|
|
|
JUSTICE FOR MENTAL PATIENTS (JuMP) |
|
|
This
page has numerous links to other parts of Mental Magazine uk and other
websites. To move back and forth from any link, click on the
|
LIST OF ARTICLES following this Introduction
The 1983 Mental Health Act has been scapegoated from the start of its existence. Every time there’s a national scandal about people with mental health problems, shortcomings in current legislation are blamed and radical changes called for as the only possible solution to the massive failures in care.
After several years of consultation and debate, followed by a White Paper followed by more consultation and debate, the government issued its proposals
in a draft mental health bill on 25 June 2002 and consultation is invited from everyone - a great opportunity for us all - until 16 September. For details see the Home Page of this website. These proposals actually amount to very little indeed and have been almost universally condemned as unworkable, inappropriate and dangerous. In my opinion, the government needs to look at how the current laws and policies are being applied.An important event – open to all - took place on Thursday, 5 July 2001, under the auspices of the UKs most prestigious mental hospital – the Maudsley. This was the 10th Maudsley Debate and the motion was: “This house welcomes the implementation of the Government White Paper on mental health.”
The motion was defeated by 112 votes to 2.
See details of debate on Home PageThe truth is that the current legislation includes all the elements needed to protect a patient’s rights both in and out of hospital. It also provides stringent safeguards against poor performance and exploitation of patients by authorities or individuals.
The 1983 Mental Health Act can be found on a number of websites
eg www.markwalton.net, and can be bought for £14.50 through ordinary bookshops, from HMSO bookshops or ordered online from HMSO
(email: book.orders@theso.co.uk)For the last 15 years (at least) the threat of legislation for Community Treatment Orders (CTOs) has been hanging over mental patients. In fact, the threat of this legislation is having much more effect than if the legislation were ever introduced (which I think is highly unlikely); because it wouldn’t make any difference!
The problem is not the current legislation but its implementation.
We are promised/threatened the “biggest shake up in mental health law for 20 (or is it 40?) years”. But as everything is in there already, what can change? The 1983 Act was not much different from the 1959 Act that it replaced. The difference is in the statutory monitoring body under the Act. It is widely seen that the performance of this body under the current Act has been a manifest and monumental failure. That is, the Mental Health Act Commission (section 121 of the 83MHA), which is a Special Health Authority with the duty to safeguard the interests of the detained patient. The MHAC is subject to same complaints procedures as any other Health Authority in the NHS and complaints about it can be made to the Health Authority Ombudsman. The Commission itself does not draw that information to our attention. Check out the website.
For the past 12 years I have been campaigning for the use of Guardianship under the 1983 Act and call it "The Man in the White Suit". (The item on the Home Page explains why.) Two articles are included here that deal with Section 7 (civil) Guardianship. One on private Guardianship the other on Guardianships recommended by Mental Health Review Tribunals.
Three of the most important pieces of information in the 1983 Mental Health Act are:
Section 131(1) - right to informal treatment in hospital;
Section 145(1) - the definition of “medical treatment” that does NOT specify medication just treatment under medical supervision;
Section 62(1) - urgent treatment which is not irreversible or hazardous.From 1983 Mental Health Act:
Section 131.- (1) Nothing in this Act shall be construed as preventing a patient who required treatment for mental disorder from being admitted to any hospital or mental nursing home in pursuance of arrangements made in that behalf and, without any application, order or direction rendering him liable to be detained under this Act, or from remaining in any hospital or mental nursing home in pursuance of such arrangements after he has ceased to be so liable to be detained.
(See also message on discussion board about Section 131.)Section 145.- (1) “medical treatment” includes nursing, and also includes care, habilitation and rehabilitation under medical supervision;
Section 62.- (1) Section 57 and 58 above shall not apply to any treatment-
(a) which is immediately necessary to save the patient’s life;
or
(b) which (not being irreversible) is immediately necessary to prevent a serious deterioration of his condition; or
(c) which (not being reversible) is immediately necessary to alleviate serious suffering by the patient; or
(d) which (not being irreversible or hazardous) is immediately necessary and represents the minimum interference necessary to prevent the patient from behaving violently or being a danger to himself or to others.To give some background to the way UK mental health care has been provided and the legislation implemented, and to put it in context with what is happening now - I’ve reproduced articles from the August 1990 issue of NSF News – the magazine for the National Schizophrenia Fellowship, together with the letter written by John Pringle (NSF founder) published in The Times in 1970 and an article in The Sunday Times last year about Carole Stone’s experience of living with her mentally ill brother. I’ve included my articles on Guardianship in both the NSF News and the Mental Health Review Tribunal News Sheet, and three Department of Health circulars:
Mental Illness Specific Grant (1991)
Care Programme Approach (1991)
National Service Framework (1999).The media coverage I have seen of the death of Sarah Lawson, did not include any reference to the legal duties currently imposed on the authorities to provide care. Sarah and her family had been asking for help for 10 years. Her death has of course only been highlighted because of the unusual circumstances (her father killed her in desperation, being unable to alleviate her suffering.) Had she been successful in any of her own attempts to kill herself it would have received no attention.
The Care Programme Approach and the National Service Framework should ensure that Sarah Lawson and all patients receive appropriate care and that their families and friends receive appropriate help in supporting the patients.
In 2000 PROFESSOR LOUIS APPLEBY was appointed as National Director for Mental Health (MENTAL HEALTH CZAR) and has been charged with overseeing the implementation of the National Service Framework. What he says about this is on the taperecordings of the *National Schizophrenia Fellowship Members’ Day and AGM last December when Professor Appleby was the keynote speaker. The cost for the three tapes is around £10. Contact the NSF via the website or at the Kingston office at 28 Castle Street, Kingston upon Thames, Surrey KT1 1SS. Tel: 020 8547 3937. Fax: 020 8547 3862.*The National Schizophrenia Fellowship was renamed "Rethink" in 2002.
Under Standard 6 of the National Service Framework, "carers" have defined rights that authorities are required to honour. Funded by the Department of Health, The National Schizophrenia Fellowship has recently produced a very informative leaflet on “carers’” rights. The leaflet is available from the NSF (tel: 0208 547 9221) and it can also be viewed and downloaded from the NSF carers' website.
The reality of “Community Care” is that it can be every bit as institutionalised in the bad sense, as hospital care. A poem by Alex Davidson, published in the first issue of “Perspectives” (the magazine of the Voices Forum within the NSF) describes it horribly well:
TIME FOR MY JAB
Time
for my jab
CPN looks at me
Pull your pants down
The dirty great big needle
Ouch! That hurts!
Done (with a rub)
Pull your pants up
Have a sleep
Goodbye
And Janet Cresswell is not still in Broadmoor because of a faulty mental health act – but because the powers in the Act have not been exercised.
While Janet has been physically deprived of her freedom for 25 years, she has remained a free spirit. Others have been deprived of mental freedom and effectively imprisoned. We have democratically created an authoritarian society with an increasingly controlled and controlling community.
Another line from The Eagles' song Hotel California puts it like this:
"You can check out any time you like but you can never leave."Rosemary Moore
July 2001
revised June 2002
|
INTRODUCTION
by Rosemary Moore
From NSF
News, 1990 (The magazine of the
National Schizophrenia Fellowship)
6
Articles
-
From
the Mental Health Review Tribunal Members’ News Sheet, 1993 -
From
Department of Health 1990 and 1999
3
Circulars -
From The Times, 9 May 1970 -
From The Sunday Times Magazine, 2001 -
|
Front page, NSF News, August 1990
A joint open letter to the Home Secretary, David Waddington, from the Directors of the NSF, MIND, the Howard League for Penal Reform, the Prison Reform Trust and the National Association for the Care and Resettlement of Offenders (NACRO) about the “presence in our prisons of large numbers of mentally vulnerable individuals” urged the Home Secretary to “take a number of steps to divert the mentally vulnerable from the criminal justice system”.
The Directors drew attention to the fact that there had been a 38% increase in those prisoners referred to psychiatrists between 1988 and 1989 “at a time when the prison population was actually falling”. They were also concerned about the “increasing number of prisoners who are committing suicide”.
The number of prison suicides had doubled during the 1980’s, and staff at Brixton prison “estimate that 85% of prisoners were mentally disturbed” who committed suicide in 1989. 30% of prisoners committing suicide “have undergone psychiatric assessment or treatment before coming into custody”.
The Directors emphasised the problems within remand prisons where studies had shown that 60% of psychiatrically disturbed prisoners had been homeless on reception, and in 40% of cases the prisoners were “incapable of caring for themselves independently in the community at the time of arrest”.
The five Directors called upon the Home Secretary to “implement immediately” several measures which included: 1. Specialist training for police, magistrates, and court clerks; 2. Establishment of a range of accommodation, including specialist bail hostels; 3. The monitoring of decisions and treatment of black inmates and women prisoners; 4. The integration of the Prison Medical Service into the National Health Service.
