comment, please davidwatch@btinternet.com . ... !!!!! ...
February 23rd 2012
odds and ends
Trying to predict 'coming to be schizophrenia' from previous oddities [ so as to find ways of preventing the illness with early intervention ] is proving to be disappointing.
The 12-month conversion rate among high-risk individuals, who often have a family history of psychosis and decline in cognitive function in addition to experiencing 'soft' early signs, is around 10 percent
Although over half of subjects reported some form of 'soft early signs' at baseline, only 0.5 percent were later hospitalized for a non-affective psychotic illness, consistent with previous reports using other outcome measures
An association between schizophrenia and the MHC [ the cell surface immune defence antibody ] region (6p22.1)gives some interest to the suggestion that infection during pregnancy leads to disturbances of foetal brain development and increases the risk of schizophrenia later in life.
A possible test for the theory of infectious diseases as risk factors for schizophrenia would be to study the associated SNPs in 6p22.1 in fathers and mothers of subjects with schizophrenia, relative to parents of control subjects.
If the 6p22.11 region is related to the tendency of mothers to be infected by viruses during pregnancy,
we would expect the SNPs in 6p22.1 to be most strongly associated with being a mother [ rather than from a father ] to a subject with schizophrenia.
. Looking for other 'predispositions' is encouraged by the finding that neonatal damage to mice hippocampus [ by gene bit substitutions ] is followed by normal subsequent neurodevelopment, until mouse adolescence, when behavioural changes that mimic some aspects of schizophrenia arrive.
The hippocampal area can be vulnerable during birth 'trauma' to brain swelling that pushed the hippocampus down, herniataing on the tentorial membrane divisions below the cortex. Prolonged and deeper jaundice when blood groups of mother and baby foetus are at odds might be another insult at that time.
Birth 'trauma' may be the explanation for the makedly increased two way association of schizophrenia with epilepsy - the hippocampus being an area of sucepibilty to 'firing' of cells, but also vulnerability to the denial of oxygenation and brain pressure during a fit
February 2012
A three year study in a rural area [ Reported in the Psychiatrist - the house journal of the Royal College of Psychiatrists ] seems to show that rather more young people 'join' [ that is first ill, first diagnosed ] the ranks of the schizophrenia population than the NHS mental health service provided is based upon
Psychiatric Journal: January: Mordoe: Weatherby
Since 1995, there have been a total of 1213 litigation claims against the NHS where the specialty recorded was psychiatry, at a total cost of £47.2 million.
Of the total claims, 980 have been closed (81%), with 662 attracting compensation (68%).
The mean compensation payment was £71 299.
It is worth noting that five individual claims exceeded £1 million, accounting for a total of £10.7 million (25%). The remaining 233 open claims (19%) are relatively recent additions to the database and might be expected to inflate the number of compensated claims as they reach a conclusion
January 3rd 2012
An example of cognitive therapy - so called - with comment.
October 27th
A recent article in thr BMC Public Health Journal [ Goulden and others ] examined the tenor of newspaper coverage of mental illness ... result ...
October 20th
Quoted Psychiatric Times
1. Gattaz WF, Valente KD, Raposo NRB, et al.
Increased PLA(2) activity in the hippocampus of
patients with temporal lobe epilepsy and psychosis. J Psychiatr Res.
Chang YT, Chen PC, Tsai IJ, et al. Bidirectional relation between schizophrenia and epilepsy: A
population-based retrospective cohort study. Epilepsia. 2011 September
'an analysis of a health
insurance database, which revealed an 8 times greater likelihood of schizophrenia occurring in patients
with epilepsy, and a 6 times greater likelihood of epilepsy in those with schizophrenia'.
Also ep sch
[ Ed:- They may have hippocampal damage in common .... e.g in breech delivery, over extending of the neck during birth may reduce blood flow to the vertebral artery supply to the . the epilepsy most likely to be associated with schizophrenia - years after epilepsy onset - is temporal lobe epilepsy. Hippocampus is part of the medial side of that. For an article summary of hippocampus see hippocampus ]
]
October 16th
more on neurogenesis:- stress, through it's steroid response, reduces neurogenesis in the hippocampus
This article Snyder -
pursues the neurogenesis/depression path - well, if neurogenesis in the hippocampus in schizophrenia is already reduced [ Reif - Reif et al 2006 ] , then stress - High Emotional Expression - reduces further - hippocampal neurogenesis in schizophrenia.
Two things I hope to do soon
1. Provide a list of what Freedom of Information requests can be put to the local Mental Health Trust to give out information relevant to carers
e.g how many people with schizophrenia are known to the Trust - including those discharged.
How many of them have an aftercare routine providing predictable 'breaks' within the week
how many sufferers have family carers - at home or always in touch ...
How many qualified OT staff are there in the many community aftercare teams etc etc
As always looking for helpful responses from a family carer - any caring really for this illness, and as usual, not getting any ! Are you just shy, or what is it ?
If you are a carer group, share FoI questions around, one at a time, to avoid cost challenges
2.
Turn this site into the public display website after setting up a Charity - Schizophreniawatch - basically to speak out for those affected by schizophrenia, family carers and suffererP - anybody know of a millionaire whose family is affected by schizophrenia ?
Or, in the same situation, people of influence, who want to do something, who can be told of this web site
Now we can put a NAME, names bring a common identity, a purpose, crucial to a campaign.
Look below.
October 11th 2011
Cognitive remediation - an attempt to get sufferers to be positive about social contact, the experience of which will improve their quality of life - is the thing of the moment for schizophrenia - provided sufferers are taking medication.
