Well we had our 1st CHC appeal meeting today. I am feeling very low and depressed because I have been tasked with `providing further evidence` despite the fact I have done just that for the past 2 months ! I thought my letter was really comprehensive and covered all the salient points.
I get the distinct feeling that this is all to just shut me up, wear me down - whatever. Everything I raised was picked apart, consultants letters were `not relevant` to the period in question etc ....
The person who interviewed me today was the CHC team leader who was on the panel who `downgraded` one domain (nutrition) but denied vehemently that they downgraded anything - "they interpreted the evidence differently".
I took a legal representative with me but when she raised `process flaws` these were brushed aside with remarks that `we are updating our procedure`, although I did get an apology for remarks made by the assessor.
I really feel so depressed tonight - it is the first day for months that I haven`t been able to visit P in the Nursing home. All I want to do is concentrate on him for however long we have left.
xx
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NanBabs
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My poor NanBabs. Your man has had this (PSP) since I don't know when; why is anything less an issue now then it was at least 3 years ago.
Dealing with these agencies puts only extra stress on everyone. On their side, they must be able to minimize all needs thereof as well as prolong the award process through "the art of denial. " On your side, all you want is a way to take care of your loved one in the way your government has promised!..I am sorry you must go through this....I really cannot understand why there is any questions to the need and expediency of award.
Hang in there darlin.....
I will not leave you comfortless says the Lord: I will be with you.... John 14:18
P has had PSP for probably 5 years or more and he's been in a nursing home for the past two years. Obviously, as the illness progresses his needs change but they never lessen!
I need all the comfort I can get tonight, so thank you.
Nanbabs I am so sorry. I have been thinking...is there anyone who could contact 38 degrees to get a petition going regarding CHC funding? I bet all of us who live in the UK would be happy to sign it. I was actually going to do it myself earlier and before I had read your email but I think it wouldn't be appropriate for certain reasons. However I would be happy to sign a petition and get others to sign it too.
Nanbabs there has to be someone who can do this? After reading your post and so many others something has to be done? We need a heading like CHC funding for neurological conditions. What do you think?
The 38 degrees petition sounds like a really good idea. So many people are experiencing the same insensitivity from the chc, it needs to change. It's not fair.
Doing something positive would be good. I'm not used to all these negative thoughts I'm having at the moment. Why do these 'financial gatekeepers ' do the job ? They hide behind the small print to avoid funding PSP sufferers and we, the family, have to fight or beg for what is right.
Sometimes you feel like you are taking on a whole army of people trying to con you out of your entitlements, so wrong on so many levels. Why oh why do we have to be put through this gruelling process to prove that our loved ones deserve to be funded for their very specialised care. Sorry you are having to go through all of this aggravation , it's disgusting.
Know what you are going thru Nanbabs! Why is it the same all over the world?! I had same battles. No-one around us when we needed extra help for our loved one when we see they need it! It is heartbreaking! And utterly exhausting, at a time when you want to be concentrating on your loved one.
Sending you a great big (HUG) from my part of the world. Must be almost world encompassing by now!
Deep breaths, keep fighting, you are right!! With Kevin_1 on your side, you will have the key to some of the answers!
I'm so sorry you have to go through this. We had the same. It's so insensitive. Take a break from the chc stuff for a moment and then try to summon up the extra evidence because you probably will get it. Sending you love and strength
Nanbabs, this is the saddest post I have read in a long time. It makes me both sad and angry that you and others are still going through this sort of thing. It is fourteen months since D and I spent four hours one afternoon in a CHC review meeting, he listening while I argued on his behalf. One week after that meeting he lost the ability to communicate with me and two weeks after that he died. I still resent that we wasted that precious afternoon together.
I completely understand the exhaustion you feel. I do hope you have a better day today and enjoy time with P.
Vicki a similar thing happened to me. Although thank goodness G wasn't at the meeting. They saw how he was and it seemed that was it...but no! I spent the last month of his life being bullied by them because by now they had decided he could have CHC after 4 months of silence! Everything had to be their way though. I still feel so angry about it. I felt I lost precious time with him because of them. I am trying to get myself together emotionally to make a formal complaint.
So I think we need someone else to do the petition. However it needs to be someone who has gone through it NOT going through it now? I had a look at 38degrees site and there are only 2 boxes to fill in one about why it is important. Can't remember what the other was but it is just a simple question. Plus you put the headline in about what the Petition is for. I actually started to fill in the boxes then thought it wasn't appropriate if I am going to make a formal complaint.
Any volunteers to highlight what is a National disgrace?
I’m so saddened to read this NanBabs! It’s so utterly unfair and simply wrong of chc to cause this unnecessary stress to you and everyone that encounters their nonsense! I think to work for the CCG you must have to be one hardened bar steward that simply doesn’t care and thinks they are actually using their own money! Don’t let them beat you! Fight them all the way! In the meantime please try and look after yourself because stress is a killer x
This system stinks, once you have been awarded CHC you should not have the stress of going through it all again. It seems that the powers that be try every way to get out of paying up. How can someone with a progressive position get any better or no longer need nursing care. Politicians cannot be be trusted, all they are bothered about is saving money and show no concern for very sick sufferers and how they are supposed to manage without financial help. As you may have noticed it makes my blood boil to continuously put us through the mill to prove ourselves. Disgusting.
Until you are in this position you just can`t believe how stressful it is. Ask me if I would rather have the funding or my husband back as he used to be ..... I know, it`s a no-brainer ! Do these people really think we`re asking for something we`re not entitled to ?
However, we have to deal with reality, as unpleasant as it is, and just get on with it. Instead of us having to provide evidence and `prove` the case for CHC funding, the onus should be on the NHS to `prove` we don`t need it. How can you argue with someone who justs keep saying `No ` ?
I know how you are feeling. We have just had a disingenuous letter in response to my son's complaint about B's CHC assessment. They state that I said things that either aren't true or I have no recollection of saying. I got so mad reading their response, I nearly blew a gasket. Meanwhile, I was sitting at the side of B's bed in hospital. He had been admitted for choking and needed oxygen. To cap it all, a sickness bug has now hit his ward. What next? The CGC certainly know how to kick a man when he's down.
I can`t believe how heartless some of these people must be to treat us so badly - talk about kicking a dog when he`s down ! How they can ignore support letters from consultants and doctors and demand more evidence - surely that`s their job, to find out the true extent of someone`s health problems.
All of this wasted time and money on committees !!
If you forget about money, its simple really. If one " outside" person spent one day with a PSP patient alone they would find out it is nursing, not social care.
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