The Patient Journey into schizophrenia Six out of ten people with schizophrenia will not get well; two out of ten will make a workable recovery within limits. 1. The illness is coming. Much of it can be seen as behaviour which is a change, puzzling, not usual for them - not down to street drugs.. But how much does the family member recognise and say that they feel ill. To be able to be persuaded to see the famly doctor. The first work is find some common ground with what is now a potential patient, so that they can accept that seeing the doctor is usual with what is happening ? Unlike physical illness the eventual patient may/will not recognise, will not want to know and not accept that a mental illness can bring about what they are experiencing, nor acknowledge, sometimes ever acknowledge, that the disadvantageous condition they are in, is a mental illness. They may, however, accept ... 'undue tiredness' or just accept that seeing the family doctor is worthwhile. Somehow, living with the family, the family will find some some way of getting the GP involved. Maybe seeing the GP on your own first But, in any case ... 'patient to be' is not likely to describe - indeed may not be able to recall - because of the fault in the illness - their behaviour, and what they complained about in the beginning. They may not tell the GP in the surgery about all that has happened, nor all that they have felt to be wrong Suppose they get to the GP. What next ? GP will certainly want to know if there is any pointer to 'street drugs' 2. The family doctor involvement: this is Primary Care - the non-specialist care. Will they allow time to see CARER separately ? Unlikely. Anticipate this and write - before the patient [ family sufferer ] attends, with what you have seen and observed as 'not right'. Make sure this is taken as in confidence - you do not want recrimination, even reprisals. Far better that any subsequent engament by you can be clearly stated to be following what the family doctor has advised. It is of crucial importance that the GP learns and acts from your observations - your family patient will/may not disclose the recent behaviour if abnormal, because he/she will not recall it. If you see the GP yourself - get registered with the sufferer's notes that you are the potentially continuing carer; ask for the diagnosis - the name of the potential illness - at least a working diagnosis of what the most serious illness there may be, and what to watch out for. The GP may decide to go ahead and try themselves and prescribe something . Most do not have the system, nor the experience, to carry out supervision of long term care and treatment. Generally, they will pass on anything that might be a continuing longterm illness, and threatening to be a serious mental illness, as a referral to the Secondary specialist mental health service through the Mental Health Trust Community Mental Health Team [CMHT] - because of the possibility of schizophrenia The patient should be referred and connected with an accompanying letter, to the secondary specialist mental health service Team , run by the local Mental Health Trust staff, because they provide the service that delivers for full time, continuing contact and continuing NHS care. 3. Referral to the Secondary service A representative of the Secondary NHS menatl health service service, a member of a local community specialist Mental Health Trust team [CMHT] , will meet with the patient - where will depend: it may well be in the home, and will decide whether to take on the future care, or will return the patient to the GP practice. They will make a preliminary interview They will follow the Care Programme Approach [ CPA .. the flow chart that all secondary service must follow ] and make a first assessment of need - the Needs Assessment is a first stage of the CPA The first option .It may be they decide there is no need for the specialist team, and return the 'patient' to the GP.   The second option.The patient is taken on by the team first contact as a secondary specialist mental health patient in need of continuing care by them If the representative of the CMHT does take on the case themselves, acting on their own, they should only be authorised to do so, by a decision of the whole team, the first stage appreciation has been taken to the first contact team meeting, and the responsible clinical lead person working in the team, so that supervision of that represntative is active. At this point the CARER is to be registered with the Secondary service as 'the CARER'. Many decisions taken at this stage are crucial. Once in the secondary specialist service there will be continuity of care within a team. The first contact - 'the team gatekeeper' - will accept the patient for the team to take on and be responsible for making the arrangements for continuing contact. 4. In the Secondary Service Future care is led and governed the Care Programme Approach guidelines The local community team will have [ hopefully - ask about the membership ] as members:- (a) a clinical lead - a doctor who has full psychiatric experience and/or who has access to supervision by a consultant if the consultant is not actually a worker in the team, but who has laid down a protocol for being contacted. (b) a psychiatric Nurse - supervised by a nurse clinical lead, suitably qualified by grade. ( c ) a Social worker again of suitable qualification and graded in experience . ( d ) An occupational staff member; a psychologist The team conducts a ....Care Programm Approach system; That is 1. A Needs Assessment - this will await some time to see how well the patient is going to be after initial treatment - but you must have learnt how to intervene at this early stage - you Need to Know what is going to be expected of you. What after care they are going to be able to deliver. In residual illness disability is there going to be an aftercare service able to provide for a framework of activities during the week that will give cared-for a routine outside the home, and therefore a regular time when you can plan the life of your own. You have to ask about this right at the beginning. If aftercare, in detail like that, is not in the NEEDs Assessmnment stage - you will not get it They should be recording any Needs that are wanted but unmet ... not able to be supplied in aftercare in the subsequent Care Plan [ i.e.what is desirable and needed to give you a life of your own !!! ] that are not available now - registering the lack as a Service Deficiency. [ There is a Standard Form available to staff to record whenever and where they find a Service Deficiency ] The basic aftercare service required is an active outreach service with experience and links to local aftercare rehabilitation . 2. A Care Plan to meet these needs. Where there is continuing illness of some degree, there will be continuingHealth Care rehabilitation needs 3. A person in the Team who will be named as the Care Co-ordinator of what is needed in the Plan. Your contact - get the tel no. The Care co-ordinator will be responsible for contacts - get their tel no.- and for 4. regular Reviews of the progress - or lack of it - listed in the Plan. No shared help - get it registered with GP, Local Mental Health Trust delivering the care and local Primary Care Trust as UNMET NEEDS 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, for how long.	10 20 30 40 50 60 70 80 90 100 110	a success story 3 But this is what can happen if left or this The Family Carer and the Journey You will have to be very busy, very early on, and very active in search of local caring experience of what actually can be provided, to bring against the level of your future caring that you will have to decide about. 