In a press release with the letter Jerry Westall for NSF gave the example of the psychiatric bail hostel “being pioneered in Birmingham” by NSF and others, supported by the Mental Health Foundation, as model to follow as “the estimated cost per resident would be appreciably less than keeping the same person in prison”. He also compared Home Office plans “to open 24 new prisons by the end of the century” with the plans of health authorities “to close 36 mental hospitals by 1995 with a loss of 12,500 places.”
“The NSF” he commented “does not wish to see people transferred from hospital care to the penal system because of the lack of appropriate care in the community, but it looks as if this is happening”.
On July 10th the Independent revealed that “Estimates put the number of inmates in Brixton jail who are so demonstrably mentally ill that they could be sectioned under the Mental Health Act, at 330 in 1988-89 compared with 220 in 1987-88”.
NSF News, August 1990
Front page article
|
WILLIAM BINGLEY INTERVIEW
|
(Mental
Health Act Commission website is at http://www.mhac.trent.nhs.uk)
NSF News, August 1990
WILLIAM BINGLEY became Chief Executive of the Mental Health Act Commission in February 1990, after being seconded from MIND (where he was Legal Director) to the Department of Health as secretary to the working party which produced the Mental Health Act Code of Practice.
Jerry: You have spoken clearly
about the rights of psychiatric patients, but how does the Commission view the
position of carers and their rights?
William: I think that the
Commission views the position of carers and relatives, especially relatives
who have a close involvement with the patient, as being very important indeed.
That concern and interest is a reflection of what the Mental Health Act
says. The Commission is
primarily charged with monitoring and keeping under review the operation of
the Act which gives powerful recognition to the rights of relatives.
When for instance a decision is being taken about whether someone should
be compulsorily admitted, by professionals – then not only does that
professional have to consider the rights of the patient but there are a number
of rights holders in that process whose rights have to be considered, and
obviously the most important in many ways is the nearest relative.
Jerry: You will know that NSF has
on its headed notepaper that we are “for the welfare of people with
schizophrenia and allied disorders, their families and carers”.
Do you think one organisation can represent both points of view?
William: I think it’s very
difficult to do so. Patients
and carers sometimes have very different views about what should happen to
them. But
in the end, in the context of the Mental Health Act, it’s a professional’s
job to take all the different views into account, balance them up and then
make a decision.
Jerry: I think both NSF and MIND
are trying to represent both points of view.
NSF with its support of Voices
and MIND now say they are interested in the rights of carers as well as users.
William: I think that’s true.
Jerry: Would you prefer to use the
word patient for people with a mental health problem, or do you prefer
‘users’ or ‘sufferers’ or ‘clients’?
William:
‘Patient’ I think implies somebody who is actually receiving formal
medical services. I know all the
problems that can be attached to the meaning of the word ‘patient’. I’m also a little unhappy about the word ‘users’ –
that sometimes seems to imply someone who is just receiving, without too much
contribution the other way. The
same sort of criticism can be made of the word ‘consumer’.
I personally prefer the phrase ‘people suffering from some mental
health problem’. It seems to me
that recognises the individual as a person, but also recognises that they are
perceived as having a mental health problem.
Jerry: Voices use the phrase “people who have experienced
schizophrenia” – this leaves the possibility of recovery.
William: I think that’s a very
good way of describing it.
Jerry: What is your ambition, your
strategy over what you would like to see the Commission achieving over a
reasonable time span?
William: I’ve got three
objectives over a five year span. Firstly,
the Minister has decided that the Mental Health Act Commission is to be
centralised in Nottingham. That
means closing the London and Liverpool offices.
My chief objective as head of the staff side of the Commission is to
ensure that happens with as minimum disruption to our customers – patients
and professionals, relatives, carers, etc. as possible.
Secondly, to ensure that from the point of view of administration of
the Commission activities that we take full advantage offered to us by
centralisation. I think it is
going to be very much easier to administer the many and quite complicated
activities of the Commission when we have all our staff in one office.
The first seven years of the Commission, in many ways, has seemed as if
there were three commissions – three regions – the Southern, North-East
and North-West. Not surprisingly,
because they had separate offices, they developed different ways of dealing
with things. I want to try and
achieve the best possible administrative support for our Commissioners and the
establishment of rational ways of carrying out the various functions of the
Commission. My third objective,
in the long term, and I think this was implicit in the creation of a Chief
Executive’s post, is to contribute to the making of better use of the mass
of material which this Commission picks up as it carries out its statutory
duties. We are the only statutory
organisation that visits every psychiatric hospital at least once a year.
We are the only organisation that meets with social service departments
at least once every two years to discuss how the Mental Health Act is
operating.
We
visit all private mental nursing homes, a growing sector in the delivery of
in-patient mental health care. We
also operate the second opinion procedures, so many of our doctors will be
going to see a lot of detained patients in relation to their treatment over
the year.
We have got to be able to handle that information. Centralisation is going to give us the opportunity of installing a decent data system. We need to be much better at converting our experience, at local level to a more generalised policy level so that we can give more advice than the Commission has done in the past to Ministers about how things are actually working out.
Jerry: You are involved with the
Code of Practice which you yourself had a part in producing.
The Minister has now said the Commission are going to assess the Code.
William:
What the Minister has said is that in general terms the Commission, will be
monitoring the implementation of the Code and will from time to time give him
advice on any possible changes that he might consider making.
I am sure the Minister will receive advice from other quarters but I
think it’s an important role for the Commission to receive comments from a
wide range of people. Our
commissioners have already been when they visit hospitals or go to social
services to commence the task of seeing how the Code is working and also to
pick up problems and suggestions about how it may be amended.
It was published on 19 June (1990) and is now available from HMSO shops
(£3.50 – see review in this issue).
See
Harold Jones' review of
the Code of Practice
in same NSF News issue.
NSF,
by way of their representative in the House of Lords, raised three particular
points about the Code of Practice. The
Minister has asked the Commission to comment to him by the end of the year,
and I hope we can do this in September/October, on these specific points
that were raised by Lord Mottistone in the debate.
Commissioners have already been asked to look at those issues and we
have established a national standing committee on the Code of Practice whose
primary purpose will be to put together our comments on it.
We want to receive comments on the Code.
Ministers are recognising that this Code is not a tablet of stone to be
changed every ten years but is guidance about practice and practice changes.
(The text of the debate in the House of Lords on the Code is available
from National Office. Some public libraries have Hansard in the reference section -
see 29 January 1990, cols 68-86.)
Jerry: Do you think amendments to
the Mental Health Act and new legislation are likely reasonably soon?
William:
I don’t think so. I find it quite difficult to foresee at the moment any likely
government time being found to make amendments to the MHA.
The only possible way, and I am now speculating, is that if some
disaster happens, one of the responses would be for the Government to make an
amendment to the MHA. Having said that, the Commission is very interested in
looking at the Act itself and we have a national standing committee, one of
whose jobs is looking at and formulating proposals to go to the Secretary of
State about possible changes to the Act.
Jerry: I think the major area that NSF members would be interested in is either beefing up guardianship or a community treatment order - a means of dealing with the fact that many more people are going to be discharged into the community and a few may be a danger to themselves or others.
See Rosemary Moore article on private Guardianship which appeared in the same NSF News issue. And her article on Mental Health Review Tribunals' power to recommend transfer of detained patients to Guardianship in MHRT Members News Sheet, 1993.
William: I know the Department are
thinking about it. The issue of
CTOs is a good illustration of what the Commission is about. We have 88 commissioners and we do not have a Commission view
on the desirability of CTOs. What
we have produced is a document which sets out all the pros and cons.
We are reconsidering the CTO issue and the issue of
Guardianship.
This document is available from Maid Marian House, Houndsgate, Nottingham, NG1 6BG.
Jerry: So that is an area where
there might be amendments?
William: There could be.
You can put forward ideas about changing legislation, but is there is
going to be sufficient parliamentary time?
At the moment I don’t see that there is enough of a consensus to
persuade the Government on this.
Jerry: If someone diagnosed as having a mental illness, who was
prescribed medication but refused to take the treatment, killed several people
- something most unlikely which we would all deplore - this could cause
an outcry difficult for politicians to overlook.
William: That may be the case.
We have got to satisfy ourselves that if a change in the MHA was made
that it would contribute to stopping that type of thing happening.
Personally, I don’t think the case for community treatment orders has
been made out. That is not to say
it never will be.
Jerry: A Department of Health draft
circular (‘The Care Programme Approach for People with Mental
Illness’, May 1990) comments that “community based services are only an
improvement when the patients who would otherwise have been hospital
in-patients get satisfactory health care, and where appropriate, social
care”.
Do you agree.
William: It seems a very sensible statement.
Jerry: But for some people with mental health problems, community care has been worse than hospital care.
William: I’m sure for some people it’s not an improvement at all. On the other hand, for a lot of people it is a considerable improvement. Sometimes there has been a danger, in our very understandable concern about the difficulties of implementing community care, of portraying the hospital as the most wonderful sort of place. Then it is difficult to understand that some alternative might be better. In my time at MIND I’ve seen hospital care delivered to individuals which has been truly appalling.