It is to me a weird way of describing old-fashioned good practice - meet regularly - build up a relationship - encourage and set up help to taking part, regularly, in achievable activities - see to it if necessary by mentoring and accompaniment - these will establish a routine - that is the support most people find through domestic and work routine. !! The pressure is off the carer base.
The set up described here for Cognitive remediation is one that could be a paradigm standard for NHS delivery to those with residual schizophrenia.
It uses professional Authority coming from shared knowledge of the illness, and from a service commitment, an offer of betterment, talks with the professional experienced in schizophrenia, building up trust, giving confidence for the patient with residual illness that they will not be pressed too far, leading the patient on to engagement with ordinary activities outside themselves, settings flexible and welcoming enough so that the residual patient can enter participation 'bit by bit' [ - automisation in the study by Raalten ] until they have their own reliable, sustaining, outside routine of support.
Remember how CBT for the GP surgery got £millions towards CBT - Layard money - for the mildly ill.
Hopefully the naming Cognitive remediation - actually here called Cognitive Therapy - is the missing link, the rallying cry, that will get the money for the unmet need of occupational activities, hitherto missing for those with residual schizophrenia. ,p.The cry 'we want CT' to reverberate throughout the land.
Why is there no CT for schizophrenia in our local mental health service ! ? They have it in 'such and such' Mental Health Trust
Always remembering and preparing for historical reality, that money, even if ever committed,
if on offer, will be taken by the 'voicy people', with the knack of getting to the water hole first.
With sharper elbows or 'in the loop already.'
Those are the ones we should bring to our side . Maybe the GP's.
A family carer told me of the response of the Chair of the Local Social Services Committee to Community Care ... ... " they should never have let the buggers out " .
A shocking second killing by stabbing by some one with continuing schizophrenia.
There will have been a failure of care and treatment.
An internal Inquiry will take place straightaway but will never be published. That is supposed to encourage frankness that might otherwise not be forthcoming - the internal inquiry is to get immediately to any faults that require immediate remedy. A more detailed leisurely External Inquiry will follow postponed so as not to interfere with any legal proceedings. It will look into all the issues raised here - hopefully.
Publication is to be part of the Inquiry. It has been blocked in the past by NW SHA because participants, in the beginning were not properly advised about publication, and because the Inquiry Team did not take enough account , in ' legacy' cases, [ those ill conducted prior to - reorganisation of the management, and therefore not published ] as they should have done, of personal Data Protection matters [ including getting permision to see medical records ] and did not give enough consideration to 'anonymisation' for some participants
It should be necessary, but rarely is, to have an immediate blood test for a status of fact about recent medication compliance .
An earlier release from hpspital detention, , five years previously, will only have been after settled medication in treatment brought sufficient recovery, such that the original level of severity in the degree of schizophrenia must have responded to the medication. Any discharge from hospital care would require an after care community engagement under supervision.
The details will emerge, years down the line - too tardily to get the attention of those relatively lay people not practicing in the field for this illness, in Primary Care Trusts, purchasing a standard of service for those with continuing schizophrenia.
There should be a national scrutiny of the standards and effectiveness of national NHS care delivery to this illness.
The lobbying group against coercion, as also a too facile acceptance of capability and choice, on interview material only, when illness is not on show, has muddied the waters for those in face to face contact with patients who have a diagnosis of schizophrenia.
Who decided, on what evidence, that she was capable of being an 'informal patient'.
The Deprivation of Liberty consideration - a source of intellectual chattering for senior people in the establishment - has bewildered front line staff, they who have to make decisions in anxiety situations where they have poor information, with less personal standing and poor - in practice often a fact - access to more experienced advice. [ Owen Glyndwr:- Henry iv ... 'I can summon spirits from the vasty deep .... ay ... but will they come when you do send for them .. ]
Who accepted an informal admission here - did they know of her history. There would be responsibility in that to advise and instruct about the level of observation required, how to instate authority to detain, and what to do if they wanted to leave - in this patient with previous 'form'
What advice or instruction came with that decision , who from, to whom. ?
Here the fault seems to be to assume because someone seems to recognise to be able to rcognise when they are becoming ill, that they present themselves for treatment, that means a decision can be made that the person has insight and is capable of self control within their illness.
Those with longer experience of this illness require that decisions of a moment are to be checked out by a longer stretch of observation of behaviour under other sources of observation, especially when, as here, there is history of florid illness.
No doubt the cry will be the professionals could not predict this killing. There is no risk analysis procedure that can do so.
The answer is in a Report from the College of Psychiatrists
" Mental health professionals have limited ability to predict rare incidents of violence.
However, they have considerable skill in diagnosing and treating mental illness. The public would be better protected by having a good standard of care for all patients.
The residual flaw is that a spot assessment of 'capability' is not possible in schizophrenia. It requires awareness of the previous history,and of the recent history of the person
In particular it is dangerous and wrong to assume 'self control', choice, capability, when someone with previously florid schizophrenia psychosis has been without medication, and has not been in a steadying routine that has been observable. Laisser faire can be neglect of care.
oh dear gets worse and worse There may have not been enough experience available at the time of the admission, to be able, with a procedure in place, able and willing to use it , to speak to a more experienced opinion.
October 3rd
1.
Seven different experts fail to agree when presented with a 'scenario' expecting a Deprivation of Liberty decision
Deprivation of Liberty and 'choice'
Choice implies insight and capability. Both uncertain - the degree of uncertainty measured by other behaviour - especially when a diagnosis has been made that carries a diagnostic symptom of unreliable memory, and questioinable insight - that is in schizophrenia or old age dementias
Was there' freedom to leave' ? - that includes taking into account the capability to survive after leaving - for example - Alzheimers too demented to have choice or to survive
2.
