Support Groups – Self Help is the Best Help

Any serious illness causes considerable personal distress and anguish. To add insult to injury, you often feel isolated and cut off from the rest of the world, since most 'normal' people cannot understand what you are going through. While your doctor can provide you with the medical care you need, you often need emotional support as well, which very few doctors can provide! While friends and family members usually provide such support, often this is not forthcoming in the case of certain sensitive problems such as AIDS, infertility or cancer, making patients even more miserable. This is where support groups come in. Such groups bring together people troubled by the same problem in order to share emotional and moral support, plus practical information. Support groups traditionally meet face to face, but now many meet over the internet as well!

Support groups act as a complement to medical care - they definitely do not replace your doctor! The very act of sharing the emotional side of an illness and exchanging helpful advice can encourage recovery or simply make it easier to cope with your problems. For example, if you've just been diagnosed as cancer, you may hide having a your anxiety and fear from your family and friends to avoid upsetting them. In turn, to avoid saying the wrong thing, they may say nothing at all. These barriers of silence tend to melt into refreshing candour when you meet others who are coping with a similar burden. Similarly, if you're caring for someone with Alzheimer's disease, sharing your experiences with other caregivers can help you recognize that occasionally feeling resentful and sad is normal.

Many group members can often offer pearls of practical advice, which help you to cope better with your illness. For example, infertile patients need to take daily injections when undergoing in vitro fertilization (IVF) treatment. One patient discovered that if she applied a ice cube to the site before the shot, the area would get numbed, and the injection wouldn't hurt as much. She shared her knowledge with others in the group so that they could also benefit from her experience. Support groups also allow you to gain more control over your life because you can learn from others who have already been through what you are going through now. An additional bonus is that they can help you to find the best doctor or hospital for your particular problem, because you can learn from other member's experiences with various doctors - both good and bad !

Besides offering moral support, a good support group may actually help you live longer! Researchers from Stanford University and the University of California at Berkeley studied 86 women with advanced breast cancer for 10 years. They found that the women who joined a support group outlived those who did not by an average of nearly 18 months.

Support groups aim to achieve many goals. Primarily, they provide compassionate and informed help to people experiencing hardship and agony due to an illness. They can also help increase visibility about issues which concern them by educating the public and presenting their viewpoint through the media. In the US, many support groups act as powerful lobbies. For example, groups of parents of children with mental disability have been able to convince law-makers to pass legislation which prevents discrimination against disabled citizens. Many groups have also been successful in raising funds to help promote medical research into their disease. Others have published books and leaflets about the illness in order to disseminate information more widely, thus helping to dispel many myths and misconceptions about the disease among the general public.

Support groups help primarily because they make you realize that 'you are not alone'. The very process of being able to ventilate your feelings and to get and provide emotional support can prove to be a healing experience.

Try and identify a support group which contain a mix of veterans and newcomers at different stages of coping with an illness. People who have lived with health problems for years usually develop more insight and have more information to offer, while new 'entrants' offer another perspective. The group of your choice should consist of people with whom you feel comfortable, and leaders who empathize, by gently drawing out the shy members and keeping in check those trying to dominate. A good group should have a stable track record of meeting the needs of all members.

Not all support groups are reliable. Don't be fooled by groups that put their interests before yours. Avoid groups that: (1) promise sure cures and quick solutions; (2) urge you to stop prescribed treatment and recommend a single solution to your problem; (3) insist that you reveal private or sensitive information; or (4) charge high fees or compel you to buy certain products. Most support groups are free, or support themselves by collecting voluntary donations or charging modest membership fees to cover expenses such as refreshments or production costs of leaflets/brochures.

Many good doctors are happy to refer their patients to such groups. They realize that support groups provide valuable emotional support, which doctors, as busy professionals, simply cannot, because of time constraints. Unfortunately, misconceptions about support groups prevent many people from making use of this valuable source of help. Some patients become anxious that joining a support group might cause them to dwell even more on their problem, while others may feel that their illness is too private or personal or traumatic to share with a group of strangers. You may also believe that you can handle the crisis on your own. In reality, any serious illness is too traumatic not to share with others, and there is nothing wrong about reaching out for help. Such a step is definitely not a sign of weakness. A support group simply provides a safe, warm and supportive environment: you need never say a word if you don't want to.

Fortunately, Indian patients are now realizing the importance of networking amongst themselves, and, presently, many support groups have sprung up all over India for illnesses ranging from Azheimer's disease, cancer, infertility, muscular dystrophy, multiple sclerosis to thalassemia. However, a major problem in India is that the culture of self-help is still very new. Most patients are passively dependent on their doctors, and they still expect their doctor to do everything for them. Remember, however, that the more you help yourself, the easier it is for your doctor to help you!
Are you faced with an illness ? Rather than wallow in misery and feel sorry for yourself, you can put your experience to good use by starting a support group to help others who face the same problems. Remember, that helping others is the best way of helping yourself ! After all, if patients will not look after their own interests, then who will?

