Addendum:- to the care journey - having second thoughts; the illness is going to be there, at some level, forever.

Remember and think about it - that you do not know what the illness journey is going to be and how much of the illness residuum is going to be there for you to look after, and what form any difficulties are likely to be. You know nothing about the illness as to what you can expect - ask at the first contact and later of the care co-ordinator

You know nothing about the level of involvment the Team will give you in the future
Will they tell you first before giving authoritative direction to the sufferer. To see if you agree with the care journey proposed.

That you can do it. Sufferer may assume it and tell the Team so, but you can come to a different level of agreement when you know all the foreseen consequences, and meet unforeseen ones.You - the carer - will have observed more about the patient than a professional point interview examination can ever discover. The Professional may not accept this - so see .... make sure the professional knows what has been going on between appointments.

'Patient' will not have told them; they cannot remember they just want to say what they think is expected and get them out of there .

[ see a study of comparison between carer observation and professional observation ]

The second decison: you commit to being the continuing carer; the patient is taken on by the community mental health Team who will exercise their Team authority [ like this hopefully - tell sufferer that' breaks within the week' away from home on something they can and will continue to take part, is exercising proper rehabilitation, in the same way as people do after illness, or a limb break.

Note at this point that the carer has information which the professional does not have and cannot get from the sufferer, who will likely lack awarenes - insight - and will not remember illness behaviour; but, the carer does not know what information the professional needs, without the professional telling them what might be observed which is illness behaviour, asking for it, and advising them

A new CARER will assume , without any experience ( that will come ! ) that the professional is able know all from their interview with the patient, , knows when thet do not know the full picture and will ask carer for it, knows what they are doing, knows that the cared for will not disclose all, and will ask for CARER information if the professional bothers to think that the extra information is required.|
In Practice the professional examiner will not ask, and will make a judgement on the inadequate evidence they obtain at interview. They may well not see you separately..

That Practice is not in the best interests of patient, nor doctor, nor in the interests of CARER.
The spurious explanation will be 'patient confidentiality', and 'building trust' which will be forfeited if patient feels the professional is going to 'split' on the patient, to carer. Professional therfore does not get the whole story, and you won't know that.
You will think they do have all the information when they do not. Patient will often say they do not want the professional to see or contact Carer. You will not be told.

an extreme example of the family carers being shut out ...

page 143:- Blom Cooper; Robinson Inquiry ...

Carer(s), you will need to find out the working practice of the team - what meetings are held, when, and how to keep in touch actively - not waiting for the Care co-ordinator to arrange that.
Who is the replacement, contact when the care co-ordinator is absent - on course work, or on leave, on sick leave.

You are giving continuing care to some one who DEPENDS on you.

Before discharge, before the Care Plan is implemented there is the 'Needs Assessment' stage of the Care Programme Approach

They may not tell you about this. Those needs are basically about the sufferer, but what will be forgotten is that the sufferer is going to live in your care situation.
If so, you will have Needs, too. The most important one is how you are going to be able to have a life of your own; and family sufferer , a life of their own.

Into the Needs assessment, on your account, you must ask about it -it is to be put in the Needs Assessmentwhat 'breaks' there are to be during the week when you and family sufferer have 'breaks' from each other - to reduce face to face stress, criticisms, and misunderstandings, and to develop a meaningful life for both carer and family sufferer, regularly, predicatably, safely, and securedly [ say, at the least, on three sessions [ morning/afternoons per week out of the ten session week . Your going on caring is predicated on this kind of 'breaks during the week' being achieved. That means educational guidance and access, sheltered work, interest activities for sufferer; time to yourself as carer. Those breaks do not mean you have to convince, prepare and transport sufferer on these activities - it is for the Professional to use the clinical Authority to indicate this to family sufferer, as a necessary part of Recovery - the professional to arrange this ' breaks in caring during the week ' . If they are not obtained, not available due to lack of resource - then professional to declare them to the managers of the mental health Trust and the NHS local funding commissioner Primary Care Trust as

UNMET NEEDS

as SERVICE DEFICIENCES - there are Forms for this in each Mental Health Trust team

You are into Partnership in Care.

They say that.

Do not think this is an equal partnership.
You will be in caring contact all the time, day in, week in, year in, quite likely for life - - professional contact will be brief , infrequent and maybe irregular , and cancelled when 'they' go sick [ not you ] or on leave and no substitute arrangement is made [ staff shortages - underfunding ] .

get in touch immediately with the Care Co-ordinator - they will have a mobile phone; ask for their number - your concern is immediate and now !!

If unsatisfactory

If out of hours ring the switchboard of the local admission ward service - they will know who is the on call team responder./

If obstructed - Request a Carer Assessment at once.

if unsatisfactory talk to the local PALS the Trusr switchboard will have it - maybe - but ask for it before you need it .

Make an appointment with the GP and express your concerns in letter to them.

Put your concerns in writing, and send the letter to the Consultant lead Office, mentioing that you have copied it to the family doctor, and making an appointment to see the GP .
If you are sceptical of any response being satisfactory, to the Chief Executive of the local mental health Trust.

..... or if there is apprehension of threat, there are different decisions to be made. You cannot be criticised for overreacting - over react ! repeatedly.

I f you feel you are at risk, get suitable protective companionship to be with you;
and/or leave temporarily, having stated your position, to Care Co-ordinator - through the contact tel. no. given to you, telephone from outside the home,
- or using the emegency procedure given you.
If the response is not adequate and immediate or in any case if the threat is immediate ... and you feel danger ,
get out of the way, ring on a different telephone, the emergency tel no for a police response. Request that an Approved Social worker [ now an Approved Mental Healtn Person: AMHP ] make an assessment of the patient regarding the grounds for action under the Mental Health Act i.e. With empowerment to intervene.

go to the next page of general links

Something is wrong with the family member. ... A change to odd behaviour becoming persistent.

a good ' insider' website:- pamshouse: a guide for carers