a remarkable website, for family victims with links to the Inquiry Reports - the source of information about the reality of Mental Health Trusts service delivery and priorities.
May 2013
.*** New !!! We are getting nearer a Carer Charter of NHS rights ?!! ... now the GP leadership Body gets in the Act at last ... They want
1. a Gp Register of carers.
2. a carer champion in the Practice.
3. The local Commissioning Body [ the Primary Care Trust replacement just starting ] to expect this in their commissioning contact with GP's
The BBC today programme interviewed a son who had been burdened with the care of his mother with schizophrenia from his sixth form days - spoke very clearly, convincingly in ordinary voice, about that burden - his GP contact slow to appreciate and intervene, prescribing him benzodiazepine tranquillisers for some years , his situation eventually freed, relieved from a continual burden by her eventual hospital admission: as a consequence - the mental health Trust, at last, taking the lead and placing her with her own support, somewhere else; he still a carer at a distance, still tied to her troubles.
There are three categories of recognition to aspire to.
Type 1:- failure to meet these standards would result in significant threat to patient safety, rights or dignity, and/or would breach the law.
Type 2:- standards that an accredited team would be expected to meet
Type 3 :- standards that an excellent team should meet or standards that are not the direct responsibility of the team
To achieve accreditation a team must meet 100% of Type 1., 80% of Type 2. , and the majority of type 3 standards
They can be seen on www.rcpsych.ac.uk/HTAS
There are fifteen recommendations about giving support for Carers plus three about medication schedules .... "is agreed with family/carers" ...
Add to the list all input from family/carers to be documented in Trust mental health Team meetings; all meetings to follow a standard template of documentation such as this one - in place because an Inquiry after a Homicide could not establish that there was any previous standard practice of recording what was happening in the family.
The accredited Trust that wants to be approved pays about £1600 to ask to be visited for accreditation
Get your Trust to apply. Shame them in the local newspaper if they don't !
Although the accreditation is for Crisis/Home Treatement, the general tenor will apply to all Team practice.
Make sure the fifteen items about carers are universally accepted as best practice in your Trust area.
And that the new Local Commissioners have it as their commissioning.
.*** New !!!
.... Connected ... ? Cornwall External Inquiry after homicide ..... Reviewed by Cornwall Child Protection Agency - completed July 2010 Released July 2002 online - : the same tragedy: link to Serious Case Review ... First on the list in the right column
There are two things to be campaigned for about the illness: -
1.
Repeat these findings urgently Reif et al 2006
Reif examined post mortem activity of stem cell proliferation in the hippocampus of samples taken from brains that had been kept in store from three different kinds of people: those normal, those with depression, those with schizophrenia. The team were looking for changes in depression. What they found was a reduction of neurogenesis, but only in the sample from schizophrenia.
If you are to accept Reif et al - you want challenge this by saying : where would be the consequences that we can test for .
Confirmation of this hippocampal failure in schizophrenia has come from subsequent academic and field studies showing memory failngs in schizophrenia.
.*** New !!! Schizophrenia starts with this physical brain change. Reif et al 2006 can explain the finding. A reduction in new cell proliferation in the dentate gyrus of the hippocampus area in the brain, the cells at the centre of memory management, that normally keep updating stored experience and skills, with new experience, that sustain and update the working memory that lets you go on and finish tasks.
Without enough of these new memory cells you remain stuck at the level of maturity you had at the age when the illness struck.
If Hippocampal new cells are diminished, you are less able to take in, to take into consideration new outside changes material for you.
Sometimes there will be to much 'noise' - things not usually given attention and dismissed, now are allowed into memory, gain abnormal significance, take away from what should be attended to and finished.
Holding on to something that needs you to keep in touch for completion, will not be recalled as an intent, so as to resume and finish what was started earlier.
2.
The remedy; simplify a routine at the beginning.
Working with an amount of held information - an amount of memory - working memory is what you are doing when you draw out of stored experience anything needed to deal with whatever task is being attended to now. Without sufficient new dental gyrus new cell proliferation in the hippocampal area of the brain, there is no longer the ability to draw out from longterm memory a sufficient 'working' memory', at any one time.
Working memory is what is picked out of store, made ready, held, to be the relevant back ground to what is happening now, or soon.
The working memory has to be updated for example as conversation proceeds and change , as tasks progress.
After schizophrenia you need to start again with more time, a lesser level of starting difficulty, a protective lead help, supported, guided, into a simplified daily and weekly routine - the first step to the recovery, that you can then further develop for yourself.
