/Manchester

MIHNEWSHEET

"Mrs Rogers tends to look considerably older than her age . . . Shepresents as being a person of fairlylimited intelligence and of a ratherbovine personality".

**

A RIGHT TO KNOW

LESLIE: "If ilook I could

misconceptionshave about me .

got things on

could have a

clear up thethey mi ght

. maybe they'vemy file ...

things that aren't true ...they thin/- I'm barmier thanI am"

GOV T. WARNING !!!!

PERSONAL INFORMATION COULD DAMAGE

YOUR HEALTH.

this newsheet aims to be a forumfor discussion amongst those ofus who have an interest in montalhealth. Every other month mostof* it will be devoted to one theme.

Dorothv Nissen Stblty

Our next feature will be ^ majortranquilisers. in two months time.

Dorothy Ni»*cn Sibley

EDITORIAL

This issue covers the local and national position on access to files andincludes personal, stories from peoplewho actually had the chance to seewhat was written about them.

The issue effects us all as we haveno enforceable right to see what aswritten about us on.files held byDoctors, Social Workers,or otherworkers in the helping proffessionswho may be making decisions whicheffect our lives.

The government is at present bringinginto force the fData Protection Act1which covers information held oncomputers. The Act may give us theright tosee what is held on computerfiles and the government is considering extending this to written files.The one group that may be excludedfrom this are those of us with mentalhealth problems. Even the NationalConsumer Council supports this idea.We must organise now to prevent thisfrom happening.

Please send in any views, commentsor information you may have. Ifneed be we can help in getting itinto written form.

HELEN "We've neverthis situationthe chance to know. "

As users we lack any enforceableright to see what personal information has been put together by publicbodies, like the N.H.S. or 5.S.D.The current situation seems simplebut is unsatisfactory. However,practices vary between organizationsover how much information they recordand collect and what they are willingto share .with_individual serviceusers. For instance consultantsin the N.H.S. may be more cautiousabout what they conceal or revealthan G.P.'s. Day centres recordingon personal files is likely tobe kept to a minimum and membersmay be free to see this information.

been in

having

CYRIL: " I know what's onmine/ I'm supposed to bea schizophrenicwhat the doctoram so I have to abide by whathe says* n -

The onus is now on professionalsto justify openly any restrictionson a general right to find out aboutthat version of yourself which hasbeen built up from "official" filesand records (which becomes all themore 'objective' and 'authoritative1for that.)

that 'sreckons I

.•m „ipI

w%

I

•i{gi!SiliBMlffi>CT--^

KW&e-

In our daily lives we are constantlymaking decisions about who to tellwhat, when - this lies at the heart

of our career as moral human beings.We make promises, try to keep confi-dnces and use discretion, as membersof groups, organizations and societyat large'.

"Confidentiality" is the principleand guarantee professionals employto reassure and 'protect' theirusers. Without its promise we wouldbe more reluctant to share thingswith them ••- part of ourselves wemay feel ashamed about and keepsecret from kith and kin. Theprinciple works both ways and isalso given as a reason for keepingpersonal information from peopleTFor instance a social worker mayhave collected information fromyour doctos, family or neighbours.

This is known as thid party information and could range from 'facts'about your personal health to remarksabout you from family and friends.Without the phance to look overthis information, the user has nosafeguards against its inaccuracies.

LESLIE: "If ilook I couldmisconceptionshave about me .

got things onthings that aren't true ...they think I'm barmier than

am

could have aclear up the

they might. maybe they've

my file

3

While tryingtt

to become more open

and "give back" the facts willrequire care and sensitivity it

must involve a real shift to more

'balanced' control and sharedresponsibility. Professionals mustlearn to see the value of more openness while users must know and demand

their rights. To do this we needto feel safe - though encouraged.

CLAUDE: "It's a two-fold affair... for some people it wouldbe beneficial ...For otherharmful ... you might startworrying about what's beenwritten down ... you mighteven disagree with it., (then)

you might need to havea two way conversation withyour doctor with a view tohaving it changed."

People who have grown used to havingno say in their lives and beingkept in the dark may feel vulnerableas they begin to speak and standup for themselves. We all needto have people we can trust at timeswe nee them to speak up for us andon our behalf.

