Panic stricken - notification of initial CHC meeting received.

[SnowLeopard17]

So glad the meeting went well for you today and that you have got over this hurdle. It must be so stressful and aggravated by the timescales between initial checklist and DST assessment.

Wishing you all the best, SnowLeopard, with love x

 

[Loopiloo]

Dear Saffie

I was thinking of you today and tonight, late on my laptop, came straight here. So pleased that today went well and it was not as bad as you feared. That is the first step behind you now --phew!

But I can well imagine how utterly exhausted you are and I do hope you get a decent sleep tonight. Then try to take a bit of a break from it, clear your head, and recharge your batteries.

With my love
Loo xxx

 

[jeany123]

I'm pleased the assessor was nice and that it all seemed to go well,
I hope have you had a nice long sleep and woke up refreshed ,

One thing you were dreading is over with, well done ,

Jeany xx

 

[crazyfish]

Thank you Izzy and Celia.

I get confirmation of the recommendation for the application to go forward for the full assessment with the DST (The Decision Support Tool for the CHC funding, Izzy).
Then, in about 3 months, so the assessor said, this assessment will take place. It's a much more detailed assessment and evidence for every detail seems essential.
So, lots of work to do to try to get this evidence but I feel it's at least worthwhile doing it now whereas before I wasn't sure about the whole thing.

I have to say that this isn't wholly about the funding in my book, nice though that would be if it happens, it's that it's a recognition of the severity of Dave's health needs which I felt were being just dismissed at the previous application. It just didn't seem right!
Incidentally I used both my Vie "Stay Calm" and "Stress Buster" pulse roll-ons this morning - don't think they worked!

Good morning Saffie,
Hope you slept well.
Just a couple of things for you to think over in the next few days.
Now that the checklist is complete and Dave has been recommended to have a full mdt assessment.
You should be allocated a NHS CHC coordinator from your CCG.
Get a name and contact details of yours ASAP.
They should ensure that there is a clear timetable set out for the decision making process and that should be no later than 28after the completion of the checklist not 3months.
Insist they adhere to this timetable if not ask for a full written explanation as to why this cant be done.
Mick

 

[Saffie]

Thank you,Snow Leopard. I do love your name - it reminds me of when Dave was an educational volunteer at Marwell zoo and he loved the snow leopards there. Always a favourite when we visited too.
To be honest the timescale sounds OK for me right now as I think I'll need some time to get over yesterday - or rather the lead up to it - and to gather the necessary notes etc.

Jeany - thank you. I did sleep heavily but awoke, as usual, around 2ish then listened to a book on my ipod before falling back to sleep. I feel anything but refreshed this morning though!

Loo - how kind of you to think of me at this time. when you have so much going on with your own health. I fully intended contacting you yesterday about your appointment on Tuesday but in the end, was too tired to even talk. Now, that's something that doesn't happen often!

Mick - I know you must think me a wuss but to be honest, I don't think I could cope with a mere 28 days! Also, I'm due a cataract operation at the end of September, assuming I do eventually get sent a date! I think I need a bit of time to get my act together and I've waited over 2 years so 2 months more won't make much difference.
My old engine needs time to cool down before revvvvvvvvving up to face the next grand prix! Thank you for your advice and encouragement though.

 

[sue38]

Great news that you and Dave are over the first hurdle Saffie.

I can quite understand that you need a bit of a breather, and there is an argument that if the MDT is unjustifiably delayed beyond the 28 days you should receive recompense. From AGE UK's factsheet:

Refunds for unjustifiable delay

The National Framework states that in most cases the CCG decision on eligibility should take no longer than 28 days from the date it receives either the completed Checklist or a request for a full assessment.

If a CCG decides you are eligible but ‘unjustifiably’ takes longer than 28 days to reach the decision, it should refund to the local authority the costs of services provided from day 29 to the date the decision was reached. If you and the local authority have been contributing towards the cost of your care, the local authority should reimburse you in full.

