Three government NHS commitments that point the way into carers obtaining the after-care for those with continuing schizophrenia

1. The Care programme Approach

2. The Journey to Recovery

3. The National Standards Framework NSF for mental health.

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1. Mental health NHS service care is directed by this government requirement, since 1994, called

The Care Programme Approach [ CPA }

If this approach is not followed, the standard of proper Care is not being delivered.

Four components to the CPA.

(a) Needs Assessment -
the first and deciding moment on the care journey. What is being set out here is
what is necessary to be put in place following the first contact with the local specialist mental health service.

If it is not in the Needs Assessment stage it will not be in the next stage - the Care Plan for aftercare

To be sought from you and set out at this stage is what is NEEDED by you, the carer , for social and health support after the first contact and any return to your care; especially you must ask to see in the Plan what 'breaks' in the week' will be permanently assured to you and the family patient so that you can get both on with some separate lives.

If it is not in the Needs Assessment you will not get it !!!

(b) a Care Plan
To put in place, what has been decided at the Needs Assessment first stage will be required in the follow on care.

(c) a Care Co-ordinator
the representative of the team that will be making sure the Care Plan is ahieved and maintained.

(d) a Review.
The care co-ordinator calls a regular team review to see what continues to be needed.

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2.

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 [ that's now down to the equivalent - the new single CPA ] Care Programme Approach must [ MUST ] show plans to secure

(i)

suitable employment OR OTHER OCCUPATIONAL ACTIVITY

(ii)

adequate housing

(iii)

appropriate entitlement to welfare benefits

By March 2004, this requirement will apply to everyone on Care Programme Approach

There you are ... If there is no regular basis of engagement - no occupational therapist [ OT ] at your day centres for example - in purposeful activity outside the care base, which provides both you, the carer, and sufferer, space and time for a life of their own.
then That IS AN UNMET NEED _ GET IT REGISTERED with the delivery trust - they have Service Deficiency Forms to register this, ask about it ! - badger the local Consultant and Team members to fill it out - that is to your local specialist NHS Mental Health Trust - and the funding Authority - this is your local NHS Primary Care Trust - might soon be the local GP's - QUOTING the instruction in the Journey to Recovery.

.PUBLISHED 2001

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3.

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In the government National Standards Framework [NSF ]this statement for mental health funding - in 1998 ; on page 4 of the 'Executive Summary' : para 2 line 5 '' New investment and re-investment of existing resources will need to be prioritised, recognising that mental health services are whole systems, which work effectively only when the component parts are all in place and in balance. In many areas the first priority will continue to be addressing gaps in current services for people with severe and enduring mental illness: 24 hour staffed accommodation, assertive out reach, home treatment or secure beds for example. This will address issues of equity of access and safety, including public safety.
In those areas where specialist mental health services are able to meet local needs, [ Ed. ... that is where needs are UNMET they remain the priority for funding and delivery ] the most cost-effective focus will now be on people with common mental health problems '' :line 16

Statement in the National Standards Framework [NSF] for the mentally ill

" .....:- exec page 10, full framework page 30 :-
[ ….. " when Primary Care Trust might become responsible for provision of mental health services there should be continuing focus on those with severe and enduring mental illness, in line with the standards and service models in this National Standards Framework, and a commitment to joint work between health and social services " …. ]

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Unmet Needs - the way forward to obtain resource that is missing.

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Extracted from 'Building Bridges - the Care Programme Approach 'bible' -the best statement comes from - Building Bridges - [ Building Bridges: - 10£ D of H, PO box 410,Wetherby,Yorks, LS23 7LN ] still the working 'bible' for the Care Programme Approach [ - in a Q &A … p 62 - ]

Building Bridges says this :-

" Should the needs assessment meeting be held separate from the care planning meeting?
It need not be, but it is essential that in a given meeting needs assessment is separated from care-planning itself.

The former process should focus on patient's needs, irrespective of the resources available;
the latter on what care can be provided, given current resources.

The gap between the two, the services shortfalls ..... [ that is the unmet NEEDS Ed. ] ... should be recorded so that they can influence future planning

'Carers often provide the majority of care to mentally ill people.Their contribution to meeting users' needs should be explicitly recognised in the care plan

Back to Care Programme Approach

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If something that can be provided which brings benefit , but is not being delivered, then that is an unmet need.

Community Carers should get on to the delivering Trust community mental health Team at the Needs Assessment [ stage 1. ] of the Care Programme Approach ( CPA ) and/or at any subsequent Review [ stage 4. ], and ask them to put down the absence of ' regular breaks within the week' as an unmet need - a service deficiency.

[ the emphasis is mine - In other words what is not being provided should be recorded in an 'unmet needs' register
by the local Mental Health Trust. They have to give priority,
to delivering the needs of those with serious and enduring mental illnesses - the long term ill and their family carers.

The collective unmet needs then to be presented as a shortfall in service to the local Primary CareTrust
whose duty it is to commission ... i.e to require and fund what is needed
.... and copied to their supervisors - the local Strategic Health Authority,
so that they know what is not being provided by the local service to those in serious need.

Here I explain unmet needs, what they are, what is the 'official' mechanism for registering them, and the importance of doing so.

1. the NEEDS ASSESSMENT= ... an examination of what the patient needs as help to become better and stay well in treatment and social care -
This is the most important stage for family carers.
It comes at the time when you do not know much. - stick your oar in here about what is required to enable you
[ the burden will be on you ] to continue the care of a sufferer who has longterm residual illness.