The overriding consideration - provided it is shown as to be thoroughly considered from the subject point of view
- is the decision against 'the best interests' of the subject.
The lack of replication between 'expert practitioners' is worrying - estimated cost of a single DOLS assessment is currently circa 1200 pounds !!! Shah et al BJ psych Sept 2011
Bournewood has a lot to answer for.
An editorial in 'The Psychiatrist, a House Journal of the Royal College of Psychiatrists, wonders why findings from biological research studies do not get taken into clinical Practice and service planning !!!! see Reif et al: - reviewed at [ Reif ]
If these studies were put to the College establishment to read, to invite and publish written comment from their eminences, the College enlightenment might summon up their will, revise their public position, to matters of 'choice' by 'users', to a concern into what is to be overcome that is getting in the way of an actual NHS rehabilitation service for continuing schizophrenia<
September 8th
The National Audit on schizophrenia may produce a mouse, not a lion.
There is one question for 'user' about the activities they get.
It does not ask for a specific response - it should have had qualifying sub-questioning -
such as - on how many days in the week, how many mornings, afterrnoons in the week away from the care situation.
For this is what gives the carer support position ' breaks from caring', during the week, gives 'user', gives Carer situation,
time away from the continuous face to face exchanges with each other, that carries strain.There is no specific Q for carers, about - do they get 'breaks from caring within the week '. On how many days etc ?
Where family user is away from them, somewhere safe, doing something on regular days in the week, community and family carer has a predictable 'break within the week' to be themselves, is more likely to be able to give caring in future, without incurring the oppressive burden on their own life, that is likely to develop at times, such face to face strain between carer and user that it leads to medication failure, to breakdown
This study has an academic background, self confident in their audit., self satisfied as the experts that can cover the subject.
They forget that the people who know much, most , can recall and describe, about the actual lives of 'users' with this condition are the community and family carers .
Better to have sought their experience first about what questions to ask.The weakness is the likelihood of a low response and completion rate from 'users' and from that a selection bias, the one's responding being the one's satisfied.
Any carer is likely be able to call upon a better observation of user life than the user themselves. User memory for illness behaviour is diminished and unreliable, carrying incomplete 'insight', often not reflecting the reality of their circumstance, giving the wrong picture.
The attitude in this audit recalls to me , that of a professional 'empathising' with a family carer: saying, we are glad to be sharing this burden of care with you – to receive the reply - yes, you see the patient occasionally on their better behaviour mostly wanting to leave the interview, - family carers are about them all the time seven days a week, every week of the year ,often for ever.
But it is you who are considered the leaders and the experts, whose views and take on the treatment and care gets unreserved confidence as 'spokes people' for the service to this illness..A proper audit would ask for facts.
John Wing got down to these
. A weekly diary of 'user' life would have been expected as to 'what user was doing on each morning/afternoon in the week' – if last week was typical .
Corroborated by the appropriate user observerThis audit may be the token one. There, we have done it, a look into after-care burden
Any truthful audit questionnaire of service should be based upon how community and family carers experience of community care for their family member. This one will be accepted as the official survey, allowing the postponement of a one more accurately portraying the burden of commuity caring. Something lacking.
But
Where user doing some or not activity [ Q10 ] is matched against the equivalent response from the Carer of/about 'user' some value may come out.
September 1st
Philip Harvey, of the Emory University School of Medicine, finds that most subjects with schizophrenia live independently in rural Sweden but not in New York City, despite similar ability levels.It's the quality of the aftercare made available that matters
Harvey and colleagues point to differences in social provision in the two places.
In Trollhättan, disabled persons with schizophrenia receive more generous financial aid from the government than do those living in the costly New York area. From HEALTH decision not Local Authority. A big difference in the respect for those disadavanataged in ability, down to illness.
A mean pharisee service against a good samaritan one.want to know more - extracts go to
Want to know about 'knockdown' mice ?
August 25
Somebody in the street or other public place looking as though they are mentally ill - maybe the first opportunity to check on their medication status before they come to harmful behaviour - can be apprehended by police.But now there may be a shift, by the Police, away from using a Police station as a place of safety (s135 and s136) if the hospital Place of Safety is not available. Some Local Police seem keen on starting to remove people under s135/136 to their homes or other residential settings, and refuse removal to a police station ?? anybody confirm this change of police practice
It's a concern. Who is in charge ? How 'safe'are some of these 'places of safety'. Very unwell people may be left in their homes (or someone else's).Who is liable and acountable
August 18
Teng KY et al Center for Neuropharmacology and Neuroscience, Albany Medical College, Albany, New York 12208, USA.
Animals with a neonatal ventral hippocampal lesion (NVHL) develop abnormal behaviors during or after adolescence, suggesting that early insults can have delayed consequences.
[ Many of these behaviors depend on the prefrontal cortex (PFC), and we have reported that PFC pyramidal neurons of adult rats with an NVHL respond to stimulation of the ventral tegmental area with an increase in firing instead of the characteristic decrease.]August 10
Carer charities on 'breaks' but why not be assertive and claim breaks within the week
August 1
Quoted in the EU subcommittee report debated in the House of Lords october 2007 .
.. A few years ago, a study funded by the Commission looked at the families of people with schizophrenia in five European cities.
[Lorenza Magliano et al 1998 ..Burden on the families of patients with schizophreniaJournal of Social Psychiatry and Psychiatric Epidemiology
It found that the principal family carer spent on average between 6 and 9 hours per day supporting their relative with schizophrenia.