TERRY: "I think it dependson your circumstances ...if I had someone I could

confide .. in ... then I'd wantto know"

Greater professional sharing withusers might allow each to learnmore about the other, professionalsmight become less handicapped andeven less impaired by the languagethey use.

LILLIAN: "It 's u p to you

whether yo U S hou Id know about

yourself o

Mere are some of the points madeaginst greater openness and forfurther secrecy :

Greater freedom might "inhibit"the practice of professionals.Unable to record 'sensitive'or 'frank' information, theymight find their 'discretion'limited.

Users might not grasp or evenunderstand records. The language

* is too 'technical1 for the layperson.

Coming to terms with certain^ 'facts' about yourself might

not be good for you - causingdistress and even "harm".

All social "interventions"

even medicine - are inexact

so professionals are bound toget things wrong. There is noneed to unwittingly mislead usersor burden them with uncertainty.After all professional responsibility^ is about excercisingdiscretion on behalf of otherpeople.

Greater openness might endangertrust in the professional.

GWEN: "They must have toldher she wasn't fit to go home. ... but as time went on

must have changed theirI think they (doctors)

a difficult job dealinghuman life. don ' t

theyminds,

have

wi th

think I could take the responsibility. ..«

These are some of the pointsfor more openness :.

The right to know and learnabout yourself is a basic mark

j£ of individual respect. Withoutit informed and reasonable decis

ions and choices cannot.be made.

Greater openness will improvethe quality of relationship

# between services and their users;by reducing mutual ignorance,distrust and fear, it will becomea more even one.

Greater openness is a necessaryj£ safeguard against inaccurcy in

records and files. The qualityof records and the service will

improve.

*

Files tend to lean towards the

negative side of a persons lifegreater openness will allow

a better balance.

People must not be denied thechance of learning to make sense

* about themselves and to takeup more responsibility for theirlives.

Professional, secrecy shields# poor practise and sustains the

myth of "experts, who know whatis best for you."

COLIN: "If I knew more aboutit . . I could handle it better"

ACCESS TO RECORDS

PHIL: "Whenatrist and

he writingmedical

you see a psychi-he ' s writing, is

o** i n1 n

terms !

'Setting limits to greater opennesis leading to many difficulties.

Double or multiple filing systems- some for professional use onlyand others for show - if and

when a person asks to see.

The problem of whether to tella person that information isbeing kept from them and givingreasons for this.

MIKE: "Supposing there's alaw to make them show youtheir files .. there's nothingto stop them making otherfiles that they don't showyou"

The "doctoring" of files impedesthe passag to true partnership andleaves users as 'outsiders'.

Historically, people thought tobe suffering from mental illnessand disorders have had less controlover what remains private abouttheir lives. In practice information about ther personal livesis shared between many professionalsand public bodies.

English

The discrimination which the D.H.S.S.suggests is part of an old traditionwhich likens people suffering frommental disorders to children.Hugo Grotious "Since infants aninsane persons do not have libertyof judgement, it is impossible forwrong to be done them in respectof such liberty".

By denying people important information about themselves we denythem the opportunity to learn andgrow. In a circular '83 about givingsocial service information it wastated that "requests from childrenor young people should be treatedin the same way as requests fromadults".

There is no acceptable reason fortreating differntly requests frompeople by virtue of their illnessbeino 'mental' .

*

Mental illness being what it is- this has led to discriminationin significant areas of peopleslives -in making friends, in whereto live and in job prospects.

The D.H.S.S. is currently suggestingthat people with 'mental disorders'be treated as a special case forparticular consideration over theright to know about their own records

II if. unacceptable to set up aspecial class of people for thepurpose of restricting their rights.In our relationships all of us takerisks in doscovering what otherpeople think of us.