If you were funding all your care, you should receive an ex-gratia payment from the CCG. This is to restore your finances to the state they would be in had the delay not occurred and to remedy any injustice or hardship you suffered as a result of the delayed decision.

 

[Saffie]

Thank you Sue, that sounds reasonable.
Not as much pressure but compensated if it takes too long, thanks.

 

[Saffie]

post deleted.
change fof mind.

 

[Cornishman]

Great news that you and Dave are over the first hurdle Saffie.

I can quite understand that you need a bit of a breather, and there is an argument that if the MDT is unjustifiably delayed beyond the 28 days you should receive recompense. From AGE UK's factsheet:

I'm reluctant to put a dampener on the discussion here, but my mother's CCG conducted a CHC assessment in August 2012 (note year) and as a result, took away her CHC funding last month.

Of course we complained about this inordinate delay between assessment and decision (over 12 months!) quoting the relevant part of the NHS Guidelines for CHC etc, not least because the assessment couldn't even remotely be described as "current".

We received a "talk to the hand" response from the CCG (claiming the 28 day rule "didn't apply to people already in receipt of a CHC funding", despite nowhere actually saying this - seems they just made that bit up!).

So we're now paying again, having already been self-funding from 2003 to 2009 before my mother was deemed sufficiently "needy" to be eligible for CHC.

Onwards to appeal etc, but please be aware of the sorts of thing can happen, even when you think the NHS have decided in your favour, as we did over almost 5 years ago when CHC was originally granted.

 

[Saffie]

I delerted my post as I asked for advice as to what I should be looking for when I viewed my husband's hospital records today. I then realised that, in all probability, nobody could answer the question.

I have spent a very distressing 5 hours today, reading my husband's general hospital records. I can honestly say that I don't think I found anything which would be of any value for my application for CHC funding. I did have about 10 documents photocopied - both sides, so it will count as 20 when I am invoiced, but these are mainly for my information only. It was a horrible 5 hours and I just wish I had never applied to see the records. I'm only glad that I didn't ask for a copy of everything.

As my husband was transferred to a mental health community hospital from the acute hospital anything which showed up today will have been over taken by the latter hospital and so I will have to access those records too. Do I want to go through today again? I really don't. The GP records since his discharge from this latter hospital to the nursing home are at present awaiting my collection at the surgery at a cost of £15.

I wonder if I really care about the funding or the fairness of it, which is my reason for applying. Not when I have been immersed in what was happening exactly 3 years ago and have learnt that of the distress my husband suffered, far more than I was made aware of, of his aggression which was far worse than was relayed to me and his misery and depression - and far more.

I returned home with a dreadful headache and a heart full of sorrow and regret. It isn't worth it.

 

[Izzy]

Ah Saffie. I'm so sorry you have had such a distressing day. I can imagine how sad it must have been going over these records. I know you have lived through all of Dave's illnesses but reading about it in black and white must have been hard.

Sending big hugs. xx

 

[Soobee]

I am so sorry that you were unaware of things that went on before. I can only offer a hug xx

 

[jeany123]

Saffie I am sorry it was so distressing,

sending hugs, Jeany xx

 

[Saffie]

Thank you Izzy, Soobee and Jeany. I am trying to catch up with all the posts I have missed today but keep needing tissues.

I visited every single day for the 11 weeks that Dave was in that hospital, staying for the full 5 hours visiting time for the most part though I did leave a little earlier towards the end of his time there. So why did nobody tell me things were so very bad? Why did I not see it? Of course I knew he was upset but not to the extent his notes detail.

Also, the description - 6 pages - of when he had to be resuscitated were awful. I was given very little information about that at the time. I think the staff just want to reassure me - but maybe also felt some guilt - though I never gave any suggestion I thought anyone was responsible, though he was obviously left for a some time without being checked. It was after that incident that the consultant first asked me about further resuscitation,

I then missed only one day during the following nearly 6 months in the MH community hospital before Dave was transferred to the nursing home yet they told me very little there and certainly have a lot to answer for. Both his mental and physical health deteriorated badly under their care. I'm not at all sure I could cope with their records at all.