Jerry: On the other hand there have
been people who’ve drawn a scenario of hospital which is part of a
demonology of bad health care. People
do resent hospitals always being portrayed as run-down Victorian institutions.
William: I totally agree with that.
The further we can get away from demonology on either side the better. There are some excellent hospitals around and some very poor
ones.
Jerry:
Isn’t the answer to poor hospitals to improve hospital care rather than pull
the hospital down?
William: You’ve got to decide what you want hospitals to do. I am in favour of most mental health care being provided in the community. My experience of talking to people who use mental health services in the long term is that, on the whole, the preference is for care in the community. That is generalisation and anecdotal but it is my experience.
Community
care is, in many ways, much harder work than looking after people in hospital.
The absence of physical boundaries, in the sense that you have them in
hospital, the fact that people are not invariably where you expect them to be,
as they are usually in hospital, makes it much harder.
Jerry: Perhaps the simpler way is the better option.
William:
But on the whole people with mental health problems should live in the
same circumstances as everyone else does,
taking into account problems and giving assistance as required.
Jerry: I think most people feel
that mentally ill individuals should only be in a place of safety or an
asylum, when it is in the interests of that person or in the public interest.
William: I have no objection to that. I think there is a well established place for asylums and certainly at times in the life of a person with acute mental health problems there is a need to be in hospital.
Jerry: Short or long term?
William: For acute mental health problems hospital is the right place.
Jerry: There is the problem of closing the hospital without alternative provision. There is also the emerging difficulty of selling the hospital site. Thus you cannot obtain the capital from the sale or much less is received than anticipated. The financial consequences of that MIGHT cause some people to think that maybe this community care programme is so expensive and selling the hospital land so difficult that keeping the hospital land and modernising the asylum with smaller scale units is an attractive option.
William: That is clearly an option. In terms of land sales, at some future date land sales may produce more money. If you can’t get the money from land sales then you’ve got to get the money from somewhere else.
NSF News, August 1990
William Bingley interviewed
by Jerry Westall
WILLIAM BINGLEY was the Chief Executive of the Mental Health Act Commission for ten years. In 2000 he left the Commission and is now Professor of Law & Ethics in the Department of Primary & Community Nursing at the University of Central Lancashire. On 6 April 2000, he gave evidence, with Professor Generva Richardson, to the Health Select Committee, as part of its enquiry into NHS mental health services. The Report into these enquiries was published on 13 July 2000.
|
NSF News, August 1990
Review of the first edition, published in June 1990, of the Code of Practice for the
1983 Mental Health Act.
by Harold Jones.
ISBN 011 3212887ix plus 123 pp £3.50
HMSO 1990
The Code of Practice which was published in June offers detailed guidance on how the Mental Health Act 1983 (the Act) should be implemented. ‘The Act does not impose a legal duty to follow the Code but failure to follow the Code could be referred to in evidence in legal proceedings’ (1.1). The Code is intended primarily to address the needs and rights of persons detained under the mental health legislation (about 7 per cent of admissions). However, the Executive Letter EL(90) P/85, published in the same volume as the Code, states that much of the Code applies equally to informal patients, and ‘practitioners should seek to ensure the Code is referred to as a good practice document for the care and management of all mentally disordered patients’.
It is possible here to indicate only some of the many features that are potentially of value to NSF members. The guidance is based on certain broad principles:-
‘People being assessed for possible admission under the Act or to whom the Act applies should:
-
receive respect for and consideration of their individual qualities and
diverse backgrounds, social, cultural, ethnic and religious;
-
have their needs taken fully into account though it is recognised that, within
available resources, it may not always be practicable to meet them;
-
be delivered any necessary treatment or care in the least controlled and
segregated facilities practicable;
-
be treated or cared for in such a way that promotes to the greatest
practicable degree, their self determination and personal responsibility
consistent with their needs and wishes;
-
be discharged from any order under the Act to which they are subject
immediately it is no longer necessary.’ (1.3)
Relatives who have been confronted with the need to consider compulsory admission will appreciate the following:
‘The ASW (approved social
worker) must attempt to identify the patient’s nearest relative…, and
ensure that his statutory obligations (Section 11) to the nearest relative are
fulfilled. In addition, the ASW
should, where possible:
a.
ascertain the nearest relative’s views about the patient’s needs
and his (the relative’s) own needs in relation to the patient.
b.
inform the nearest relative of the reason for considering an
application for admission under
the Mental Health Act and the effects of making such an application.’ (2.13)
It is sound advice that the ASW is usually the right applicant, bearing in mind ‘the potential adverse affect that a nearest relative application might have on the relationship with the patient’ (2.30). Consideration is given not only to the nearest relative but also generally to carers, relatives and friends of the patient. The following are examples:
‘Where there is an unresolved
dispute about an application for admission, it is essential that the
professionals do not abandon the patient and family. Rather, they should explore and agree an alternative plan, if necessary
on a temporary basis, and ensure the family is kept informed.’ (2.29)
‘Professionals should also
recognise that though they may experience the disturbed behaviour as
intermittent, the fellow residents or carers, will experience it through 24
hours’. (18.2
The Executive Letter published with the the Code refers to the debate
on 29 January 1990 in the House of Lords when Lord Mottistone spoke on behalf
of the NSF. The Letter concedes
that the words ‘where necessary’ in
paragraphs 2.27 and 2.30 are ambiguous and ‘should
be interpreted to mean that where a nearest relative is unaware of his or her
rights under the Mental Health Act 1983, then either the approved social
worker or the doctor(s) involved in the patient’s assessment should
positively draw the nearest relative’s attention to the existence of these
rights.’ The
Letter also recalls that the Government gave undertakings to seek the advice
of the Mental Health Act Commission on the three specific criticisms raised
during the debate, and on the operation of the new Code. At the invitation of Roger Freeman, formerly Parliamentary
Under Secretary of State for Health, NSF has proposed some amendments to the
Code and in a letter to his successor, Stephen Dorrell, Judy Weleminsky*
wrote, ‘We still think that
clarification is required for Section 2.6 on the admission of a patient in the
interests of his own health and for Sections 18.23-28 on the need for
detention to be effective so long as that is necessary’.
William Bingley mentions in his conversation with Jerry Westall (see article above) that the Mental Health Act Commission would welcome comments on the Code. We can help by observing how the guidance given in the Code is followed and by offering our comments and suggestions.
Surprisingly, the index includes none of the references to relatives, families, carers and friends and only some of those to the nearest relative. A list of these references is available from NSF national office.
The Code of Practice would make a useful addition to any NSF group’s library.
NSF News, August 1990
Harold Jones
|
|
NSF News, August 1990
Article
about Section 7 in the Mental Health Act 1983 by Rosemary
Moore
Although few guardianships exist under the terms of the Mental Health Act 1983, I believe that this can be an extremely powerful way to protect the interests of patients and their supportive relatives and should be used much more widely.
In the few guardianships which do exist, most “guardians” are the Social Service Departments of the Local Authority. However, the nearest relative of the patient has the right to apply for the patient to be under the guardianship of the local authority. The nearest relative also has the right to object and prevent a patient being under guardianship of the local authority.
My brother is now 41 and has been diagnosed as schizophrenic for the past twenty years. The problems our family has encountered in trying - and failing - to see that he is properly cared for will, I am sure, be very similar to the problems experienced by many of you reading this.
The difficulties arise from the relative’s lack of defined status. In my experience the reaction to a “carer” is very negative; it means that at best one is patronised and ignored more often than not.
The main point about guardianship for relatives is that it gives one a status in law as the patient’s advocate. It overcomes the problem of professionals refusing to involve a relative properly in the care of the patient and, of course, withholding information about a patient’s care. It is vital that a relative has this in order to help the patient.
For this reason I would like to encourage other families to consider the possibility of becoming the patient’s guardian.
In some cases I am sure that it would be appropriate for the Social Services to take the responsibility of guardianship. However, I feel this should only happen where the patient does not have a relative concerned with their welfare, or if the relatives themselves feel they would prefer the local authority to take the responsibility for seeing that the patient receives all the care to which they are entitled. In my own case, and that of most of the families I know, I feel it is entirely appropriate - and very necessary - that the relatives are given the guardianship. It is particularly important if the patient is being cared for in the relative’s home.
Many people are doubtful about guardianship and, until recently, I had reservations, ie -
· that guardianship in law was unnecessary because I was already acting as my relative’s guardian in practice;
· that it would place inappropriate responsibility on me and put more pressure on me to care for my relative at home;
· that it had no “teeth” and therefore served no useful purpose.
I now believe that guardianship is essential to ensure that a patient is properly cared for; it also gives the relative power to protect their own interests as well as the patient’s.
The following is an extract from the Mental Health Act 1983 which details the powers of the guardian:
(a)
the
power to require the patient to reside at a place specified by the authority
or person named as guardian;.
