15 Feb 2013

Chickenpox - a study of frontline care in action

The NHS relies on patients being able to self-diagnose. If every patient went to their GP, or a walk in centre or A+E with a sniffle (and some do), the service would be swamped. So, the NHS expects individuals to be able to decide when they are ill enough to need a professional opinion.

My eldest son has chickenpox. Chickenpox is the last remaining widespread childhood disease. In the USA and other countries, a vaccination is offered, but the NHS does not offer it as it's largely harmless and short lived. Some parents, in an effort to expose their child to the disease young, hold chickenpox parties to spread infection. Varicella infection is dangerous in non-immune pregnant women as unborn babies can die from it, so I think a chickenpox party is a bit daft. However, most children will have it before they leave primary school.
Parents expect it, they recognise it and they treat it largely without professional help.

So, I phoned my doctor's surgery to ask them to record it on his notes. After all, doctors aren't psychic. The receptionist was astonished that I'd done this and told me only a doctor could record a diagnosis. So, I sighed a deep and heavy sigh, pointed out that I didn't want to infect her waiting room or waste an appointment, and my son isn't particularly unwell, just incredibly spotty and grumpy. Eventually, she agreed to put it on his notes.
Then I wandered up to my local chemist. There is a service called Pharmacy First that allows your chemist to diagnose and prescribe medications for children in the chemist. It's only really for over-the-counter medications, so parents can have them for free without using a GP appointment. They prescribe for conjunctivitis, hayfever and mild analgesia. I asked for piriton, if it was available, after asking for calamine. I didn't take my son with me, because he's INCREDIBLY spotty and likely INCREDIBLY contagious. After some argument about whether or not chickenpox is contagious after the spots come out (they said no, I said yes), they ummed and ahhed over whether to give me the medication without seeing the child. Eventually they agreed to - I use the chemist on a very regular basis, for all kinds of minor illness, so they're well acquainted with me and my kids.
But what else would I want free piriton for? I could buy it easily. I'm not going to sell it on the black market, or use it to drug my poor defenceless children. Their argument was that they had to be sure, and it wasn't a 'remote' service.

And you know, I understand that. It seems that the more the NHS tries to give patients additional autonomy, the more bureaucracy needs to be fulfilled, the more patients are put off. Why bother going through rigmarole and form filling at your pharmacy when you can go direct to your GP? I have eight years experience in general practice, as a receptionist, administrator and nursing assistant, I'm pretty confident I know how the system works and how to diagnose chickenpox, and everything I've done this morning has been aimed at saving GP time. My motives for doing so have been scrutinised. Is it that impossible to imagine a patient might genuinely want to avoid wasting resources? Is it impossible for a person to diagnose the most easily recognised rash without formal medical training?

The NHS relies on self-care and self-diagnosis. However, there seems to be another force at work trying to keep diagnostics firmly in the hands of professionals. Front line care is flooded by people who are anxious about minor symptoms, who need reassurance and OTC medication. The NHS needs to give people confidence in their autonomy.

8 Feb 2013

Immunisation

Immunisation and cancer screening are the two of the leading forms of healthcare prevention practiced by the NHS. Most women will have smear tests regularly during their pre-menopausal years, and then breast screening when they are older. Men are increasingly offered prostate checks, and both genders are being offered bowel cancer screening. These screening tests are designed to catch early neoplasms, and in doing so, save lives.
Immunisation is routinely practised on children, from 8 weeks old until approximately 16 years. Immunisations carried out after that point are either for holiday/employment means or immunologically compromised patients.
In cancer screening, patients have the right to refuse. They might be exhorted to attend, for QOF measures and for their personal health, but they're under no obligation to go.
However, families who choose not to immunise their children are denounced.

 Childhood immunisation has been part of the NHS since it's inception, and was part of public health schemes long before that. The Diphtheria/tetanus/polio vaccine was administered regularly from the early 1960s, and as more vaccines have been developed, more have been offered. My children are immune to diphtheria, tetanus, polio, meningitis C, haemophilius influenzae type B, whooping cough, pneumonia, measles, mumps and rubella.
Pre-immunisation, these diseases killed millions. My grandmother suffered diphtheria in the days before the NHS, immunisation and penicillin. She was in an isolation hospital for months, forced to lie down constantly and kept away from her family (except her sister who was in with her). She watched other children on the ward die. This was not uncommon. Families who couldn't afford to send their children to hospital, if their child was suffering from a notifiable disease, were legally culpable. The child would usually die without good nursing. In my days working for the NHS, we had several patients suffering from ongoing disabilities from polio infections in their childhood, some dating from as late as the 1950s. For these families, a simple immunisation would have been a lifesaver.When I summarised patient notes, it was rare to find a patient growing up pre-1965 who didn't suffer from one of the childhood diseases that we now consider rare.
The MMR jab was not developed until the 80s. I suffered from mumps in 1988, and my brother suffered measles around the same time - neither of us were immunised, as we were too old when the vaccine became available. Cases of measles are now on the rise, as the herd immunity offered by mass vaccination wanes. This is largely due to the Wakefield Report, which linked autism to MMR vaccination, a report that has since been deemed false, and fraudulent.