Thanks to J. Ellen, Helen, Paul,Gwen, Lillian, Colin, Terry, Phil,Claude, Hike, Cyril, and Lesley(who all uant to reserve the rightto see their record) and all theothers at ',-iarpurhey Day Centrefor their help and assistance,

'¥*

O

TWO PERSONAL EXPERIENCES

The Story Of Mr A

After applying to the AustralianConsulate to emigrate Mr. A. arrangedwith his G.P., at the Consulate'srequest, to send medical reportson psychitric illness he had

mentioned at his interview

- episodes which had ended in 1978,seven years previously.

His application was refused andthrough a bureaucratic error, herecived in the post a large numberof selected photostats of his medicalfiles going back as far as 1958.An embassy form given to the G.P.smply requested information on pasttreatments and prognosis. Instead,the G.P. posted the photostats whichwent to Canberra,these were returnedto Mr. A!s home accompanied byan official form stamped "rejectednand "chronic schizophrenia".

After reading his files, and alreadyunder stress because of the 5 months

wait for a decision, Fir. A. suffereda further breakdown and was in

hospital for two weeks.

He was particularly upset by inaccuracies and distortions in the file.

For instance, in 1978, he had agreedto visit the psychiatric unit atHope Hospital, salford on the

specific understandingthat he was not to be detained there

overnight. When he arrived theexamining doctor asked him to undressand go to bed which he refused todo. The doctor responded that ifthis was. his attitude, he wouldbe forced to undergo . E.C.T.Distressed and frightened, Mr. A.retorted in desparation that hewould have E.C.T. only if it wasadministered without anaesthetic.

Th idea was dropped and Mr. A allowedhone thus :

"The patient insisted in ridiculous fashion on havino openE.C.T."

Fir. A. felt that his attempt todefeat the bullying tactics; of thedoctor had been misrepresented inthe doctor's write-up so as to implythe "demand"" for E.C.T. was a symptomof his illness.

Also among the photostats was aprogress report from a previousG.P. in 'which Mr.' A. was said tobe "doing quite well" as a proofreader - a print .occupation (lessskilled than Mr.A!s actual profession

The Australian immigration people,on comparing this wibh Mr A!s _application form, would deduce that hehad lied about his uninterruptedcareer as a journalist.

Another item among the photostatswas a memo from a hypnotherapistMr. A. had paid to consult privatelyin an attempt to find a substituefor injected drug treatment. Thisnote based on a five minute interview

described Mr. A. as "obviously schizophrenic". (Mr. A. later came acrossa hospital note pad given away bythe makers of Depixol, the drugto which he objected. It bore theslogan "For the long term controlof schizophrenics")

Nowhere else in the photostattedfile was Mr. A. described as havingschizophrenia. The psychiatristwho treated him in 1985 was aware

of the misdirected files and decided

to give Mr. A. an opinion as toa diagnosis.

Mr. A. acknowledges that it is normalfor some countries to refuse to

admit people with serious mentaldisordrs, but he thinks the decisiontaken in his case wats based at. leastparty on irresponsible medical

opinion.

If he knew what people were puttingin his file he would have been in

a position to ensure that all the

information was cuurate and objective

5fC #JC 3f« 3fC 5fC

John's Story

JDHM CHRISTIE(member of commonplace)

John managed to read his medicalfiles whilst no-one was looking.His doctor had told hiai little apartfrom what the treatment was goingto be and some vague informationabout his illness and John felthe needed reassurance. Moreoverhe was naturally curious to seewhat was written.

He was not at all distressed at

what he read;!What amazed me was

how little they actually knew aboutmy illness1.!The file was both informative andnot informative at the same time1.

He had thought the professionalsinvolved would have been clearerabout why he was being treated ina particular way. The reports onlyconfirmed the mistakes they hadmade in the past. These includedmoving him away from his motherand then moving him. back when hestill suffered the same problemsand giving him ECT for severe depression after he had tried to killhimself . John was feeling quitecheerful at the time. The ECT ,however, caused permanent memoryloss.

John believes that access to filesis agood idea and suggests thatthere should be an independent informed person on hand to give adviceand translate the jargon. Thisperson could assist in discussionswith psychiatrists', GPs and otherproffessionals.