(b)
the power to require the patient
to attend at places and times so specified for the purpose of medical
treatment, occupation, education or training;
(c)
the
power to require access to the patient to be given, at any place where the
patient is residing, to any registered medical practitioner;
A supposed weakness of guardianship is that the guardian cannot force the patient to have medication. However, I feel that, on the contrary, this is actually its main strength, because the guardian can pass the responsibility for deciding the treatment over to the people who should be dealing with it - the professionals. Also, patients can be very resentful about the power they think relatives have over them, ie “you can put me in hospital if you want to”, and it would be extremely damaging to the family relationship if it appeared to the patient that their relative could dictate whether or not they had medication. As the patient’s guardian, the relative has the power to see that this is decided between the patient and the doctor. The guardian can demand both that the patient sees professionals and - much more importantly - can demand that the professionals see the patient.
My brother is typical, I am sure, of many patients: the problems with not taking medication have always stemmed from the lack of professional interest in helping him. When, as now, he has access to a doctor who will discuss his medication with him (and me) and the drugs are modified with care, my brother will co-operate and indeed be more cautious than the doctor in cutting back on medication.
As important as the power to demand treatment for the patient, is the power to see that the treatment is monitored. The Mental Health Act says: “It is an offence for anyone to ill-treat or wilfully neglect a patient subject to his guardianship or otherwise in his custody or care.” Therefore, as the patient’s guardian a relative can say that it not just their right but their duty under the law to make sure that the patient is not neglected and that the care s/he receives is good.
Having now extolled the virtues of guardianship I have to tell you that I am not yet my brother’s guardian under the Mental Health Act! For a guardianship to be legal, it has to be granted by the Social Services Authority. Although when I made the application they accepted me as a suitable person to be the guardian and the two medical recommendations required were in order, they refused to grant the guardianship on a legal point. I referred the matter to the Ombudsman who has decided that this decision was wrong (ie the guardianship should have been granted), and in due course the application will be accepted formally.
However, guardianship is a state of mind as much as anything else. I see myself as my brother’s supporter rather than his carer; that it is my role to look after my brother’s interests rather than looking after him in the absence of professional care. I want him to receive the professional care he needs and I expect that care to be of a good standard.
NSF News, August 1990
Rosemary Moore
(See also article in Mental Health Review Tribunal
Members’ News sheet, 1993)
|
NHS AND COMMUNITY CARE ACT |
NSF News, August 1990
Article about 1990 Community Care Act
by NSF’s Parliamentary Officer, Dorothy Silberston,
Work on this, has dominated the whole Parliamentary session. I had problems in the Commons as none of the Conservative MPs on the Committee was a known NSF sympathiser, and only with their help could we hope to get amendments tabled with any chance of success. Contact with the Parliamentary Unit at the National Council for Voluntary Organisations got over this and enabled us also, for the first time, to work in partnership with Housing Associations in pressing for accommodation as an essential element in community care, and with other organisations in fighting for adjustment of GP budget to take account of the special needs of people with long term, time consuming illnesses, and those who have problems in being accepted and staying on GPs’ lists.
Apart from getting housing into the Act (local authorities planning community care must consult statutory and voluntary bodies providing it as well as health authorities), there were few changes in the Commons. Hundreds of amendments were either not discussed, or defeated by the Conservative majority and the Government guillotine. A “broad brush” approach was the aim, with the minimum of detailed requirements. The flesh is to go on the bones in the form of “guidance” in Department of Health Circulars, to be sent out in the autumn. It was Government undertakings, rather than changes to the Bill, which were secured, generally speaking.
In the Lords, with Lord Mottistone’s help, the whole situation was transformed. Not only did he move amendments suggested by the NSF, but he wanted comments on those moved by other peers which we might wish to support or oppose, and went with Lord Seebohm to see the Government spokesman about an amendment they moved jointly. Only one change was made to the text of the Bill as a result, but again Government undertakings were given, which Ministers can be held to in the future.
From the first, the Bill had a provision for a specific grant to improve local authority mental illness services:
“The Secretary of State may,
with the approval of the Treasury, make grants out of money provided by
Parliament towards any expenses of local authorities incurred in connection
with the exercise of their social services functions in relation to persons
suffering from mental illness.”
Our concern was that those with schizophrenia who were not acutely ill, but substantially handicapped as a result of schizophrenia, should be eligible for services provided with the grant. An amendment about this was withdrawn after Government assurances that they would be, Baroness Hooper, on behalf of the Government remarked that “All mentally ill people, at whatever stage of illness are covered”.
Lord Mottistone’s main effort was an attempt to ensure that local authorities were told when someone was to be discharged from hospital. Lord Seebohm moved a similar amendment at Committee stage, and the two peers got together between May and June, as did representatives of the Association of Directors of Social Services with me, Graham Pitt advising on the legal side, to produce an amendment acceptable to both, which would stand a better chance.
Lord Mottistone: “The amendment
has three vitally important aims. It
seeks, first, to ensure that local authorities are given advance warning of
patients who are thought to be ready for discharge from hospital and who in
their consultant’s opinion will need community care services. Secondly, it enabled the local authorities to decide (a) which of these
patients it can assess before discharge, and (b) what services they need.
Thirdly, it makes a named individual responsible for overseeing any
community care services that are to be provided…Contrary to what is still
generally believed, the overwhelming majority of schizophrenics are not and
never have been long-stay hospital patients…There is no doubt that
after-care for schizophrenia is crucial. We know that failure to provide it has led to the shameful homelessness
of some, to the inappropriate imprisonment of others and to the colossal
strain on many family carers..”
The amendment was backed by several peers and had wide support. It was, nevertheless rejected by the Government in favour of “guidance” backed by a statement about everything being done to improve matters.
The amendment was taken to a division and lost, 37 voting for and 42 against.
Whatever one thinks about ring fencing of money for community care services in general at least the Secretary of State seems to have got our message as regards mentally ill people. As Kenneth Clarke remarked, “Some local authorities are less inclined to give the correct priority to mentally ill people…some hardly bother with it at all”.
With the Bill now an Act we must try to influence the famous “guidance” and the plans for community care services. An amendment NSF backed and the Government accepted means that NSF Groups should be consulted about these plans by local authorities.
NSF
News, August 1990
Dorothy Silberston
|
NSF News, August 1990
Letter from Dorothy Silberston
I have a problem when Professor Leff speaks of schizophrenic patients who get treatment and then ‘recover’ (May issue of NSF News). He also quotes a Scottish study which found that in a year only 20 per cent of those with schizophrenia relapsed, and contrasts this with what he sees in hospital - “all the failures”.
Many members of NSF will not be able to swallow this, except in relative terms. Surely ‘recovery’, meaning a return to the capacities a person had before the illness, is rare. If you cannot work and take your place in society as a wage earner, even part-time, from the age of c20 onwards, is ‘recovery’ the word to use?
Life for thousands of schizophrenics who have been discharged and are not relapsing sufficiently to go into hospital is not linked with any kind of rehabilitation facility. What is also unproven is Professor Leff’s suggestion that the vast majority of those moved from an acute ward to such a facility, if it existed, can be enabled to go through the stages of ‘readjustment to life in the community’. What does he mean? I think he grossly underestimates the tragic impact of schizophrenia on many people’s capacity to cope with the chores and practical problems of ordinary life between relapses, let alone with getting and keeping a job or making and sustaining human contacts and relationships.
NSF
News, August 1990
Dorothy Silberston
|
Mental Health Review Tribunal
MEMBERS’ NEWS
SHEET
|
Policy Background
1. ‘Caring for People’ reaffirmed the longstanding policy of developing locally-based health and social services for people with a mental illness with care provided in the community wherever possible.
From 1 April 1991 health authorities will be required to introduce the care programme approach for the provision of community care for all in-patients considered for discharge and all new patients accepted by the specialist psychiatrist services (HC(90)-23/LASSL(90)-11 refers). Co-operation between health and social services will be essential in the implementation of care programmes.
Objective of the Grant
2. The new discretionary grant will enable local social service authorities to improve the social care they can provide to people with a mental illness in need of specialist psychiatric care.
Scope of the new Grant
3. The grant will be available for:
a. social care - of any kind - agreed by social services and the appropriate health authority(ies) as necessary to contribute to the health and social care needs of people whose mental illness (including dementia, whatever its cause) is so severe that they have been accepted for treatment by the specialist psychiatric services (ie those covered by the care programme approach);
b. social care aimed at bringing in touch with the specialist psychiatric services people in the community not currently in touch with those services but whose needs are so severe that it is clear that they would benefit from those services, for example those among the homeless population whose seriously impaired social functioning is a consequence of mental illness.
Form of Grant
4. The grant will take the form of a recurrent annual contribution (initially up to three years) to social services authorities’ revenue spending. It is intended that this should be available only for services for the groups described in paragraph 3 above.
Grant size and allocation
5. The grant in 1991/92 will be £21 million towards new services to a total cost of £30 million. Authorities will need to find the balance from other sources. The full cost (£30 million) will, however, be taken into consideration in the local authority settlement for next and subsequent years.
