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Patient Protect
Support Help
Brief descriptions of other organisations, and Links. Listed here are organisations you are likely to come across. They range from the excellent to the completely useless.
Action on Elder Abuse
Age Concern
ALERT
APROP (Action for the Proper Regulation of Private Hospitals)
AVMA ( Action for Victims of Medical Accidents )
Bereaved Parents Group
British Geriatrics Society
British Medical Association
Campaign Against Hysterectomy and Unnecessary Operations on Women
Charter88
Constructive Dialogue for Clinical Accountability
Cheshire Age Concern Advocacy Project
CROP (Citizens' Rights for Older People)
David Glass Home Page
First Do No Harm
Freedom to Care
General Medical Council
Health Service Commissioner ( The Ombudsman )
Health Watch
Help the Aged
The Informed Parent ( Support / info for vaccination )
Inquest
King's Fund
Ledward Victims Group
Medical Accidents
Medical Ethics Alliance
Medical Litigation
MRSA SUPPORT
NHS-Exposed
NHSEXPOSE
NHS Codes of Practice
Patients' Association
Patient Information Leaflets
Patient UK
Public Concern at Work
Relatives' Association
Self Help UK
SIN (Sufferers of Iatrogenic Neglect)
UKCC (... for Nursing, Midwifery and Health Visiting)
VES (Voluntary Euthanasia Society)
Action on Elder Abuse
Astral House
1286 London Road
London
SW16 4ER
Telephone 0181 679 2628
Facsimile 0181 679 4074
Freephone 0808 808 8141 ( Response Line 10.00AM – 4-30PM . Weekdays )
Electronic Mail aea@ace.org.uk
Website: www.elderabuse.org
Action on Elder Abuse (AEA) exists to raise awareness of elder abuse by promoting research, collecting and disseminating information and encouraging widespread education about the prevention of harm to older. We run a confidential helpline, Elder Abuse Response, which provides information and emotional support for those involved when an older person is abused. Anyone can telephone 0808 8088141 each weekday between 10am and 4.30pm. There is a response in English, Welsh, Hindi, Urdu and Punjabi.
We define elder abuse as A single or repeated act or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person.
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Age Concern (The National Council on Ageing, Age Concern England)
Astral House
1268 London Road
London
SW16 4ER
Telephone 0181 679 8000
Facsimile 0181 679 6069
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ALERT.
The ALERT Carers' Group
27 Walpole Street
London SW3 4QS
Telephone 0171 730 2800
Facsimile 0171 730 0710
The ALERT Carers' Group was started by six women who are or have been carers for family members with a long term illness or disability, and who believe it is inhumane to end patients' lives by starvation and dehydration. Members of the group met in hospitals with their relatives, or came together through ALERT, which is opposed to any actions which are intended to end the lives of patients. They are campaigning for a new law to protect patients who cannot speak for themselves, and to prevent families being put under pressure to agree to withdrawal of food and fluids for financial reasons.
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APROP (Action for the Proper Regulation of Private Hospitals)
PO Box 418
Weybridge
Surrey
KT13 0FJ
Electronic Mail aprop@littleton.prestel.co.uk
APROP is a campaigning group. Dissatisfied patients and relatives should contact APROP at the above address. A website on private hospitals is planned.
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AVMA (Action for Victims of Medical Accidents)
Action for Victims of Medical Accidents (registered charity 299123)
44 High Street
Croydon
CRO 1YB
Telephone 020 8686 8333
Website www.avma.org.uk
Electronic Mail admin@avma.org.uk
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Bereaved Parents Group
C / O Chris and Lyn Askew
202A Prospect Road
Woodford Green
Essex
IG8 7NG
Telephone 0181 505 0117
Electronic Mail chris.askew@btinternet.com
Marilyn Haslewood and Geoffrey Nichol
Telephone 0132 241 0006
Chris Treleaven
Telephone 0191 488 0540
Electronic Mail christopher.treleaven@virgin.net
9 Bullfinch Drive
Whickham
Newcastle
NE16 5YL
Art and Vicky McConnell
Telephone 01235 523484
51 East Street
Helen Street
Abingdon
Oxford
OX14 5EE
"A doctor has no legal duty under the law to tell parents the truth when a child dies".
This group was set up in 1997 when bereaved parents amalgamated to campaign for accountability within the health service. Our aim is to obtain changes in the NHS Complaints System which ensure that when a child dies as a result of neglect or of negligent action there will be a mechanism which ensures a full and independent enquiry.
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British Geriatrics Society
1 St Andrews Place
Regent's Park
London
NW1 4LB
Telephone 0171 935 4004
Facsimile 0171 224 0454
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British Medical Association
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Campaign Against Hysterectomy and Unnecessary Operations on Women
C / O Sandra Simkin
Telephone 01483 715 435
Facsimile 01483 722 446
Electronic Mail sandra@cah-sspr.fsnet.co.uk
The Campaign was founded in 1995 to focus attention on unnecessary hysterectomies, caesarean sections and breast surgery performed on women in this country, and with the aim of achieving a Women's Medical Protection Act in Parliament to protect women's sexual organs from unnecessary removal.
We believe that the medical profession is out of control and has hidden behind 'clinical judgement' for years to prevent the outright abuse which has been the standard of treatment. Women are literally being robbed of their wombs and ovaries for no reason at all, unless simply to justify the funding and existence of doctors. Ninety percent too many hysterectomies are being performed in the UK - this his based on a scientific assessment of a New York gynaecologist, who has been campaigning against the gross overuse
of hysterectomy in the USA for 30 years.
