More advice needed please.

[Robbo1]

I have been told that B. is due for CHC assessment again. They are just waiting for someone to be allocated to do it. We were turned down last time. All advice would be much appreciated. X

[Satt2015]

Hi Robbo

I'll write this as a general guide for all

Write down everything the patient CAN do for themselves

I.e. Can they walk unaided

Can they cook and feed themselves

Can they brush they own teeth

Can they bathe/shower alone

Can they dress themselves

Can they go to the toilet alone

How is their eyesight

How is swallow

Are they incontient

Then

Write down all medications

Then

Write everything down as in worst case scenario

Write down about the patients cognitive position

Are they able to talk?

Are they able to make decisions

How much care is needed

Why can't you cope alone? I.e. Write down YOUR age, health, mental state, stress etc

Write down if you have hospice support, neuro team etc

Pspa have lots of info on chc assessments as do care to be different

I'm sure young Kevin will give you some fabulous advice shortly

Finally don't let the f*****s get you down!! Battle like you've never battled before!!

X

[Robbo1 in reply to Satt2015]

Thank you so much! ( B can't do any of those things without my help. ) I am so grateful for any advice from those who have experienced the assessment and got CHC. I am going to write the list down now. I will try not to let them get me down, but PSP makes me feel tired and vulnerable. I will keep your advice in mind when they come! X

[Satt2015 in reply to Robbo1]

Your very welcome! I didn't think B could do any of those things! I know it's knackering and draining but trust me once chc is agreed, life becomes a 'little ' easier. Why on earth you haven't got chc already makes me very angry x

[Robbo1 in reply to Satt2015]

Thank you Satt 2015, I am hoping that this time, we get it! X

[Satt2015 in reply to Robbo1]

Me too!!

Absolutely no reason you shouldn't x

[Kevin_1]

Hi Robbo

Satt's list is very good. I would add behavioural difficulties to it - that is a score area in itself.

You really can't beat getting a copy of their score sheet and completing it yourself.

Even if you don't do a score there are descriptive boxes for each part that they score and it means you have organised all of your information into the area for that score.

As Satt says - don't hold back... write down the worst case.

You can download it here:

Click on the Decision Support Tool and go to pages 19-49

gov.uk/government/publicati...

If you aren't geared up for printing come back to me and I will post the headings. If you want, of course.

Oh, and you might want to check that there is a Social Services person in the assessing 'team' - There should be by law, but sometimes they do a separate assessment. It is recommended that you tell that person to assess whether the care is, "Withing Social Services legal limit, or not." They are required to do this. If the care is beyond the Social Services legal limit then that sort of puts the pressure on the CCG (NHS) because the Soc. Serv. have made a legal statement that they cannot provide the care by law.

Wishing you the best with this.

Kevin

[Robbo1]

Thank you Kevin. Good, reliable advice as usual. Hope things are a little easier for you at present. X

[Yvonneandgeorge]

Here's hoping that everything goes ok, just remember to worse days, everyday is a hard day, fight your corner, you are entitled to it done let them put you down, we are suffering and they are not interested, we are saving the government millions by caring for our loved ones. Good luck 😉 Yvonne xxxx

[NannaB]

As Kevin said, get a copy of the forms the professionals use. I did and made sure I was well prepared.

I've said this in past posts. When they ask how many times your loved one falls, or when they last fell, tell them they asked the wrong question, it should be, how many times have you prevented falls.

Emphasise the danger involved by your darling having no concept of danger which puts both of you at risk, quoting as many examples as you can remember (write then down before the meeting to remind yourself).

When you get a copy of the form which will be submitted to the panel, read it and add anything they have missed out or that happens after the meeting.

C was granted CHC the first time, very quickly and I think it was because I was well prepared. Part of my job was doing the paperwork when parents and teachers thought children should get a statement of special educational needs. It was the same process, collecting information from the family and professionals which was then submitted to an anonymous panel who would never meet any of those involved. I had to make sure every relevant detail was on the form. I only ever had one rejected, my first, which I resubmitted and then it was awarded.

Do your homework and good luck.

X

[Robbo1 in reply to NannaB]

Thank you, NannaB. Like you, I was a SENCO and always got Statements for children when I applied for them. The reason we were turned down last time, was because B was not fully in need of CHC. Also, We didn't get past 1st base, as our Neurology worker filled in the form after talking us through it and it didn't get approved for assessment for CHC. This time, we are being assessed, so I am grateful for all tips. I will mention what you said about falling. What I hate is that B is present and I don't want to depress him by listing all his problems. He knows them well enough! It is good to hear from you and to get advice from someone who has experience of all the problems that go with PSP, as well as the emotional turmoil that it causes. Sometimes I wake up in abject fear and have to force it down and carry on. People like you are a great help to people like me. Many thanks. X