Panic stricken - notification of initial CHC meeting received.

[Saffie]

Thank you Eternity, Sylvia and Geum.
You really have no idea how heartwarming it is for me to log on here and see such lovely supporting posts. Quite honestly, I have had a really rotten week both in my voluntary work and it seems like everywhere else too, so it was extra special to receive these this morning. Thank you.X

Geum, I have read quickly through your PMs - for which I am extremely grateful, but will read them thoroughly later. A lot of what you mention is applicable to Dave too but whether these are the important factors in obtaining the funding or not, I will have to look at more carefully.

You are right about the badly done checklist as this is what happened with the nurse last time. A senior nurse assessor from the CHC is the person coming to do it on the 21st so I am assuming that she wil at least know what she is doing?! It's also why I think I will do a preliminary one myself as the manager suggested. At least that way, I'll be prepared. I looked at it quickly last night and did think that Dave scored quite highly but am prepared to be corrected by those there on the day! (Note I said prepared, not aggreeable!)
PM on its way but thank you so much.

Thank you all. X

 

[Saffie]

Thank you Mick. It is good to know about the fact that one can insist on a full Assessment as I wasn't aware of that last time.
The nurse who filled the checklist last time didn't really understand what it was all about and said that she often got the forms returned. This didn't exactly fill me with confidence but as I've said, I was dealing with so much legal stuff and form -filling what with applying for deputyship and appointing a Trustee for Dave so we could sell the chalet, changing our house to Tenants-in-commo, all at the same time, never mind the emptional side of things, i didn't have my full attention on it. Now I can - I hope.
Thank you for your encouragement.

 

[BeckyJan]

Hi Saffie,
Please check that the nurses have assessed Dave's skin viability. This link showing how the Waterlow score works may help. To produce this at the assessment may help the scoring on skin viability.
http://www.judy-waterlow.co.uk/the-waterlow-score-card.htm

 

[Izzy]

Good morning Saffie. I'm sorry, i somehow missed this thread yesterday.

As you know I have no experience of this Saffie so I can't help. I'll just add my own bucketful of respect and support to Gwen's. I'll be thinking of you and wishing you strength throughout the process.

(Please don't ever stop posting. I need you. (She said selfishly!)

 

[Saffie]

Thank you Izzy. I need you too - and the lovely Bill!
Who else in the world is there to call me a 'lovely lassie"

 

[Saffie]

Thank you Jan, I've printed the both sides of the chart off. It looks really helpful. It actually mentions Preipheral Artery disease too which Dave has suffered from for over 20 years. Very useful.

I can see I am going to have to cancel my world cruise this year yet again! Far too much paperwork to do!
Guess I'll just have to settle for Launde Abbey again!
Wonderful! I'll be in need of retreating after all this.

 

[BeckyJan]

I am optimistic for you Saffie - if you get CHC you should do the world cruise, Launde Abbey and whatever else comes your way. You deserve it and so does Dave (the CHC I mean).

 

[jeany123]

Saffie I appreciate you being here for me and I hope you know that even if i can't help, I will be here for you ,

Jeany x

 

[Shash7677]

I really do hope your hubby gets on ok with his assessment. As for what the lady at the care home said well, I would just ignore her. My dad, although he was at mums NH was not in the room when mum was assessed, that had already been done when he got there. Not sure if its standard procedure or not but then mums NH seem to take a different slant on CHC funding by the sounds of it. I stand by my belief that nobody should have to pay to be looked after, when you've worked your whole life, paid your stamp (as I call it) then why should you have to pay? That's a different argument I know.

As for your posts Saffie I always find them kind and supportive, I've not read a critical post and hey, I've upset people before now and thought right, I'm done, but then I've thought no, people ask for honesty and for our opinions and that's just what they are our own individual opinions. We don't all agree all of the time and wouldn't life be boring if we did. Put it behind you and don't be out off.

Take care
Sharon

 

[Helen33]

Good morning Saffie,

I logged on this morning to see how you were doing and I felt so pleased for you that you are being given all this information and support This is TP at it's best and I will be wishing you well as you do all the hard work involved. I thought BeckyJan's link about tissue viability an excellent angle and I wondered how it might or might not apply to Dave's hands as the fingers press into the skin of the hand?

Love

 

[Saffie]

if you get CHC you should do the world cruise

Fat chance of that, Jan, now I might just manage a day trip to the Isle of White, living where I do!! No, a few days at Launde Abbey will do for me, especially if the company is as wonderul as it was this year.
Thank you all, Jan, Jeany, Sharon and Helen.
How could I have imagined for a second that I could cope without you all. xxx

 

[sistermillicent]

Hi Saffie, we might not always agree about things but I would hate to see you stop posting. it would be a very boring place if everyone had the same views. I think 2 jays is right about contacting the Alz Soc and seeing if you can get some help from them, even better if they can go to the assessment with you.
I would love to see a dedicated department at the A Soc for dealing specifically with helping people get chc.
Mum got it even though I didn't think she would but they said that as i could quote specific incidents to back up every single thing i said and give dates this went a long way to helping.
love x

 

[Saffie]

Thank you Sister Millicant. The post wasn't about a difference of opinion about something but more a a misinterpretation. However, onwards and upwards.

