PSP Association
5,178 members7,178 posts


hi everyone fairly new to the posting lark but not to psp! what i see from the posts is that it appears that patners are not getting the suppost .if it is any help i have listed all that i have found out the hard way.

GP give them the association booklet for GP's, if they take offence change your GP. i make a double appointment every three months for rog just as a catch up, remember you are probable part of a caseload of thousands.

Community OT my best friend.

Ring adult services get both carers assessment and plan put in place in case you are ill, our worst nightmare. they will also facilitate respite, financial assessment will be done but only pts investments taken into account, also house value not used in calculation.

Get a few copies of the health and Social Care folder from the association and give one to every professional you meet.

I carry the PSP cards and give them out in A/E cos if i hear one more time 'never heard of it' i will scream.

Companion bus passes are available, you will be knocked back first time but write a letter outlining needs, the forms are too generic for this condition.

Get referred to local hospice, most have day hospitals which gives you a free day , confident care is in place.

If you do not want to move and need alterations to house apply to your local council for Disablement grant. we are having a lift put in after December, assessment is on income not savings.

Carers allowance is available to you if you have not reached pensionable age, due to recent govt changes that can be 68, it is not means tested. pt has to be in receipt of attendance allowance.

red cross hire out loads of equipment.

Pt should be referred for community physio, again through your GP.

Unions you have belonged to in the past can give financial help.

the Association have a list of specially adapted hotel and self catering accomodation.

Enquire if there is a specialist nurse in your area, usually for complex brain disease.

Keep a huge folder with everyone involved and when you see a professional give them the list and ask them to circulate to everyone on the list any new information.

tired now!

keep cheerful

julie x

9 Replies

Thanks Julie. I've found out the hard way as well but never thought of listing it down. I'm sure those not so far down this long line will find it very helpful.

Nanna B


Well summarised Julie, add get the patient PIP assessment if under 65 or Attendance Allowance if older, help in applications from CAB or local money advice centre. I also gave the PSPA explanation cards to friends and neighbours as well as medical professionals.

Thanks for useful summary. Best wishes Tim


Makes me wish I were in the UK, not for the first time!


I agree! In the U.S. and namely VA you can't have anything. Sign it all away and two years later they'll think about helping!

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Oh, dear, I almost feel apologetic about it, since so many folks on this site say they have had trouble with the VA, but here in Maine I have had nothing but good experiences with them. Once the local administrator got involved this spring, my guy was quickly okayed for assignment to a palliative care team, and we are now awash with equipment and have a crowded calendar of OT, PT and SALT. Everyone has been very helpful and kind - so far. We got a ramp installed last week.

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I also self referred mum to a continence advisory service who have been brilliant. And am currently doing the power of attorney paperwork, a sombering, tedious but sadly necessary process. and have discovered there are PSP specialist neuros in Cambridge Addenbrookes and Oxford so have asked for a referral there.


It all really sounds so great! I am keeping my fingers crossed for you.

Good luck.



Thanks for the useful tips will find them very helpful I'm sure.




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