PSP Association

Starting a charitable fund

Does anyone know how to go about starting a charitable/trust fund? I would like to start a fund (in my Mum's name) that would provide grants for pieces of equipment or funds towards major adaptations for people with PSP/CBD.

It makes me so angry that people who really need these aids may or may not get them depending on where they live. We've been very lucky - Mum has a super wheelchair, a riser recliner chair, bed raisers, a commode and a hoist all provided by our OT and we've been told that when the wheelchair no longer suits Mum it will be replaced, yet I know that people in a neighbouring borough cannot get a riser/recliner chair unless one is returned to stores - in which case it will be re-conditioned and re-issued on a "greatest need" basis.

It just doesn't seem fair!

Love Kathy x

4 Replies

I used to work for a charitable trust and can help you with running it, but starting up is something else altogether. The Association of Charitable Foundations might be the best place to start: try here

The Charity Commission website might also help, although it will be more general advice:

As I said, I've had experience with the grantmaking process so would be happy to help if I can. It may be worth contacting the PSP Association and running the trust through them, rather than setting yourself up as an independent charity as there is a LOT of admin and legal stuff.

Hope this helps.


Dear Idris,

Thankyou SO much, that's a great place to start! I may well take you up on your offer to this space!!!

Kathy x


Unfortunately there still seems to be a ‘postcode lottery’ in care, with people in neighbouring areas receiving very different levels of support and equipment from local services; this seems so unfair.

We have been working with healthcare specialists to develop a ‘pathway of care’ for PSP, to clarify the support and equipment that people with PSP and carers should expect to receive and to raise standards of care. This will be ready at the end of the year and is a first important step in influencing service providers for better care across the country.


Dear Helen,

I know about the pathway of care document and think it is brilliant. I was privilaged enough to be asked to comment on the draught documents. I think they will do a great job in raising awareness and improving standards of care.

However, in the current financial climate, I still think local councils will be struggling to provide what is required. There should be somewhere that people can turn to when they needa little extra help.




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