Continuing Health Care - Preparing to fight PCT's decision

Katykat

. i can't tell you how angry and disgusted i am at this national scandal and disgrace!

mark[/QUOTE]

You dont have to tell us, I can tell how it angers you, me too. Have you read any of the posts on this forum

http://freenursingcare.findtalk.net/general-chat-f1/?sid=6ddbb732d7531656d701f775cabccfb3

They're all in the same boat, they've helped me a lot.

Katykat

At the other end of the scale mark, there is one lady on whose relative scored 2 severes, 4 highs and quite afew moderates. Guess what!, she was turned down. They do exactly what they want. They cherry pick the parts of the NSF that they want and just disregard the rest. One poor chap has been fighting for 17 yrs. Quite unbelievable! A lady who has been very helpful has recently won her case retrospectivley ( there it is again see, paying out when they know exactly how much is involved) but they are taking their time to divvy up. She is very clued up and now is preparing to find out through FOI exactly how much her case cost. It went on for about 7 yrs and involved many professional people. It must have cost thousands and thousands, much more than they are eventually paying out. Dont know how she will collate this information though. I think she intends to publish it.

Errata

my partner wisely tells me its because they cannot vote any longer -

your partner has a point, but their families and friends can vote. Unfortunately very few people concern themselves with the problems of obtaining CHC until their own relative is involved. If they had done, then a better system could have been designed many years ago.

monkeyspanner

I am afraid we are well down the road to reinventing National Socialism as perfected by New Labour.

-The first principle is to incorporate as many people into the state as possible so that their standard of life depends on maintaining and cooperating with the system however corupt.

-The second stage is to farm out the organs of state and pretend they are independant when in reality instructions still originate centrally.

-The third is to invent a new language where ordinary words take on new meanings and are supported by completely meaningless new words and expressions. This language is spoken almost exclusively by civil servants with grossly inflated job titles, and self importance which is only matched by their extraordinary incompetence.

-Finally the whole thing is dressed up as open, fair and customer centred when in fact it is designed to self perpetuate rather than deliver services to the public who pay the money to keep the whole thing going.

Anyone who objects is seen as a problem to be removed by whatever means possible.

Am I paranoid? Yes probably. But I wasn't this bad before I had to deal with the NHS.

atoneswitsend

I am new to this but even after a few weeks I am realising that chasing CHC is akin to cockle fishing in Morecombe Bay on an incoming tide.
My SIL had a massive stroke from which we did not expect her to survive but survive she did if her existence can be called survival.
She is paralysed with only a little movement in her right handside. When she came out of hospital she could not speak although now she can say a few words.
She is fitted with a urinary catheter.
She is fed via a PEG and all her drugs are administered via the PEG. She spends most of the time in bed only out for an hour in a "lift in space " chair which we have purchased. We have installed a downstairs shower for her as she is now downstairs in her new bedroom which used to be the sitting room.
To get her to and from the bed and chair she is lifted via a hoist.
Currently we are funding two live in carers who look after her daily needs both care and medical.
Recently it has been noticeable that she is becoming confused and does not know where she is.
So far she has only seen a physio or SALT which we have provided. No one from the NHS.
Finally she has extremely frail skin and moving my SIL has to be very carefully done as has positioning which can only be done by her carers.
When discharged in July I knew nothing of checklists or CHC. Over the past weeks I have through this site learnt much but still I feel I am sinking in the mire of PCTs and NHS.
Today I received a letter in reply to mine requesting a copy of the checklist and reasons for their decision. Enclosed was a copy of the checklist completed by the ward sister 3 weeks prior to discharge giving 7 "C", 4 "B" and 0 "A". Also an admission that this had not been sent to the NHS but the "Care Team". whoever they are.
The NHS funded healthcare team knew nothing of my SIL.
They have now agreed to carry out a full assessment but I desperately need advice and help.
Hence this rather lengthy missive for which my apologies. I am however at my its end