The National Childbirth Trust and AIMS (Action for the Improvement of Maternity Services) has been campaigning for years against the high and unnecessary incidence of caesarean sections in the UK. Breast surgery, and full mastectomies for breast cancer instead of lumpectomies, is now a burgeoning business too. Genetic counselling is at the forefront of this.
Through all of these procedures women are being frightened into having major surgery on a 'what if' basis. The vast majority of these women are not ill in the true sense of the word - they are simply suffering the temporary effects of hormonal imbalance. Unfortunately there is no such thing as INFORMED CONSENT in this country. Doctors tell you lies and give you false statistics in
order to encourage you to accept their desired course for you. Many of the operations are procured to provided training opportunities for junior doctors - the President of the RCOG admitted as much to me at a private meeting.
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Charter88
18A Victoria Park Square
London
E2 9PB
Telephone 020 8880 6088
Facsimile 020 8880 6089
Website www.charter88.org.uk/democracy/index.html
Electronic Mail info@charter88.org.uk
Charter88 supports no political party. It is an independent organisation that has over 80,000 supporters that believe there is a better way to run this country. Charter88 believes that people should have as much say as possible about how they are governed and the choices made for them.
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Constructive Dialogue for Clinical Accountability
54 Alma Road
Clifton
Bristol
BS8 2HS
Telephone 0117 973 2925
Facsimile 0117 914 9025
Electronic Mail 101636.1720@compuserve.com
CDCA has arisen out of the four years constructive research and investigation undertaken into the state of paediatric cardiac surgery at the Bristol Royal Infirmary and the Bristol Royal Hospital for Sick Children pre 1995.
CDCA has been set up as a national lobbying group.
Its aims are simple and straightforward as follows
1) To lobby for an independent medical inspectorate
2) To debate the use of clinical audit as a tool of patient safety and clinical excellence
3) To call for a review of the clinical complaints procedure of the NHS
So far CDCA has attracted world-wide interest from both doctors and patient groups. It was clear that the situation In Bristol was not unique. Doctors have had clinical freedom to act as they please without regard for patient safety and without fear of being made accountable for their clinical decisions. Bristol has been an avoidable tragedy. It is littered with tragic stories of incompetent diagnosis, surgery and post-operative care.
Hundreds of families have seen their children suffer and die or sustain serious brain damage. The cost in human terms to these families is incalculable. The cost to the state in terms of unresolved grief, benefit payments, sick benefit and drugs administration is not known. In the wake of Bristol there has been an onslaught of other tragedies. The Rodney Ledward gynaecological disaster, the Harold Shipman murders, the Canterbury and Kent smear scandal, the CNEP trial on premature babies, to name but a few. In all of these cases patients lives have been destroyed .
What will it take to make the NHS accountable and open? How many more patients must suffer Incompetent medical intervention before the medical profession imposes on itself an independent statutory body designed to pick up doctors mistakes and deal with them efficiently to ensure the safety of the next patient? When a patient goes into hospital three basic questions need to be asked. Does this patient require medical intervention? Has the medical intervention resulted in patient benefit? Has the medical intervention made the patient worse?
At the GMC Inquiry Sir Donald Irvine asked Dr Stephen Bolsin how could they ensure that another Bristol didn't happen. Dr Bolsin replied with the words "Never lose sight of the patient". I believe that today's NHS has corporately lost sight of the patient, and thus it has lost sight of its own humanity.
What is the way forward?
There must be constructive ways forward to ensure patient benefit which at the same time reflects clinical excellence.
Clinical audit could be a powerful tool of change within the medical profession if it is used to keep sight of the patient. Conversely it can be used as a tool that appears to inspect standards of clinical care but in fact hides mistakes through statistical analysis, and is designed to do so in order to protect the status quo.
The wounds and scars, inflicted on the medical profession by its own members involved in these various tragedies, need time to heal. But how do we keep sight of the patient whilst this healing of the medical profession is taking place?
How do doctors learn to respect the patients they are dealing with when they are trained to intellectualise the condition or the disease and isolate it from the real person sitting in front of them?
I think doctors today need to be trained to engage with their own humanity and that of the patient. Positive change will only come about if the medical profession chooses to change its own unthinking patterns of behaviour and to step back and reflect. The age of paternalism is over, the age of partnership based on respect and equality is ready to take its place.
If you wish to contribute ideas to CDCA which would help the organisation to engender change based on patient benefit I would be only too happy to hear from you.
Yours sincerely.
Maria Shortis
Director CDCA
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Cheshire Age Concern Advocacy Project
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CROP (Citizens' Rights for Older People)
Ground Floor, East Wing
Barham Court
Teston
Maidstone
Kent
ME18 5BZ
Telephone 01622 812 228
Citizens' Rights for Older People, better known as CROP, is a free confidential advisory service for older people in the Mid Kent Health Area. We help older people to challenge decisions they do not agree with which have been bade on their behalf. We enable older people to make informed choices by seeking out all the options and presenting them to the client. The client is then able to decide on key decisions or issues that affect their lives.
Jan Price, Project Co-ordinator.
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David Glass Home Page
Facsimile 01483 740 100
Electronic Mail DavidG7429@aol.com
Website www.members.tripod.com/davidglass1
This site documents a mother's ongoing struggle with doctors who believe that her son should be killed with diamorphine.
It is a year ago that Carol Glass and members of her family took positive action to resuscitate her son David following the decision of the doctors and chief executive of Portsmouth Hospitals NHS Trust to administer diamorphine to David against his mother's wishes and without the sanction of the court. Although not terminally ill the doctors said it would be in David's 'best interests to allow him to die.........' .
