Friday, 21 October 2016

A World Without Down's Syndrome and The Doctor Who Gave Up Drugs

These were two recent thought-provoking documentaries that led to me reflecting on how the state of the NHS makes us behave.

Children with Down's Syndrome are amazing. They bring just as much joy to the world as any other child. But if you knew you were pregnant with a child with Down's Syndrome, would you continue with the pregnancy? This was the question Sally Phillips was asking us. A new screening programme is to be introduced that can diagnose Down's with 99% accuracy without any invasive tests, and she fears that it will result in a 100% abortion rate for pregnancies that test positive, as happened in Iceland when the same screening programme was rolled out there. Phillips' eldest son has Down's Syndrome. He is gorgeous, bubbly, funny, wonderful. He has a right to life that she thinks shouldn't have the chance of being taken away.

What became clear during the documentary is the lack of support for parents facing a Down's Syndrome diagnosis. Many are advised by doctors to abort because of the health risks associated with the syndrome (heart problems and the like), and not shown enough of the positives. Children with Down's Syndrome lead full, active lives and cope extremely well in mainstream schools. The decision about whether or not to terminate has to be made quickly as time is not on your side. Termination is a procedure which frankly sounds horrendous, nobody could take lightly, and must affect mothers for the rest of their lives. But who is it that is unable to face supporting a potential lifetime of health problems, the parents, the doctors, or the NHS? The NHS is at breaking point - is it cheaper to make a woman abort than to have to provide the services to care for her child? Is this governing the pressure being placed on parents by doctors? I hope not, but there has to be a proper, informed choice, which there doesn't seem to be at the moment. What people also don't take into consideration is that babies without Down's Syndrome aren't necessarily going to be any easier than babies with Down's Syndrome. A baby could be "perfect" in medical terms, but still not let you sleep for the first four years of its life.

Sally Phillips didn't have to make a decision about her pregnancy as her son wasn't diagnosed until after he was born, and her antenatal screen had not put her at risk of having a child with Down's Syndrome. Phillips clearly has the resources to cope with whatever life throws at her, emotionally and financially. Not everyone would be able to manage as well as her. But what would she have done had she known in advance?

I don't know what decision I would have made. Having spent ten weeks feeling sick and exhausted and grumpy before my nuchal fold scan, I had vested a lot of physical effort already into the pregnancy, and would not have wanted all that effort to be in vain. But then I might have felt unable to cope with any kind of disability when faced with it as a reality. Before the scan, I was in a slight state of disbelief. I hadn't managed to convince myself that I was having any sort of baby at all. I was aware I might miscarry, so hadn't let my hopes rise too high. And yet as soon as I saw that tiny little blob on the screen, complete with tiny fingers and feet, somersaulting over my bladder, to me she was perfect. I loved her, I wanted her. I couldn't have stood having to get rid of her. But I was told that all was well. I didn't have to even consider that. I know that I cried with relief.

Phillips put her heart and soul into the documentary, but obviously was presenting it from a strong personal standpoint. I don't think women who feel unable to go through with a Down's Syndrome pregnancy should be judged in any way, because it's a heartbreaking decision, and an indescribably painful loss. What Phillips succeeded in doing, I hope, is opening up a debate on the issue so that parents will get to understand the true nature of both alternatives if they get a Down's Syndrome diagnosis.


The NHS is also at breaking point when trying to treat people with long-term health issues. It ends up pumping them full of drugs, because it's the quickest, easiest and sometimes cheapest thing to do. There isn't time or money to do all the tests available. Surgical alternatives are higher risk and expensive. And it's what we've grown to expect. We're all prone to visiting our GP (assuming we can get an appointment) expecting a perfunctory check during our ten-minute slot, not many questions asked, and a prescription that will cure us to be handed over at the end.

Some drugs will cure us. But others are prescribed unnecessarily - antibiotics for a virus being the classic example. Because we've spent decades guzzling these pills like Smarties, bacteria are learning to outsmart us and are becoming drug resistant. In time, they will kill us all. Anyone who believes that man is the most advanced being on the planet needs to think again.

Other drugs are prescribed continuously where alternative therapies could prevent the need for long-term pills. The Doctor Who Gave Up Drugs (Chris van Tulleken) tried to see if there was another way. He found that a daily walk could reduce cholesterol or Type 2 diabetes symptoms in some patients. The highs from open-water swimming alleviated depression in another. He also highlighted the ineffectiveness of painkillers and the more beneficial aid of physiotherapy and properly structured exercise.

Personally, I hate taking pills. I have to take thyroxine every day, and it makes me feel like crap. All drugs in my experience come with a raft of side-effects. Doctors tell me off for spending too much time reading the leaflet in the box. But I don't want to take something only to then have to deal with something else. Right now, in perimenopause, I have developed a whole host of symptoms, largely attributed to hormone imbalances, and not helped by having an auto-immune thyroid disease. I'm trying to learn to manage continuous acid reflux and menstrual problems, but the quick-fix drug solutions - PPIs, the Mirena coil - have only caused other issues. Who will look at the whole me? No GP has the time to really work out what is going on and they need to fob me off. And I don't want to waste their time either. I'm pretty miserable right now. What could The Doctor Who Gave Up Drugs do for me?

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