Golden Rules for Survival
Golden Rules, obtained from our learned colleagues, have been compiled for everyone's benefit by clinical pharmacologists, psychiatrists, an anaesthetist, a mental health nurse, a bereaved mother and other participants of APRIL's third conference November 2008. Our only comment is in italics at top of each submission of Golden Rules so please read, digest, and benefit from the wise advice below.
Golden rules 1.
Dr Andrew Herxheimer was a wise, caring and Internationally respected clinical pharmacologist who did many kind deeds to help some of the people who contacted APRIL
1. Get to know as much as you can about the medicines that have helped you.
2. Everybody is different, and you must learn how your own body reacts to medicines
3. Keep notes of your experiences with medicines - why you took it, how much, for how long, what happened & when: how well it worked, and anything you didn't like.
4. Unless you have a special reason, avoid medicines that are new. Stick to those about which a lot is known, from many sources, and which have been used for over 10 years. Bad news about a drug often takes years to emerge.
5. Before deciding to use a medicine, be clear whether it is
a) to relieve a symptom
b) to cure a disease, such as an infection
c) to remedy a deficiency
d) to prevent something
6. Think what you could do instead of using a medicine, eg, use a hot water bottle, go for a walk, have a comfortable bath, talk with a friend, take a rest.
7. Ask a doctor or pharmacist you trust how well the medicine works, what problems people have had with it, and what happened. You can also look up the drug on the internet and discuss what you find with someone who understands it a bit better than you do.
8. If something bad happens that you suspect might have been caused by a
medicine, report it on a Yellow Card www.yellowcard.gov.uk you can ask a doctor, pharmacist or nurse to help you do that, or do it for you.
Golden Rules 2.
Professor Heather Ashton is a world famous clinical psychopharmacologist and campaigner who developed the Ashton Manual to help those unfortunate people who found themselves addicted to benzodiazepine and similar drugs. Her Newcastle withdrawal clinic was a groundbreaking advance in caring for involuntary addicts.
10 questions a patient should ask if the doctor prescribes a drug
- Do I really need this drug?
- What exactly is it for?
- How does it work?
- What are the side-effects?
- Does it interact with other drugs I am taking?
- How long should I take it for?
- Is it addictive (dependence-producing)?
- Are there any withdrawal effects? if so, what are they?
- How effective is it for my condition?
- What will happen if I don't take it?
You should treat your doctor as you do the garage mechanic who services your car, after all, it is your body that the doctor is servicing
Golden Rules 3.
Dr Joanna Moncrieff (author of The Myth of the Chemical Cure) has expressed her concerns as a psychiatrist about labelling mental ill health being related to a so called 'chemical imbalance'.
Psychiatric drugs are psychoactive substances that create altered states that we do not fully understand
- beware of any drug that might have psychoactive properties. These drugs make you feel drugged in some way, they do not return you to normality.
- you need to find out what sort of drug-induced state a drug produces before you take it
- what sort of range of altered effects does the drug produce
- what are its withdrawal effects?
- how long do they last?
- and ask yourself- will you really be better off taking the drug as opposed to not taking it?
- Is it better to be drugged, or to face up to your problems and get other sorts of help?
Golden Rules 4.
Ten Golden Rules for Survival
Charles Medawar is recognised as a leading expert on the ills of the current situation regarding the safety of medicines. Author of Power and Dependence - Social Audit on the safety of medicines and Medicines out of control and assisted the Select Health Committee Inquiry into the Influences of the Pharmaceutical Industry
1 Be certain that we take for granted at our peril that health is the natural output of medical and pharmaceutical endeavour
2. Recognise that your own health depends overwhelmingly on the health of community
3. Take into account that your demand on the health care system generates deprivations for others, and vice versa
4. Understand that the treatment you get is increasingly the product of a system in which the doctor plays an increasingly marginal part
5. Familiarise yourself with the notions of paradox of progress and conspiracy of goodwill, to appreciate how readily we colectively deny that good may turn to bad
6. Study Ivan Illich and mark the difference between adverse drug reactions and iatrogenesis, in the fullest sense of that term
7. Read Lewis Thomas essay, The Health Care System, in The Medusa and the Snail - and try to feel fortified rather than overwhelmingly depressed.
8. Contemplate the root causes and complexities of both climate change and the current financial crisis, before dismissing the threat of Pharmageddon
9. Celebrate and utilise, but with the utmost discrimination, the best on offer from medicine, medicines and medical intervention
10. Trust and rely on your own judgement, notwithstanding your own levels of ignorance and the professed wisdoms of the media and drug establishment
Charles Medawar
Social Audit Ltd
Golden Rules 5.
Anaesthetics
Before your anaesthetic take a look at the Royal College of Anaesthetists web site and look at Patients section, Risks associated with having an anaesthetic, Risk information leaflets, Patients section 7 Becoming confused after an operation.
Golden Rules 6.
Adam Jhugroo - Coming off psychiatric medication
Adam is a nurse who works with psychologist Rufus May who has a web site to help people coming off psychiatric medicines.
Choosing to come off psychiatric medications should be your decision and your decision alone. After all, you are taking responsibility for the outcome of the withdrawal. - Once you have come to this decision it is essential that you plan how you will come off
- Pay attention to timing.
Think about the risks to your drug treatment and emotional health. Think about the advantages and drawbacks and choose the best option for you.
Coming off medication is a long term process - prepare as you would for any major life change.
- Be aware of other resources that could help you in this process and recruit people to support you in this medication reduction process.
Helpers / supporters can provide outside perspectives and offer feedback.
- Pay extra attention to you health
- Keep a diary commenting for yourself of how well the process is going.