They must be provided with engagement outside the home base: interest activities, sheltered work, help into education and training,
sufficiently during the week to give them a life to look forward to,
and you, the carer - the NHS partner as they say - have assured regular breaks within the week, in home caring - if that is not in the Needs Assessment it will not be provided

If it is not in the Needs Assessment you will not get it !!!

2. A Care plan to implement these needs in aftercare

3. the Care Co-ordinator... one person in the team registered so as - to see the Care plan is in place - and to see to it that the Needs Assessment is satisfied - ! !!!

4. a Review of the progress, regularly, and as circumstances require it, including those with UNMET NEEDS have it recorded as not being delivered. !!!

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'Breaks within the week'

There are three reasons why after-care activity - breaks within the week - of a regular and acceptable kind, is an essential need for the psychiatric treatment - TREATMENT - of continuing schizophrenia.

1. High EE

1.

High Expressed Emotion

Reducing the duration of face to face contact is a necessary part of treatment -a Health Need ... an NHS provision need ...Care Programme Approach TREATMENT. Carers and sufferers can then get some life of their own.
It is well recognised by psychiatry [ and by carers ] that there will be at times a high level of 'Expressed Emotion' [ EE's ]
between sufferer and carers, between sufferers and the general public;
there will be misunderstandings, argument , disagreement, confrontation, difference in viewpoint; how those are handled will lead to the kind of residual gnawing resentments and irresolution which dispose the sufferer to 'breakdown', and sometimes anger going to violence

A regular routine in the week gives sufferers stability , anchor points of interest to return to, when there is temporary uncertainty to be sorted out

'Breaks' in the week from 'face to face' exchange, allow these residual high EE's to dissipate, sufferers to have other companionship
- a life they can talk about, allows carers to breathe again, and rally with the reassurance of continuing time to them selves.

2. Disuse

The internal neuronal network that stores away experience in the brain ,
holds it to an access that is relevant to what coming up ahead, [ I will be doing this and may need to bear this and that and those people in mind ] is not always readily made available, for those suffering from schizophrenia,
particularly of the negative form, so as to to direct the sufferer away from the illness 'bits', onto some outside 'normalising' routine.

The ability to hold onto a future intent is not helped by the uncertain and often slow and inaccurate thought association.
All aggravated by long disuse when the connections to successful outside activities, events have not been made in a long time.

To regain and store away new experience, to revive old skills and memories, sheltering activities, bridging interventions, and team encoragement, accompaniment and mentoring into outside activities; are a necessary part of aftercare TREATMENT.

Those in residual handicap, have to be helped to get into outside activities, in a way which overcomes initial reluctance.
An outside ' framework' within which they can participate - an interest activity, retraining, sheltered work, assisted shopping routines -
builds up an internal store of guaranteed success, an internal 'anchoring' collection of reliable associations, from which to prepare and prime the 'inside', for the outside engagements to come in the days ahead.

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What goes wrong, and you must anticipate this, is that NHS says aftercare is a Local Authority Social Services obligation - and vice versa.
It stems from the obligation embedded in Sec 17 - the follow on from dention under sc 3 of the Mental Health Act :- those with continuing serious illness have aftercare requirements, to be decided and met jointly between LASS and NHS; nobody to be discharged form this contact, until these needs are met.

But note that compulsory provison does not apply to afterrcare following informal admission.

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3.Anxiety

Residual and continuing anxiety fuels anger and that leads to Expressions of High Emotion as above:
In the lives of those suffering from schizophrenia there is usually no routine, no regular, reliable, and repeated personal support system, no connection to an external daily and weekly framework which 'normalises', which people in regular work have.

A predictable timetable ahead in your control gives a reliable security.
It reduces uncertanty.
It lessens those anxieties down to unforeseen eventualities.

Anxiety hurts the ability in schizophrenia to assemble relevant responses.
It often [ unsettling life events ] precedes breakdown.
Ordinarily, the reliable external framework is supplied in the regularity and repetition of daily and weekly work schedules,
with the companionship that brings. Being with somebody else who is familiar reduces anxiety.
Changing personnel does the opposite.

Competitive work is beyond the capability of sufferers to seek, obtain and sustain.

What sufferers must use to contend with events and people around them is the mental assets stored in their brain.
These are varaiably disorganised: - that is their illness.
It cannot be expected that at least a mental asset which is itself ill, can mend itself

They have thus lost the faculty of engaging outside themselves which regular work brings.
As a consequence they do not have an internal memory of recent engagement on things outside, and the balance of relating to people there.
Continued disuse of this faculty aggravates the faulting disability of schizophrenia - priming inadequacy - the ability to prepare, tune in, and hold onto the necessary thought associations for oncoming action and interchange.

As continuing after-care treatment, rebuilding confidence and skill needs [ unmet Needs ] sheltering facilities wheresufferers cn try to be involved, reviving connections in their brains, to bridge the gap between illness and 'normalising'.

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The next step is to persuade Consultant psychiatrists that they should register, as UNMET NEEDS in their Mental Health Trusts the absence of a weekly programme of outside engagement on less than three sessions out of the ten session five day week [mornings; afternoons] .

What do you think about this ?

E-mail reaction is welcome click on davidwatch@btinternet.com

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Although Care Programme Approach [CPA ] is changed and now applies systematically to those whom the local mental health Trust say are serious and enduring mental illnesses, the principles apply to all mental health care.

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