As a result of the family's actions in saving David, the Portsmouth Hospitals NHS Trust sought an injunction against them which bars them from being on hospital premises except in the case of individual emergency treatment. They are not allowed to visit any relatives or friends who may be treated at the Trusts hospitals. Carol can visit David only (if he is ever taken there again). David's sisters can only visit David but no more than two of the very immediate family can be present at any time.
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First Do No Harm - Doctors Who Respect Human Life
P.O. Box 17317,
London
SW3 4WJ
Telephone +44 (020) 7730 3059
Facsimile +44 (020) 7730 0818
Website www.donoharm.org.uk
Electronic Mail enquiries@donoharm.org.uk
'FIRST DO NO HARM' is a doctors' action group, formed to oppose the current campaign for euthanasia and to celebrate the fiftieth anniversary of the World Medical Association’s “Declaration of Geneva" of 1948, the reformulation of the Hippocratic Oath. In this a doctor promises:
"The health and life of my patient will be my first consideration."
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Freedom to Care - Liberating the Professional Conscience
FtC, C / O Porter-Williams
Greenhaven,
Halfway Lane,
Dunchurch,
Rugby
CV22 6RD,
United Kingdom
Electronic Mail mailto:freedomtocare@aol.com
Website www.freedomtocare.org
Promotes the expression of social conscience in the workplace, public accountability, ethics at work and supports whistleblowers and whistleblowing.
Provides free information on professional ethics, bullying at work, corporate responsibility, social and ethical accounting and auditing - especially in health care, nursing, social work, police, financial services, education, science and environment.
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General Medical Council
178 Great Portland Street
London
W1N 6JE
Telephone 0171 580 7642
Facsimile 0171 915 3641
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(Office of the ) Health Service Commissioner for England, (The Ombudsman)
Millbank Tower
Millbank
London, SW1P 4QP
Telephone 0171 217 4000
Facsimlle 0171 217 4000
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HealthWatch
Box BM HealthWatch
London WC1N 3XX
UK
Telephone . Facsimile 020 8789 7813
Electronic Mail Michael.E.Allen@btinternet.com
Website www.biochem.ucl.ac.uk/~dab/healthwatch.html
Newsletter tandmpayne@aol.com
HealthWatch promotes:
* The assessment and testing of treatments, whether 'orthodox' or 'alternative';
* Consumer protection of all forms of health care, both by thorough testing of all products and procedures, and better regulation of all practitioners;
* Better understanding by the public and the media that valid clinical trials are the best way of ensuring protection
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Help the Aged
St James's Walk
Clarkenwell Green
London
EC1R 0BE
Telephone 0171 253 0253
Facsimile 0171 490 3463
Electronic Mai info@helptheaged.org.uk
Electronic Mail hta@dail.pipex.com
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The Informed Parent
PO Box 870
Harrow
Middlesex
HA3 7UW
Telephone . Facsimile 0181 861 1022
Shouldn't the after-effects of childhood vaccination be discussed before?
It'd make sense wouldn't it ? Yet sadly, there's a lot that parents aren't told.
For instance, you might think that it was vaccination that eradicated many of the ailments, like whooping cough and measles, that used to plague us in the early years of this century. However, it's an established fact that improvements in nutrition, housing and public sanitation were chiefly responsible for bringing these diseases under control.
You might think, that apart from a few tragic cases, side effects from vaccinations are minor and short lived. Again, this isn't the case. A growing number of health professionals now believe that vaccination could be linked to a host of maladies including cot deaths, leukaemia, debilitating neurological illnesses and a drastic weakening of a child's immune system.
You probably think that the one person you feel you can trust in this debate is your family doctor. While no one is suggesting that he or she would deliberately mislead you over vaccinations, doctors are under a lot of pressure to toe the official line. History has shown that the medical establishment is far from immune to making mistakes. Yet doctors who raise doubts about the effects of vaccination face official censure, or worse, from their professional bodies.
Then there's the money. Doctors who achieve between 70% and 90% take-up rate for vaccinations qualify for a financial bonus. Below that and they get nothing. Of course, big drug companies have an even bigger interest in vaccination. They make millions of pounds a year from it.
Vaccination, in short, is big business.
At The Informed Parent we think you are entitled to the independent information that will help you to make up your own mind, and that vaccination should be no one's business but you own.
Please contact The Informed Parent for more information or details about becoming a member.
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Inquest
Ground Floor
Alexandra National House
330 Seven Sisters Road
Finsbury Park
London
N4 2PJ
Telephone 0181 802 7430
Facsimile 0181 8027450
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The King's Fund
11-13 Cavendish Square
London
W1M 0AN
Telephone 0171 307 2400
Facsimile 0171 307 2801
Electronic Mail web@kehf.org.uk
Website www.kingsfund.org.uk/
The King's Fund is an independent health charity whose goal is to support the health and health care of the people of London. It aims to achieve this by influencing health policy and stimulating good practice in service provision. Its work is based on evidence of need and a commitment to the values of social justice and public service. It is independent of Government and all other political or special interest groups.
The King's Fund has a wide remit in the health and social care field. Although its primary concern is London, this is not viewed in isolation. The King's Fund works across the UK and internationally to tackle problems, promote mutual learning and disseminate new ideas. Its activities include grant-giving, policy research, service development and audit programmes, and information and education services for people working in and with the health service.
