It has been a very long time since I posted, my earlier posts of being in shock over my dear Dad's diagnosis seem a long time ago now. I do however read everyone's posts each morning before going to work and am ever so thankful for the plentiful advice I have come across.
I have been reading Kevin's posts in detail this afternoon as much as I can, as Kevin you do seem to be so knowledgable on the CHC process, thank-you for all the links you've put in previous posts. There is still masses for me to read I know but I wondered if there is specific advice I could cut to the chase on regarding the planned DST meeting my family have in 2 weeks time.
Already I've been told that a social worker will attend the DST but will also attend beforehand to provide a report that feeds into the MDT. Can I ask to see this report so I get an understanding of whether there is reference to the "legal limit"?
Am I right in thinking that the way to get the best out of the DST meeting is to:-
1. Ensure that the meeting covers the nature, complexity, intensity and unpredictability of Dad's needs in relation to the 12 domains of the checklist plus
2. Trying to be clear that where good care and treatment is reducing a need, that the checklist considers as if the care was not being provided?
Our circumstances are that we have been paying privately for care for a long time now and I feel we are definitely at the right stage for CHC consideration.
Equally I want to be armed with as much info as possible so that I can challenge at every step of the way if needed.
Any help and advice would be very much appreciated.
Sending everyone on this site suffering or caring for someone with PSP or CBD my sincere love - this truly is the cruelest journey ever to walk.
Written by
Didalju
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It sounds like you've got this fairly well worked out.
Here is the quick route, but I will answer you questions first:
The social worker will be doing a needs and risk assessment. This will form the evidence on which she will make a decision on the legal limit. It might be that a manager will make that decision based on her report. You can always ask her opinion on that after the interview.
Yes you do have a right to see the report. Just get a one line letter typed out and signed by your Dad appointing you as his representative. (I would get three done so you have spares. Then you can write to Soc. Serv. enclose the letter and request to see the report and any other documents surrounding the decision. You can also do that with the CCG, but they are unlikely to respond unless a solicitor does it... because they are so overwhelmed.
Your questions:
Q.1 Yes sort of. They will form that opinion toward the end of the assessment. They will be thinking about that all the way through. You need to get in as much about unpredictability, how many different professions are involve. Also give answers about thinks as they are at the worst. Do not pull your punches.
Q.2 The assessment is supposed to ignore all care that is currently in place. So describe all of the care demands as they show what is needed. Think of everything - including any monitoring you are doing for both changes in symptoms (which can develop rapidly and unreadably as well as all of the work you do around contacting clinical professionals and discussing his clinical needs. Brain storm in advance. It is better to look less than confident or even competent. It should not make a difference, but it does. If they are worried about your ability they will make damned sure care goes in
Take a look at this - it also tells you what health needs are and they are the ones to make sure are included:
Download and print the decision support tool and fill it in yourself - It is easy to complete and it's great to work from it in the DST and you should do your scores and put them on it. Then you can argue their scores with them at the end of every section. It is highly acceptable to work this way the guidelines encourage full involvement.
Yiu can ask their opinions about the nature, complexity, intensity and unpredictability at the end, but as before they might want to go and think about it.
Do come back with any Q's and wishing you both the best.
I do hope others chip in - there are some here with serious knowledge and experience of this.
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