' Doctor knows best ... it's the patient choice '

Two necessities for 'some kind of recovery'

Without these, in place, or as a written down commitment from professional aftercare, in definite preparation, my advice is not to have a family sufferer at home
of course when there is a Care plan, inside which is one to put in place meaningful breaks WITHIN the Week ... then Ok. Too early an acceptance and your levcrage has gone for good !!!


You will have more influence - more clout to insist on what has to be put in place for you to continue caring - if this is going to be the outcome - by raising the question of breaks from caring during the week whilst your family member is in the hands of the professional team.

They will then feel obliged - where otherwise they will not - to put their authority with some persuasive coercion, into telling sufferer with continuing illness - that there is an aftercare imperative which they must join in with, to stay better and to get better.

A 'must' but one for which the team will deliver the resource and the personal support, to find for the sufferer .

With that relief in the form of breaks within the week, comes the break for the family carers.

If they discharge before any of this is raised you will find that the team will take thier priorities elsewhere. Why not - you will be carrying the can .

This is not cynical, it is often the reality. out of sight IS out of mind


1. Acceptable medication, maintained. A few can manage without medication - with limited lives
There is little success with acceptable medication if the people better [ not well ] after it, do not have some kind of future in life for themselves.
That leads to disappointment, emotional upsets on the way, and relapses. 'I take medication and where does it get me' ?!

2. A life outside the person; supporting a personal interest, a personal hope, giving an anchoring safe structure onto which to reconnect from wandering in thought, , a steadying and dependable routine that can be reliably there, onto which to fall back ; there in place for a settled future engagement.
A programme that rebuilds and prepares, the internal associations that will go to support the routine.

When this is not in place, You have UNMET NEED

This is what carers and charities that want services to be better, need to campaign about.

Government Strategy recognises the need. It has committed itself ... see page 13 on [ The Journey to Recovery [ = a gloss on the National Standards Framework ]
[ quoted in Unmet Needs ]

Many will relapse without this structure to 'lean on', as most ordinary people flounder without a job, or a domestic work habit; and without contact with company.
The acute stage and the care crisis, the first signs of florid illness, are quickly and are presently adequately addressed with what is needed straight away.

What is an NHS service neglect, and left unanswered in a deliberate way, has been to postpone and deny funding and service development for the after-care

Two things need to be emphasised, if not absolutely true

1.
The sine qua non - the core - of successful management is maintenance medication.

2.
The development and attachment to a safe external framework; connecting patient to outside activities on a regular basis; a daily domestic routine; a weekly life 'plan' diary of expectation, is a requirement for staying better.


Getting people to agree to lifelong mediation requires substantial appraisal of who you are talking to and their readiness to listen. There is psychotherapy in this 'purchasing agreement'.
It is often good to speak these points in the presence of the significant carer.

..... ' This is to prevent you being so ill again. If you were to be ill again, people who like you would not know what to do.. They will hesitate to be with you

So taking medication helps to safeguard the future.
A necessary precaution ... as you take with you an umbrella or an outer coat if it may come to rain or be too cold during the day.

Without the basic assurance that someone is taking medication regularly, proceeding to ask them to engage with something else is a risk - the difficulties may bring about illness behaviour.
How to get the reassurance observatiion of the number of tablets gone from the initial prescription; sometimes doing a blood or urine test - oddly, nobody bothers. The manufacturers of the NHS medication should be obliged to provide the test kit..


There is an uncertainty - since your illness people will be uncertain about you, until you have shown recovered behaviour, a steadiness with no relapses.

 :

Together, we will find medication, which works at the least dosage with the least 'side-effect trouble, that gives you the most benefit and protection from future breakdown.

How was it discovered that the tablets work?

By observation.
Doctors concerned with giving anaesthetics before operations wanted people to be calm and not anxious when awaiting an anaesthetic before operation. They therefore gave them a pre-medication. The one used traditionally was sedative and hypnotic. That meant that people that did not wake up promptly after the anaesthesia was over - they were more prone to bronchial inhalation , and coughing

Looking around for a substitute with less hangover, an antihistamine medication which had a milder sedative side-effect was tried and was found to 'tranquillise' without undue sleepiness, and waking up was easier to achieve.

It's success meant that similar preparations - phenothiazines - were tried to see if they also had a calming effect. Doctors were encouraged to use them on people who were anxious, with mental illness to prevent a breakdown, so that the anxiety was lessened without sleepiness.

Amongst these were people suffering from schizophrenia.