For more information about any of the activities of the King's Fund, please
call Andrew Bell on
Telephone 0171 3072585
Electronic Mail A.Bell@kingsfund.org.uk
The King's Fund website has a large list of related organisations at
Website www.kingsfund.org.uk/links/default.htm
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Ledward Victims Group
C / O Mrs Janet St Pier
Honorary Secretary
85 Church Meadows
Sholden, Deal
Kent
CT14 9QZ
Electronic Mail janet.st.pier@ukgateway.net or janstpier@aol.com
The Ledward Victims Group is hoping to achieve the following:
* To establish why an incompetent surgeon was allowed to carry out surgery for 16 years.
* That a "vetting" procedure is put in place for all doctors/surgeons, and that there is a governing body set to review doctors/surgeons on a regular basis.
* There should be "freedom" to all medical staff to speak of any concerns or observations they have about senior colleagues without fear of reprisal.
* There should be an easier way for a patient to complain without being fobbed off.
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Medical Accidents
IFBQ
Unit 6
The Oaks Business Village
Revenge Road
Lordswood
Kent
ME5 8UD
Electronic Mail ylindridgeifbq@aol.com
Website www.medical-accident.co.uk/frames.htm
Our aim is -
To support all patients and to work with you to reduce medical accidents through
information sharing and education
Support is a 2-way process
We want to help you, but we need you to help us with
information, and pinpointing our priorities
We believe that all patients have the right to:
Be listened to
Be respected
Have a say in their own treatment
Be kept informed of all options
Be treated by healthy, competent medical personnel
Be treated in hygienic conditions
Be treated in well-managed organisations
We are a patient-led group; we apply business-accepted processes, standards and solutions
to medical concerns
Our approach is caring and supportive. Our aim is to fund our services to patients at minimal
/ no cost to the patient
We have been successful in business through our approach, and wish to help others have a
better quality of life
This initiative was launched by Yolande Lindridge; her intervention and approach to medical
issues affecting her and her family led to:
Her son having the best quality of life available to him
Containing her own breast cancer over 7 years without the intervention of drugs
Improving dramatically her osteo-arthritis over 11 years without the intervention of drugs / surgery
Her mother having a better quality death than that which was on offer to her
Saving her own life in hospital
She must be doing something right!
WE WANT TO USE OUR EXPERIENCE AND APPROACH TO HELP YOU.
WE NEED YOU TO TELL US ABOUT YOUR EXPERIENCES, GOOD AND BAD.
Please feel free to E-mail us if you have any queries or if you would like further
information.
All information received will be dealt with confidentially.
Together reducing the risks for patients
Copyright (c) IFBQ, 2000
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Medical Ethics Alliance
Springhill House
Springhill Lane
Wolverhampton
WV4 4TJ
United Kingdom
Facsimile +44 1902 340100
Electronic Mail info@medethics-alliance.org
Website www.medethics-alliance.org
Medical Ethics Alliance is a non-profit making organisation and has been established to promote pro-life policies
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Medical Litigation
www.medneg.com is subscriber based and the annual fee is ￡120 plus vat (￡141). Our case database, and all other data bases as described below are only available to subscribers.
Established in 1998, is now used by most clinical negligence practitioners, including the NHS Litigation Authority, who enjoy the following unique benefits:
· a Confidential Index of over 1,000 experts under specialities who have testified in open court with relevant judicial comment - updated monthly;
· fast law reports, based on official transcripts, with full analytical headnotes, tables of cases and indexes prepared by experienced members of the Bar.
· authorities considered, applied, distinguished, overruled and otherwise judicially considered;
· indexes of over 1,200 practising lawyers with direct links to reported cases in which they have appeared - and the results;
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MRSA SUPPORT
46 Great Stone Road
Northfield
Birmingham
B31 2LS
Telephone 0121 476 6583
Electronic Mail info@mrsasupport.co.uk
Website www.mrsasupport.co.uk
The number of cases of MRSA is likely to rise to more than 100,000 over the next 12 months. To date, around 7,000 patients have contracted MRSA each year in hospital and 5,000 die each year as a direct cause.
MRSA SUPPORT
* Formed to provide practical and moral support to all involved.
* Most patients don't know that they have been infected and then when informed don't know what to do!
* Most hospitals call MRSA an "infection" without telling the whole truth.
* As well as offering immediate help, in conjunction with HAIR (Hospital Acquired Infection Register) we shall campaign for a cleaner approach to hospital hygiene.
Members of MRSA SUPPORT have published a booklet aimed at helping hospital patients and visitors to defend themselves from picking up the MRSA bug. Compiled by their chairman Tony Field, the booklet entitled "MRSA - A PATIENT'S DEFENCE!" outlines practical steps which can be taken to help prevent the spread of the deadly infection.
The booklets cost ￡1.00 (including postage).
To join the group; the annual subscription is ￡7.50 (this includes the booklet and 10 newsletters).
Please make cheques payable to MRSA SUPPORT (Please remember to include your name and address. Thank you.)
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NHS-Exposed
For further information and assistance, please contact :
Dr. Rita Pal,
Racial Equality 2000,
P.O. Box 8553,
Sutton Coldfield,
WEST MIDLANDS.
B76 2BS
Telephone (Mobile) 07788 944 982
Electronic Mail racialeq2000@nhs-exposed.com or nhs-exposed@btinternet.com
Website www.nhs-exposed.com/index.html
The truth behind the white coat - a campaign for individual rights within the NHS.
Extract from the website To experience the working environment of the NHS today means having to compromise on the ideal healthcare and to throw away personal altruistic beliefs about human life. Financial constraints hits the workforce on every side. The nursing staff are the main casualties of the NHS today - bed crisis means nurse crisis.
