DST MEETING. HELP !

[marshal]

Fear and trepidation. DST on Friday. No idea how to deal with this. Look on line, read the posts and I still cannot get my head round it. Have I got to prove a case for my OH . The last 6 months have been the worst time ever for my love ,my girls , and me. I have seen posts about carers and wives going armed with files and paperwork to these meetings ready and able to take on the powers that be. I am going in naked so to speak no files no paperwork and no idea about the way I should be going about it.
At this present time all I think about is OH fighting his own hellish situation day and night and the pit of despair that is slowly consuming me.

 

[Helly68]

Marshal - I am afraid I am not sure what a DST is, so not sure if this will help but you have my sympathies.
At the start of any kind of meeting involving my mother's care , usually best interests, I make sure someone explains what the purpose of the meeting is, who everyone is and what they aim to cover. This should happen anyway but if it doesn't I ask for it. Make it clear if you have POA.
It may help if, in advance you write down all the important points you want to make as bullet points. It is very hard to look at emotional and sensitive issues like this, but it may help you get your views across and avoid you forgetting something with the stress of the situation.
Ask if you can record the meeting - they may or may not allow this.
Is there an ageing or disability voluntary group locally who could either advise you or possibly accompany you as an advocate? It may be that only certain people can attend the meeting, but they may be able to offer advice beforehand.
If something is raised in the meeting that you are not aware of, need time to think about or don't agree with, you should be able to think about it rather than having to answer on the spot.
I try, though it is very hard, to politely refute anything said that I don't agree with. CH can be very defensive, as you probably know but if you have doctors notes etc then these can help to provide a factual record of what has happened - instead of what someone wants others to think has happened. Very scary.
I hope it goes as well as it can. Please don't be too hard on yourself, this disease is a nightmare, even without the failings of the care system.

 

[Jessbow]

Are you applying for CHC funding?

 

[marshal]

I think that the outcome of this meeting is to let me know if we are eligible to apply for CHC. It is a Decision Support Tool meeting. All gobble de gook to me.

 

[marshal]

Marshal - I am afraid I am not sure what a DST is, so not sure if this will help but you have my sympathies.
At the start of any kind of meeting involving my mother's care , usually best interests, I make sure someone explains what the purpose of the meeting is, who everyone is and what they aim to cover. This should happen anyway but if it doesn't I ask for it. Make it clear if you have POA.
It may help if, in advance you write down all the important points you want to make as bullet points. It is very hard to look at emotional and sensitive issues like this, but it may help you get your views across and avoid you forgetting something with the stress of the situation.
Ask if you can record the meeting - they may or may not allow this.
Is there an ageing or disability voluntary group locally who could either advise you or possibly accompany you as an advocate? It may be that only certain people can attend the meeting, but they may be able to offer advice beforehand.
If something is raised in the meeting that you are not aware of, need time to think about or don't agree with, you should be able to think about it rather than having to answer on the spot.
I try, though it is very hard, to politely refute anything said that I don't agree with. CH can be very defensive, as you probably know but if you have doctors notes etc then these can help to provide a factual record of what has happened - instead of what someone wants others to think has happened. Very scary.
I hope it goes as well as it can. Please don't be too hard on yourself, this disease is a nightmare, even without the failings of the care system.

 

[Jessbow]

To, so get CHC, he needs to have a MEDICAL need.

I applied for my mother, who was partially sighted, doubly incontinent , insulin dependant diabetic with Lewy Bodies.....and was refused

She later got it when diagnosed with a terminal heart condition which was inoperable due to the rest of her problems. She only lasted 6 months after it was awarded.

it isn't easy to achieve!

be ready to fight his corner and to fight hard xxx

 

[marshal]

Many thank's for your advice .I will get some notes and bullet points prepared. Your posting is very helpful .

 

[Helly68]

There seem to be CHC and DST related resources here -
https://caretobedifferent.co.uk/nhs-continuing-healthcare-decision-support-tool-tips/
I haven't used this organisation so cannot vouch for them.
Now, with more context, I would say that if in the meeting, someone says that your PWD has the ability to do xxxxx and you don't believe they have, you should state this and ask that your view is recorded. I think differing opinions/ability of CH to follow clinicians advice has been an issue for you and so you may need to be wary of them covering their tracks or of the NHS trying to save money. CHC funding is very hard to get and as JessBow says, is often based on medical conditions other than dementia. Ironically dementia being seen as not enough to qualify.....beggars belief.

When we were applying for LA funding for my mother in a CH, I tried to view it as a process, which we did out best to provide what was asked for and that I couldn't do more than that. The council were by turns confusing, contradictory and vague. It made me extremely anxious and I lost a lot of confidence during the process. Thankfully Mummy is now council funded, I dread any worsening in her condition - both for her and in terms of whether her CH will remain suitable.

I think what I am trying to say here is, try not to doubt yourself. They system is rigged against carers, sadly and all we can do is try to follow the processes. I wish you all the best.