- Balanced approach to health - good sleep, diet etc.
- Identify safe and supportive spaces
- Be prepared to feel strong emotions that withdrawing from medication may bring up:
- Expressive activities.
- Creative expression (e.g. Art, Painting, Drawing, Drama, Poetry, Music, Dance, Singing), Sport, Gym, Circuit training, Swimming, Journaling.
- Calming Remedies
Examples of strategies people have found helpful are, Relaxation, Meditation, Yoga, Tai Chi, Massage, Reflexology, Herbal Medicine, Bach Flower remedies, Homeopathy, Acupuncture, Spending time in nature, Walking.
- Find new ways of dealing with the difficult states of mind.
The problems that the medication may have been prescribed to address may also resurface. So it is important to deal with these, prior to during and after the withdrawal process. Journalling, talking with friends, support groups, counselling or therapy are all good ways to understand and process suppressed emotions and make sense of difficult thoughts and behaviours.
- Have a back-up plan should you run into obstacles
- Be committed.
Golden Rules 7.
Peter Walsh, Chief Executive
Action against Medical Accidents (AvMA)
1. Insist on knowing ALL of the known side effects of medication
2. Insist on being told of the alternatives to a proposed medication
3. Don't be afraid to ask questions
4. Have a friend, relative, or advocate with you when discussing risks and alternatives, as it is sometimes difficult to take it all in
5. If possible, take time out to reflect and go back to ask more questions
6. Do your own research on the web or through patients groups.
7. If you think a medication is causing harm seek immediate medical attention, and insist on your symptoms and possible links to the medication are taken seriously
8. Submit a 'yellow card' adverse reaction report to the MHRA
9. If lasting harm has been caused, get independent advice about your rights (for example, AvMA)
Peter Walsh
Chief Executive
Action against Medical Accidents (AvMA)
Golden Rules 8.
Clare Milford-Haven
Clare is the mother of James who died by suicide a few days following general anaesthetics and surgery)
1. If a person has recently had an anaesthetic and after a week is displaying signs of depression, confusion or irrational behavior, they should be seen by a doctor straight away.
2. Patient Confidentiality should be waived if there is a mention of suicide or self harm or intention to harm others. It is only right that the patient's family should be made aware of this to give them the chance to do their level best to prevent a tragedy.
3. If a person has never had an anaesthetic before or has behaved out-of-character following one, they should be monitored carefully following an operation.
4. Prescription drugs should be more safely monitored when someone is expressing suicidal thoughts.
5. There should be a campaign to introduce mental health education in schools along the lines of drugs/alcohol/sex education.
Golden Rules 9.
GOLDEN RULES FOR AVOIDING THE USE OF POISONOUS PSYCHIATRIC DRUGS
Dr Bob Johnson is author of Emotional Health
1. HUMAN RIGHTS are therapeutic, especially consent. Human Rights legislation takes precedence, in law, over Mental Health legislation time it did so in practice. Everyone is fully legally entitled to be treated with courtesy and respect as a human being whatever their current state of mind. The more they are, the saner they become.
2. NIHILISM Psychiatrists and especially medical students, must no longer be taught or continue to believe that psychoses are incurable; time they looked at the evidence both from the early York Retreat (1796-1850) and currently Soteria. This fixed established dogma needs updating. Every psychosis is episodic it comes and it goes. Abundant evidence for this is provided in Mad in America by Robert Whitaker,
3. GO BACK TO DSM-1 (1952) The Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, 1994 (DSM-IV), and its successor V, and predecessor III are bunk, based on Alice-in-Wonderland ignoring of psychiatric realities, except for PTSD, which contradicts the axiom in the preface claiming never to be reactive. DSM-1 (1952) is vastly saner, and needs re-instating 60 years moving backwards has to stop now.
4. DEFINITIONS Leg disease is easy to define it's when our legs won't go where we want. The same goes for mental disease the only definition we need is your mind not letting you do what you want i.e. goodbye DSM IV. Everyone wants to pull themselves together and equally everyone needs help with the bits they cannot do for themselves denial [see below] needs reversing.
5. RE-EVALUATE WHAT THE MIND IS FOR The mind is our social organ it is needed to support our complex social networks. Our cerebrums are enormous, as are those of whales, dolphins et al, who also thrive in social groups. Ergo injured minds respond best to truthful, trustworthy, warm, consensual and therefore non-threatening emotional support. It's common sense, it makes clinical sense, and it works.
6. DENIAL Denial comes directly from the standard response of any infant to trauma or abuse this isn't happening to me. They grow into adult life, and [sometimes] cannot then say this has stopped happening to me. When they can, the symptoms, indeed all psychiatric morbidity, evaporates.
7. TRUTH, TRUST AND CONSENT These are the watch words we all need for sanity, mental security and peace of mind. Truth is being as realistic as you can especially including all negative evidence, as in 2 above. Trust is the antidote to fear and terror. And consent is astonishingly effective in empowering the nervous. Never forget : parenting keeps infants alive and adults insane.
8. LOVABLE, SOCIABLE AND NON-VIOLENT this is how we are all born, and this is where we all aspire to be. We are none of us mindless, unfeeling robots, and it's time psychiatry took note. It's a problem of software not hardware we need more therapeutic optimism all round. Consciousness is the acme of our cosmos it's a miracle. So let's stop denigrating, curtailing or fearing it let's all enjoy it instead.
Dr Bob Johnson Monday, 27 October 2008
Consultant Psychiatrist,
AWARENESS SAVES LIVES
The Lottery Awards for All helped towards the cost of the 2008 conference for which we are grateful.