6. Subject to their finding from other sources a contribution of at least 30% to the cost of new services in the bulk of the grant (£20.2 million in 1991/92) will be distributed to social service authorities on the basis of the following formula:
50% of the total grant allocated by the 18 to 64 Personal Social Services Standard Spending Assessment and 50% by the 65+ PSSSSA.
The remaining £0.8 million is being reserved to fund the costs of new services for homeless mentally ill people in central London.
7. The indicative allocations for 1991/2 are set out in Annex A. (NB: The Annex below only shows allocations for the shire counties.) Social services authorities relating to more than one district health authority should seek to consult with the DHAs concerned on how the resources should be used geographically. Social services authorities should then seek to agree with the appropriate health authority(ies) what locally-relevant package of social care services should be funded discussing with family health services authorities aspects that have implications for family health services.
8. On a formal agreement being reached and confirmed to the appropriate regional health authority, the RHA should “trigger” payment by notifying the Department who will pay the local authority direct. RHAs assisted by directors of social services in the region or the Social Services Inspectorate, whichever option is generally preferred within the region are asked to use their good offices to facilitate agreement where such assistance is requested by the district health and social services authorities concerned.
Monitoring and Evaluation
9. The services to be funded from the grant should be explicitly identified in local social services authorities’ plans for mental illness services or, in the absence of such plans, in another publicly available document.
10. The new specific grant should be used to increase the current level of expenditure on social care for the severely mentally ill by at least the amount of the grant, plus the necessary local authority contribution. The grant must not be used either by social services or health authorities as a substitute source of finance for social care already being provided, including any provision through joint finance or “dowry” payments.
11. In putting forward agreed plans to the regional health authority for “triggering” payment, the director of social services (or treasurer/director of finance) and district general manager(s) should personally certify that the plans represent an addition to services. The Social Services Inspectorate (SSI) and the Audit Commission will have key roles to play in monitoring arrangements. The SS! will be writing to social services authorities, indicating the information it requires for monitoring purposes. The Department, assisted by the SSI, will evaluate the effectiveness of the new grant.
Payment of Grant
12. The grant will be paid in four quarterly instalments. Claims for grant should be submitted on the appropriate form showing expenditure to date and estimated to the end of the current quarter, and to the end of each successive quarter of the grant year. Any sums paid by way of grant which are not used for the purpose for which the grant was paid would be repayable.
Capital Expenditure
13. This grant is for revenue expenditure, and should not be used to finance any capital needs arising out of the development of services for people with mental illness.
The
shire counties allocation 1991/2 – see para 7 of above Circular
|
|
P’centage |
Share |
P’centage |
Share |
|
|
Isles of Scilly |
.00 |
.00 |
.00 |
.00 |
.00 |
|
Avon |
1.99 |
.20 |
1.70 |
.17 |
370 |
|
Bedfordshire |
.83 |
.08 |
1.09 |
.11 |
190 |
|
Berkshire |
1.14 |
.12 |
1.50 |
.15 |
270 |
|
Buckinghamshire |
.88 |
.09 |
1.13 |
.11 |
200 |
|
Cambridgeshire |
1.11 |
.11 |
1.14 |
.12 |
230 |
|
Cheshire |
1.65 |
.17 |
1.63 |
.16 |
330 |
|
Cleveland |
.99 |
.10 |
1.09 |
.11 |
210 |
|
Cornwall |
.88 |
.09 |
.80 |
.08 |
170 |
|
Cumbria |
1.04 |
.10 |
.82 |
.08 |
180 |
|
Derbyshire |
1.86 |
.19 |
1.65 |
.17 |
360 |
|
Devon |
2.00 |
.20 |
1.82 |
.18 |
380 |
|
Dorset |
1.64 |
.17 |
1.03 |
.10 |
270 |
|
Durham |
1.28 |
.13 |
1.07 |
.11 |
240 |
|
East Sussex |
1.99 |
.20 |
1.32 |
.13 |
330 |
|
Essex |
2.95 |
.30 |
2.61 |
.26 |
560 |
|
Gloucestershire |
1.02 |
.10 |
.89 |
.09 |
190 |
|
Hampshire |
2.70 |
.27 |
2.76 |
.28 |
550 |
|
Hereford&Worcs |
1.11 |
.11 |
1.12 |
.11 |
220 |
|
Hertfordshire |
1.83 |
.18 |
1.70 |
.17 |
350 |
|
Humberside |
1.77 |
.18 |
1.56 |
.16 |
340 |
|
Isle of Wight |
.30 |
.03 |
.22 |
.02 |
50 |
|
Kent |
3.05 |
.31 |
2.82 |
.28 |
590 |
|
Lancashire |
2.69 |
.27 |
2.78 |
.28 |
550 |
|
Leicestershire |
1.63 |
.17 |
1.87 |
.19 |
360 |
|
Lincolnshire |
1.15 |
.12 |
.95 |
.10 |
220 |
|
Norfolk |
1.57 |
.16 |
1.21 |
.12 |
280 |
|
Northamptonshire |
1.01 |
.10 |
1.03 |
.10 |
200 |
|
Northumberland |
.64 |
.06 |
.46 |
.05 |
110 |
|
North Yorkshire |
1.44 |
.15 |
1.10 |
.11 |
260 |
|
Nottinghamshire |
2.02 |
.20 |
1.94 |
.20 |
400 |
|
Oxfordshire |
.99 |
.10 |
1.03 |
.10 |
200 |
|
Shropshire |
.68 |
.07 |
.66 |
.07 |
140 |
|
Somerset |
.94 |
.10 |
.70 |
.07 |
170 |
|
Staffordshire |
1.75 |
.18 |
1.86 |
.19 |
370 |
|
Suffolk |
1.29 |
.13 |
1.02 |
.10 |
230 |
|
Surrey |
1.99 |
.20 |
1.68 |
.17 |
370 |
|
Warwickshire |
.85 |
.09 |
.83 |
.08 |
170 |
|
West Sussex |
1.64 |
.17 |
1.05 |
.11 |
280 |
|
Wiltshire |
.94 |
.09 |
.90 |
.09 |
180 |
|
Totals |
57.25 |
5.78 |
52.57 |
5.31 |
11,090 |
|
Health Service Circular/Local Authority Circular
HC(90)23/
LASSL(90)11
THE
CARE PROGRAMME APPROACH
FOR
PEOPLE WITH A MENTAL ILLNESS
REFERRED
TO THE SPECIALIST PSYCHIATRIC SERVICES
Policy
Background
2.
The 1975 White
Paper “Better Services for the Mentally
Ill” (Cmnd 6233) first set the general policy within which care programmes
should be introduced: this general policy has been endorsed by the Government in
the 1989 White Paper “Caring for People” (Cm 849), paragraph 7.4. Locally based hospital and community health services, co-ordinated with
services provided by social services authorities, voluntary and private sectors,
and carers, can provide better care and treatment for many people with a mental
illness than traditional specialist psychiatric hospitals.
3.
Community based
services are only an improvement when the patients who would otherwise have been
hospital in-patients get satisfactory health care, and, where appropriate,
social care. “Caring for People”
acknowledged that providing adequate arrangements for the community care and
treatment of some patients had proved more difficult and resource intensive than
expected. In practice adequate
arrangements have not always been achieved.
4.
The care
programme approach is being developed to seek to ensure that in future patients
treated in the community receive the health and social care they need, by:
i.
introducing more systematic arrangements for deciding whether a patient
referred to the specialist psychiatric services can, in the light of available
resources and the views of the patient and, where appropriate, his/her carers,
realistically be treated in the community;
ii. ensuring proper arrangements are then made, and continue to be made, for the continuing health and social care of those patients who can be treated in the community.
How the Care Programme Approach Works
5. Individual
health authorities, in discussion with relevant social services authorities,
will agree the exact form the care programme approach will take locally. All care programmes should, however, include the following key elements:
i.
systematic arrangements for assessing the care needs of patients who
could, potentially, be treated in the community, and for regularly reviewing the
health care needs of those being treated in the community;
ii. systematic arrangements, agreed with appropriate social services authorities, for assessing and regularly reviewing what social care such patients need to give them the opportunity of benefiting from treatment in the community.
6.
It
will be for relevant health and social services staff to decide whether the
resources available to them can enable acceptable arrangements to be made for
treating specific patients in the community. If a patient’s minimum needs for treatment in the community – both in
terms of continuing health care and any necessary social care – cannot be met,
in-patient treatment should be offered or continued, although (except for
patients detained under the Mental Health Act) it is for individual patients to
decide whether to accept treatment as an in-patient. Health authorities will need to ensure that any reduction in the number
of hospital beds does not outpace the development of alternative community
services.
Implementation
7.
Within
the broad framework described it is for health authorities, in discussion with
consultant psychiatrists, nurses, social workers and other professional staff,
and social services authorities to seek to establish suitable local arrangements
and to see that they are maintained in the context of purchaser/provider
arrangements post 1 April 1991.
8.
There
are some specific issues which all authorities will however need to address in
determining their local arrangements. These
relate to:
·
Inter-professional working;
·
Involving patients and carers;
·
Keeping in touch with patients and
ensuring agreed services are provided;
· The role of key workers.
