a social worker, you need to keep ringing them, I rang them quite a few times. Yvonne xxxxx

[myjual]

I believe my neurologist is getting on tothem