Carers can

Where's the menu - where's the beef ?

"think clearly, and do not hope" Camus ......

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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.
For another - they - in the middle of their illness - cannot recall it and describe it, in the detail necessary to reveal information critical to forming a judgment.

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,
If not satisfied they will will ask carer.
Not so 'confidentiality and trust building' means they may not ask to hear from you separately. see [ excuses ] Not knowing that the interview may not be so forthcoming, the observer/carer has not prepared and carried into interview what they could otherwise have registered, remembered, and recorded the actual observations seen, nor the actual words spoken, that indicate, convincingly, active illness is present..
A consultant, or other crucial authority that can intervene - usually the Approved Mental Health person [AMHP ] who does not or cannot or will not ask for the observations of observer of behaviour in between interviews does not have the ability to come to a sound judgement.

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
Insist what you tell is confidential to be kept within the team for the care of the patient, and given because they 'need to know'.
You do not want 'them' to tell or let slip where the information has come from, because of recrimination, or even retaliation, on you, from the family patient you are caring for.
Put it in writing and send it in, before the patient presents to whomever, the patient is to see - to both the family doctor, but also the doctor in the team that the patient is referred to.

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: -
1.
If the diagnosis has not been made - to ask for the working diagnosis

2.
To ask when the first CPA needs assessment will be started.

3.
Those with a diagnosis or a possible diagnosis of schizophrenia should ask that the recommendation of the chief Mental Health Advisor ( Professor Louis Appleby ) be followed:-
'all those people who suffer from schizophrenia should be on the top level of the Care programme Approach'
... that is, the enhanced or 'complex grade'of the CPA.

4.
Then carers should insist that, where there is residual illness, there should be put into 'needs assessment' in the aftercare Care Plan
...... a weekly schedule of meaningful activity or useful occupation so that on at least three days a week, the patient is accompanied to somewhere, on a regular basis, where there is something to do which is useful, conviviial company to be with and a sheltering, within which there is something to do which provides a personal interest, gives purpose and might lead to hopeful future aim and direction for the patient

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'.

6.
If such a programme is not available then you make sure it is registered as an 'unmet need' - and all those with unmet needs published by the delivering Trust. They should be compensated for in some way.

7.
During aftercare you must make sure the carer will be/is provided with their own route into the local mental health team, preferably the social worker in the team, so that matters of moment and observation can be made to the team, in urgency or at the regular review; whilst letting the patient preserve and protect their own team contact
Make the social worker in the team your ally, your route in for the information you want to get into the heads of the mental health team. Ask who they are at the first opportunity and get to see them, get them on your side, giving them the background story so that they can feed that into the after care needs programme.

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.
Don't forget - go back to the top - collect your supporters).
If there aren't any - find them, get out and find some.

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