Inter-professional working
9.
Although
all the patients concerned will be patients of a consultant psychiatrist, modern
psychiatric practice calls for effective inter-professional collaboration
between psychiatrists, nurses, psychologists, occupational therapists and other
health service professional staff; social workers employed by social services
authorities, and general practitioners and the primary care team, and proper
consultation with patients and their carers.
10.
Where it
is clear to a consultant and professional colleagues that continuing health
and/or social care is necessary for a patient whom they propose to treat in the
community, there must be proper arrangements for determining whether the
services assessed as necessary can, within available resources, be provided.
It is essential to obtain the agreement of all professional staff and
carers (see paragraphs 12 and 13 below) expected to contribute to a patient’s
care programme that they are able to participate as planned.
Involving
patients
11.
It is
important that proper opportunities are provided for patients themselves to take
part in discussions about their proposed care programmes, so that they have the
chance to discuss different treatment possibilities and agree the programme to
be implemented.
Involving
carers
12.
Relatives
and other carers often know a great deal about the patient’s earlier life,
previous interests, abilities and contacts and may have personal experience of
the course of his/her illness spanning many years. Wherever consistent with the patient’s wishes, professional should seek
to involve them in the planning and subsequent oversight of community care and
treatment.
13.
Carers
often make a major and valued contribution to the support received by many
people with a mental illness being treated in the community. Where a care programme depends on such a contribution, it should be
agreed in advance with the carer who should be properly advised both about such
aspects of the patient’s condition as is necessary for the support to be
given, and how to secure professional advice and support, both in emergencies
and on a day-to-day basis. In
addition, professional staff may be able to offer the carer help in coming to
terms with his/her role vis-à-vis the patient.
Arrangements
for keeping in touch with patients and making sure the services agreed as part
of the programme are provided
14.
Once an
assessment has been made of the continuing health and social care needs to be
met if a patient is to be treated
in the community, and all the professional staff expected to contribute to its
implementation have agreed that it is realistic for them to make the required
contributions, it is necessary to have effective arrangements both for
monitoring that the agreed services are, indeed, provided, and for keeping in
contact with the patient and drawing attention to changes in his or her
condition. This is a narrower
concept than that of case management as envisaged in the White Paper “Caring
for People” and upon which specific guidance will shortly be given to
local authorities. In the
Department’s view the most effective means of undertaking this work is through
named individuals, often called key workers, identified to carry the
responsibilities outlined above in respect of individual patients.
15.
Key
workers. Where this can be
agreed between a health authority and the relevant social services authority,
the ideal is for one named person to be appointed as key worker to keep in close
touch with the patient and to monitor that the agreed health and social care is
given. The key worker can come from
any discipline but should be sufficiently experienced to command the confidence
of colleagues from other disciplines. When
the key worker is unavailable, proper arrangements should be made for an
alternative point of contact for the patient and any carer(s).
16
A
particular responsibility of the key worker is to maintain sufficient contact
with the patient to advise professional colleagues of changes in circumstances
which might require review and modification of the care programme.
17.
In
additional to key worker arrangements, professional staff implementing a care
programme may decide that they need a suitable information system as a means of
keeping in touch and prompting action. Systems
using a micro-computer are available and some relevant information about them is
available from Research and Development for Psychiatry, 134 Borough High Street,
London SE1 1LB. Tel: 0207-403-8790. (Note from Rosemary: Research and Development for Psychiatry is now
the Sainsbury Centre for Mental Health at the same address and phone number.) When
establishing such a system, those concerned have a duty to consider how to
ensure the proper confidentiality of information about individual patients.
18.
Sometimes
patients being treated in the community will decline to co-operate with the
agreed care programmes, for example by missing out-patient appointments. An informal patient is free to discharge himself/herself from patient
status at any time, but often treatment may be missed due to the effects of the
illness itself, and with limited understanding of the likely consequence.
19.
Every
reasonable effort should be made to maintain contact with the patient and, where
appropriate his/her carers, to find out what is happening, to seek to sustain
the therapeutic relationship and, if this is not possible, to try to ensure that
the patient and carer knows how to make contact with his/her key worker or the
other professional staff involved. It
is particularly important that the patient’s general practitioner is kept
fully informed of a patient’s situation and especially of his or her
withdrawal (partial or complete, see paragraph 20 below) from a care programme.
The general practitioner will continue to have responsibility for the
patient’s general medical care if she/he withdraws from the care programme.
20.
Often
patients only wish to withdraw from part of a care programme and the programme
should be sufficiently flexible to accept such a partial rather than a complete
withdrawal. It is important that,
within proper limits of confidentiality, social services day care, residential
and domiciliary staff (including those from the voluntary and private sectors)
are given sufficient information about the situation to enable them to fulfil
completely their responsibility of care to the patient. Similarly, relatives and carers should also be kept properly informed.
|
See Mental Health Czar (Professor Louis Appleby) website for full details of the NSF
The National Service Framework focuses on the mental health of working age adults. It applies to both health and social services, and includes health promotion, assessment and diagnosis, treatment, rehabilitation and care, including support to carers, and encompasses primary and specialist care and the roles of partner agencies. Mental ill health is so common that at any one time around one in six people of working age have a mental health problem, most often anxiety or depression. One person in 250 will have a psychotic illness such as schizophrenia or bipolar affective disorder (manic depression).
The new NHS and Saving Lives: Our Healthier Nation
set out a package of measures to drive up the quality of services to service
users and to reduce unacceptable variations.
A First Class Service explained
how standards in the NHS would be:
·
set by
the National Institute for Clinical Excellence and National Service Frameworks
·
delivered
by clinical governance, underpinned by professional self regulation and lifelong
learning
·
monitored
by the Commission for Health Improvement, the National Performance Assessment
Framework and the National Survey of NHS Patients.
Similarly,
A New Approach to Social Services
Performance described a performance assessment framework for social
services, outlining plans to strengthen assessment by the Department of Health
and detailed proposals for national performance indicators for social
services. Together with Modernising
Social Services, it will apply Best
Value principles to social services.
The National Service Framework for Mental Health sets national standards and defines service models for promoting mental health and treating mental illness in the five following areas: mental health promotion; primary care and access to services; effective services for people with severe mental illness; caring abut carers; and preventing suicide.
The
Framework also:
·
clarifies
expectations about the future configuration of mental health services
·
sets out
arrangements for local implementation
·
puts in
place national underpinning programmes to support local delivery
·
establishes
milestones and a specific group of high-level performance indicators against
which progress within agreed timescales will be measured.
Chief executive of health authorities, local authorities and NHS Trusts and Directors of Social Services should establish local implementation teams to translate national standards and service models into local delivery plans. The strategies for implementation of these plans should be reflected in health improvement programmes, joint investment plans, service and financial frameworks, long term service agreements and clinical governance arrangements from April 2000.
Regional strategies will support local implementation and each regional office of the NHS Executive in partnership with its social care region will produce a Regional Development Plan.
The
National Service Framework builds upon the Government’s mental health strategy
set out in Modernising Mental Health
Services to ensure:
·
safe
services - to protect the public and provide effective care for those with
mental illness at the time they
need it.
·
sound
services - to ensure patients and service users have access to the full range of
services which they need
·
supportive
services - working with patients and safe services - to protect the public and
provide effective care for those with mental illness at the time they need it.
Mental
health is a joint priority for health and social services in Modernising
Health and Social Services: National Priorities Guidance for 1999/00 - 2001/02.
Partnership in Action proposed new flexibilities between health and local
authorities which have been enacted through the 1999 Health Act.
These new flexibilities will be critical to the successful implementation
of this National Service Framework.
The National Service Framework has been developed with the advice of an External Reference Group, chaired by Professor Graham Thornicroft from the Institute of Psychiatry, King’s College London. The External Reference Group brought together health and social care professionals, service users and carers, health and social service managers, partner agencies, and other advocates.