IVF - the best path to a baby for infertile couples ?

Patients and doctors perceive illness and treatment from completely different perspectives. Let's look at infertility, for example. Most doctors look at the world through a biomedical perspective. They want to diagnose the problem; and then come up with solutions to help the couple to conceive. This is traditional in medicine, where the first step is making a diagnosis; after which we create a treatment plan. Text books will talk in terms of treatments based on correcting an underlying problem; and will usually offer a sequence of treatment steps which progress from simple to complex; and less expensive to more expensive. This is the stepped care approach, which makes a lot of sense from a societal perspective.

However, the patient's perspective is completely different. They don't really care as to whether the reason they can't have a baby is because he has a low sperm count or she has blocked tubes. All they want is a baby, so they can move on with their lives.

This often creates a lot of tension between patients and doctors. From a patient's perspective, rather than waste time, money and energy on ineffective treatments which have a low success rate, it makes sense for them to move on directly to the treatment which gives them the best chances of success - and this is IVF - the final common pathway, which allows us to bypass all medical problems !

However, most doctors do not share this point of view. Many are not very empathetic and do not understand the emotional pain infertile couples suffer from. They would prefer taking a text book approach to the problem . Many are tied down by treatment guidelines published by Gynecology Societies or the government, which limits the options they can offer to patients.

Also, doctors often tend to be quite arrogant. They take the approach that they know what's best for the patient, because they are the experts; and often will not take the patient's viewpoint into consideration at all.

Let's look at a 35 year old couple who want a baby. They are very successful; very well off; and need a baby to complete their life . Traditionally, doctors would do a workup to find out what the problem is; and then start treatment to correct this problem. Unfortunately, this sort of approach can be very time consuming - and not very efficient. Patients will often get fed up - and they simply do not have the time or energy to keep on going back to the doctor for repeated followups, all of which exact an emotional toll. Not only is there the pain of failure; there is also the opportunity cost; and the waste of time. From a doctor's view point, this is par for the course, but I feel doctors need to be more flexible, and to tailor treatments to suit the patient's perspective.

For this couple, the bottleneck is much more likely to be the time and energy they can devote to their baby making project, rather than money. It would make much more sense to just do IVF for them to maximise their chances of having a baby quickly. Now I understand that a lot of doctors will feel this is too aggressive and is overkill. I used to think so myself. However, I now feel we should let the patient decide, rather than make decisions for them. If the trade-off is between time and money, many will decide to go for the most efficient route, even if this is more expensive, as this may be the most cost effective for them !

Not only are we saving the couple a lot of time by giving them a baby quickly by IVF; we are also helping to improve the quality of their parenting, so that they can spend quality time with their baby when they are young and have energy - rather than waiting till they turn 40 before moving on to IVF !

In a fee for service setting, I feel decisions as to which treatment option to explore are best left to patients, rather than to doctors. A good doctor will explain all the options to the patients; the trade-offs involved; and then allow the patient to decide for themselves !

Unfortunately, especially in the UK, most GPs are not very empathetic towards infertile couples; and they while away a lot of the couple's valuable years in ineffective treatments before referring them to a specialist. This represents hundreds of years of wasted opportunity and heartburn for thousands of infertile couples, causing enormous private pain .

The 1st clinic doctor convicted under the PHFSA » Malaysian Medical Resources

The 1st clinic doctor convicted under the PHFSA » Malaysian Medical Resources: "Medical practitioners in this country now face the wrath of pencil pushers who will not hesitate to fine or even jail those who do not comply with the PHFSA. I await the day to see a doctor who is jailed for not renovating his clinic to make sure his clinic toilet doors swing the right way or his ceiling is the “wrong height”.

When there are quacks, charlatans and bogus doctors running around the country, when there are tons of false advertising from the alternative health industry, don’t the authorities have better things to do?"

Things seem to be even worse in Malaysia than they are in India. However, knowing the efficiency of the Indian bureaucracy, I am sure we will catch up soon ! Patients are no longer important, as long as we can prove that the paperwork is fine !

Doctors get beaten up in Mumbai

Watch this and cringe !

If you are doctor, remember that it will be your turn tomorrow. " Ask not for whom the bells toll - they toll for thee !" If we do not stand up for each other, we will all fall separately.Today it was this innocent couple – tomorrow it will be some other doctor’s turn !

Unfortunately, doctors have lost their clout and professional standing because we do not have any unity.

Things will only get worse is what my fear is, as we abdicate our role.

If you are a patient, worry about how a doctor is likely to treat you if he has been manhandled like this. The doctor-patient relationship has gone to the dogs - and all of us are to blame, as we watch as silent spectators.

