Hello to you all, hope your weather is as good as it is here in Suffolk, England. It’s beautiful at the moment.
Today I received a letter from CHC to say that my mums case had been deferred due to insufficient evidence. At least it’s not a no, I suppose.
Has anyone any advice before I call them?
It has been deferred back to the nurse who did the original assessment, and was clearly against it and is on leave for 2 weeks(today being the start of her 2nd week)
Mums PSP is far more problematic during the night than in the day. She was waking between 6-12 times however this has since reduced to 4 with new meds. Having said that it had risen to 6 again last night so not sure how the next few nights will go.
I am totally shattered (as you all will be both carers and patience) my shoulders, arm and back have finally given way to being able to turn her on a night time and I’m worried about what happens next.
Day times are manageable apart from the regular falls, difficulty feeding, lack of empathy, and anxiety where mum feels the need to be with me every second of the day, hence looking for me and falling. She is starting to feel that she is a burden on me and her mood is low,
I was due back to work this Thursday after 3 months leave however it seems I will have to extend this again as until OT can find a way of getting Mum turned I am unable to get carers in.
Once again any advice would be great.
Wishing you all a peaceful day xx
Written by
Sarah1972
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I suspect what they men by deferring is that the panel is going review the evidence. If cases are unclear the funding panel often interview the nurse who did the assessment. They probably have an anomaly in her report. This is standard procedure.
I would just telephone them and ask what they mean and get a time scale too.
Hi Kevin, thought I would update you on the phone call I had earlier to lead nurse of CHC funding. They have said that they do not have enough evidence so have deferred back to Elena (nurse who completed assessment) unfortunately she is on leave for another week.
They have said that my diaries were good but need more of them to evidence mums care. I have also spoken to mums social worker who is very motivated and believes Mum should have the funding. He is trying to get an assessment on Mum for her mental capacity as this should support us. Although Mum is able to make decisions about some things she lacks capacity in others such as risk of falls should she move herself, unable to explain self to medical professionals and agreeing to things rather than say she doesn’t understand.
The physio has referred Mum back to social services for the turning equipment, due to the expense, however Sian services have said that it is down to health as they assessed her as needing this. On a positive Jack the social worker is going to chase this to ensure someone does it. I informed him Mum slept in her armchair the last 2 nights due to my inability to no longer turn her at night, he agreed that this wasn’t good enough. Unfortunately the physio is on leave for a week and the OT is on long term sick.
On a positive though I have finally managed to get Mum an appointment with a neurology Dr who has PSP patience (they no longer have a consultant) to discuss her MRI she had back in December.
Anyway I’m now racking my brains as what to do next and what to put in my diary.
Yes, more evidence or anomalies, but it does mean your in with a shout and not rejected as you said.
If you have a supportive Social Worker you may well be home and dry. Was that Social Worker part of the DST? A social worker has to be there as well as a nurse, by law. Though sometimes they do their assessment separately - its not legal, but it does happen.
If they were I would telephone them and ask if your Mum's care is within the 'legal limit' for Social Services. This is the dividing line between the two services. As part of the DST the Social Worker has to make that decision. If they say the care is beyond their legal limit then Soc. Serv. are legally not allowed to provide a service and the CCG have to.
Many people have won their case by getting that simple statement put in writing to them or the CCG.
Good luck with the evidence do lay it on as it is at its worst. Also do not forget to put in your own vulnerabilities as a carer... Injuries or illness which limits what you can do. How much you are going in at night., exhaustion - everything. These increase the rik to his well being and go in your favour.
So sorry to hear this fingers crossed it means with more ammunition it is still possible. Thank you for all the help you gave me in sharing your Mom’s DTC. Really hope there is a light at the end of the tunnel. It is such a stressful process. I have a meeting on Wednesday to ‘signoff’ My husbands application - assuming I agree with the contents. Then I guess wait and see.
I recall Kevin sharing a link for the Beacon tool kit which I found helpful in preparing the application wonder if that is worth a look through.
Wish you a positive outcome. Do keep us posted - it is a learning curve for so many of us!!!
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