Katykat

Hello Atoneswitsend. Yet another example of inefficiency and poor workmanship in the NHS. Basically your SIL should never have been discharged from hospital without your full involvement in the decision making process. On saying that, I do understand that at the time, all you want to do is what you consider to be the best for your relatives. However, a) you should have been informed AT THE TIME that a checklist was being carried out b) WHY it was being done and what it was for c) you should have been involved in the process d) it should have been explained to you what NHS continuing care was, even if your SIL didn't qualify. Having said that, it seems quite clear that your SIL should have scored far more than they gave her. It seems quite unbelievable that she didn't score an A for feeding, when she can only take nourishment via a PEG. If she had scored even just 1 A, she should have had a full assessment, which again should have involved you. It seems the Ward sister has grossly underscored your SIL, whether deliberately or not. As for sending the checklist to the care team and not the NHS, you should determine whether this "care team" is actually Social Services. It possibly is, especially if SS are involved in her care. I strongly recommend that you follow the link in my post above for the fre nursing care site. It has helped me tremendously. As for my ( personal) opinion- well, I think she should definately qualify, but you will have a fight. I'm fighting, have been for 3 yrs & I intend to continue until I get them to pay up.

monkeyspanner

The initial checklist according to the CHC Framework is supposed to be completed in favour of the patient i.e. if there is any doubt about scoring it should be scored high. I would have thought from your description of your SIL's medical conditions that she should definitely have had a full DST assessment at the earliest time possible. Also in that she was not expected to survive this should have been fast tracked.

I would recommend you contact the PCT CHC assessment team state that you believe proper proceedure has not been followed and ask for a retrospective review in addition to the assessment. If this does not produce result in a reasonable timescale go to the SHA who can review proceedure and if necessary sort the PCT out for you.

In order to prepare for the assessment I would recommend you read the Framework document and the DST(decision support tool). I am assuming here you are in England as Wales & Scotland have not adopted the new sysytem. It may be useful for you to complete the DST yourself so you have an idea what scores you think your SIL should have. From your desciption I would have thought at least 3 highest category needs for mobility, feeding and incontinence. You should make it clear to the PCT that you or another family member wish to be present at the assessment in order to represent your SIL. If you do not agree with any of the scores at the assessment state clearly you do not agree and insist this is noted in the assessment.

Here are the links to the documents
http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076288
http://www.warrington-pct.nhs.uk/pdf/Continuing%20Care/Decision%20Support%20Tool%20for%20NHS%20Continuing%20Healthcare.pdf
Both these were revised in July 2009

Lastly this process is likely to take some time (months) to resolve so try to compartmentalise, it is difficult I know.

atoneswitsend

Thank you monkeyspanner. Yes we are in England.
I realise this is going to be a long and difficult road as evident from yours and others work in the past.
I have downloaded the guidelines for the checklist and CHC assessment. My desk is becoming a reminder of my late office desk, in and out baskets, pending and priority lists.
AND I RETIRED 15 YEARS AGO!
To get to grips with it all is difficult. I have the distinct view that the "assessors" already know what qualifies for the next stage so deliberately work to arrive at a level just below.
Just call me cynical
My plan is to insist that I or another family member is present at the assessment which I assume will be carried out by the DN. Also to request to see the hospital records for my SIL. I am not sure what this will tell me. Will it be detailed to show what medication/treatment was given on any particular day?
I am interested to know what state of health my SIL was in at the time of the completion of the checklist. I am convinced that she did not or would not have fully understood what was happening or what it meant. Afterall even I find it all difficult to fully comprehend.
I have studied the DST. This I feel is open to much "personal" interpretation and as such can be completed to achieve a particular score or result rather than to the benefit of the patient.
If we disagree with the scores and this is registered what use is this? As a lay person surely the medical "experts" views will outway ours?
It is a relief to be able to talk to others who know what I am experiencing. It has been lonely to date and I feel I am neglecting the precious time we may have with my SIL.
Thank you for reading my ramblings

margaretclare

In addition to feeding, mobility and incontinence, add tissue viability. You say her skin is extremely delicate therefore she is at high risk of developing pressures sores.

Good luck!

atoneswitsend

Thank you Katykat. I appreciate all the help and advice I can get.
Without a site such as this it would be very lonely battle and battle I know it will be. However I will not give up.
As I used to say "Illegitimi non carborundum"