My dad was diagnosed with CBD in May 2021 (symptoms began way before this).
My mom is his full time carer. I help on my non working days.
We receive AM & PM (wake up & put to bed calls) from a local care agency, which is a god send for my mom.
My dad is at the stage where:
he is completely wheelchair bound.
He needs a standing frame to move him from chair to wheelchair & bed etc.
He requires a chairlift to get him upstairs.
He's upper body strength is becoming weaker. If he falls maneuvering he used to be able to pull himself up to lean against the wall, this is no longer.
He requires continence pads.
He occasionally chokes on food.
His cognitive state is declining rapidly. Short term memory is non existence. He is now struggling with aspects of long term memory too.
He constantly needs to go visit the bathroom. He has the urge to pass urine or open his bowels.
I spoke to his neurology nurse about CHC funding and she said he wouldn't qualify as he wouldn't meet the criteria?
I am not familiar with the process and would love to hear other peoples thoughts and ideas please.
We are at the stage now where my mom is completely exhausted. I feel we need to act now as things are changing so quickly.
Thank you in advance.
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RW22
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I'm so sorry to read your post. If you look up Kevin_1 in the search facility, he posted a mine of information.
Sadly CHC can be a bit of a postcode lottery but please talk to your GP and or your District Nurses who will be able to help with this. Our application was submitted by our District Nurses and we got it straight away and then had no problems with a subsequent assessment, but I know it can be difficult. You need to show the worst case scenario, tough though that may be.
Sending best wishes to you all, keep on keeping on.
Anne
PS - With regard to the need to continually go to the loo. Your GP/Nurses can prescribe a Conveen which is an external catheter which has a sheath to fit over the penis. This is worn 24/7 with the pee going into a bag. It was a lifesaver for us as my husband was prone to unpredicted falls. Hope this help Anne
You may be in for a fight, do you have the frailty nurses and consultants on side, its the hardest benefit to get, you have to basically on death's door. It's also a postcode lottery on how it's awarded. You may be offered a part award as well. As said above, you need a carers assessment, and the local council will arrange carers, which you will have to contribute to the cost, if you have private funds, you will be assessed on them as well.
Hi RW22. My dad was at about that stage when he qualified for fast track CHC funding. I think the reason ours was approved was because we had an amazing palliative care nurse on our side - she guided the team to make the decision. (We have since been told that my dad has lasted longer than he was supposed to under the rules.. but that's another story!!!)
Do you have any links with the palliative care team at the moment? They don't have to be brought in just at the end of life - they are there to support all the way through and really are helpful in so many ways. If you have a local hospice, this is generally the way to contact them.
The link here is the continuing healthcare checklist - it's what the authorities use to decide whether you qualify but it can be interpreted in different ways, hence the postcode lottery. It's good to have a read through and really understand which 'features' of your dad's illness that you have to really explain and push:
Seeing DOingwhatIcan's reply has remined me of the situation with Mum, the Community Matron got the GP involved who assessed that Mum was not expected to last 6 months - this then puts somebody on fast track and makes it much more difficult for Social Services to turn down the request. When the GP said that it was really upsetting but then she said "we know so little about PSP & how it progresses, I can't really say how long your Mum has and if she proves me wrong then that's great". Mum lasted 11 months. So try and get the GP on side and see if they will take this approach for you. We were funded for 4 visits a day and it was an absolute godsend that meant Mum was able to stay at home until the end.Goodluck, i know how stressful it can be.
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