PSP Association
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Continuing Care Saga

Hi Everyone,

Thanks for all your blogs , the support and encouragement. WELL, not good news. The social worker? interviewed my sister and she started to fill in this form. Was asking all these questions and ticking various boxes when I pointed out that we had been through all this back in May/June. We were looking for a decision. Where upon she looked confused and said she had come to do an assessment to see if my sister still qualified for the nursing part of her fees to be paid (£108) per week. I then informed her that we were waiting for a decision for CC. She could not understand why we had not been informed or what the decision was but promised she would add a note to her forms asking for this to be expedited. The outcome is, my sister is still entitled to the nursing care allowance, does not take a genius to see that given her worsening condition. So everyone watch this space, once more the battle continues.


6 Replies

Will watch with interest . Everything is a learning curve , God luck ..


How frustrating - hope you get some good news soon



Thats about as good as my experience with social workers. It's all constantly happening too little too late and if the Drs and consultants and nurses dont understand PSP what chance do we have of social workers or DHSS or anyone else understanding it?Even mum's attendance allowance increase was postponed for 6 months!

Good luck


had the assessment today, we too found out it was just another repeat of the original box ticking exercise done in the hospital and it needs to be typed up, commented on by us and then returned in order to go to the panel. The assessor refreshingly knew about PSP and was very good with mum but although it is not her decision when pressed she thinks it might not make CHC. They asked mum if she can brush her own hair, clean her teeth, wash herself and bless her mum thinks she can but actually she only makes very slight ineffectual movements to do so and thinks it is fine. We hadn't the heart to say so in front of mum and although it is only a small part of the questionning it doesn't help Mum's case! They also told ne to get onto the DHSS about the AA and point out that mum is self funding as it should mean they will payout sooner. It's not what you know..........


Dear Maeve,

Do you feel like screaming and banging you head against a brick wall??? ;-) One day all these different departments will try talking to each other and see if they can join up the dots! Until that day I guess we just have to keep shouting and fighting for the help and support our loved ones deserve!

Stay strong!!


Kathy x


hi maeve

i asked the social worker about CC when 1st dixd but she said i was not bad enough and has now (since jan 2012 ) signed me off as stable!!

i am pretty sure i have hte slow sor tof PSP htank goodness but stability is a short term thing

so GOOD LUCK wiht your fight

LOl JIll



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