PSP Association
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Continuing Care

Hi Kay,

This is my understanding of the situation. If Frank is in a nursing home/care home and is receiving help with dressing/feeding. toileting etc he is entitled to Nursing Needs Allowance and the home should automatically apply for this to the PCT. This money is paid directly to the home and should be deducted from the fees (if you pay) If you have a social worker contact her/him and dont be put off or side tracked. You have to shout loud and long. Mention CC and say you want to apply for this for Frank. Enlist anyone who will listen hospice social worker, doctors, community nurses. You need everyone to fight your case. The application form is long and you are awarded points for certain things concerning Frank's present condition. If you dont get enough points to qualify this time you can re-apply in (I think 3 months) and go through the whole process again. Phew!! We are still waiting for the answer - it will be soon time to re-apply!! Best of luck. It is true who shouts loudest gets , which should never be. The professionals know or should know that this disease gets worse and what the implications concerning care are.

Hang in there


5 Replies

Thank you so much for that Maeve, I have rung them (NHS CC) and was told to get the care home to request an assessment. I will now put my request in writing, to care home manager. Will let you know how I get on.


I believe you can also get continuing care allowance if the patient stays in his or her own home . It's a subject I am sure is at the back of most of our minds



If anyone would like to see a copy of the form that has to be completed re NHS Continuing Health Care, ie where the NHS fund the care then please let me know, as I have a copy that I can email out.

If you would like a copy though, as I can't send attachments via here, please email me on

It's a useful form as it "prepares" you for the types of assessment and criteria that you need to meet in order to stand a chance to qualify for it.

My very best wishes to anyone who has to apply for this, for my own circumstances my husband's form was completed, we were due to meet for a MDT meeting, then it was going to the NHS panel, but my husband sadly passed away just a few days before it all took place.

Kindest regards to you all.



Hi Everyone,

In my experience you need to put the emphasis on the 'falling' and 'reckless behaviour' as these score much higher on the list - apparently choking half to death doesn't really score very high! You can get help from CHC for Care Homes, Nursing Homes and At Home. I managed to get 'One to One' care for an few hours each day for my stepdad - based on his falling (which is called as high priority). Get as many healthcare professionals involved as possible, PNS, PSP Nurse, Clinical Psychologist, SLT, Physio, GP, Care Home Staff ..... indeed anyone you can get on your side!

Think long term, apply early and keep re-applying until they say YES - you are entitled to it.

Good luck



I feel so strongly about the CHC situation. PSP is such a complex condition and yet we all have this mountain to climb to get what our loved ones are entitled to. Surely if you are unable to walk, talk, swallow, and need carers to wash and dress you there should be no question whether you get CHC. My husband has had this disease for over 10 yrs and was awarded CHC a year ago. It is still not plain sailing the battles go on . Promises are made re respite , equipment etc but take weeks and sometimes months for approval. However we are fortunate compared to some of you out there. I think the only way forward is to ask your local MP to take up your case if enough of us do this eventually things might change. Good luck and keep strong!


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