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.