There are many reasons that parents do not vaccinate their children. There are worries of autism/neurological illness, or a distrust of vaccination ingredients. Others do not believe the theory of vaccination. The common thread, from what I've seen on the internet, is fear inspired by ignorance. In one story I read, a woman refused to vaccinate because the immunisation contained ingredients she didn't know. This reminds me of the time my dad went through his PC and deleted every file he didn't recognise, and then wondered why his computer didn't work.

However, more common is the reluctance to introduce drugs to a newborn's baby. From conception, pregnant women are told not to smoke, not to drink, not to take medication unless it's necessary, not to eat raw fish, to cook meat properly, to avoid cheeses, with the clear message being "If you do, and something happens to your baby, it is YOUR FAULT."
Then, almost as soon as the baby is born, women are enjoined to take their precious newborn to a clinic to have an enormous needle stuck in it's leg, full of chemicals.

And if parents refuse to vaccinate their child, through fear, or ignorance, or cultural belief, or just because they don't want to, society vilifies them. They are called child abusers. Their friends are reluctant to let them play with their children, schools and nurseries are reluctant to take them on. The child and it's parents are punished for failing to conform to the biomedical patriachy. "The NHS has these lovely vaccinations, that could save your child's life, and you don't want it? You ungrateful swine, we hope you get diphtheria, just to prove how amazing we are!"

I remember telling a nurse, who I was friends with, that I wanted my eldest to have his first MMR and HIB/Men C booster separately. She looked at me askance and immediately started having a go about there being no proven link to autism. She could see no other reason why I didn't want my son exposed to two lots of vaccine at once. Nonetheless, after ranting at me like I was an idiot for a few minutes, she accepted my request. My reasons had nothing to do with fear of vaccination - I think vaccination is a wonderful thing - but because my son (like me) reacts badly to immunisation. He gets poorly, and has a localised reaction every time. I didn't want him to have to suffer a double lot of ouch if he didn't need to, and if he was allergic to the MMR, I wanted a clear cause. As it was, he had classic measles-type rash ten days after immunisation and was poorly for a day or so. I knew what had caused it, and didn't worry or panic. My younger son has the constitution of a horse, so there was no need to space out his immunisations. He also had the post-MMR rash.

There is definitely a feeling within the NHS that immunisation is not a parental choice, but a duty. Although a parent needs to give signed consent for administration, it is assumed that they will give this, and any questions are construed as dissent.

There are now a generation of parents and grandparents who do not remember life pre-vaccination. They do not remember fearing that an URTI would mutate into diphtheria. They do not remember worrying that a viral rash would be early measles.Parents are now able to look after their children without worrying about deadly childhood disease, meningitis excepted. There is very little education available on the components and benefits of immunisation, to the average first parent, because consent is assumed - some cursory leaflets and a bit of information in the 0-5 year book. Infectious childhood diseases, which are still rife in certain parts of the world, are assumed eradicated, the need to immunise questionable.

It does nobody any good to call anti-vaccination parents stupid, to act as though they are single handedly ruining the NHS and all it has striven for. Instead, the NHS needs encourage questions on how vaccines work, their ingredients and their necessity, with practitioners able to give answers there and then. An informed choice is better than blind conformity.

4 Feb 2013

Abortion

There has been a call to revise the Abortion Act 1967, on the basis that it is being abused.Under current law, a woman may have an abortion if A)her life is at risk, B) if there is grave risk of damage to her mental or physical wellbeing, C) if there is a greater risk of harm to her mental/physical wellbeing than if she does not continue the pregnancy, D) if there is a greater risk of harm to the existing children of the woman than if she does not continue the pregnancy, or E) if the foetus will be severely disabled.
Under clause A, B and E, the termination may be carried out at any time, up to 40 weeks (although the woman may struggle to find a doctor willing to certify a termination at such an advanced gestation). Under clause C and D, abortion is legal until 24 weeks.