It was a surprising discovery that apart for some effect upon anxiety, the symptoms of this illness especially were helped.

Especially the influence of 'outside stresses' which might previously have been too much to put up with.

 

Practice and experience has shown that the medications do work. Those who continue to take them are less likely to be so ill again. Those who stop them are more likely to suffer other times when they are ill. They lose their reputation. The first and very efficacious medication was called chlorpromazine - marketed as largactil because it had a large number ofactions on diffeent working oarts of the body - of side-effects - as well as giving benefit. The side-effects limited the dosage ,and the acceptability.

Many copies and similar preparations followed, the improvements largely due to modification of the side-effects so that the medication was better accepted.

What was acceptable to some was not to others.
So that getting the right kind of medication and the right dosage was a matter of trying them out to find what suited a particular person.

How do they work in the brain.

What all seemed to have in common was an effect on a chemical messenger in the brain - dopamine - which passed betwen certain cells in the brain, an effect in certain areas, particularly.

The new knowledge is that dopamine dysregulation precedes onset, and is present in the same anatomical area and with a similar magnitude to that observed in schizophrenia. It shows once again that the dopamine dysregulation in schizophrenia is one of the most replicated and consistent findings in the field.
The area of pathology within the striatum is, as described in schizophrenia, the associative, rather than the limbic or sensorimotor striatum (Kegeles et al., 2006).

This represents the main area of projection of the DLPFC.
Furthermore, this part of the striatum receives input from other limbic cortical areas (Haber et al., 2006)
and may play a role in integrating emotions and cognition.
Alterations in this integrative function could lead to mis-attributions or mislabelings leading to paranoia or inappropriate” affect, in addition to the cognitive deficits.

these data support the role of excessive subcortical dopamine as a precursor to schizophrenia, contributing potentially to both prodromal symptoms as well as changes in cognitive function, specifically verbal fluency. Interestingly, a recent report has linked the development of language dysfunction to the onset of hallucinations, suggesting that the two are related (Defreitas et al., 2008). The authors noted that decreases in dopamine activity in associative striatum were negatively correlated with verbal fluency, whereas changes in limbic striatal activity were not. Associative striatum may regulate verbal ability via connections with the prefrontal cortex (Haber, 2003; Middleton and Strick, 2000). This study supports the idea that associative striatal inputs may regulate verbal deficits, possibly through inputs to and from prefrontal cortical regions. In their conclusions the authors noted that since all people with prodromal symptoms do not necessarily develop schizophrenia, increased striatal dopamine activity may confer a vulnerability to the onset of schizophrenia psychotic symptoms rather than indicate that a person will necessarily develop schizophrenia. In addition, Howes told SRF that, Our finding that dopamine function is dysregulated in people at risk of developing schizophrenia provides a neurobiological rationale for the use of interventions that reduce the dopamine elevation in these people; by reducing the dopamine elevation such interventions may prevent the onset of schizophrenia in vulnerable individuals.”—Alisa Woods. Reference:

each patch of prefrontal cortex will contain a population of neurons at various states of tuning that will respond differently to drug-induced or cognitively related changes in extracellular dopamine, with some improving, some decreasing their tuning. Depending on whether imaging signals and tasks are more sensitive to overall firing rate, or to specific signal-to-noise properties, the resulting blood flow change might be quite different. Perhaps this contributes to some of the puzzling discrepancies between hypo- and hyperactivation both being observed in comparable tasks and regions of prefrontal cortex in schizophrenia.
So, many other preparations which acted on that dopamine messenger were then tried out.
A standard effect, if seen from a new medication, on a particular mouse behaviour, also seemed to point to there being some power in helping schizophrenia.

Ten years along, a new success was found.
Clozapine had fewer of the old side-effects, was very efficacious - with success where other medication had failed, but came with a troublesome side-effect - reducing the white cell population in the blood, particularly those dealing with infection, but sometimes killing off the bone marrow which makes the red cells as well. The drug was withdrawn for a while but further reflection and experience put in a protocol which allowed clozapine to be used under strict blood testing control, and this allowed 70 % or so of those chosen, to be able to continue with it.

Subsequent trials have brought 'cousins' of clozapine, (olanzapine, quetiapine ) and other atypicals, ( risperidone; amisulpiride ) not as efficacious as clozapine , but without the blood troubles.

This newer lot of preparations are grouped as the Atypicals - Atypicals, in that they do not have anything like the sensitivity to the previous side-effects.
They do, however, mostly share one common one, and that is that they increase appetite. There will be big weight gain unless, a diet is restricted - not easy. In some people this can lead to such a weight gain that the late-onset type diabetes may develop.