Nursing workload is far greater during shifts oncall - having to do the work of three individuals on a shift because of cutbacks. No replacements for long term absent or retired staff ; no incentives and paid badly for the high standard of work that is required for every patient. Excessive work schedules unfit for any person by European working standards.
As a junior doctor I was forced to work extra hours without extra pay or gratitude; ordered by management to clerk additional patients that had been on waiting lists for many years (without contractual job obligations) ; forced to watch treatment being withdrawn on the elderly because "we are short of beds" and having to stay ? silent ? for fear that your career maybe ruined. I have worked under conditions where there were no intravenous lines available to provide basic fluids , no drip sets on the wards , an inadequate number of nursing staff ratio so that daily observations could not be done and patients left to die.
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NHS EXPOSE
www.nhsexpose.co.uk
This Website Is One Individual's Attempt To At Last Tell The Truth About The "Real NHS" And The "Silent Pressure" That Exists Within The Service Which Prevents People From Revealing The Facts About Today's NHS.
My Name Is Ian Perkin And I Told The Truth About The Fiddling Of Cancelled Operations At St George's Hospital In October 2001 And About The Dire Financial Situation Of That Same Hospital Trust To The External Auditors Pricewaterhouse Coopers In July 2002. As A Result, On The 29th July 2002, I Was Asked By The Chief Executive To Resign From My Post As St George's Finance Director.
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NHS Code of Practice on 'Openness in the NHS
This NHS Executive website outlines the Codes of Practice and provides information on what information NHS Trusts are obliged to provide.
Website www.doh.gov.uk/nhsexec/codemain.htm#codeprinciple
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Patients' Association
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Patient Information Leaflets
Website www.mentor-update.com
PILs has a huge self help database
(choose text only version if you have problems accessing the self help database)
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Patient UK
Website www.patient.co.uk
This is a UK website, aiming to help non-medical people find information about health issues primarily from UK sources. Health professionals may also find the information useful. Many useful organisations listed here.
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Public Concern at Work
Suite 306
16 Baldwins Gardens
LONDON
EC1N 7RJ
Telephone 0171 404 6609
Facsimile 0171 404 6576
Electronic Mail whistle@pcaw.demon.co.uk
Public Concern at Work promotes accountability and good practice in
the workplace. We do this by helping ensure concerns about serious
malpractice are properly raised and addressed before the public interest
is harmed. Recognised by the UK government and others as the leading
organisation in this field, we are a completely independent charity.
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Relatives Association
Telephone 0171 916 6055
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Self Help UK
Website www.self-help.org.uk
Self Help UK provides a searchable database of over 1,000 self help organisations and support groups across the UK that offer support, guidance and advice to patients, carers and their relatives
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SIN (Sufferers of Iatrogenic Neglect)
SUFFERERS of LATROGENIC NEGLECT
Iatrogenic = Medically Induced Damage
For information please contact either Co-Director:
Gillian Bean
Telephone . Facsimile 0115 9431 320
Electronic Mail sinfo@cwcom.net
or
Margaret MacRae
Telephone . Facsimile 0192 4407195
Electronic Mail Mag@sinfo.freeserve.co.uk
Website www.sin-medicalmistakes.org
SIN is a pressure and support group for victims of poor medical care and their relatives who wish to improve standards in the NHS.
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UKCC (United Kingdom Central Council for Nursing, Midwifery and Health Visiting)
23 Portland Place
London
W1N 4JT
Telephone 0171 6377181
Facsimile 0171 4362924
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Voluntary Euthanasia Society
13 Prince of Wales Terrace
London W8 5PG
Telephone 0171 937 7770
Facsimile 0171 376 2648
Electonic Mail info@ves.org.uk
Website www.ves.org.uk/index.htm
The Voluntary Euthanasia Society campaigns for wider choice at the end of life. As well as our political campaign to legalise assisted dying, we also supply living will forms for the advance refusal of medical treatment.
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Your Turn – Campaigning to prevent pressure sores
Website www.your-turn.org.uk
Fact: One in five patients in UK suffers avoidable pressure sores.
Fact: Up to 4% (￡4 billion) of the NHS budget is absorbed by pressure sore related events.
If you visit the website you can register and receive details of how you can help prevent the preventable.
Books and other publications.
(Most recent first)
* Don't Tell The Patient - Behind the Drug Safety Net
* Death by HMO: The Jennifer Gigliello Story
* Dark Cures: Have Doctors Lost Their Ethics?
* Problem Doctors: A Conspiracy of Silence.
* Trust me (I'm a doctor).
* Who cares about the health victim?
* Medical Litigation
* Regulating Medical Work.
* "Trust me - I'm a Doctor" Understanding and Surviving Modern Health Care
* Death, Dying and the Law.
* Whistleblowing in the Health Service.
* Setting Limits. Medical Goals in an Aging Society.
* The Treatment You Deserve.
* Law and Medical Ethics.
* Rationing in Action.
* Whose Standards? Consumer... Standards in Health Care.
* Hospitals in Trouble.
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Title: Don't Tell The Patient - Behind the Drug Safety Net.
Author: Bill Inman
Date: 1999
Publisher: Highland Park Productions
ISBN: 0-9675812-0-6
Extract from sleeve notes:
A controversial account by an 'insider' who has been involved with drug development for more than forty years. It is a book for patients (most of us) though some doctors may get the message.