Without enough of these new memory cells you remain stuck at the level of maturity you had at the age when the illness struck.
Life stops for you; others move on.
Clearly if the illness arrives in teen age and early adulthood, your coping skills, in personal care, in relationships, in work, in furthering your interest activities, are insufficiently developed, leave you insufficiently able to deal with day to day matters by yourself.
You are better placed when the illness arrives later and if you have acquired supportive relationships, and can accept treatment.
When the Reif study is confirmed, the stigma attached by the profession, public and the media, to this illness can be challenged.
Compare cancer.
[ Karl Deisseroth - optogenetic man - the next Nobel Prize winner - a psychiatrist - put the question ' Why the stigma ? Unlike cancer ( that gets sympathy - and enormous research funding ) we can't point to a cause " ]
Not their fault, not their choice, not what they can deal with themselves in most cases. An illness for which the NHS is there to help, , find a remedy bringing benefit, provide resource in partnership with those already providing family and community caring.
From the National Confidential Inquiry 2012: figures for suicide are gathered up to 2010, for homicide are to 2009.
Deaths on in-patient wards are down 200 per year to 90 over ten years; by suicide among mental health patients treated at home are up; to 150 to 200 a year. [ Inpatients days spent in hospital are much reduced. ]
: A recent decrease in the number of mental health patients convicted of homicide although it is too early to draw definitive conclusions. One suggestion is that it happened when Community Treatment Orders were introduced, suggesting a more assured compliance in medication. Around 85% CTO's are for schizophrenia.
6% homicides - defined by Court conviction -are from schizophrenia; much higher percentage than the general rate.
The site is edited by a retired consultant psychiatrist who has looked after someone with the schizophrenia condition, at home, contact me if you want to help me out with my my views, email about some issue of caring service that is promising, or unsettled and unsettling : at davidwatch@btinternet.com or tel no 01208 81 6035 ... please stay in touch for for a second and final thoughts .... they are better, often ! Some reason for hope. More studies support the idea that insufficient memory, after a falling off of the level of newly made memory cells in the hippocampal area of the brain, is
affected by the negative form of schizophrenia, for the last twenty years.
The highlit links take you to another page. You return via the back arrow at the top of your screen or from a link at the bottom of a page
*** New !!!
This is a crucial failure
Sometimes there is enough working memory to survive with a little support, on a previously well supported established routine, at a simplified level, by a fall in standard of living; for a while, eventually failures accumulate.
Enough working memory is required for prospective memory tasks - bringing together all the preparations and decisions - holding on to the the background in order to properly to complete the necessary intentions of day to day living, without which personal circumstances deteriorate.
I can't emphasise enough the failure that not enough available working memory is the critical fault in schizophrenia from the age of onset of the illness.
What they need in compensation is - beginning at an accessible and manageable level - an established basic daily and weekly routine :
a proper access to day centre activities, sufficient to provide an outside routine of activities that anchors their fall back attention when there is nothing else to attend to, and nothing to look forward to;
a proper application of the Mental Health Act Observation Order , when in florid trouble - no beds - giving enough time of a stay to obtain all the information needed from community observation so as to exercise an authority in the community for the future when they leave;
the social worker to visit to the family get the details of thepre-admission care beakdown, get the social history, as well as the carer assessment when they hear of what there may be in a care plan, what they assess, for what relief, for what provision of outside activities that the care situation will need to have access too, before they commit, temporarily, to be a partner in the future Trust Care Plan.
The pre-admission illness story . They used to be good at that.
How to find, present, a persuasive route from the hippocampal neurogenesis reduction - at the start of the illness, [ I try can you do any better ! ] leading to the development of a delusional system that can take control, that is inaccessible to normal rejection, that persists on roughly the same lines as it starts, that allows with some difficulties down to reduced working memory, the attention to enough particiption in normal life, so that people draw the conclusion that the illness is somehow partly a question of 'it's their choice'.
Backed up by some lead clinician saying the same thing.
In other words it's up to them to behave. They get left out of public NHS resource distribution.
Nearly every mental health Primary Care Trust purchaser in England has to pay for Out of Area patient transfers, to beds elsewhere.
In cornwall for example there may be ten patients away at any one time. The idea of reducing in-patient beds was saving money because of overall funding restraint imposed on and by management.