The "impacts" most commonly reported by family members were restrictions on on social activities, disruption to family life, and feelings of loss - lost hope, lost years, lost companionship.Is this not a breach of Convention on Human Rights: - Article 8 ... a right to privacy and family life ...
You should have entered it as your NEED in your CARER ASSESSMENT part in the first CARE PLAN, at the first contact by 'cared for' with Mental Health Trust Team. Your CARER ASSESSMENT then would have been part of the CORE ASSESSMENT before the CARE PLAN .
'First Timers' should do this - now.What to do now ? The weapon - the instrument at the disposal of the carer - the mechanism - is still the CARER ASSESSMENT.
You can ask for a CARER ASSESSMENT and get one, each year !!
If you are expected to continue to be able to deliver caring for someone with a serious and enduring mental illness, you have a right to claim your own family life ... then regular "breaks from caring" during the week, are entered by you as the main statement of Need request in your CARER ASSESSMENT - by your 'cared for or cared about' going out to do something that will engage interest for them - . If 'they 'do not meet your request, the delivering Mental HealthTrust NHS has a Service Deficiency, and the Form indicating that - there is one - goes to the Primary Care Trust , to accept the requirement, and meet it.
If not delivered, write to the team Consultant , Mental Health Trust Chief Executive and state it to be an unmet NEED and therefore a SERVICE DEFICIENCYYou help others in doing this
{ .... Community Treatment Order if it comes to that
CTO - aren't they careful it can't be applied in a family home. But this wrong according to 'Talking mental health' law .....[ " Community Treatment Order
A Community Treatment Order is used
when the people looking after you think you need care and treatment over a long period,
your judgement is impaired by your illness,
you would be at risk without the treatment
and you do not agree.A Responsible Medical Officer (RMO) and a Mental Health Officer (MHO) will have agreed that you need this and they apply to the Tribunal for the Order.
You have to receive care and treatment either at home or somewhere in the community." ]
It can come as a relief for some to have that decision made having expereinced previous illness breakdown they do not want that again and accept the professional contact to be there to butt in, if something like breakdown is happening again- if they have the authority from qualification and experience - this shows they are ready to use that experience in sufferer's best interests, that they know what they are doing and it is being done publicly and clearly .
If all carers of and about those suffering from schizophrenia used their CARER ASSESSMENT , in numbers, then quoting those numbers, would bring power to the position of caring. in the Trust area. And nationally.
I am genuinely upset about this - it seems to me a simple thing to do.
You demand real sharing of care.
To deliver breaks 'within the week' regularly to you the service has to provide lead in for somewhere for the cared for to go on a basis that is certain, and you are assured about, which means provision of somewhere something that they will want to do, which will give them the kind of supporting structure of a routine in place, of the sort ordinarily, that comes with work and domestic repetition, which they cannot achieve themselves, because their condition carries reduced working memory capacity - part of their continuing illness that needs care and treatment - requires help !!!, for goodness sake ! <When this missing element is registered as an unmet need - a service deficiency - taken to judicial review by someone or some charity that can afford it - a footballer with a family sufferer ??? - Bill Gates ..... then when this need is established, Mental Health Trust and Local Authority aftercare leads, everywhere will have to provide proper rehabilitation opportunities for those in residual schizophrenia, and commissioning authorities will have to release the budget.
ONE successful challenge and every family benefits as does the whole service .
Some sufferers will still be on income support that will get them legal aid, some will have given their family some kind of power of attorney that they can act for them, to appeal for their Human Right.
Article 8 .the right to privacy and family life
July 16th
July 9th remember this? [ Mayan C ]
( taken after www.davesheppard.co.uk ) family 'carer about' - a cousin - fails to find an adequate response
“A key lesson is the importance of observations from workers like cleaners who had the most regular contact with Mr B,”St Helen's NHS trust and a local authority have been sharply criticised following a joint investigation by the Health Service Ombudsman and the Local Government Ombudsman into how a vulnerable man with schizophrenia was left to live in “unacceptable” conditions.He lived independently in his own home for more than ten years with a support package, which included regular visits from a support worker and a community psychiatric nurse from the CMHT along with practical help from cleaners employed by St Helens.
Mr B’s health and living conditions deteriorated and he was unable to care for himself. He also developed a serious physical illness
The failure to implement his care plans and to manage risk appropriately played some part in his rapid deterioration.His cousin, Ms A, had contacted 5 Boroughs and the council after becoming concerned about his personal health and hygiene and the condition of his flat. Dissatisfied with their responses, she complained to the Ombudsmen.
According to the cousin’s account, Mr B had come to their aunt’s home in a dirty and unkempt state. He had lost a lot of weight and was feeling unwell.
She visited his flat and found cockroaches and flies as well as food that was more than a year out of date.
There was uneaten takeaway food, stains on every surface, and faeces and urine stains on the carpets and furniture. The cousin said it took her several days to clean the flat.When Mr B returned home, his physical health deteriorated and he was admitted to hospital in an emergency.
He was found to be suffering from malnutrition, dehydration and a number of other symptoms.Mr B had myeloma, a type of bone cancer and died later in a nursing home.
Ombudsman Report said Care plan was not properly implemented, there had been insufficient contact over a period, there had been poor communication, and there were gaps in records. The report also said there had been a failure to review Mr B’s care, to assess in depth his mental state, capacity or risk. The council’s cleaners had raised concerns but little action followed The Health Service Ombudsman, Ann Abraham, said: “This is an extremely sad case about a vulnerable person who was not supported in the way he should have been. The Trust and the Council failed to deliver the Ombudsmen’s power to investigate complaints jointly is particularly important when health and local government join together to provide a combined ‘seamless’ service.
