PSP Association

Chc appeal

Hi everyone I thought I would share my fight to try and get Chc for mum

Last October we had a dst done by Chc the outcome was mum would get 40 percent of her care fees paid they said the other 60 percent were social needs which my parents have to pay due to their savings.

It was from this amazing site and in particular Kevin's posts that I realised mum was not getting what she is entitled to, plus since the last assessment in oct 2015 her condition has deteriorated considerably.

I automatically thought because the NHS was funding mums nursing needs that she was eligible for Chc. Apparently not the dst determines if your eligible for Chc or nursing funding or nothing. Mum was not eligible for Chc but for nursing funding which then became I joint package of care with local authority.

I have started the appeal process because as we all know people suffering with psp definetly have a primary health care need which should entitle them to full Chc funding.

I have a meeting with social services on Wednesday to start the appeal process. The social worker telephoned me yesterday to get more information about mum. Her initial comment was this has just landed on my desk and I don't know anything about your mum or the situation. As you can imagine I was not happy, I went on to tell her about mum. She told me that from what I had said mum was not for local authority but for NHS and she would do everything in her power to push for this. I requested this in writing. I was feeling very positive after this phone call but as we all know it's difficult to trust the system.

I then telephoned mums NEuro enablement team, mums case manager was not happy that we were having to fight like this and said the problem is the lack of knowledge about psp. She is going to gather all mums information from everybody involved in mums care and is attending the meeting on Wednesday to support us.

I'm sorry for the long post but I just wanted to share this, there has been times where I just haven't had to strength to see this through, but I definitely have the bit between my teeth now and will do this for mum because she can't do it for herself. So for all you lovely people going through the same there are people out there that do understand and are willing to help.

8 Replies

Yes, there are folk who genuinely want to help. Let's just hope that those who make the final decisions, who have never met your mum and probably never heard of PSP, will also want to help and read all the reports carefully.

I really hope you succeed without hitches.

All the best.



Thank you richmond1, I am also in that position with my husband and feel so very overwhelmed with it all, heartbreaking enough having to see our loved ones suffer without having this extra fight to deal with, Kevin has offered his advice which will certainly be welcome. Good luck with it all x


Don't give up as hard as it is, I've got along way to go I guess with many more knock backs but hopefully it will be worth it and if not I did my best xx

1 like

Well done Richmond!!

Another fight you don't need!

Do please let us know the outcome!!! X


Good on you for fighting. I hope the outcome will be a positive one. Good Luck

I need to start the ball rolling on a no decision for my Mum but don't have anyone to back me up medically but I'm still going to ask for a review of decision. I keep putting it off though but the time is ticking to get that letter in arggghhhg

1 like

Thank you do much. I had tears in my eyes when I read your post, as you are so kind to think of us when you have everything else to deal with. We have been turned down once for CHC. When I read the blurb, we tick all the boxes, but then I read that it is for, "end of life" and we are not there yet, - very confusing! Best wishes to you and your campaign. X


Hi Robbo Chc is definitely not just for end of life, fast track is for end of life, if you have the strength put in an appeal and fight this decision (hard to do I know on top of everything else we have to do). Chc funding is for people with a primary health care need.

Get people on board your GP, neurologist etc this will provide evidence


1 like

Thank you. X


You may also like...