Never forget that the 'patient' will not have told the doctor - GP or Consultant or the Consultant locum or juniors, or the Team, the stand ins - the full story. They can't. For one thing - how do they know what the other person needs to know - they are not experts.
page143 from a Homicide Inquiry.
The patient cannot, does not, remember all the happenings, the progress of the illness even at the beginning, in most cases.
Carers certainly can recall in terms of observation and from more time being there with the patient
. They don't know at the beginning of illness, what they should be recording.
The observer carer with information believes - unless told otherwise - and takes it for granted, that an assessment at interview with the 'expert' will provide the interviewer, enough about the nature and in particular the degree of illness, so as to be able to decide, what to do about it,
You, will have observed things the 'patient ' can't recall, or recount - they will reply to professionals as they think the hearer wants, and reply just to get away.
YOU MUST PUT IN THESE THINGS - IN writing - [ but not to be disclosed to patient ] OF YOUR EXPERIENCE WITH THE ILLNESS at ONSET, AND THE PROGRESS YOU HAVE OBSERVED,
And - your difficulties that have come out of coping . especially your dificulty in gaining some authority over the business of living with this illness and managing it, and the professional team practice
Put it down in writing, for when necessary, as it well might be - because you will likely find out that nobody wants to know - if in difficulty, and do this anyway at some point, ask for a Carer Assessment - an example
Remind them that you will be doing most of the caring and be most at any risk so that you do 'need to know'. Have it explained to you, what they have decided in their needs assessment and their care plan for the patient, so that you can be sure they have grasped the context of it, it is agreeable to your caring position.
If you are losing the battle - and battle it will be or will be come at some stage - Don't go into battle alone! Take a friend, an ally, another family member , a carer support worker - all four if necessary ! - with you whenever you contact a professional. Then, you are not out-gunned.
Prepare your case first - talk it over with an ally.
Talk it over with the local PALS [ a cornwall example ]
If you are writing get as many local supporters on the letter as you can
Carers - family carers, particularly when the family patient is living with you - should ask about how their views and experience are heard and recorded, as soon as possible - should use the occasion of the first Care Programme Approach decision to: -
In other words .... Where's the menu for aftercare ... where's the beef ... ' ?
5. Such an attachment to a programme by the family patient will give carers their own predictable times for their own 'breaks'.
If you are not getting this kind of service - complain - write about what you are not getting to the chief executive - pass on your concern and frustration - don't just be passive and accept what you know is wrong.
Stop being passive, and get active on behalf of your family member
Try to avoid ever going it alone. There is support somewhere - it's your job to make it and get it.
This caring job is likely to be yours fror life