“Joint services mean joint accountability if things go wrong,The Ombudsmen’s report did not uphold two of Ms A’s complaints, namely that: Mr B’s consultant psychiatrist had failed to respond to his poor physical state and had instead prescribed inappropriate drugs for depression; and that no one had supported Mr B to claim the welfare benefits to which he was entitled.
Trust and the Council apologise to Ms A and pay her £2,000 compensation. They called on the public bodies to pay a further £1,500 to cover her legal costs.
Trust to produce an action plan within three months of the final report, setting out what they would do to prevent other vulnerable people being let down in the same way in the future
July 5 !! vide supra
Local Authority Social Services given the lead in aftercare monitoring.
June 30th
The R C Pychiatrists College is starting a 'National Audit on Schizophrenia '
The audit survey is for the Mental Health Trusts to respond to.
There seems to have been no form of consultation - ignoring that there are two systems of service providers . It's just, it seems to me a Questionnaire from a sample that will be of relatively well Trust 'users' meaning that those returns will not be a representative sample?
How many 'users' in this category know what they might be entitled to, and that they fall short of that ? They don't want trouble .
1. Family and community Caring who have to continue providing care when the Secondary Service has discharged ' user' to the Primary GP services - who do not do aftercare activities - for those with the illness still continuing, who will not be in this sample.. And those 'lost' to contact, entirely
2. NHS Secondary mental Health servicesThe introduction has a paragraph for Standards - without detail - pointing to NICE guidelines
Will they ask about these
Here is the relevant Nice guidance.
National Institute of Clinical Excellence [ NICE } on Schizophrenia; updated 2009 - is not much interested in continuing care - the most important aspect of schizophrenia: - this is what it says ( out of 335 pages ! ).
4.6.8.1 All teams providing services for people with schizophrenia
should offer [ ? and if they decline ? ] social, group and physical activities to people with schizophrenia
(including in inpatient settings) and record arrangements in their care plan.4.6.9 Employment, education and occupational activities
4.6.9.1 Mental health services should work in partnership with local stakeholders, including those representing BME groups,
to enable people with mental health problems, including schizophrenia, to access local employment and educational opportunities.
This should be sensitive to the person's needs and skill level and is likely
to involve working with agencies
such as Jobcentre Plus, disability employment advisers and non-statutory providers.The following is important - and how often does it happen ?
4.6.9.2 Routinely record the daytime activities of people with schizophrenia in their care plans, including occupational outcomes.
Or this from the 'Journey To Recovery ' about those with a Care Programme Plan ...
... 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
...Cognitive Behaviour Therapy ... a waste of money ? 750,000 pounds a year
a presentation by Professor Glenys Parry
CBT from the GP Surgery" The probability that we may fail in the struggle should not deter us from the support of a cause we believe to be just "
... Abraham LincolnJune 20th
I can make good case - a factual brain study - for saying working memory failure prevents schizophrenia mending itselfI have yet to find a way of pointing to why - how - interest and participation in activities outside the self should be the mending way.
I'm working on it !
It is something to do with - that, having one particular matter - probably having something ahead, already there inside the mind, to refer to, to return to, to hold onto, in default - 'the having nothing to do mode' - sets aside attending to other matters; in this case illness matters.I start from the clinical observation that when in professional interviews sufferers often make few 'illness mistakes ' but make them when unobserved or away from 'obvious' monitoring. Generally they are led in professional interviews i.e. they have an outside structure to which they are attending.
In the same way when called to do a domiciliary visit to assess for admission under the MHAct, it was more difficult when the subject had been 'done' before. than a naive subject.
The lead here is ... 'this is about Sectioning' - strong enough context to focus on concealing the illness - the illness is capable of being dismissed temporarily.There are not many brain studies about internally 'imposing and holding on to attention' [ maybe the 'gorilla' study might be tried out on sufferers , bless them - they are likely to be in the 'watch out' lot ?
June 14th
" The probability that we may fail in the struggle should not deter us from the support of a cause we believe to be just "
... Abraham LincolnJune 7th
Three years ago I tried to get access to the 'legacy'cases - in the hands of the North West Strategic Health Authority, - cases that during the re-ordering of Strategic Health Authorities, they might have let slip. The Reports follow an independent Inquiry into the care and treatment delivered locally to a perpetrator of homicide, and are listed on their websites.
Nearly all the of the twelve Strategic Health Authorities managed to do this. [ notice NW SHA cp the Rest ]
The importance to me and other carers is that the narrative account of the treatment and care provided is the only full and independent description of what is the NHS practice currently followed at the time and accepted as standard.
Generally the services were insufficient and unable to respond appropriately, and failed to follow standard guidelinesWhat is delivered in practice does not follow the words.
Management fails to make themselves aware of the actual practice. All the Reports declare the tragedy unpredictable.
That is not the point of Inquiries, which consider whether what was being delivered at the time, was up to scratch.The Royal College looked at risk, concluding ...
" Mental health professionals have limited ability to predict rare incidents of violence.However, they have considerable skill in diagnosing and treating mental illness.
The public would be better protected by having a good standard of care for all patients "." The probability that we may fail in the struggle should not deter us from the support of a cause we believe to be just "
... Abraham Lincoln
May 31st
I am troubled by the problem posed by people who because of their enduring mental illness are unlikely and largely unable to pursue their human rights, particularly when services which 'should' have intervened to prevent them suffering from the consequences of their lack of insight, have failed to do so e.g. by exercising authority over them through the Mental Health Act to intervene.
