We have just been declined for CHC funding for my dad who has advanced stage CBD. Apparently he does not meet the health criteria!! He is on lots of medication which my mum administers. He is at home with carers coming in 4 times a day to do all the personal care and has a visit from the District Nurses once a week. He was in hospital for about 6 weeks prior to and during Christmas.
I have no idea how poorly someone must be to get CHC. Apparently 2/3 of people who apply get refused.
If you're deemed to be 'end of life or entering a terminal phase' you can apply for Fast Tracked CHC. This is just crazy because from the day of diagnosis you are in a 'terminal phase' as there is no cure for this awful illness. We spoke to the District Nurse about this and she said we probably couldn't apply for Fast Track for dad as no one knows how long he has left even though the criteria for Fast Track states you don't have to give a time limit on life expectancy.
This just goes to show how little a lot of the medical profession know about CBD and PSP.
The system is ridiculous. My dad is bed bound, non verbal, double incontinent has periods of agitation, he cannot feed himself, he is on a puree diet and has thickeners for drinks, he has a catheter, he cannot independently move himself so requires the carers to move him to avoid pressure sores, he has liquid morphine to settle the agitation at night which my mum gives him, he suffers from re-occurrent chest infections and has choking episodes.
No idea where we go from here.
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Stormtrooper4
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I am so very sorry. I know how very very frustrated you must feel as the same happened to us. I hope being able to rant on here helped a bit. I agree with everything you say. It just shows how we have to raise awareness. Big hugs AliBee x
Please let me know how you progress, as I will be moving forward to this application with my mum in the near future and believe it’s normally a very difficult process. I hope you can resolve this, it’s one battle we could all do without!
Sorry to hear of your situation. We did not appeal when refused CHC for my husband instead re apply a year later and got it the second time. The process was stressful too, but we knew what to expect then and had more health professionals involved with their written assessments etc and of course his PSP had worsen too. All the best.
Hi Kasenda, just wondered if you knew the reasons why you didn't get it the first time but did get it the second time? Currently waiting to hear the results of our first attempt but not feeling very hopeful now I've seen the comments on here...
Hi, the reason was that because he needed to be getting worse in his condition. I have heard that in some cases, CHC is only given when the GP states that the patient has only 6 months left to live. Therefore quite a few are fast tracked. So you need to be getting more high and severe in the checklist domains. I wish you all the best with your application. But don’t give up.
I totally understand this, I’m having the same problem with my dad and have been beating my head against a brick wall with it. Over and over I’ve been told my dad doesn’t fit the criteria! Dad is now in a nursing home and now classed as end of life and they are still dithering around. They are apparently doing the check list on Monday but I have now said to the nurses that surely he should be fast tracked now?? But she wasn’t sure. He’s literally got a small amount of time left, it’s disgusting!!
So sorry to hear what you are going through. My wife sadly passed away from PSP aged 54 in November 21. All I can say is you are entitled to the funding but unfortunately you have to fight the system. Find out as many names as you can you can. From my experience District Nurses were a wait of time, so find out who there managers are, if you have a social worker there managers, and write letters of complaint, follow the complaints procedure with you Health Board and Write to your MP and Secretary of State for health. Unfortunately unless you make as much fuss as possible you will get no where. I know life is hard enough dealing with this terrible illness but do not give in. Good luck.
I have just been through this process for my wife who has CBD. We originally applied in March 2022 which was refused we only had 1 domain that was severe. After six months with things gradually worsening we spoke to our social worker and we re-applied and were granted a RPAN which is a Review of Previous Needs from which we were granted another full assessment. You have to go through an RPAN as it was less than a year from initial assessment. Don't give up as on the second assessment we managed to get 2 domains at severe which were Cognition and Drug Therapies & Medication. The Drug Therapies was a split decision but with the backing of our advocates they had to go with the higher level of need which gave us 2 severes which qualify for funding. My wife is in a similar situation the only difference is we can mobilise her with help from carers. Stay calm and get as many advocates as you can to back up your assessment when you get another stab at it. xx
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