1. The family carer - not yet a recognised Carer - will recognise something is wrong; there is a change for the worse, oddities i beahviour and talk and in writing, and that it is a matter for the family doctor to advise about what has come to be 'illness' recognised by the family, but who may not be able to get the family member to the family doctor. The patient 'to be' may agree there is a feeling of something wrong with me, but does not see it a a matter or a doctor - they deal with physical matters. It may be that the practice has a mental health nurse, om detachment from the specialist service who will hear the story and advise. Family may make an appointment to see the family doctor on their own behalf, after first writing an outline letter, listing what has been observed, and discuss what can next be done, making clear the vulnerability of the family if the source of information might lead to recrimination. Documentation is absolutely crucial with detailed description of the strange change in behaviour with clear examples, and with records of the actual oddities in conversation. Family must not wait thinking that in an interview professional staff can discover illness and its extent - they can't. Keep a diaryof them: they are difficult to recollect being out of the ordinary for you. but be on the guard about breech of the information you give, getting an absolute guarantee against disclosure which might get back to the family sufferer, not just by the one who receives the information, but by anyone they reveal it to, and discuss it with. Recrimination is common from sufferer and sometimes other family members The documentation prevents subsequent revision and down grading of what is this most serious of the serious mental illnesses. Your observations and that of others in the community are vital to a proper professional judgement as to what to do next, and then for the future caring journey. Family will be asked to be clear about 'street drugs'. The GP may talk to the local area community mental health team, about some form of visit It may be possible for the extended family pressure to negotiate the first GP appointment, one of them going with the reluctant patient rather than the family at home, who may by now be arguing with each other. It may be possible to get a GP appointment on different 'physical' grounds, but for the GP to have been first told of the behaviour by the family representative.- sometimes by letter , sometimes directly. at an appointment for themselves. 2. The GP involvement If so, carer needs to know the diagnosis - what condition is the treatment for. What they are getting into. At a very early stage carer has to be recognised as part of the treatment regime - it is being done and continued in their house - and they should request to be kept informed and involved in any changes, and have an immediate entry to professional companionship - just as a nurse would be available on a Ward. Labelling is necessary, because illnesses have their own ways of expression. Vague terms like 'depression' are OK with non specific medication., to see a patient through a self limiting complaint But when powerful medications, like the ssri drugs [ [Prozac , Seroxat etc ] , or medications against schizophrenia are being prescribed by a GP there has to be some system of monitoring , some continuing GP practice supervision system is required, which has the expertise to do that. That is unlikely.             3. Referral to the Secondary Specialist mental health service They should also interview you separately     First Option return to the GP and no further contact with the secondary service.Then, ask that an immediate letter describing the foundation for that decision, with further advice , must go straight away to the GP, who will have the responsibility for care in the future. Included in that letter should be the situation of the carer, with a direct line of access from the GP to the secondary mental health service, if f later on the illness declares itself more clearly. If you are still worried ask for a contact tel no contact access to the local Community Mental Health Team [ CMHT ] , for the carer if they see trouble arising. The patient and the carer should make an appointment to see the GP together or separately as soon as can be arranged.   The second option; taken on by the secondary service Carers, at first contact with the secondary service, need to get themselves registered with who ever is the first contact with the secondary service as the CARER. Make sure this is documented and confirm that this is done.   You must make clear to the secondary service at this first stage of the Care Programme Approach [ CPA ] stage, that you want to be recognised and registered as the potential chief partner in care, and so will have your own caring needs that will have to be considered as part of the first [ Needs Assessment ] stage of the CPA If the secondary service expects you to have the prospective patient continue in your care - then the sufferer is dependent upon you being able to cope   4. the Secondary specialist mental health Service You must MUST participate at this first stage of the Care Programme Approach [ CPA ] If you don't then subsequent breaks that are necessary for you to keep on caring, will continue to be unmet Matters of confidentiality will have to give way to your 'need to know' as the principal carer upon whom sufferer depends. It is you who is exposed to any uncertainties in the care situation, and it is upon you that any frustration and recrimination, will fall. Make it clear at this stage that you - being the major partner in continuing care - expect to know the working diagnosis - the name of the illness that is being treated - the detail of what is going to be offered as aftercare. In particular what is the secondary specialist service offering as aftercare; particularly the 'breaks within the week' that they are going to set up for your family member to have something that they will want to do away from the home; and from this , that you will have regular within the week 'breaks , predictable and certain, so that you can have a life to yourself. The Carer [ registered by the secondary service by now as the carer ] is to be involved if aftercare is to continue at Home with the CARER. And at the Care Plan stage you must register what you NEED to be able to Continue with home caring. You will not know this, because you can not know what the Mental Health Trust will be funded to deliver. But what you need is sharing continuing care. The professional service finds outside activities in the week which sufferer will take part in on a regular basis, so that they, and you, have time apart in the week on an assured regime, giving a regular weekly routine. Meaningful lives are thus available for you and the cared for. Without a hold on this routine, cared for in schizophrenia will struggle. If the NEED for this provion is not in the Care Plan - then neither you nor cared for will get it, and eventually 'cared for' will be discharged, to GP care Only. "We have nothing further to offer ". My advice to you is, that unless they make a commitment of this kind, at the Needs Assessment stage - the first stage of contact - you need to put your oar in here - of the Care programme approach - that is at the first contact - then you do not agree to become the carer, and if sufferer is in hospital, you do not have them home. That sounds harsh but if you do not get the commitment of a service response at this early stage, the future care will be left to you - on your own. That is my experience.

Addendum:- 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 ] .