Acts of violence with adverse consequences for victims, homicides, suicide - even disrupted neighbours and others in the community ]
Some used to have Income Support , which gave the opportunity to get legal aid. But now, Disability Living Allowance, and it's likely successor does not allow that.This lack of redress, of reckoning, applies mostly to those who continue with schizophrenia, deprived of representation, as is usual in this condition
The only 'outside' scrutiny of a local service delivery, is that coming out of Inquiries after Homicide. Publication and study of these is not widespread - but thay do reveal what was accepted as the practice of service in the area involved - not the words but the actuality.A tragic event may not - as the Reports all say - be predictable. It is predictable that good practice guidelines will not have been followed.
Immediate relatives can see clinical notes after deceased. Most want to move on, and have relief mixed with anger.
Bipolar sufferers have remission, and can then proceed against poor service.
But someone suffering from schizophrenia does not have the capacity to recognise that a coercive intervention was warranted and should have happened - as raised in last weeks issues.
They are not able to delegate someone else to act for them - as people with learning disability can often do, or at least that the Court can accept is properly advocating for them [ Bournewood ] taking a previous relationship of accepting advocacy into account.I think the only - unlikely - intervention might come from the Care Quality Commission in response to a carer intervention? Or, a retrospective action after a death of a sufferer ? Not likely to happen [ see the Inquest into Mayan C ]
Any ideas ?The reason for legal resort is to expose poor standard, expose, s of service to those who otherwise are not represented in a sufficient reckoning
May 25th.
Risk assessment tables:- that is foretelling a risk of violence and homicide , sometimes suicide, in an individual suffering from residual schizophrenia, usually are unhelpful in the 'field'.
Many attempts to produce a proforma that succeeds in foretelling such events are neither efficacious, nor effective, nor efficient. The Royal College concluded its verdict - there is little value in such proformas as tools of prediction: psychiatrists should be 'managed' and provided for, so as to deliver good service.
Neverthertheless I add my extra two pennyworth.
If the sufferer loses a previously helpful figure who was accepted by sufferer, risk is increased.
if a sufferer has a routine, the risk is less. If they do not have one, treatment is to help provide one. If they do not have a routine they, and others, are at risk. If a routine is to be lost or has been lost, risk is increased and basic monitoring of taking medication is to be checked and/or introduced, if any evidence of not taking - i.e. failure to keep up with chemist or gp repeat prescription , or found not to have the right number of tablets remaining.
Any vulnerable people in the contact system to be informed and their help line checked. community staff to step up all information and monitoring sources and prepare to put themselves in the loop.
Medication should have been established at the level that suits the individual patient, the blood level estimated when it is so, for future checking. Some contact should be advised to note in if there is any doubt about that, who will be able to know when medication is not being taken and report .
If there is a regular routine that someone has adopted, and is well used, during the day and week, then risk is very low.
Monitoring can await a change of routine.
If that routine is upset , risk becomes high. Then, that Medication is being taken should be confirmed and support engaged to restore a routine.If there is no established routine risk is high, and medication being taken must be monitored
" The probability that we may fail in the struggle should not deter us from the support of a cause we believe to be just "
just to remind you - some archaisms set aside ... .... " What is necessary for them is occupation, which alone can preserve by exercise the capabilities which still remain to them, and prevent them from wholly sinking into dullness.
For them, therefore, perhaps still more than for other forms of disease, [ colonies for the insane with their manifold ] opportunities for work and treatment on general lines, preserving independence as much as possible, are a blessing which can scarcely be too highly valued ;
family care also plays for them an important part as a transition to discharge or as a permanent shelter,Frequently - one sees even very [ demented ] patients still cheerfully and usefully employing the remains of their capabilities which the disease has left to them, in a circum-scribed domain, in field and garden, in cowstall or workshop, in sawing wood and cutting fodder, in copying, drawing, reading, in cooking, washing, or in the ironing-room, in housework, or in the sewing-room. In the states of [ ED:- impending] excitement, which occur very frequently, it usually suffices to remove them, temporarily, to supervision and rest in bed.
"One has the impression that the patients are not in a position to accomplish that mental grouping of ideas which is requisite for their survey and comparison, their subordination among one another and for the discovery of contradictions".
Yes - Kraepelin - his book Dementia praecox and Paraphrenia [ http://www.archive.org/ ] - how I wish he was alive now to declare the current care of schizophrenia a matter of shame.
No longer the the heartland of psychiatry.He lived with his patients and observed and recorded his observations patiently and thoroughly, over years. His job demnded that standard and his patients deserved it from him.
What he did not know was that the brain - instead of having a fixed quantity of cells - continues with neurogenesis throughout life.
What he did not know was that there would be medicatioins which offer some protection against relapse into more florid presentations.
That would allow 'community care' for many - but not for all !.He would not have accepted in silence that it meant no longer was there available the sheltered occupational activities of the kind he spoke highly of in his asylum. Nor that the famiy care he saw as often sustaining, would be forced upon families, with little or no relief from the burden carried, to reduce the emotional strain that might develop between carer and sufferer.
May 2nd
The reason why it is more helpful to see schizophrenia as an illness where a change in brain function has occurred, a reduction in the ability through the hippocampus to manage updating memory and acquiring experience , is the recognition that from then on, the 'working memory capacity' to bring about intentions that require many contingencies in sequence to be held onto, to be brought together - say - organising and cooking a sunday dinner - cannot be achieved - on their own. [ unless they had this capability and experience in doing this before the illness struck. ] Their community support system has to take this into account.
What is known at the age the illness strikes is retained.