The climax of the story is Bill Inman's ten-year campaign against the exploitation of patients' trust in doctors who are bribed by drug companies to take part in 'safety assessment' studies which are nothing more than promotional exercises. Thousands of patients continue to have their drugs changed unnecessarily without their informed consent. The Department of Health condones this practice because of its commitment to support the drug industry
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Title: Death by HMO: The Jennifer Gigliello Story
Author: Dorothy Cancilla
Date: 1999
Publisher: Dedicated Press
ISBN: 0-9671922-0-X
(HMOs are the American equivalent of NHS Trusts in the UK)
Extract of review by Kismet Oz:
Perhaps there is no greater regret than when you choose one direction over another, then at the end of a long and difficult journey you realize you've made the wrong decision and paid the ultimate price. This is precisely what happened to Jennifer Gigliello and her family, when Jennifer was only twenty-two years old and experienced medical problems during her pregnancy. She relied on a medical system that was supposed to deliver appropriate care and have the right answers, but instead caused her to become chronically ill and then abandoned her because she was no longer cost effective. In Death by HMO: The Jennifer Gigliello Story, a powerful story is shared which serves as a lesson to all who read it. Unfortunately, this story could happen to anyone or their loved ones.
Death by HMO was not written for vindication. The author, Dorothy Cancilla (Jennifer's mother), writes with strong conviction that their family story should never have to be repeated. She advises readers to take full responsibility for their own care and for the care of loved ones at a time when it is more profitable for HMOs to allow chronically ill patients to die rather than to care for them properly.
The full review is available at www.deathbyhmo.com/KismetOz.html
There is also a Death by HMO web site at:
www.deathbyhmo.com
Death by HMO is available in hardcover for US$24.45 (includes shipping & handling. Order from: Dedicated Press, Box 1638, Pacifica, CA 94044.
For more information about Death by HMO, or to schedule an interview with Mrs Cancilla, the Email address is: mailto: deathbyhmo@hotmail.com or call Cathy Thornsberry at + 1 650 7383697
Orders may be placed at www.deathbyhmo.com/orderform.html
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Title: Dark Cures: Have Doctors Lost Their Ethics?
Author: Paul deParrie
Date/Ed: 1999
Publisher:
ISBN: 1563840995
Dark Cures deals, from a Christian viewpoint, with the deterioration of the value of human life within the medical community -- and how that deterioration can affect you and your loved ones. In fact, the most dangerous place you can be is in a hospital at a time when you are "non-responsive", comatose or deeply unconscious. The information in Dark Cures will help you to prevent you or your loved ones from being "non-treated" to death by the doctors whose ethics have been subverted by a "cost/benefit" paradigm.
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Title: Problem Doctors: A Conspiracy of Silence
Authors P Lens, G van der Wal.
Date/Ed: 1999
Publisher: IOS Press
ISBN 90 5199 287 4
About understanding problem doctors and helping the profession find better ways to help them and protect the public, the patients. How can we select better doctors in the future. And if everything fails, is outplacement possible?
Hardback: 284 pages - Price: ￡45.
Van Diemenstraat 94,
1013 CN,
Amsterdam,
Netherlands.
Telephone + 31 20 6382189
Facsimile + 31 20 6203419
Electronic Mail market@iospress.nl
Website www.iospress.nl
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Title: Trust me (I'm a doctor).
Author: Dr Phil Hammond
Date/Ed: 1999
Publisher: Metro Books
ISBN: 1 900512 60 0
Review:
Remaining Constructively Sceptical
Dr Phil Hammond is unashamedly open about his profession. He provides a rare insight into the dark side of medical culture and training. As patients we can sometimes experience an overwhelming pressure to keep quiet and hand over our health care lock, stock and barrel to the doctor sitting in front of us. Doctors may want to do their best for every patient they meet, but in this book Hammond reveals to us a real human tapestry against which failure and mistakes occur routinely and unsurprisingly given the historical background, culture and initiation rites of medical students. It is a sad tale and it needs changing not only for the well being of patients but for the well being of doctors too. His message is like a clarion call to the public. Inform yourselves, remain constructively sceptical, and take responsibility for your health care. Above all do not be afraid to ask questions. If you don't know which questions to ask Dr Hammond has thoughtfully provided a list for you. There is also a message to the Royal Colleges. Open your eyes and end your culture of cover up and secrecy. Regulate your profession prospectively, be accountable for your mistakes. Patients do not expect you to be GOD, they expect you to give them clear, real answers to the difficult questions they ask, so they can make informed choices which maintain their self-respect and dignity. Next time you are
in a hospital as a patient make sure you have access to this book. It will act as a powerful advocate of your well-being and give you a measure of autonomy.
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Title: Who cares about the health victim?
Author: John Elder
Date/Ed: 1998
Publisher: Klaxon Books
ISBN: 0 9534604 0 1
Book release information:
An uncomplicated, comparative 'inside' into health service complaints procedures, compensation schemes, patients' rights and disciplinary mechanisms in the developed world, with a critical yet objective focus on the UK systems.
Published in December 1998, this book is the first and only publication - and that includes the press and broadcasting as well - to disclose the undiluted facts about the NHS Complaints Procedure and how it works in practice, and describes the complaints mechanisms in another ten advanced countries. Equally unique, is the detailed information provided about patients' rights policies, compensation mechanisms and medical disciplinary practices, not only in the UK but also in these other developed societies.
The emerging picture is intensely revealing and suggests that our citizens are missing out in justice in these areas concerning health care compared with some nations. Exposed is the congenital flaw of internal investigation and self regulation regarding the complaints process and medical disciplinary bodies, respectively, and the immensely difficult route for compensation claims in Britain.