Sorry, I'm agonising on here and shouldn't be doing so. Thank you for caring. xxx

 

[turbo]

Hello Saffie I am sorry that you are so upset but not surprised. For the hospitals it is a patient record but for you it must be so dreadful to find out things about Dave that you were totally unaware of. You are so kind and supportive to everyone on TP and a wonderful wife.


turbo

 

[jaymor]

Saffie I really feel for you. Sometimes I think people in the know play it down to save us more distress and we don't get the full picture. My husband was in an assessment unit got 9 weeks following one of the crises we had. We saw him every day and I would call just before I went to bed. I would be told he had been agitated and we had some aggression but he is fine.

When visiting we would be told how he had been but we never knew the real horror until it came to his discharge and move to his nursing home.

I could not understand why he needed to go into care until I saw all he had gone through during the 9 weeks.

May be it was better not to know, it was traumatic enough to know he needed to be there. Finding out just how he had been, fuelled me to make sure I found the very best and right care for him.

Please take care of yourself and catch your breath, it has been stressful and upsetting for you, just wish kind thoughts could help you.

Jay



Sent from my iPad using Talking Point mobile app

 

[geum123]

Dear Saffie,
I am sorry. I have only just caught up with this thread.

I do feel for you. Reading records is very traumatic and upsetting.

I spent weeks going over Dads records, with tears pouring down my face.
After I had got over the initial shock it just made me more determined
to continue, because his health need was glaringly, all the more obvious.

As is often stated, you need to take care of you too, and if it is too much for you,
please do consider stepping back to gain strength.

Sending kind thoughts to add to all of the others. xxxxx

 

[stanleypj]

I'm so sorry to read about this Saffie. I can only imagine how upsetting such an experience would be.

Is there anyone who could help you through this traumatic process? Someone else to whom you can go through what you found in the records and offer another view? It just seems even harder that you seem to be doing this alone.

 

[Saffie]

Thank you Jay, Turbo, Geum and Stanley. You are very kind.

I thought that I had applied to have copies of the records but when the letter came it asked me to phone for an appointment to view the files so I let that stand. I am now glad that I did.

Thank you Stanley. My daughters will look at the pages I have had copied, especially the pages about the resuscitation and which I couldn't read too deeply in the record office, but although upsetting, it won't have the same impact. Even seeing Dave's signatue on the permission form for the amputation was upsetting - I wasn't there when he did that and he must have been very upset. There were a number of references in later notes about the traumatic events and suffering after the amputation. I am thinking that it maybe was not such a bad thing that Dave's memory wasn't very good and deteriorated quickly afterwards. It did say later that he was depressed so he must have tried to put on a brave face for me. Wish he hadn't.

p.s. I must get over this. Perhaps tomorrow it will all seem better.

 

[turbo]

Thank you Jay, Turbo, Geum and Stanley. You are very kind.

I thought that I had applied to have copies of the records but when the letter came it asked me to phone for an appointment to view the files so I let that stand. I am now glad that I did.

Thank you Stanley. My daughters will look at the pages I have had copied, especially the pages about the resuscitation and which I couldn't read too deeply in the record office, but although upsetting, it won't have the same impact. Even seeing Dave's signatue on the permission form for the amputation was upsetting - I wasn't there when he did that and he must have been very upset. There were a number of references in later notes about the traumatic events and suffering after the amputation. I am thinking that it maybe was not such a bad thing that Dave's memory wasn't very good and deteriorated quickly afterwards. It did say later that he was depressed so he must have tried to put on a brave face for me. Wish he hadn't.

p.s. I must get over this. Perhaps tomorrow it will all seem better.

Hello Saffie I think it will take a while to come to terms with the reports you have seen. It's so hard when you obviously love Dave very much.


turbo