Anything new , to be added after that, faces difficulties in fitting the new into the old, so as to prepare for what is coming up nextHolding onto a prospective intention, carrying an intention through the various stages at which decisions have to be made in a timely manner, as in the example given, is too much for the carrying capacity of a working memory, when the hippocampus does not make available the new cells.
The positive, after accepting this, is that learning 'the new 'can be done with companionship by standing, bit by bit adding on, till the whole is brought together, and is stored away, by repetition . In thie same way, a routine of occupational activities outside the sufferer can be assembled. The matching internal expectation, provides a reminder to shift attention to matters away from the area where the illness world is represented.
Even though they have nothing else to put into recovery, NHS providers and their clininical leads have given up on schizophrenia - to their shame - no longer the heartland of psychiatry.Compare and contrast with cancer services. [ schizophrenia can be seen as a cancer - brain cells improperly controlled have set out on their own, and forged ahead with their own new world ]
April 26th:- - letter ... errors corrected [ from me ... not published ... too many errors escaped me .... too combative ... and not clear enough ] to the British Journal of Psychiatry. They restrict the number of words to 500 including references, and don't look to worry the psychiatric establishment.
For this website I have provided links that go to the original papersApril 4
Money wasted ? Layard 'counselling' ... cognitive behavior therapy ... service for GP surgeries challenged by a study quoted in a letter to the British Journal of Psychiatry - the house journal for psychiatrists.
March 31
New guidance to supporting Carers now to be led by Social Services Department in Local Authority Councils.
A time of more upheaval and in all the changes the especial concerns of seruious mental illnesses will be set aside by the general health carers views or more likely the whole carer suppport systems will beupset and nobody know where to go with their worries.
In practice the core work face will be carer centres scattered in the local Health Authority area.
Stick to PALS, I recommendMarch 24:- working memory problems start at the perceiving and storing stage of relevant new information i,e. early in the working memory process - not 'encoded' properly. The author of the study thinks more effort should go to getting right what happens ... 'at first sight '
March 12th .. from the Psychiatric Times ... A review of cognitive defects [ 'thinking through' ] in schizophrenia, summarises well the list of difficulties but has little of comfort in the way of help
Remedial programmes may not generalise. Any improvement may just stay with the features rehearsed.Looking back they are already falling behind at ten years.
It ends with a cautionary note. ... " Keep in mind that persons with schizophrenia often have poor insight into their cognitive deficits, which potentially limits the appeal of time-consuming remediation programs.Clinicians may need to frame the goals of Cognitive rehabilitationR in very concrete terms to encourage participation in the program. "March 4th
Cells in a particular area of the Alzheimer brain: not general neurons - the particular ones supposed to maintain cortical memory channels - have been grown and reproduced outside the brain.
These are general cells. They are not suitable to be re-introduced. They would be foreign to other individuals, out of their control, could go aberrant, and produce tumours.
For therapy the cells would be fashioned to fit the site to be 'repaired' from an individual's skin cells or bone marrow, so there would be no incompatibility
Such stem cell treatment - too early for any outcome studies - is being tried out, for spinal column injury, for Parkinsonism , for Stroke repair, even maybe for baldness!
For schizophrenia it does mean more research into the area of stem cell research generally, and hopefully more of the recent studies into memory management - the fault in schizophrenia ...
[ review ]The post mortem study [ Reif ] found a shortage of such progenitor cells in the hippocampal memory area in schizophrenia.
I am exasperated and angry that there is - so far as I know - no other similar confirmatory study. [ Gold and Raalten do confirm it through finding the likely consequence - they show those with residual schizophrenia don't carry enough working memory capacity. They will not have enough capacity for prospective uncertainties, if they are short of hippocampal neurogenic stem cell progenitors ]
This why it is when people claim 'they had capacity as we saw them' that is wrong - there may be enough for carrying basic things - already learnt - but uncertain for overcoming prospective difficulties: the important point for ordinary living
Please, if anybody knows of a study or finding, confirming Reif, let me know.
davidwatch@btinternet.comThis Reif study by now should have been done for schizophrenia beginning at all ages, showing it to be a genaral failure.. There are plenty of road accidents and Coroner inquests, , and families would be sympathetic , if explained about the importance.
For example this study in predictng the arrival of schizophrenia confirmns that hippocampal changes are awry in those going on to schizophrenia.
It's the hippocampus .... !!!
Partly our fault we keep quiet about the name - nobody wants to be calleed schizophrenic - for the sake of our family member. Instead we should rage at the inattention given to the illness, not helped by the fashion now to call it 'psychosis', which buries it.
February 20 th
Government's announcement to keep Carer's Allowance outside Universal Credit. Carer’s Allowance will remain a non means-tested benefit.
But ...' It's expected that CA will be abolished in October when they review the Carers strategy and benefits '.Henry's Demons
Patrick Cockburn and Henry have written the book, Henry's Demons, about how Henry and the rest of the family dealt with his condition. I got to see a side of the world that lots of people don't see Henry Cockburn In early 2002, Henry was rescued from the estuary at Newhaven. He had swum in it fully clothed and almost died of hypothermia. He had previously been detained by police after attempting to jump off a bridge in Brighton. "I thought I was special" Henry described how he also talked to trees and had visions of Buddha in the sky. Henry said: "I thought I was special and I got to see a side of the world that lots of people don't see." "I saw my schizophrenia more as an awakening. It was when I gave up tobacco and marijuana that I started having these experiencesFebruary 11th
does the brain shrink in schizophrenia !- comment later February 3rd
A psychiatrist reviews a rather fluent father's book relating his frustrations of the services to schizophrenia
Tim Salmon interviewed recently
Tim Salmon:- Who Cares ?The book relates a 20-year history of a father not only struggling to come to terms with his son’s schizophrenia, prompting guilty, soul-searching questions, but also having to cope with the idiosyncrasies of the caring system, which apparently often failed both him and his son.