The cost of medical presenteeism

The cost of medical presenteeism: "The researchers, primarily from the Institute for Health and Productivity Studies at Cornell University and the health-information company Medstat, found that as much as 60 percent of the total cost of worker illness stems from ''on-the-job productivity losses'' -- exceeding what companies spend on medical and disability benefits and sick days. The biggest productivity drains, according to the study, are relatively benign ailments like headaches, allergies and arthritis. Another recent study, conducted by Walter Stewart, a health researcher, calculated that presenteeism costs American businesses more than $150 billion per year in decreased productivity."

The case for going straight to IVF. - By Sarah E. Richards - Slate Magazine

The case for going straight to IVF. - By Sarah E. Richards - Slate Magazine: "So it makes sense that some researchers are pushing to skip the middle step and go straight to IVF when the first-round effort fails. In a study presented last month at the annual meeting of the American Society of Reproductive Medicine, doctors from Dartmouth Medical School and Boston IVF concluded that women who were fast-tracked to IVF got pregnant three months faster on average, and spent $10,000 less than those who went through the usual preliminaries. These kinds of data may be just what the doctor ordered to get more insurers to cover IVF treatments."

Business Standard article

After a failed IVF cycle - what next ?

When an IVF cycle fails, it's important to analyse what happened; and what can be done to improve the chances for next time.

While the doctor needs to do a medical analysis for all the important biological variables ( were the eggs OK ? do we need to tweak the superovulation regime ? was the endometrium fine ? ) , the patient also needs to do some soul-searching.

How well did she cope with the cycle ? How physically stressful was it ? Emotionally ? Can she go through it again ? Is her husband willing to see her take all the shots and deal with the grieving if it fails again ? What if the next cycle fails again ? What is Plan B ? What's the most important goal - to get pregnant ? or to become a mother ?

Failing an IVF cycle is a crisis - which means it is both a danger; and an opportunity for further personal growth. How we deal with our personal crises is a reflection of our personal maturity - and what does not kill you, makes you stronger !

The problem with being a medical expert

We are one of India's leading IVF clinic, and are considered to be IVF experts. While this is very gratifying, this done have a downside as well. These days, we often find ourselves treating the very difficult patients - couples who have been refused treatment by other infertility doctors; or those who have failed multiple IVF cycles at other clinics.

These are challenging patients, and we enjoy treating them, but the fact remains that they have a poor prognosis, because of medical factors which are beyond our ability to influence.

Life was much simpler in the past, when most of our patients were younger, with simpler medical problems; and easy to treat.

I guess this is the price we pay for progress !

Patients , Doctors and unrealistic expectations

One of the biggest problems in infertility treatment is that patients have unrealistic expectations of the technology - and unfortunately, doctors do not spend enough time counselling them to correct these.

We see many patients who have done an IUI cycle, and then got very upset when the cycle failed, even though the "follicle ruptured; the sperm were great; and the doctor was very happy" !

Patients need to remember that nature is not very efficient at making babies - and that while assisted reproductive technology is very useful, IVF doctors have their own limitations.

Unfortunately, many doctors are excessively optimistic during the treatment, in order to boost the patient's morale. However, if the test is negative, they often dismiss this as "bad luck" and do not sit down and talk to the patient. If this failure is not discussed , patients get upset - and lose confidence in doctors and infertility treatment. This is a tragedy, because sometimes all patients need to do is be patient, until they get pregnant !

In our clinic, one of the ways we manage patient expectations is by helping them to reframe the problem, so that they understand that IVF treatment can take time ; and is not always a single shot affair.

medinnovationblog: The Chart Before the Horse, Part 2

medinnovationblog: The Chart Before the Horse: " Data entry has thus become King of the Ward, Supreme Ruler of the Dark Data Domain, and health care professionals have become data entry serfs. Nurses are now the chart police and paper tigers. They spend more time policing and prowling through the chart than nurturing, observing, and caring for patients and collaborating with doctors."

The tragedy is that this is now true in India as well. Rather than learn the good stuff from the USA, all we seem to copy is the bad stuff. Documentation has now become the be-all and the end-all. It seems that paperwork is more important than patients. I think this is because medical practise is now being taken over by bureaucrats and lawyers who want to control and regulate the ways doctors practise medicine by passing laws - and all they understand is paperwork ! Today, in India, under an Act passed by the Parliament, if you do not fill up a particular form properly, this is considered to be a criminal offense, for which a doctor can be jailed for 3 years !

Simplifying IVF to make it affordable and available in India

This is the technique of intravaginal culture, invented by Dr Claude Ranoux.

15% of all married couples are infertile which means that infertility is the commonest medical problem amongst young adults. Infertility is a major social stigma in India , which causes enormous personal distress. The good news is that medical technology, in the form of IVF offers effective treatment for infertility today.

