Just to say thank you to this forum regarding all help and advice. My dad passed Sunday 3rd November. I am grateful it was quick as we believed he had an infection that the doctor didn't check for (even though we made them do a home visit on the Tuesday before he passed)
Dad's swallow stopped compltley on the Friday as well as his speech. He was given morphine by the district nurse and the EOL drugs started on the Saturday. There was talk to put in the driver from hospice on the sunday but he passed sunday morning. I imagine he had had enough.
I do have a meeting with his doctors next week. I have discovered they never passed on the PEG feeding tube referral as requested by the dietician in July. A UTI check was not done on the Tuesday before he passed as we requested when we noticed he wasn't passing a lot of urine in spite of drinking a lot. We also have had several issues throughout dad's disease, I think largely due to ignorance or practitioners being unwilling to listen to us that something was very wrong.
the kicker is we just got accepted for the CHC funding. Though even then, they still hadn't made up their mind about how they were going to handle the package of care for dad. I believe that because of this they have to compensate myself for any care I paid for from the agreed eligiblity date.
If anyone needs any advice re CHC I am more then happy to explain our experieince, or anything with the disease. I only managed to get dad formally diagnosed with Corticobasal in feb 24, and he has had symptoms for 3 and a half years we believe.
Sending love and thanks to you all again
Chloe xx
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CJFreckles
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I'm so sorry for your loss, it sounds very similar to my mom who passed away from PSP in April. She got accepted for part funding at the very end and it was too late. Her swallowing stopped and her jaw clamped shut which let to the fast decline at the end. A lot of questions still go through my mind wondering if we did everything we could, her GP didn't really help and just said to my dad ' what do you want me to do'. In the end the cause of death was listed as PSP but we're still uncertain as to whether it was really PSP or that she passed from dehydration. She didn't want the peg tube so we had to respect that. There's not enough awareness of this awful disease and how it affects the patient and all the people around them who are so desperate for help with this. Take care
I am so very sorry for your loss. Unfortunately I'm sure most of us who have lost loved ones have stories to tell about lack of care, interest, knowledge on the part of the medical professionals which made the whole journey even more difficult. I doubt that PEG feeding or a test on a possible UTI would've made any difference given your Father's rapid decline. As you say he had had enough.
'I do have a meeting with his doctors next week. I have discovered they never passed on the PEG feeding tube referral as requested by the dietician in July.'
So, what did the doctors say about that? Best wishes
The meeting went about as well as expected. We experienced a number of issues with his surgery and not just regarding dad CBD diagnosis. The doctor got very defensive (which I expected) but I remained calm and I had kept all email correspondence, notes and pictures to prove my points raised. They were clearly panicking about the PEG referral as the care company which helped me with dad still had access to his medical file which hadn't been closed and they sent me a load of screenshots of correspondence between the dietician who made the original referral and the surgery.
When the doctor realised how badly they had failed him he kept trying to over ride whatever i was saying but I pressed through until I presented the last picture of his urine bag being brown and questioning why they didn't test and why did they put on his records it was running "clear". That's when they went silent.
I am reporting them to the CQC. Although it is anonymous it does force them to be on their back to look and be more mindful of other patients who have these awful diseases, as well as the NHS ombudsman. I am also applying to be a PSP/CBD volunteer speaker/ educator with PSPA (though I believe they will only onboard me after 6 months since dad has passed, I guess for grief to run it's natural course in that time, which I understand).
Hello, I would be keen to hear more about the CHC process. My husband as first diagnosed with having Parkinson's Syndrome in October 2022 but by February this year, after seeing a different Neurologist, he suspected CBD. It has just been confirmed after an in depth review.
At this stage I can still manage his care on my own, but his condition is worsening a lot quicker and I would like to have any advice to hand in preparation for what is still to follow.
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Fast Track CHC/End of Life Care
Lost my Dad 