Father deserves admiration for the courage, resilience and sheer utter resolve not to abandon a son in distress, even when he behaved in an appalling, bewildering and risky manner, living between the extremes of ‘constant worry, increasing anxiety and heart-in-mouth horror’.
Salmon describes the incomprehensible institutional routines, the Kafkaesque bureaucratic system, constant changes in policy and personnel, and the ‘impersonal system of care’, which fails to take into account the inability of a person with a mental illness to navigate its forms and procedures, constantly fails to deliver despite good intentions and high-sounding but empty rhetorical words (consultation, empowerment, normalisation, accessibility, flexible pathways, well-being agenda, therapeutic optimism, preventing revolving doors, early intervention, social inclusion) and, in the words of the author, all that ‘brouhaha’. More often than not he was left having to do all the provision himself.
In terms of ideas helpful to services Salmon does offer some insights. He stresses the need to involve carers more effectively when drawing care plans that are feasible and implementable, an awareness that people with schizophrenia are particularly sensitive to defensiveness, insincerity or discomfort in staff
and more likely to react in a violent or bizarre manner when faced with uncaring professionals,
and the need for straight and frank communication when establishing a prognosis and therapeutic hopes.Although at times I was uncomfortable at his comments expressing a hint of resentment against other ‘creeds and races’ (both patients and staff) who often populate admission wards and poor estates, and the deference he showed the medical profession as opposed to other mental health workers, I do agree with the overriding message that we have a long way to go to work alongside carers in a mutually sharing system of care.
I would recommend this book for care coordinators and those interested in more responsive and engaged services.
Ed:- A bit patronising. The only relief the father felt was when a psychiatrist admitted his son for quite a long time. That would not happen now.
More by luck than by aftercare service Salmon was helped by a generous benefactor - given money to buy a flat for his son. I wonder how it worked out.
I am sure the son did not welcome the publicity - so we are not likely to know.January 29
Raalten on memory in schizophrenia this is so important, this is a more accessible account. With GoldJanuary 24 ...
Cancer recurrence is considered to be down to unseen stem cells that continue to go wrong in their cell line. That means funding to study how to close down that particular stem cellline, and hopefully how to manage stem cell line in general, giving some insight into the stem cell line that is neurogenesis.
Cancer research gets big money. Schizophrenia gets crumbs ... other than big pharmaceutical companies - only interested in variations in medicationJanuary 17
.. 17... Is the Carers Allowance threatened ? Safe ?
January 11 2011
Carer status recognised as an NHS outcome
updated government carer strategy
Mental health Disability: Charities put a Report to 'them' about benefits changes,...
ReportJanuary 1 2011 ...
Care Quality Commision figures
New detention figures - double those from twenty years ago - 22,000 cp 46,000 - perhaps 15,000 plus during the last two years : Community Treatment Orders also a major increase.
front line comment a web site worth putting in your bookmarks, favourites
Comment from - unnamed - 'senior psychiatrists' in my Sunday paper as 'shocking !
But why ? might not this mean they are brought into a service they need - which keeps in touch with them into aftercare - rather than letting them having the 'capacity' to neglect themselves ..." it was their choice " .... "they were not ill enough as we saw them " and walk away ... on the other side, not using the authority given under the Mental Health Act to .... behave like ... responsible senior psychiatrists ...They should speak up with the authority given to them under the Mental Health Act to say where there is compulsion there must be adequate services, and that current aftercare status is disgracefully, presently not there .... not there .... enough to provide a satisfying routine, during the day and the week, as I am sure is there for the 'senior psychiatrists'.
January 5 2011
strange the ways of guardian angels.
From baldness
....
Pennsylvania
comes the result of a study into the causes of baldness. The research expected the local stem cells to have run out of numbers, so that there were not enough replacement follicle cells to carry on producing hair.The fault was not with a loss of stem cells but the failure to progress into progenitor cells so and on to the final mature working cell.
Why is this relevant to schizophrenia. Neurogenesis - stem cell proceeding to mature cell - is stalled in the hippocampus of the brain in schizophrenia. Being able to follow the maturation of stem cells in an simple accessible area like baldness , may well yield insights into the failure of neurogeneisis in schizophrenia.
Besides, there is money to be made out of baldness cures , so big Grants may go there, with a spin off for facts about neurogenesis generally. Baldness in men was associated with a decline in the local influence of androgen equivalents. Schizophrenia commonly presents around adolescence - certainly a time of hormonal turbulence.
December 2010
(2010) 34: 522-524. The Psychiatrist
Correspondence to Naida F. ForbesAims and method
We examined the local impact of introducing a home treatment team
on the use of in-patient psychiatric resources and rates of detention under the Mental Health (Care and Treatment) (Scotland) Act 2003.Results Rates of admission to hospital and duration of hospital stay were unchanged.
However, there was an increase in episodes of detention in the year following the team's introduction.Clinical implications Offering home treatment as an alternative to in-patient care may be associated with an increase in compulsory treatment.
If true, this is incompatible with the 'least restrictive alternative' principle of the recently revised mental health legislation.
Comment in a letter suggests success comes with longer experience - that the first year experience is not a fair conclusionand this letter ...First, the Midlothian team had no designated consultant or social worker (although there was 'ready access' to the latter).
Second, the CRHT did not do its own face to face gatekeeping in all cases, and the proportion admissions subject to gatekeeping by the CRHT are not supplied.
Third, the team did not operate a 24 hour service.