The major problem is that IVF is expensive and unaffordable, which means that it is out of reach for most Indians. Not only is its availability restricted to the larger cities; it costs a bomb, so most Indian infertile couples cannot avail of this technology.

This is because Indian IVF clinics have copied the West and have not attempted to adapt IVF technology for Indian conditions. This is a challenge – and a major opportunity !

We need to simplify IVF to make it affordable and available. We need to adapt and tailor IVF for Indian conditions. We need local innovations which address the following facts:
There are many more patients, but most of them have limited paying ability
Indian patients are usually much younger ( because they get married at a younger age)
There are few doctors; and infrastructure is poor, which means it is difficult to maintain sophisticated medical equipment ( even the electric supply is unreliable !)
Most IVF clinics in small towns have low success rates because they cannot maintain sophisticated machines

We have introduced the technique of IVC – Intra-vial culture, for the first time in India. This is a proven technique, which was invented in France by Dr Ranoux over 20 years ago. We have achieved the first IVC pregnancies in India recently.

IVC versus IVF.

The principles of both remain the same – that we fertilise the egg outside the human body, to make an embryo, which is then transferred into the uterus. Regular IVF needs a sophisticated IVF laboratory. The heart of the IVF lab is the CO2 incubator – an expensive , imported equipment ( which costs about Rs 5-7 lakhs) which keeps the embryos at the right temperature and pH outside the human body.
In IVC, instead of using a CO2 incubator, we incubate the eggs and sperm in a simple sterile cryovial , manufactured in India, which costs only Rs 3 . This is filled with culture medium; the eggs and sperm are placed in this; it is sealed; and then kept in an indigenous “hot block” ( which costs only Rs 15000) which keeps at 37 C.
This vial can also be placed in the vagina, so the woman acts as a "human
incubator" !

After 48 hours, once fertilization has occurred in the vial and the embryo formed, the embryos are transferred into the uterus.

Benefits

Reduces capital expenditure – no need for CO2 incubator. No need for a complex imported machine/ gas supply
Uses simple, indigenous equipment
Cost to start IVC clinic – less than Rs 3 lakhs
Can be done by any gynecologist who does IUI !
Can afford to do IVC for Rs 20000 per cycle
Simple and cheaper to perform

The trade-off is that IVC has a lower pregnancy rate. However , the cost effectiveness is as good, as the cost per baby would be the same

Our goal is to simplify IVF so that it is available to infertile couples who could never dream of this treatment otherwise, because of financial constraints.

We want to now introduce it in medical colleges , where it should form part of the basic training for gynecologists studying for their MD degree .It can easily be introduced into government city hospitals and district hospitals

IVC and IVF are complementary procedures; and each have their role to play, especially in developing countries like India. While the success rate per cycle with IVC is lower than with standard IVF, the cost per baby would be much less; and the cumulative pregnancy rate would be the same.

I feel we need to offer a wide range of options to infertile patients, depending upon their budget; age; medical problem; location; and local facilities, so that they can select what works best for them.

Ten things patients hate about doctors

Before I start on my top 10 things people hate about doctors, I just want you know that I work in-house as a lawyer for a large company. Someone in the business sent the team this Dilbert cartoon. There are at least 3 things that the business hates about in house lawyers set out in the cartoon.

I look at it as 3 things lawyers can improve on ..

Top 10 things people hate about doctors in no particular order

· Having the sense that your doctor is not really listening to you;

· Having the sense that your doctor does not really understand how the situation impacts on you;

· Not giving you all the information you need;

· Not feeling he or she is giving you enough time;

· Telling you a procedure isn't painful when it is;

· Not being willing to try other treatments. Some doctors have a certain treatment plan and they are not willing to individualize it for you.

· Allowing patients to wait forever – our time is precious too.

· Reluctance to refer a patient to someone else when the patient is ambivalent about you or the treatment;

· Not giving you a sense of hope.

· Not enough empathy. All doctors could have more of it !

This is a list from Shanti Berggren ( [email protected]).

What do you dislike about doctors ? And how can doctors improve ?

Mumbai docs develop cheap fertility tech - National News – News – MSN India - News

Mumbai docs develop cheap fertility tech - National News – News – MSN India - News: "Under the method, the egg and sperm can be fertilised in a vial costing Rs 2, instead of having a sophisticated incubator which cost Rs five to seven lakh which also requires expensive maintenance, Anjali said at a press meet here today.

The technique was used in five couples and two were already pregnant, she said. 'Our main aim is to spread the knowledge of this new technique to government hospitals in cities and small towns so that many couples who cannot afford in-vitro fertilisation can happily have children at affordable cost.'"

The Infertile Man - A Comic Book !

You can also download it free at http://drop.io/infertileman !