The effect of all the efficiency savings - delivering care near the patient is just to increase the burden of responsibility and the burden of caring for famiies that do not have the resources nor the authority nor sufficient knowledge of the disability in schizophrenia, and the p[roblems that brings with it, to claim from whatever institution should be meeting it, what supporting continuity care requires in terms of life activities for the one in continuing care
Carers have to travel miles away to and fro to see their family members, to stick up for their needs,speak for their rights .
An insider said there are times when there are no spare beds in the whole country.Why are the NHS clinical leads letting us down?
Consultant Psychiatrists - in their House Journal the Psychiatrist raise doubts about delivering 'Continuity of Care' with all the different community Teams.
One comments :- " the issue that most of us (clinicians and patients) have faced sometimes painfully recently..... where and when might we get a bed?Management efficiency did not realise, weren't told. or didn't believe that the uncertainty in serious psychiatric illness, means there must always be some slack in the system, that used to be given by 'beds'
One explanation for this 'covert' dissatisfaction, is that Consultant Psychiatrist leads did not publicly protest that cutting in- patient admission beds would reduce service abiity. They would have been supported by family and community carers, but had lost partnership with these, still have, although both should have been, and be, on the same side. Together they could have stood up to the purchasing Trust management that had a different priority.
In Cornwall at any one time up to ten patients are away in out of area places.
Might this be related ... Cornwall Homicide Inquiry
Judge allows questioning of Work Test For those with serious mental illnesses
worried about your disabled family member, join this very good campaigning and informative site - let people similarly worried know about it.
Join atBenefits and Work
New Weekly issuesWhen moved to Secure Units after a risk event - the daignostic change is always back to schizophrenia. Often in previous care the diagnosis was never authoritative - never decisive not even - this is the working diagnosis.
[CBT}for schizophrenia: Art 'therapy' : both thumbs down - as therapy - not as providing an outside routine for a while. Art 'therapy' fails when put out as therapy, or part of a targeted funding contract. The local Day centre has art classes only because the insourced provider gets funding on how many it can get to complete an NVQ, those who would join in as an enjoyable form of companionship and handiwork pleasure, don't want and can't cope with NVQ expectation, and quit or don't join.
Shame really, the Centre doesn't have enough funding from Local Authority to do just provide 'art' work.
A different response to the cognitive deficit in schizophrenia - ?? *** New !!! ?? Cognitive Adaptation - adapt their environment -'reminder lists' it seems to be at home - to make it easier for them to take the first steps to a prompting around them that connects them to a routine in their lives; that's it more or less !
Cognitive Therapy - the latest thing - coming your way.
Cognitive processes are defined as the specific psychological steps in order of sequence that are required to perform a particular task.
[ 'Cognitive' more or less means the brain thinking. 'Cognitive process' is the organising of gathered thoughts, that enable a sequence of thought directions to be there, at the right time, when necessary, to go ahead and complete intentions.
Theories around schizophrenia
1.
The dopamine story ... the current one that attracts research studies - basically that all the medications that alleviate florid expression of the illness, especially at the beginning of the illness - that reduce rates of relapsing - the most hard evidence based success - they are all dopamine 'blockers'.They are thought to limit it's overactivity after the illness.
It may be that unresolved anxiety, emotional conflict being a a provocation for illnesss, has less effect if the dopamine blockers are there.
2. The hippocampal failure hypothesis: - the one to supercede the dopamine hypothesis - because there is growing evidence that hippocampal changes precede and leads the dopamine overactivity. Without attending to the hippocampal neurogenesis failure addressing dopamine overactivity has reached it's limits.Reif et al 2006 .... Hippocampal "Neural stem cell proliferation is decreased in schizophrenia, but not in depression"
Hippocampal new cell formation, essential for adequate working memory, is reduced, leading to cognitive difficulty so that the sufferers are stuck with the level of experience obtained before the illness. Other hippocampus connections fail .
Hippocampal Clues
This is what allows in the delusional system of beliefs
reviewed by Reif 2007There are studies linking hippocampal change occurring before the dopamine level becomes overactive
the evidence If confirmed as a physical finding - missing neurogenesis in the brain hippocampus - at the age of the start of the illness, it doesn't matter that they are now forty, the age of onset is where they will stick - their personal, domestic, work, relationship, level of experience, their sphere of interests; it underlies the continuing behaviour. It is also what rehabilitation has to take into account.hippocampal connections needs clarification - especially those connections with the upper brain, working during sleep.
It prompted me to write to the Schizophrenia Research Forum [ they had published online an updated review of the Dopamine theory of schizophrenia ] - of which I am a member .....letter to forum not published and no response. It's a closed world like any other institutional establishment.
