PSP Association
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Continuing Care

Hi Everyone,

This is my story of the CC saga as you have been following my blogs. Had a phone call asking my if I would like to be present at a meeting when they would discuss how my sister fitted the criteria for CC. This after cancelled meeting, time lapses and me chasing up the powers that be.

I went yesterday, I think I now have a greater understanding of the system thanks to the patience of the social worker and the nurse assessor. (They were good) They make their assessment as to the patient's condition as on that day NOT how they are going to be next week, next month . We all know that this disease gets worse over time but that does not come into the equation . We went through this long form and my sister was scored on how she performed (for the want of a better word) as of now. Cognitive, communication, movement, continence, mood, feeding etc. She was scored either low, moderate or high. Most of her scores were moderate or low despite the fact that she has lost speech, peg fed,has to be hoisted, and is in the advanced stages of PSP. They knew she was terminally ill but you still have to fit the criteria they work within. I have no hopes my sister will get CC but I should have decision in 1-2 weeks. It is just a lousy system but we have to battle again and again till you either get it or it is too late. I can re-apply should there be any changes in her condition which we all know there will be and go through the whole thing again. Boy you need stamina for all the red tape!

Hang in there everyone and keep smiling someone might win


9 Replies

Thanks for sharing the info Maeve.

I can't believe that your sister was scored mostly moderate or low. How much worse would someone have to be to get CC, it's crazy! You sound tough so hang in there girl!!!

Take care



Dear Maeve,

I too went through a very similar process for my partner Derek on 31st August. We were told that the nurse assessor would be in touch the following week to see if there was anything else I wanted to add and that we would hear within two weeks but if not, gave me a telephone number to call. Sadly, neither of these events took place and as of this moment, we are still awaiting a decision. This has made me very angry as despite numerous phone calls, I haven't been able speak to a person directly and they never call back if you leave a number. My only communication with them has been through our marvellous Community Matron who somehow gets them to call me.

Whilst awaiting the decision I decided to read the National Framework for implementing "consistency" on a national basis, please have a read, it's a lot to wade through.

Item 29 specifically mentions progressive conditions. It says "It is also important that deterioration should be taken into consideration when determining eligibility, including where deterioration might reasonably regarded as likely in the near future. This can be reflected in several ways.

* Where it is considered that deterioration can reasonably anticipated to occur before the next planned review, this should be documented and taken into consideration. This could result in immediate eligibility for NHS Continuing healthcare (ie before deterioration has actually occurred). "

There are a few other scenarios, all of which are pertinent to PSP, therefore what they have told us about our loved ones condition being assessed on the day only is wrong according to this document.

Item 84 says from Checklist to a funding decision should take no less than 28 days - some hopes!

Subsequent to the assessment, Derek has spent 4 separate days in A&E with medical emergencies, several out of hours GP calls, numerous District Nurse call outs throughout the day and night and is at present in MAU due to worsening PSP related symptoms, how can they say his needs are not "medical".

Enough of that rant. Good luck to you and everyone else applying - it's still a postcode lottery!



Hi Jan

Thanks for the information it will be of great help when I apply for my mum which will be very soon. Sorry you have had such an ordeal and I hope that you get the cc which you are undoubtably entitled to. Norma


we are just looking through our draft decision making tool that has been completed by our CHC assessor. We were a little worried as she gave mum a lot of chance ot speak for herself which is lovely but according to mum she could do everything bar fly! Fortunately a lot of that was not relevant but she did seem to be mainly concerned with whether mum was depressed, aggressive, tearful, likely to leave the building etc. As the care home had a gap in their paperwork between the residential and nursing block some evidence of falls was missing and it looks as if she doesn't fall any more! I have asked them to write in each time mum makes a feasible attempt and this happens daily , proving there is still a risk. I really think the fulctuations and terminal basis should be considered but of course this didn't come up in conversation!

Have sent a scanned copy to my PSP advisor to see if she can suggest what comments would help us. We have to comment and return for the panel to this space!


Further to above, our PSP advisor is emailing the CHC team to press across several points, one of the most important being that an infection or fall can tip pwPSP into end stage. She was able to bring up other important points too and we are crossing our fingers for the time being. I would definitely recommend all of you getting your advisors on board with this. It is worth taking a week or so longer to get this right than having to reapply all over again in a few months.Meanwhile literally as soon as the CHC team left the building mum went downhill and into a UTI by the end of that week. Once again she came back on the antibiotics but still very tired all the time and everything is a huge effort including eating her dinner.


Well the CHC has been turned down on the 14th November but they hadn't sent the paperwork. I got an apology for the delay in letting us know but not for not helping us! They were interested in the fact that mum has been worse since they came and suggested a review. I wonder if anyone has considered suing the CHC to get what they are entitled to? Bearing in mind an infection or fall could tip someone (especially a 77 year old) into end stage you wonder how long they intend to leave it?


thanks for sharing this info and I wish you the best of luck with your plight. Good job you are a strong person to handle it all. I have taken it all on board for when I make a claim for my mum.


hi all

i gathe rthe social worker has ot have an input too

any help from gp etc is necssary

lol JIll



It seems to vary- but the social worker who turned up for our meeting had never met mum and knew absolutely nothing about PSP! She checked the finances were ok and that we were getting all the help we should do eg attendance allowance , pensions etc.


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