Once a suitable preparation is found to suit a particular person, this does modify the illness and keep away relapsing troubles. Even if it is stopped, benefit will be there for up to three months- because the body - if medication has been taken for long enough, has built up a store, a store of effect, which is only slowly run down.

Because one of the features of people who relapse into schizophrenia is that of simple forgetfulness to establish a regularity in taking medication, a method of delivery of a regime was introduced which gave the medication as a deposit into a large muscle, so that medication was released slowly over the subsequent days. A depot ensured medication for the time between the intramuscular injections - for some an acceptable practice, once they had experienced the penalty of relapse from forgetting, or just discontinuing oral medication.

At the moment medication is necessary to prevent relapse and once an acceptable regime is found, many will accept , in social conscience, that they should not allow the disruptive effect of breakdown - on them, on family, and on others - to occur again.

The latest 'new' medication, introduced with the 'selling' point that it is not accompanied by weight gain - is 'Abilify' ... chemical name Aripiprazole. It is described as modifying dopamine i.e. if too much, it reduces; if , too little, it steadies dopamine back to normal ranges.
Time will tell about both efficacy and about longer term side effects.
It seems likely that it is less potent - tablet for tablet - although that is a matter of individual tablet strength, and it may be either less sedative than the ones it replaces, or it is more stimulating - wakefulness can be a aproblem
It is put out in very small tablets which are easily dropped and lost.It has passed initial trials in America. It is likely to be the starting medication in new cases, and the substitute one when a replacement is wanted.

 

Acceptable medication is the bedrock of treatment.Doctor knows best ... it's the patient choice


But help towards the resumption of an ordinary living regime of routine external application is the other

necessity

. Without a life value of some personal meaning and direction, resentment and continual frustration will lead to withdrawal from support, and from sufficient attention to continuing medication, Relapse will follow.

The UK Department of Health issues this expectation - to those on the enhanced Care Programme Approach (CPA) categories - [ in which all with schizophrenia should be, according to the National Director of mental health ( Professor Appleby in the National Confidential Enquiry into Homicide and Suicide in the UK ]

- all those on the enhanced CPA should have a plan ( only a plan! ) which includes [ the Journey to Recovery ] providing proper welfare benefits, a suitable domicile, work or occupational activities, by April 2002

The NHS Trust that is delivering treatment for the illness schizophrenia which is going to be longterm in some sort of residual disability, is not providing continuing treatment until there is in place a weekly programme of engagement with occupational activities outside the domicile.

Such a programme will give anchoring points in the diary ahead, bringing those internal networks that prepare and prime future engagement, into a revival in accessibility, so that thinking inside is ordered, gathered together in intention, and purposeful.
Unless such a programme is in place, the Care Programme Approach - which is obligatory in schizophrenia which persists - is an UNMET need in the needs assessment part of the Care Programme Approach.
It is to be documented as 'unmet' in the needs assessment - - carers should request this - as such by the Trust which is delivering care, and the unmet needs made known by that Trust to the local NHS commissioning body,so that the commissioning body is aware that it's mental health National Standards Framework priority is not being delivered.

Unfortunately, mental health funding is not protected for serious mental ill health.
It is often taken by general health to help meet the overspend deficits that the Trusts delivering general health care , and the GP service, have allowed to happen.

The aftercare service - activities that were available for many, off ward, when resident in mental hospitals, was not put in place in the community , before funding was removed and was given over to the primary GP service to help their with the milder mental health conditions, particularly the want of the worried to talk out problems with someone , but with nobody, particularly no family around, there to do that, and which the GP themselves did not want to do.
The family doctors were OK with chronic physical illness, but would not accept a part in long-term mental illnesses. They saw that for those seriouly ill and continuing so, there was no community sheltering aftercare.

Sufficient aftercare provison is not available, and remains an national unmet need.

The priority requirement in the National Standards Framework for mental health resource - the needs of those with serious and continuing illness is a current failure.

In Cornwall - who cares ..."
...as one counsellor on the Local Authority mental health group said "they should never have let the b.....s out ".

Three spaced sessions, per week of occupational activity [ educational, interest pursuit , sheltering work, in a convivial setting ] is a NEED for holding up the longterm improvement - a basic treatment of aftercare in long-term schizophrenia, the absence of which is neglect

Unmet Need

back to about schizophrenia

Why does it go wrong so often ?

 

 

 

 

E-mail reaction is welcome

mica@jidgey.e7even.com

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