... Last year I wrote also to the Royal College of Psychiatry House Journal - The Psychiatrist - this letter - rejected although it was a direct response to the editorial that they had published in the previous issue - I appealed to the Editor - the refusal confirmed.These people do not want to leave their comfort zone.
[ *** New !!! * * * !!!
Reif concludes .." Given that a disruption of AN [Ed Hippocampal Adult Neurogenesis ] thus might cause erroneous temporal encoding of new memory content,
it can be speculated that disturbed AN not only contributes to schizophrenia-related deficits in episodic memory, but also to deranged emotional coding of reality perception and consecutive formation of delusions or paramnesias"
3.
Before or around birthing, neonatal damage - hypoxia, jaundice, trauma during passage, causing tentorial herniation or impaired blood flow - to the hippocampus at that time may lay the ground for the change that brings memory management failure in the hippocampus at the time of adolescence [ see early late ], so that not enough further experience can be acquired.
4.
It also can lay the ground for lateral ventricle enlargement.
Lateral ventricle enlargement in the brain must have some significance. It is there from the onset of schizophrenia: is it there before that ?
It's a puzzle. The skull in adults cannot expand.
For such spaces in the brain filled with fluid to expand, there must be a compensating reduction in brain tissue somewhere else. One of two areas for new brain cell cell addition is in the cells next to the lateral ventricles [ Sub Ventricular Zone - never examined in schizophrenia studies ]
Pantelis [ Adelaide Australia ] at the third International Congress on Schizophrenia in Florence earlier this year said - with colleagues in new data - they found
Ventricular enlargement correlated with illness duration in those already with established schizophrenia but did not appear in clinical high-risk subjects before psychosis; rather, it occurred after schizophreniform first-episode psychosis appeared.*** New !!! Why and how does schizophrenia arrive at the age it does ? : how and why ?
]
Family carers have long discoverd the value of providing a routine. They have just lacked the professional input to find external occupational routines, adapted to the interests, the motivation, at the level of achievement arrived at before the illness stopped any further maturity.heard from NHS mental health staff, heard with dread by carers
... it was their choice .... they were not sufficiently ill as I saw him/her ... we were prevented by 'confidentiality' they are to be offered Home TreatmentHow to deal with these 'walls' apply immediately for a Carer Assessment and be already prepared with a written account, to be recorded, copied to the Chief Executive of the local Mental Health Trust, of the difficulty you are being placed in by the services; especially the absence of sharing care; particularly the absence of a programme of activities, occupying the family patient, outside the home on three days during the week, giving a routine for the patient, and a life to the family of their own.
The local Advocacy service [ find through your mental heath trust phone contact ] or from the same contact, the local PALS may give you help.
Carer Support workers may live near you - in Cornwall the previous service of six plus a manager plus one supporting carers groups in each six districts in cornwall , has been replaced by two, out of nineteen general health support workers - now managed by a local Local Authority led Adult Care management, bound to be dominated by generic physical health caring and age dementia, , the focus now on a so-called 'new service'- a generic one stop telephone call centre, without serious mental health caring experience, that will divert you appropriately.How to deal with your frustration that expressing concern abou the level of illness, providing observationsof behaviour for this, do not seem to be addressed by 'The Team'. Write to your GP with the observations, and tell of the lack of response from the team. I hope things are better in your area. *** New !!! marks new
Monthly - an update weekly ... tragedies *** New !!! marks new
*** New !!! marks new Risk management 'Basic' Psychiatry; a good ' insider' website, with a forum :- pamshouse: a guide for carers contact me davidwatch@btinternet.com 01208 81 6035
help about , assessments, allowances, a remarkable website for victims Homicide Report Inquiry List - |
| Reif et al 2006 ...Hippocampal neural stem cell proliferation is decreased in
schizophrenia, but not in depression the abstract: ..... *** New !!! ........ ' The hippocampus, a brain region densely populated with receptors for stress hormones, stress and glucocorticoids strongly inhibit adult neurogenesis' Stress - what is that if not High Expressed Emotion - one of the most robust associations with breakdown in schizophrenia !!! ??? The factual bit is the effect on dental cell neurogenesis If Reif et al is right schizophrenia will be worse. If you don't have enough hippocampal neurogenesis you don't have enough hold on capacity in memory management to organise yourself to cope with everyday matters, particularly if the illness arrives early, in adolescence - before any maturing experience has built up, has been stored away. When the outside world is simplified enough you can. |