'Wishful thinking is the enemy of truth '

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

What should carers do - should have done - to protect their family members especially those suffering from schizophrenia!

If your family sufferer with continuing need for care is with the NHS primary care system only [ the GP based service ] you are unlikely to get any help with aftercare relief.
Very few Gp's will exercise their authority and tell the patient they must find something to do on a regular basis. They have no access to any such aftercare service. You must ensure your family member is taken into the secondary specialist mental health care system that supplied by your local Mental Health Trust, and if he/she remains unable to fend for themselves, then they remain with the Mental Helath Trust, and are not discharged ... 'we have nothing else to offer' .. they won't take up what we offer' .. there is nothing else we can do' ... THERE IS ... even if it is only continuing their 'authority'.

But more than that, they must follow the guidance in the Care Programme Approach. [ CPA ]
That is the NHS Standard for the delivery of secondary mental health treatment and care, it's rules of guidance are to be followed and met.

So, study them.

It is therefore, for you to watch it in action , and see to it, that it is up to making provision and delivering for aftercare, if and when continuing care is expected, for the illnesss has not recovered enough for the ill person to look after themselves.

Then, you will be expected to carry that burden, and so you must consider and state your requirements through the Care programme Approach , before you accept that the care is turned over to you. returned to you

The Department of Health summarised good specialist mental health aftercare practice under this Care Programme Approach [CPA } heading,
circulated it to local mental health Management in 1992 ! , and made it the keystone - the paradigm - of future good mental health NHS service.

It formalised what had been previously good practice
It required team work,especially between health care and social care after discharge , and therefore a multi-disciplinary participation in care decisions.

The recent change is to say that only those counted as serious and enduring mental illness get registered as CPA candidates. By implication the others are - others - ill defined. They are liable to be parted from the specialist Mental Health teams, shunted off to the GP service, discharged from specialist contact. That is likely to fail in support, for long-term sufferers from schizophrenia, who will resist such contact, and just drop out of review. Family carers and landlords are then left to get on with it. as best they can,

But the CPA schedule remains the guidance rule for all delivering service from the secondary specialist mental health service; that is, the service given to you by your local Mental Health Trust

So, how do you work the system.

There are four key elements that make up the CPA process:-

Needs assessment;
Care plan;
Keyworker ( now called Care Co-ordinator );
Regular Review

The Care Programme Approach [ CPA ]

STAGE 1. first - a NEEDS ASSESSMENT;this starts at the first contact with the secondary specialist Mental Health Teams - whether as out-patient, or a visit from a member of the team, or an admission to a ward: the speciliat service thinks and decides what are the family patient Health NHS and Social needs, now when seen, and for their future.
The better Mental Health Trusts have a 'core' assesment which includes carer assessment with patient need assessment in aftercare.

!!! - This first assessment stage is where carers of schizophrenia must put their oar in, insist and demand information about what is intended as the aftercare programme from them !!!
Request immediately on first contact ask for a Carer assessment
Where there is going to be continuing illness needing care, there is to be in the Care Plan - the next stage of the CPA - in place, in writing, an undertaking to set up a weekly programme of three mornings or afternoons - three sessions - out of the ten the five day week, when the family patient is at some, out of the home, activity: meaningful and regular, secured, activity 'breaks in the week ' - educational, training; sheltered work; interest groups- artwork music fabric handling, domestic cooking, hobby interests, something of this kind which provides occupation for the one in continuing care, and which gives you assured times in the week when you have a life of your own.
Until it is in place, the eventual Care Plan MUST record and document it, as an, as yet NEED UNMET.
The Trust delivering the care MUST collect these unmet care plans and publish them in some way, must tell the people who must commission for the priority in the National Standard Framework for mental health in their funding distribution - the Cornwall Primary CareTrust must receive the UNMET NEEDS - to decide their management funding decisions.

a CARE PLAN for the future - based on that assessment. Until your need for 'breaks in the week' are recorded, until you have hador ask for a Carer assessment your Carer Assessment , it is wise, not to have the patient home.
You will have no leverage, if you ask later

a Keyworker ( now called CARE CO-ORDINATOR ) to see to it that the Care Plan comes about' They should be viting to see that progress is being made ;

REGULAR REVIEW by the Community Mental Health team called up by the CareCo-ordinator - properly after updating with the family carer
This is your second opportunity to intervene with your views!! What do you think of the success in care delivery, so far.
If you are shut out, write your views in to the local mental health team manager, to the team consultant psyschiatrist. If not given a response, th route to cpmplain is to address theChief Executive of the local Mental Health Trust directly. Try the local PALS first - they are there for patients, but may advise you

The government set up a team of experts to describe what the Care Programme Approach means for NHS and for LA Social Services The requirements are in a booklet { 10 ' Building Bridges' ] For Unmet Needs this is the extract which carers must think about'

the extract shown - its the CARER way in - if needs are not available they should be registered as an UNMET NEED - the need is a benefit which could be supplied but has not been - to be reviewed - a register of unmet needs then goes -to the local Primary Care Trust for the future funding to commission the UNMET NEEDS.

If the NEED is not MET then a sufferer ( one on legal aid ) may be able to legally challenge the lack of provision. The provision has not met ' the needs' of the sufferer.

After all,the government directive in the National Standards Framework for mental health is still ... the needs of the severely ill, first.

and here is their picture of what is expected.

from the 'The Journey to Recovery' -
The Government's vision of mental health care

Whole systems
a gloss on National Standards Framework for mental health
page 13 at bottom....

" By March 2002, the written care plan for those people on the enhanced Care Programme Approach must[ MUST ] show plans to secure:

There you are ... If there is none on a regular basis activity outside the care base which provides both ou and sufferer space and time for a life of their own. THIS IS AN UNMET NEED _ GET IT REGISTERED with the delivery trust - this is your local specialist secondary mental health Trust - and with the funding Authority - this is your local Pimary Care Trust - QUOTING THIS GOVERNMENT INSTRUCTION

adequate housing
appropriate entitlement to welfare benefits
By March 2004, this requirement will apply to everyone on Care programme "

Approach.PUBLISHED 2001

The circular announcing the Care Programme Approach went round the Local Health Authorities in 1992.
At the same time special funding went to LA Social Services to help with community aftercare activities and placements, for those still being with the specialist mental health service.

In Cornwall CPA was not in proper working practice by the year 2000, and nobody in charge knew that.

CPA was supposed to summarise best practice as it was.

Needs that were not met were supposed to be recorded,and eventually gathered together and remedied. That never happened.
Unmet needs remained that way.
Patients left the first in-patient admission appraisal with nothing useful to do, nothing interesting to take part in, no convivial people to be with; no future 'holding up' programme of regular weekly schedules and daily programmes of attending meaningful activities, which would have brought them into an anchoring structure and given them a future direction and a future hope.
Community staff visited, often did not see the family carer, and failed to get their viewpoint of what had happened 'in-between' professional visits

Well, what should carers do; what should they have done?? If they have lost the opportunity of taking part in the first Care programme needs assessment then they should ask for a Carer assessment and in that interview put in the same request for meaningful breaks - two or three sessions a week of activities outside the home , that your family member can take part in appropriate to his general experience so far, and to his level of qualification. If not available ask that they go down as Unmet Needs in the 'needs assessment section of the Care Programme Approach.
Psychiatric guidance is that face to face time with sufferers from schizophrenia within the family should be reduced - as TREATMENT by such 'breaks'.

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