The argument to revise the abortion act chiefly centres on Clause C. 98% of terminations are carried out under this clause. A Royal College of Psychiatry study has shown that for women with unwanted pregnancies, rates of mental health problems were the same whether they had a termination or gave birth. . There are calls to either tighten up legislation on under what circumstances abortions are permitted, or to reduce the gestational age limit.

24 weeks is the limit because that is considered the age at which a foetus becomes viable - i.e. it can survive outside the womb. Originally, the limit was 28 weeks, but as more technology enabled those babies to survive, it was reduced. Very few babies born at 24 weeks survive, and those that do usually suffer from disability of some type, even with modern neonatal technology. Under British law, a baby stillborn before 24 weeks is technically a miscarriage, even though the mother usually gives birth. This, again, is due to the legal definition of viability. An abortion is done before 24 weeks, ideally, because there is no duty of care for the doctors performing the procedure to attempt to save the foetus. Indeed, in terminations carried out after 20 weeks, foetocide is usually performed to ensure there is no conflict of duty. 

The ethics of abortion are undoubtedly a tangled and emotive web. There is no consensus on when life begins: there are arguments to call a pregnancy 'live' from ovulation (preconception), conception (within days of ovulation), implantation (4 weeks), the development of the placenta and heartbeat (8 weeks), from when it looks human (approximately 12-14 weeks), or from when kicks can be felt (approximately 16-20 weeks). From very early on in pregnancy, a woman's whole body and mind is taken over by this bunch of undifferentiated cells within. No mother, feeling her baby move, would tell you that it is not alive. However, legally, an unborn baby is not a citizen. It has no rights. It does not exist. It is an abstract concept, in matters of law.
For the purposes of this particular debate, the concern seems to be women recklessly getting pregnant and then having a termination for social reasons. I would argue that this is not a medical debate, or even an ethical debate. It is a moral judgement. Women should not get pregnant with babies they do not want, and in threatening to withdraw their right to terminate, women who act so recklessly in future, will be punished.The decision to terminate is rarely taken lightly. The idea that women use termination as contraception is largely wrong. Some women feel no emotional or moral burden over their decision, but that is their prerogative. Abortion is not painless, and there are hormonal side effects.The later the abortion takes place, the more invasive the procedure.

Until I was 25, I was relatively pro-life. I didn't care what other people did with their bodies (though, God knows, I judged them), but I was under the impression that I would never want an abortion. Then my husband left me when I was 14 weeks pregnant. My gut reaction was to terminate. I could not fathom how I would cope, as a single mother, with my existing toddler and being pregnant, let alone with a new baby. My ex withdrew and offered no support throughout the pregnancy. I was completely alone, at least to begin with, and it was harrowing. I did not want my baby. I considered terminating in secret and telling everyone I'd miscarried through stress. I considered terminating to punish my ex. I considered terminating for the benefit of my existing son, who needed me more than ever. I had overwhelming family pressure to keep the baby, and most others simply assumed I would. After the 24 week mark passed, my mental health deteriorated, because I no longer had the comfort blanket of termination. My decision to keep my baby was not easy, but the idea of abortion was also not easy. Adoption was simply not an option, as it so frequently isn't for women with families. My baby's birth was immensely cathartic and I have never once regretted my decision to keep him.
I cannot adequately describe the emotional pain my second pregnancy caused me. I was physically attached to my ex. There could be no closure until the baby was out, and either I killed him or I let him be born and struggle as a single mother of two. I wanted to die, so I no longer had to live with the consequences - emotional, physical and economical - of what was happening.
I have suffered no lasting mental illness, but that does not negate the fact that I was suicidal intermittently throughout the third trimester. A termination on account of the risks to my mental health would have been justified, I may even have been able to get one under Clause B, as grave risk to mental health.Not so, if the law is changed to reflect the study by the Royal College of Psychiatrists.

Women should not have to jump through psychiatric hoops to be granted an termination, within the legal time limit. Whether a woman should abort or not is an individual, subjective decision. Doctors have a right to refuse to authorise, or perform abortions, on personal ethical grounds. Nobody is forcing anybody to have or perform a termination.
Any alteration to abortion law is eroding the rights of women to dictate what happens within their own body, a right women did not even get until 1967.There does not seem to be a great deal of evidence in favour of changing the law as it currently stands, just a lot of hand-wringing moralising, from people who have likely never been in the unenviable position of carrying an unwanted pregnancy.