PSP Association

helping PSPA to develop a Model snd Standards of Care

helping PSPA  to develop a Model snd  Standards  of Care

I'm taking part in a PSPA initiative to develop for all PROFESSIONALS ie GPs/


F CARE 4 patients with psp detailing the likely problems as it is a progresssvie disease

PLUS A PATHWAY MODEL detailing the various stages of psp to end of life

it is crucial that more awareness is made about PSP as so few professionals have heard of it and do not give the necessary support

it will be so worthwhile to have a real set of informaiton for the professionals for this disease which is a little known one in the professional worls and certainly not understood well at all

so great that the PSPA are doing so much in this field

OUR organisaiton is for OUR problems both carers and patients

TAI CHI in photo

love jill

5 Replies

Well said Jill, you speak and act for all of us - thank you.


Hi Jill

I am also helping with the care pathway model :-) It's so good to feel that you are helping future PSP sufferers and their family to (hopefully) have a smoother journey and have access to the care,information and support they need, isn't it? I actually feel that I am doing something positive at last!

Lovely photo!!! :-)

Love Kathy


hi kathy

good that u f rom a carer's' ;point of view are lookign at the infor too

It is cerrtiainly needed

I have found it so difficul not getging a response from anuypne be ti social worker SALT OT P;hysio - they all leave you to it ..

I am not sure about the timescale wjhicjh seems so individiual to each case

but it is better to be prepared in advance for any deterioraion etc

(I sitll ahve power of attorney to sort out !)

love jill


Hi Jillann (again)

Good luck with what you are doing. I too believe that professionals need to know more about it and be provided with information that will help them support people with this terrible condition.

As they say in Oldham 'If you need owt, give us a shout! Roughly translated if there is anything I can do I am only a blog away :)

Lesley x


Great news Jill, such a worthy project, thank you so much for your hard work depsite your own difficulties, you are an inspiration to us all.

Keep us informed how it is going, and if we can help

Clara XX


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