LOCAL -CONCERNS

This is not a comprehensive surveyof the position locally as thiswould be beyond our resources.If you have ,trouble finding out

<about your rights to access at theservice you use, and it is not listedbelow, then we will try to help.The position locally hoever is complicated. Practice diverges widelyform official policy. Even whenpolicy states a right to accessthen how well is this publicisedand how easy is it to get to seeyour file:

^ Social Services DepartmentP O Box 536Town Hal! Extension

Manchester M60 2AFTelephone 061-23^ 5000 (Switchboard)Telex: 667149 (Corp Manchester)

AREA SOCIAL SERVICES :

Official Policy:

Access to files, following within „frapplication to ' the Area Director.File will then be edited to remove

all information from outside sources

including G.P., relatives, probationoffices.

Practice:" - r

Varies greatly* Some social workteams actively encourage access,others are not even aware of theofficial policy. General publicityof the policy is not good.

PSYCHIATRIC SOCIAL WORK

Official Policy :

No access in any district. HoweverCentral (MRI) and Ngrth; (Springsfields) are gradually moving towardseparate social work. files whichwill be open to users of theservice. South district (Withington)have no such progressive plans;

Practice : . • \ • • •

As far as known, same as official

policy.

8

••'&

Conversely many services whereofficial policy is no accessinformally encourage people to sr?ewhat is written. Generally, '.ifthere is accesc it is oriiy ;<to ;theperson whose file it is and willnot include information that the

service has got from outside sourceslike G.P.fs.

Bearing this in mind we have madeevery effort to ensure the information below is correct. If it isnot, please inform us.

(includes day centres, psychiatricsocial work and area social workers).

50CIALJSERVICE DAY CENTRES & HOSTELS )

Official Policy t i^^yX^'' 'Confused. Most of the esablishnentsdo not have a written policy.Officially probably the* same asfor area offices.

Practice :

Harpurhey, Baguley, Plymouth House:Access to files. In Harpurhey andBaguley members participate inwriting files. No access. to information from outside sources;. :•-.••"-:

Forrester

practice.House: no access in

Daisy Bank : had to refer to theirmanager to find out what their policywas.

THE HEALTH SERVICE

lu'ITHINGTON HOSPITAL

Official Policy :

No access, feu discussions taking

place.

Practice

The hospital operates an integratedfiling system where all reportsfrom each speciality are kept inone clinical file. No access to

users of any services as. far asis known.

North ManchesterGeneral HospitalCrumpsallManchester M8 6RB

(.known as Springfields)

Official Policy ;

No access, no plans for access,

Practice:

Varies widely from consultant toconsultant, also between wards.Psychology department has policy ofalways showing reports to usersof the service before sending themout and will usually show fileson request. No access to informationfrom outside sources.

CENTRAL MANCHESTER HEALTH AUTHORITY

Psychiatry Service

MANGHESTER ROYAL INFIRMARY & CHEADLEROYAL

Official policy :

None,discussions are taking place.

Practice :

Varies widely between consultants.Generally access. Most liberalof health districts overall.

Movement is toward moreaccess. Psychology department willnot make information available toemployees or relatives withoutpermission of client.

ACCESS TO RECORDS

The Mental Health Act provides onlylimited rights of access to information.For instance,an A.S.W. has aduty to inform a nearest relativein writing of reasons for notmaking a formal admission tohospital.A patient,however,hasno right to see the applicationwhich has led to their comp-ulsoryadmission.The Data Protection Act

which comes into force in 1987

will not guarantee the right ofa patient to be informed ofsignificant personal health information.In its consultation

document the D.H.S.S suggets3 possible criteria for withholding information.

Firstly,that disclosure mightnot be in the patient's "bestinterests"

Secondly, that knowledge of thedata would lead to distress or

harm to the patient or

Thirdly, that disclosure wouldbe expected to cause "actualharm" to the patient's physicalor mental health.

The D.H.S.S. in fact suggeststhat the "best intersts" criteria

is too broad yet it is this principle which applies in the MentalHealth Act during pre-hearingprocedures of Mental HealthTribunals.To limit this discre

tion,Mind has made the followingproposals on information disclosure to patients appealing toMental Health Review Tribunals:

1. Large bits or the entirereport should not be withheldfrom the patient.2.Partial non-disclosure of

information should be permittedonly in exceptional circumstances.3.Where information has been

withheld from an unrepresentedpatient then reprentation mustbe provided.The law requires thatthe representative must receivefull recorded reasons for a dec

ision to withhold but may not beallowed to share some of these

reasons with the patient whois appealing.