What is more, Who cares about the health victim? is the result of the first independent research into the subject of health complaints and associated health issues. Its publication has been especially timely, coming at a point when focus on these aspects relating to the health service has been particularly acute, to the extent that the Government is presently looking at the question as a matter of some urgency.
The book takes an uncomplicated look at the 'big picture', the detailed procedures as they currently stand, why they are in need of vital change and where significant lessons can be learned from the advances made in other developed societies.
Who cares about the health victim? and its author featured in the series of broadcasts by BBC Radio 4's 'You and Yours' programme earlier this year which focussed on the NHS Complaints Procedure, medical negligence and connected areas. The revelations in the book were introduced strongly in this latest Radio 4 review of these issues concerning the health service. It comes as no surprise, therefore, that this unique book is already successful and in circulation throughout United Kingdom, and has also reached many destinations abroad.
ESSENTIAL READING FOR THE PUBLIC, HEALTH CARE PROVIDERS AND PRACTITIONERS, PATIENTS' GROUPS, LEGAL PROFESSIONALS, AND A MUST FOR REFERENCE AND COMMUNITY LIBRARIES.
To Order: Send GBP6.95 (+ GBP1.50 if overseas) to:
Klaxon Books,
PO Box 24,
Chepstow
NP16 6XS,
UK
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Title: Medical Litigation
Editors: Geoffrey Hall and Charles Lewis
Published monthly
ISSN: 1461-5738
"A concise and comprehensive review of medical negligence cases and issues, with practical analysis and comment"
Annual subscription ￡75
Telephone 01494 772275
Facsimile 01494 793098
Email: info@medneg.com
P O Box 269,
Chesham, HP5 2GA
Also, for ￡120 (+ VAT) annually, you can have access to their databases which include full text law reports with headnotes and unlimited downloads. Good for finding solicitors, experts and what your local hospital has been getting up to. Check out the site free (minus the full text bits) at http://www.medneg.com
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Title: Regulating Medical Work
Author: Judith Allsop and Linda Mulcahy
Date/Ed: 1996
Publisher: Open University Press
ISBN: 0 335 19404 4
Publisher's notes:
This book examines the formal and informal regulation of medical work in the British health service. It asks what regulation is for, what systems of rules control medical work and how they are used in practice.
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"Trust me, I'm a Doctor" Understanding and Surviving Modern Health Care
Author: Thomas L Minogue
Date: 1996
Publisher: Medical Communications
ISBN: 0-9654891-0-8
Extract:
Like other caregivers, physicians enter into a collective and unconscious pact with society. Doctors want the power and prestige of their elite profession, laying claim with some validity to a task that they propose only their select members can perform. Society wants care which will be virtually perfect, yet not be too significant a drain on its financial resources or personal energy. People want protection from their vulnerabilities. Even if our society realises all this isn't possible to the desired degree, it will settle for a covenant that doctors will maintain the fantasy.
Society fulfils its part of the bargain by setting physicians apart with only minimal hassle - a little regulation, an occasional malpractice suit, a few spurts of bad press. Physicians promise what they can't deliver - an aura of availability, essentially limitless expertise, and consistent curing. The deal is struck. The doctors are satisfied and society gets a poor facsimile of the care it bargained for - or perhaps, deserves.
Extract from sleeve notes
Now, more than ever, understanding our changing health care system can literally mean the difference between life and death.
An experienced knowledgeable physician explains in straightforward language:
How hospital and doctor services are really delivered
What doctors are like beneath their "god-like" image
A method for evaluating your care
What answers you'll want during a doctor's appointment
A dozen practical steps you can take today towards better care
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Title: Death, Dying and the Law
Author: Sheila McLean
Date/Ed: 1996
Publisher: Dartmouth Publishing Company
ISBN: 1 85521 657 4
Publisher's notes:
Issues surrounding the end of life, and in particular questions of patient choice, have seldom been so high on the legal, ethical and political agenda. This interest has both a UK and an international dimension. Death, Dying and the Law highlights the legal and ethical dilemmas surrounding this issue from a comparative perspective and draws some conclusions about the role of the doctor, the individual and the law-makers in this moral minefield.
Part I; Law and Ethics at the End of Life:
The Practitioner's View, Nicholas Pace
Managing Patients in a Persistent Vegetative State since Airedale NHS Trust v Bland, Bryan Jennett
Are Advance Directives Really the Answer? And What was the Question? Ann Sommerville
Law at the End of Life: What Next? Sheila McLean
Part II; Safeguards for Physician-assisted Suicide:
The Oregon Death with Dignity Act, Cheryl Smith
Physician Assisted Suicide: A Social Science Perspective on International Trends, Barbara Logue
Voluntary Euthanasia: The Dutch Way, Pieter Admiraal
The Way Forward? Christopher Docker
Death and Dying: One Step at a Time? JK Mason
To order www.euthanasia.org/ddl.html
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Title: Whistleblowing in the Health Service. Accountability, Law & Professional Practice.
Author: Geoffrey Hunt
Date/Ed:1995
Publisher: Edward Arnold
ISBN:0-340-59234-6
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Title: Setting Limits. Medical Goals in an Aging Society, with "a response to my critics".
Author: Daniel Callahan
Date/Ed: 1995
Publisher: Georgetown University Press
ISBN:0-87840-572-0
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Title: The Treatment You Deserve.
Author: Dr Iain Robertson-Steel
Date/Ed: 1994
Publisher: Elliot Right Way Books
ISBN: 0-7160-2033-5
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Title: Law and Medical Ethics.