To me, the thought of asking someone to attend the Checklist assessment seems a little over the top and I don't think they would come - it is only the checklist at the moment - but thank you and 2jays for the suggestion. I just wouldn't want to come over as too aggressive and set the assessor's back up before we even get started!
The actual Assessment is a different matter and it might be advisable then, especially if the Checklist isn't deemed sufficient to go forward for a full assessment and I have to insist he has one, as Mick has suggested.
I would ring them then for advice. I already contacted an advisor, last September ,before I went ahead and notified the CHC team that I intended to apply so i would ring probably her. Certainly if I have to go to the Appeal stage, I would ask for assistance as Jan did. I believe that is usual.
Thank you for your advice. I do appreciate it. X

 

[Pollyanna]

Hi Saffie

I'm just catching up, I can't offer any practical advice, but it sounds like you are going to be well prepared for this and I'm sure this will help you to relax a little as the time approaches.

A world cruise would never top a weekend at Launde Abbey

X

 

[LYN T]

Hi Saffie

I hope Dave gets the CHC-from the sound of things it's been a total muck up since day 1.

I'm so, so glad you are going to stay on TP

I would really really miss you if you weren't here.

Love from Lyn T

 

[Saffie]

Thank you Lyn and Pollyanna. Yes, indeed, who want a cruise anytime? You don't miss what you've never had but I have experienced LA so I would miss that!!!
(not to mention the champagne sorbets!)

 

[Saffie]

I once had a thread that compared the life I was living at the time with a game of Snakes and ladders. Well, it seems this CHC business is more of an obstacle race as I can see no sign of a ladder anywhere!

Obstacle number 1: the nurse who is very defensive - presumably because she thinks everything I am going to say will reflect in some way with the nursing care Dave has been receiving, despite my assurances at every chance to say that I think it has been excellent.

Obstacle number 2: GP. I spoke to the home GP yesterday about seeing Dave's medical records and she straight away asked if I had Power of Attourney. I said no but I had Deputyship and this was not given for health and welfare unless there was a family dispute about a major issue - and I was next of kin. (I bluffed as not too sure but everyone else has been happy with me making all the decisions up till now!). She said that it was a case of permission and she would have to ask about it. Strange how, in effect, I can decide whether he lives or is dies but can't have a glimpse of his notes!

She asked why I would want to see them and I said that I felt that I was the only person who knows Dave's complete medical history and quoted the fact that he used to see a kidney consultant for some years prior to his amputation and since. We had our last appointment when Dave was in the community hospital and the consultant had said that, as it wasn't that easy to keep going to the hospital, she would keep an eye on things and he would only have to go if necessary. That meant regular blood tests but was he having these? She said that he has had a a couple and one was carried out this week.
When he was home, I had to inject him every week with a special syringe for his particular form of anaemia but it seems to have been stopped somewhere along the way between the 2 hospitals and the home. The Dr said that she had queried this when he first went into the home and the response was that as long as it was stable, it was fine to stop it. I daresay the fact that it cost £100 an injection caused both the query and the decision! (cynical-moi?) True, his blood was being improved so he could have the hip-replacement which never happened, so maybe it was the right thing! When I said I needed to see them for proof of evidence for what I might claim - as opposed to what the assessor might say - she did say that she would be happy to supply this if I said what I needed.

Obstacle number 3: Hospital. I did wonder if I need to go through the same rigmarole for the hospital, but will the hospital records really provide anything more than those of the GP ? Also, will they be all together - and which hospital as there are 2 involved and the second is in a different local health authority region.

This Community Mental Health hospital will be obstacle numbers 4,5 and 6, all together! I really dread the thought of having any contact with them. They were the ones who applied and made a mess of it before, were so unhelpful about Dave being on delayed discharge and Dave deteriorated so badly under their 'care'.

Sorry, this is getting long now. I think I will contact the AS if it goes to the Full assessment but I'm hoping that I won't need too many records for the initial checklist. Am I right? I've made a note of every piece of advice you have given me - and Geum has too via PM and I really am so very grateful to you all. X

 

[geum123]

Hi Saffie,
Don't worry about the GP's response.

As a deputy you are required to act in the best interests of the person you are deputy for.
A financial deputy would be concerned with seeing if Dave is entitled to be funded by the NHS.


I made my request to all, using Section 35 of the Data Protection Act I think.

http://webarchive.nationalarchives....nfidentialityandcaldicottguardians/DH_4084411


http://www.ico.org.uk/for_organisations/data_protection

If the GP is defensive tough.
You are there to represent and speak up for Dave, and to do that you need sight of ALL information.

Hopefully, if I've got any of that wrong someone will come along and correct it.

The AZ should give you this info Saffie, and probably are more uptodate than me.

 

[Saffie]

Thank you Geum , helpful as usual. I will look at the links now. I have been seeing references about the'legl representative' on the DST and presume that will be me.
I have thought of just writing to the Practice manager for the notes and just saying I am Dave's Deputy. I don't think too many people are aware of just what a Deputy is and think it's a lesser authority than an LPA. Well, suppose it is where health and welfare is concerned but I've copied out a few bits and pieces from the OPG about deputyship too and there is a sentence there about the Deputy being obliged to consult the NOK or family about health and welfare issues, so that might help, seeing as I'm both!

 

[geum123]

Yes the practice manager should be able to deal with it Saffie.

They'll probably want to see a copy of your deputy doo-da's