'4L"*> \\

mmManchester Mind

opposes making the "mentallyill" a special case in decisionsto restrict access but welcomes

the Data Protection Act's specialprovision to cover circumstancesin which an application for accessmay •be made on behalf of a mentally disordered person.

10

'The citizen's need to know isnot confined to public affairs Itarises also in his private andfamily life, his employment, theeducation of his children, thehealth and social security of hisfamily, and |usfiee to them all.In short, a free democraticsociety requires that the lawshould rocognixo and protectthe right of the individual tothe Information necessary tomake his own choices anddecisions on public and privatematters, to express his ownopinions, and to be able himselfto act to correct injustice tohimself or his family. None ofthese rights can bo fullyeffective unless he can obtaininformation.' »,„» „„,,.». ,., „

The D.H.S.S art currently consulting interested partieson the iraplementtiirton of the Data Protection Act - inparticular,the conditions of access to personal healthinformation.They are seeking comments on three possibleoptions : Option A. This would allow unrestricted accessputting personal health information on a par with other sosortsof information

Option B. This would EXEMPT personal healthdata from the provisions of the act.

Option C. This would allow a "modified" access.

Below we reprint some contributions to the consultationprocess.National Mind has yet to offer its proposals.

The Community Health Council is asking the Health Authority to use the Act

positively to expand the patient's rights

f The Government Mux now recognised the

individual's right of access to computer .stored information and we believe

that this should be extended to health information so that people can be

better informed about their own health and know whether the information

kept on them is accurate. All to often people complain that they believe

that doctors have put inaccurate information about them on their records,

sometimes about personal aspects or their life, which then effects the

doctor's 'attitude to them and their subsequent treatment. This is

particularly true when o person is suspected of having a psychiatric

illness."

National •ConsumerCouncil

\The Royal College of Psychiatrists

The reasons for adopting Option B are as followsi-

1. An complete psychiatric records will include information aboutsuch topics as sexual relationships and delinquency ofthemselves, their friends and relatives. There Es muchinformation in psychiatric records which will have been rjiven toB doctor in confidence by other people than the patient, whomight not have given that information if they hod thought thatthe doctor would hove to disclose it to the patient..

2. Records may include opinions which might be hurtful to thepatient (who may be more sensitive than average)', for example,"She appears potentially suicidal", "He might assault his pon".

3. They also contain a large amount ni information which has beengiven to the psychiatrist, by relatives and information aboutrelatives which has been given by tin: patient.

ft. Psychiatric records may contain a vast amount of informationwhich have been written in them by a large number of differentpeople. In some cases the records include Information over aperiod of 50 years.

5. It would be time-consuming and difficult to extract patientinformation from case records for a patient unless it were beingrestricted (e.g. Korner basic data set), which would be of littlevalue to the patient. It would be of more value for patients tosee their doctor who can inform them of the general content otwhat is in their records. A statutory right could only impair thedoctor/patient relationship.

The College firmly believes that Option 3 Is preferable. If, however,the Government decides that there shnuld be modified access to healthdata (Option C) then considerable safRgrordfl will have to be'introduced for psychiatric records. The Royal College of Psychiatristswould wish to be involved in any further discuss to-v. about access torjsychiatric records.

"There should be only one exception to the general rule of free access,

and that is where there is a danger of causing further harm to a

mentally ill person. In all other cases people should be able to

reassure themselves that their doctor's notes are accurate and have

the opportunity to ask questions about anything they don't understand".

u

conpiniNQ now.

Manchester Mind has recently beenawarded a grant of $700 by ManchesterCity Council to buy a word processor.It will be installed in a few weeks

after the Information Sank has been

reorganised to accomodate it.

The new computer will make mailingsa lot less time, consuming, aid theproduction of the newsheet andletters. Vie hope to use it' to catalogue information held at the Bank.