The Standards
There are seven standards:
Mental health
promotion
·
Standard
one - health and social services should:
-
promote mental health for all, working with individuals and communities
- combat discrimination against individuals and groups with mental health
problems, and promote their social
inclusion
Primary care and access to services
·
Standard
two - any service user who contacts their primary health care team with a common
mental health problem should:
-
have their mental health needs identified and assessed
- be offered effective treatments, including referral to specialist
services for further assessment, treatment and care if they require it
·
Standard
three - any individual with a common mental health problem should:
-
be able to make contact round the clock
with the local services necessary to meet their needs and receive adequate care
-
be able to use NHS Direct as it
develops, for first-level advice and referral on to specialist helplines or to
local services
·
Standard
four - all mental health service users of CPA should:
-
receive care which optimises engagement, anticipates or prevents a crisis
and reduces risk
-
have a copy of a written care plan which: includes the action to be taken
in a crisis by the service user, their carer, and their co-ordinator; advises
their GP how they should respond if the service user needs additional help; is
regularly reviewed by their care co-ordinator
-
be able to access services 24 hours a day, 365 days a year
·
Standard
five - each service user who is assessed as requiring a period of care away from
their home should have:
-
timely access to an appropriate hospital bed or alternative bed or place,
which is: in the least restrictive environment consistent with the need to
protect them and the public; as close to home as possible
-
a copy of a written care plan agreed on discharge which sets out the care
to be provided, identifies the care co-ordinator, and specifies the action to be
taken in a crisis
·
Standard
six - all individuals who provide regular and substantial care for a person on
CPA should have:
-
an assessment of their caring, physical and mental health needs, repeated
on at least an annual basis
-
their own written care plan which is given to them and implemented in
discussion with them
Preventing suicide
·
Standard
seven - local health and social care communities should prevent suicide by:
-
promoting mental health for all, working with individuals and communities
(Standard one)
-
delivering high quality primary mental health care (Standard two)
-
ensuring that anyone with a mental health problem can contact local
services via the primary care team, a helpline or an A&E department
(Standard three)
-
ensuring that individuals with severe and enduring mental illness have a
care plan which meets their
specific needs, including access to services round the clock
(Standard four)
-
providing safe hospital accommodation for individuals who need it
(Standard five)
-
enabling individuals caring for someone with severe mental illness to
receive the support which they need to continue to care (Standard six)
In
addition they should:
-
support local prison staff in preventing suicides among prisoners
-
ensure that staff are competent to assess the risk of suicide among
individuals at greatest risk
-
develop local systems for suicide audit to learn lessons and take any
necessary action
National action to underpin the National Service Framework will be taken forward in five key areas:
·
finance:
revenue, capital and estates
·
workforce
planning and education training
·
research
and development
·
clinical
decision support systems
·
information
The Government is providing a substantial new resources for mental health - £700 million in this and the next two years. New investment and reinvestment of existing resources will need to be prioritised, recognising that mental health services are whole systems which work effectively only when the component parts are all in place and in balance. The future speed of implementation of this National Service Framework will be shaped by evidence of increased cost effectiveness in delivering mental health services, available resources, and rigorous performance management.
At national level, a Mental Health Implementation Group has been established, with senior representation from the Department of Health and all of the NHS and Social Care regions in England, which will monitor and respond to progress on implementation of the NSF from a national perspective. Reporting to this group will be a national implementation support team led by and experienced NHS Trust Chief Executive.
Sheila Adam Denise Platt
Director
Chief Inspector
Health
Services Directorate
Social Services Inspectorate
NHS Executive Department of Health
30
September 1999
|
2 Articles:
Schizophrenia
By
a Correspondent
[The following article was first published in The Times of May 9, 1970, and is reprinted by courtesy of the Editor]
The
word “schizophrenia” is flung about today with flip facility, bobbing
up in films, television scripts, literary criticism, even political
articles, mostly as some sort of modish synonym for indecisiveness.
But no one who has seen the acute medical condition would ever want
to use it except in its correct context.
Schizophrenia
is a fragmentation or disintegration of the ego, that central “I” or
“me” which we all take for granted, unaware of the delicate balance of
the elements inside us. According
to the severity of the attack, the effects may range from mild
disassociation of personality to a total withdrawal from human contact.
Virtually nothing is established about its aetiology or its genetic,
environmental or other predisposing factors, so no means exist for either
prevention or permanent cure. It may strike at any age or in any walk of
life, but there is a distressingly high incidence among young adults,
including those of beyond average intelligence.
The symptoms may shade into those of many other conditions so
diagnosis can be difficult.
My
son succumbed to an alleged “depression of adolescence”. In
his second year at Oxbridge, where he had gone with a major open
scholarship. He began cutting
lectures and tutorials, shutting himself off in his rooms, and avoiding his
friends. It did not occur to
the college authorities that this behaviour could be due to anything other
than idleness. They neither
sent him to a doctor nor told us, the parents, but first took away his
scholarship – then as that had no effect, sent him down – with 24
hours’ notice to us. They
admitted – afterwards – that suicide notes had been found.
A
family suddenly faced with this situation has, in my experience, two
problems, and it is hard to say which is worst. The first is how best to cope with this strange, new member
of the household whose moods alternate impossibly between sullen lying on
his bed in the dark to wild fits of aggression, with social manners
regressed to an almost animal level. The
second problem is how to penetrate the obfuscating fog of hospital vagueness
and evasiveness to obtain intelligible guidance on the first set of
problems.
It
is understandable that psychiatrists are chary of affixing a dreaded label
too quickly, and in fact it was more than two years, after a round of
several hospitals and a disastrous second attempt at Oxbridge, before a
positive diagnosis of schizophrenia was made in my son’s case.
But looking back, were those long months in which we could get no
practical sense out of anybody, really necessary?
On
almost any specific point on which advice was desperately needed – should
he be persuaded to get up, dress, keep himself clean, encouraged to work or
study, or just be left alone, which course is best for him? – we grew used
to receiving from the doctors’ weary platitudes about showing
“patience” or, from the hospital “welfare” side, surprised
counter-questions – “Didn’t you ask the doctor that?”
Failures in co-ordination and communication, seem to hang about the
administrative management of schizophrenia almost like a grim parody of the
condition itself.
A
personal experience of this kind is inevitably subjectively coloured, but it
has persuaded me to look into other cases with which I have no emotional
link, and into the general question, and my conclusions are disturbing,
particularly abut the community provision for the victims of the condition.
Some
schizophrenics make a partial recovery.
Some stay in hospital for keeps.
But thousands more in Britain (the statistics are unreliable) level
off like my son at a low level of adaptation, physically fit and
normal-looking to a casual outsider, but without application or anything
that can be called will-power, and finding most inter-personal relations
almost impossibly difficult. Drugs
exist which palliate the grosser behavioural disturbances.
They make life more tolerable for the sufferer and those around him,
but it is hard to hit on a dosage which will not produce a somnolence as
inhibiting to normal living as the excess emotion the drugs are designed to
suppress or mask. Cases vary,
but the very success of the drugs may only make it harder for the outside
world to understand that behind the resulting apparent and outward normality
the mental fragmentation is still there.
The
community problem chronic schizophrenics present is that while not ill
enough to be made the subject of a compulsory order, they are incapable of
looking after themselves without special guidelines and supervision, notably
of either finding a job or, still more, of keeping one.
Our son spasmodically looks for the job or occupation which, with one
part of his mind, he wants.
If he gets it he either does not turn up or he leaves it the same
day. He
has less sense of money than a child of 10.
And each failure, with each successive employer, each inability to
obtain references, answer letters, keep appointments, repay debts, makes the
chance of anything better progressively more remote.
Schizophrenics
tend to leave behind them a trail of people who righteously or despairingly,
feel they have “done as much as we can” and it should be somebody
else’s turn. I have quite a
collection of sympathetic letters “hoping your son’s condition will soon
improve” while regretfully saying “no” to some specific request.
Such
reactions are all too intelligible, bearing in mind the maddening vagaries
of schizophrenics and the difficulty of fitting them into any normal pattern
of living. They excite none of
the sympathy which surrounds other classes of the disabled.
Even close relatives, let alone official bodies or employers, find it
not easy always to choke back the feeling that there is something morally
culpable about people apparently fit and rational who fling up work without
excuse, and whose hands, as the years go by, increasingly close over any
small gift of money with what looks like complacency but is in reality only
a sad acceptance of their inadequacy.
As
regards their ultimate disposal, if one must use the callous term, they
present a problem which, it seems to me, the community and the authorities
just are not facing. The
priority matter is clearly rehabilitation wherever this is possible; a dual
task of resocializing to enable them at least to scrape by in company with
normal people, and simultaneously fitting them to do some simple job,
possibly very much part-time but at least permitting them to live
independently, if only at a modest subsistence level.
Central or local authority provision for retraining geared to the
needs of schizophrenics (or for that matter, former mental patients in
general) is virtually non-existent.
The
Industrial Rehabilitation Units set up by the Ministry of Labour are
primarily intended for physically injured or handicapped manual workers.
They are too few and scattered in view of travelling difficulties
but, that apart, they concentrate on industrial retraining whereas many
schizophrenics are only fit for routine clerical or similar work and are
often so manually clumsy that to let them anywhere near lathes or power
tools is inviting trouble. Worse still, the Industrial Rehabilitation Units
naturally expect punctuality and the keeping of regular hours, both of them
major hurdles to the average schizophrenic who after an initial failure
seldom goes back.
To
meet the resocializing part of the rehabilitation process are recent Act
laid on local authorities the obligation to establish hostels to act as
“halfway houses” for mental patients between their discharge from
hospital and the hoped-for resumption by them of normal living.
The aim, the provision of an interim sheltered environment, was
admirable, but only a handful of local authorities have in fact done
anything. And of those who
have, some have interpreted their task in a grudging, obscurantist spirit.
The
so-called halfway house set up by a wealthy county close to London is run on
strict disciplinarian lines. New
arrivals have it rubbed into them that their first duty is to get a job and
get out. Use of the premises is
forbidden during the day, almost as though intended to make the inmates feel
rejected and walk the streets aimlessly, a favourite schizophrenic way of
passing the time.