Author: Mason and McCall Smith
Date/Ed: 1994, 4th Ed.
Publisher: Butterworths
ISBN:0-406-02478-2
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Title: Rationing in Action
Author: Richard Smith, Editor, BMJ
Date/Ed: 1993
Publisher: BMJ Publishing Group
ISBN: 0-7279-0813-8
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Title: Whose Standards? Consumer and Professional Standards in Health Care.
Author: Charlotte Williamson
Date/Ed: 1992
Publisher: Open University Press
ISBN:0-335-09720-0
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Title: Hospitals in Trouble
Author: J.P.Martin
Date/Ed: 1984
Publisher: Basil Blackwell Publishers Ltd
ISBN: 0-85520-762-0
Extract from the introduction:
This is a book about failures of caring in hospitals. It seeks to illuminate the problem posed by the question, How is it that institutions established to care for the sick and helpless can have allowed them to be neglected, treated with callousness and even deliberate cruelty?
There is no simple explanation for this paradox. Individual psychopathology may have a part, but the issues are both broader and deeper. They are broader in that much turns on the attitudes of society to its weakest members, and the resources assigned to their care; they are deeper in that what may occur is a perversion both of individual motives and of social institutions.
The past 15 years [written in 1983] have seen both a series of major scandals, with at least ten inquiries of national significance, and a whole string of lesser ones involving local inquiries, TV programmes and press campaigns of various kinds....Even as this book was being finished in early 1983, The Times carried on its front page a story of neglect and inadequate care in several hospitals for the mentally handicapped, and its long term reader might wonder how much has changed since 10 November, 1965 when it published the Letter to the Editor which led directly to the publication of Sans Everything and the ensuing revelations which have continued to the present day.
Definitions.
Many disputes and discussions drag on longer than they should because basic terms are not clearly understood and agreed at the outset. Some administrators actually use this as a way to avoid giving a clear response to your questions. Please note that the simple definitions below aim to be free of moral content - so for example the actual definition of the term 'euthanasia' should work whether you are pro- or anti- euthanasia; the real debate should be about whether it is right that terminal care is so appallingly bad in the UK, that some individuals choose euthanasia as their best option. Legal terms are based on the U.K. situation. Please contact me if you can offer any improvements to these definitions, suggest new terms for inclusion or wish to discuss any you do not agree with.
Consent: with consent (either express or implied) medical staff can do things to patients which if done by a lay person could result in a criminal charge for doing very serious bodily harm. This exception is based on the assumption that the treatment has therapeutic value for the patient. Consent is implied where the patient quietly accepts treatment without complaint.
Do Not Resuscitate: often entered in patients' medical records to indicate that a decision has been taken that if a life threatening emergency occurs, no action to reverse the situation should be taken. In theory, this decision should never be taken without consultation with the patient and/or relatives. Often coded as:
*'DNR' do not resuscitate,
*'not for CPR' (cardiopulmonary resuscitation),
*'NFR' (not for resuscitation),
*for blue card'
*'not for xxx' (where xxx is the internal telephone number for calling the resuscitation team).
Self adhesive stickers or pencil may be used in order to facilitate easy removal of the DNR decision from the permanent records.
Euthanasia: is the intentional killing of one human being by another (see Murder) where the motive for the killing is claimed to be for the benefit of the person killed (note there is a very big difference between intention and motive in the legal sense; intention – intending to do what you actually did - is usually an essential ingredient of an offence, whereas motive – the reason why you did what you did - only affects the level of sentencing).
Futile Treatment: One definition of futile treatment is treatment that cannot end unconsciousness or end dependence on intensive care.
Another definition of futile treatment is treatment that fails to improve a patient's prognosis, comfort, well being or general state of health.
Homicide: the killing of a human being by another human being.
Manslaughter: unlawful homicide which for some reason does not amount to murder.
Voluntary manslaughter results where the finding would be murder but for mitigating circumstances, e.g. provocation or diminished responsibility.
Involuntary manslaughter results where the intention required for murder is lacking, but where there is intention either to do something unlawful and dangerous, or to do something lawful but do it with a high degree of negligence.
Murder: intentional unlawful killing of a human being. An intention to cause really serious bodily harm can also satisfy the 'intention' requirement for murder.
Negligence: simply means lacking the proper degree of care. From a legal point of view, negligence is not so simple.
The criminal courts only get involved with negligence if it causes death (see involuntary manslaughter), and only then if the level of negligence is so high as to go beyond mere compensation between parties, and deserves punishment.
For the civil courts to consider negligence there must be some resulting loss which can be compensated in money terms. A defendant would only be liable for negligence where:
a) there was some duty to take care
b) there was a negligent breach of this duty
c) the negligent breach of duty directly caused a loss
d) the loss was foreseeable
e) the negligent breach of duty causing the loss must be the most likely cause of the loss where there is more than one cause.
Ordinary Treatment: all medicines, treatments and operations which offer a reasonable hope of benefit to the patient and which can be obtained and used without excessive expense, pain or other inconvenience.
Suicide: occurs when a person kills themselves. This is not an offence; neither is an unsuccessful attempt. Helping someone to commit suicide (in legal terms, 'aiding, abetting, counselling or procuring') is an offence, and may amount to murder.
Supply Driven Demand: a situation where staff do not ask for things which they know are not easily available.
Terminal Illness: an illness which, regardless of the use of life sustaining procedures, would produce death and where the use of these procedures only serves to postpone the moment of death