If you would be willing co helpto set up the programmes neededand have some computer experienceplease contact Tony Riley on1487.

n:

13

An Cuesujig at Commonplace,.

How do you spend your evenings?Watching television, perhaps.

Maybe drinking with friends, ordo you feel like going out but lackthe confidence to go out to a pub onyour own? If you find yourselfstaring at four walls, why not comedown to Commonplace? It's openbetween 6.30 - 10.30 p.m. Thursdays,Fridays and Sundays, with free cupsof tea. The room is on the first

floor of 17e Oxford Road, 1*113 (nearOxford Precinct)

Having been out of psychiatrichospital for over a year and finding

myself with evenings with nothingto do I decided to give Commonplacea try. I'd heard of it by wordof mouth.

The first personme feel right at

JOHN CHRISTIE

I talked to made

home. It was so

different from the 18-Plus groupI went to where nobody came up tome for half an hour and I felt I

stuck out like a sore thumb. 'So

having made the acquaintance ofseveral people with whom I found

I had much in common, I made Commonplace a regular haunt. You don't•have to have had psychiatric treatment to fit in as we find that peoplefrom all walks of life take partat the meetings. It's a talk shopwhere we don't talk shop. In factI've found the evenings there stimulating and friendly.

Meeting people is not restrictdto the meetings. Firm and lastingfriendships have been establishedand people often meet each other

during the day at each other's homes.When one of the members is in troublewe all pull together to help thatmember out.

To quote Pete Kavanagh, a long established member, Commonplace is, "Aplace for the common or not so commonperson. A meeting of disparate,desparate worlds, a cohesive

adhesive of lonelinessCommonplace has become a lighthousein the station, when the four wallsare collapsing in on oneself,Commonplace comes to the rescue."

The new time for executive meetingsis every 4th Monday in the monthat 7-30pm,' 7pm for officers. Thenext meeting is on April 28th atthe Health Education Dept, HardmanSt. The second half of the meetingwill, start at 8-30pm and be on

'.Mil start .at 8-30pm .and'Campaigning'. All welcome.

MIND YEEK

JUNE '86

beon

If anyone would like to help outwith this,- please contact !<ooj orTony on 273 5709. The Mindcollection days are May 30th and31st, so we need people to helpwith these events.

NaJSCM .

This group scans some papers forarticles/news to do with mentalhealth, to be used as a news information resource, and also to pickout items that need responding toin some way. We meet 10a.m. to2 p.m. every other Wednesday. Thenext meetings are April 16th andApril 30th.

Annual /1e.po/vt^

If you have any that you no longerneed, please send them back sincewe have run out of them.

CIUl'TKH IX

PREFRONTAL LEUCOTOMY

FOR years observant brain surgeons have recognisedthat operations which interfere with the prefrontallobes have remarkably little adverse effect and may

at times improve rather than reduce the patient's capacityfor adjustment, These observations were made on cases oftrauma to this part of the brain, and on patients who hadto permit its amputation for tumour or removal of scartissue.

"... Nevertheless we also knowthat the operation is performed at a price. It is probablethat the highest powers of the intellect arc affected detrimentally, and that if the patient shows little sign of this inhis day-to-day behaviour it may be because thedaily routineofexistence makes littlecall on hisbest powers. We recognisetoo that temperamental qualities also are not unaffected,that the reduction in self-criticism may lead to tactless andinconsiderate behaviour, and that the more immediate translation of thought and feeling into action can show itself inerrors of judgment. The damage, once done, is irreparable ;and so the necessity of a balanced and objective clinicaljudgment reaches a level of importance scarcely attainedelsewhere in psychiatry,

.4

agazine fordemocratic

psychiatry-.->*/.

50 p

EXCLUSIVE INTERVIEW: R D LAINGPsychiatric Democracy in ItaiyThe Politics of Mental Healthnews views reports

AVAILABLE FROM 19 EDGEWARE RD,FULFORD

YORK

PRICED 50P (+ 1ST CLASS STAMP)

OR FROM MIND INFORMATION BANK

This newsheet was put togethermainly by Kooj Chuhan, Mary RileyStephen Savage and Nigel Rose.

"V