Pressure
on schizophrenics to obtain occupation may be right for their own sakes and
to prevent deterioration, but hectoring is counter-productive and the
ambience which brings out their best is more that of an oversized family
than an institution. For this
reason the most successful halfway houses are those set up by such admirable
voluntary bodies as the Richmond Fellowship whose staff must by now have as
much experience of schizophrenic rehabilitation as anyone in the country.
But there are tragically few of them.
When
all is said and done a hard core will remain, possibly running well into
five figures for the United Kingdom, who will never be capable of fending
completely for themselves. No
social provision exists for them, so their future is bleak.
As parents die off and other relatives find it impossible to cope,
the inevitable trend is for them to drift downwards tot he welfare state’s
bottomest sump. A recent
“Panorama” item gave a grim but accurate account of what is already
happening to many: discharged from hospital to nobody and nowhere, feebly
attempting casual work, neglecting their medication, failing even to collect
their “public assistance”; the will-less slide to the doss house or
sleeping rough with the meths drinkers and drug addicts, involvement with
police and prison or, if lucky, back to hospital and starting the process
over again.
Mental
hospitals or institutions for mental defectives are totally inappropriate
for giving shelter to the chronic schizophrenics, but where else can they
go? What is wanted are small
residential settlements where their basic needs, including protection from
impossible stress, can be provided in a mutually supportive environment.
Such homes would be cheaper than a corresponding occupancy of places
in mental hospitals with their high medical and other overheads and where
any attempt at normal living, to which they pathetically cling, is
impossible.
Many
of the necessary jobs could be done by the residents themselves;
schizophrenics will often work well enough in their own fashion, if someone
they like will tactfully “organize” them and is tolerant of their
vagaries. There would also be
scope for sympathetic local employers, not expecting too much, to give them
a try. Such small communities
would fill a gap in our social provision, avoid the friction and waste
inherent in the present administrative neglect, and offer thousands in the
hard core their best chance of happiness.
But
the whole administrative set-up for dealing with this category of the
disabled needs pulling together. The
mentally crippled can almost be relied on to hurl themselves through any
safety net devised to catch the ordinary disabled but this should be
foreseen at the planning stage. Unaided,
they cannot be expected to cope with the bewildering maze of authorities
which impinge upon their lives: out-patient departments, almoners,
departments of employment, replying to letters, giving precise answers to
incomprehensible questions – and none appearing to be in touch with the
others.
The
ideal would be for some one authority to be given a co-ordinating role and
designated as that to which schizophrenics can turn in all matters affecting
them. If this involves
registering them that too should be considered.
The scandalous fragmentation of responsibility between local
authorities and the hospital service – the one wanting schizophrenics off
the rates even at the cost of their occupying expensive N.H.S. beds, the
other responsible solely for the medical aspects and unconcerned with any
comprehensive after-care – should be ended.
A unified national policy is needed.
Letter in The Times, May 9 1970, from JOHN PRINGLE
who later founded the National Schizophrenia Fellowship
|
The
Sunday Times Magazine,
2001
BEST
OF TIMES WORST
OF TIMES
Carole Stone, the 58 year-old radio producer turned media consultant, recalls living with her schizophrenic brother above the family sweet shop in Kent
Interview by Danny Danziger
For days, Roger would ask one question over and over again
like:
‘Is there a windmill in my watch?’
Roger was 2½ years older than me. He was always a difficult child, extremely shy, pathologically shy, and didn’t like meeting people. So when he went to his first school they asked if I would go too, because he didn’t like going on his own and he stood around looking a bit lost.
At first sight you wouldn’t know there was anything wrong with Roger – he was very nice-looking when he was younger. His face suggested someone very sensitive. He liked poetry, he wrote one or two things about wandering around by the sea, and had quite an artistic flair about him. But in public he was either surly or silent; he’d sit in a corner, perhaps grinning to himself, so you couldn’t strike up a conversation with him. Everyone found him a bit odd, and consequently he didn’t make friends at all, and he lived his life within the confines of my family.
My
parents owned a little sweet shop in a village called Tovil in Kent, next door
to a sawdust butcher. It was a tiny shop – I mean, six customers and it
was completely full. We worked extremely hard; we were open seven days a
week, and because it wasn’t doing that well, Dadda had a milk round as well.
At 5
o’clock Mama came down and opened the shop; you had to get the early morning
trade. The
hop pickers used to come by on lorries and buy their cigarettes and sweets on
the way to the fields, then there were the people going to the paper mill at the
bottom of the hill, and later in the day the older folk on their way to the
working men’s club.
We
lived above the shop. You went up
these very narrow, dark stairs to a minuscule living room, then through to the
stockroom, where all the sweets and tobacco were kept.
Roger and I had to share that room, our beds separated by a curtain. It was very difficult with Roger in the same bedroom, and I
often felt afraid, very on edge. Once
or twice I woke up in the middle of the night and found him looking down at me,
staring at me. I used to go to bed
without getting undressed. Also,
the bathroom door didn’t lock, and Roger was liable to burst in if he wanted
to use it.
There
was a lot of tension in that house, because Roger was becoming increasingly
violent and difficult. If he was
unhappy he became aggressive, and he would throw his tea at the television or
tell you to “F off”.
When
he was older, Roger would come back in a surly mood after he’d been down at
the pub, and sometimes he used to throw saucepans about.
And he started this endless questioning: does Superman exist? What is the
meaning of life? But it wasn’t
reasoned debate, it was unreasoned, aggressive debate.
For
days he would ask one question over and over again, like: “Is there a windmill
in my watch?” He went through a long phase of asking that.
Well, you’d say no at first, but after an hour of questioning you’d
finally say, “Yes, if you really think so”, because you wanted to please
him. The next day, the same
questions would resume, but he’d start; “You said there was one there
yesterday.”
He
took a job as a dustman, he had a job down at the paper factory, and he even
went into the army; but they all lasted no more than three or four weeks.
He just couldn’t cope with people.
He used to think they were looking at him, or being rude, so he’d stay
in bed and drink tea.
Then,
when he was about 21, Mama took Roger to a psychiatrist, and they said he was a
schizophrenic. He didn’t hear voices, which is one of the classic symptoms
of schizophrenia, but he’d think people were talking about him all the time.
He thought all his records were saying his name: Roger Stone, Roger
Stone, Roger Stone… “Just listen to this record,” he’d say. “Can you
hear it saying my name?” He was
always asking me to come and hear his records.
You’d have to listen carefully. “I
can’t hear anything.” “Listen
properly,” he’d implore, and you desperately wanted him to be happy; so you
tried hard to hear something, but after half an hour you’d lost patience.
I can’t tell you how many records I crushed over his head because I
just used to get so frustrated.
Roger
and Dadda always had rows and fights. My
father had been a boxer in the army; a blunt man who didn’t understand what
was wrong with Roger, and wasn’t sure whether a clip round the ear was the
solution. He just didn’t know how
to handle him. If Roger asked,
“What time is it, Dadda?” he’d reply: “Twenty past four.” But Roger
meant in the universe – what time is it in the universe?
He’d think Dadda was deliberately not answering correctly.
I can still picture Roger picking up a chair, about to crash it down on
my father’s head, until at the very last moment he put it down and said:
“Loan us a fiver, can you, Dadda?”
Eventually,
Roger was put into a community home. He
managed to get by, although he didn’t look like a man in control of himself:
the drugs made him look a bit wild-eyed, and he had a beard and became very big
because he had such a sedentary life.
He’d ring two or three times in the middle of the night and tell you to “piss off” until you’d feel absolutely vengeful. I’ve felt at times that I could have killed him, and I really mean that. If I’d had a gun I might have done. I felt so angry that he was upsetting the home, and my mother particularly. But the next call would be: “You do love me, don’t you Carole?” The truth is, I always felt a warmth for him. He was completely bewildered and tormented, and he wanted to be loved, wanted it to be right.
Mama
visited Roger two days each week. One
Thursday she found him slumped in the chair: he’d had a stroke.
He was taken to hospital, and died about three or four days later. If I’m really honest, it was a huge relief for me that Mama
didn’t have to worry about him any more.
Interview with Carole Stone by Danny Danziger,
The Sunday Times 2001
CAROLE STONE is a professional
party giver with over 14,000 names on her database. At one time she was in
charge of Radio 4's discussion programme Any Questions. She has
written a guide entitled "Networking - the Art of Making Friends"
published in 2000 by Vermilion at £7.99.
In her book she says:
"When I was growing up I was painfully shy. My problems, however,
were nothing compared to my brother Roger's. It was almost impossible to
persuade him to talk to people outside our family and he was difficult, often
surly company. He was later diagnosed as suffering from paranoid
schizophrenia.
It think it was Roger's condition that highlighted for me the tremendous
importance of friendship. Because of his behaviour we were given a wide
berth and I had to work really hard to get to know people who would tolerate his
outbursts."
Back to Sunday Times article.
|
