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?

National Treasure


This was a very brave production by Channel 4. Irritated by them for poaching and therewith effectively shutting down Bake-Off, this drama starring Robbie Coltrane and Julie Walters just about put us back on speaking terms. The storyline was compelling, and the performances stunning.

It wasn't an easy watch. But what I admired most about it was its complexity. There was much more to the characters and the plot than met the eye.  Celebrity Paul Finchley arrested for alleged sexual crimes from decades before. An Operation Yewtree style sting, and yet it wasn't clear-cut. You couldn't guess what the truth was. For everybody has their light and dark sides.

A wife sticking by her partner through endless philandering. A very messed up daughter, in and out of rehab. An on-screen partnership that had also stood the test of time. But who really knew what happened? What tricks can memory play over the years?

Once one accusation was in the press there followed many more. Who was genuine? Who was merely trying to sell a story? Could this jovial quiz show host really be that evil?

In the end, Finchley got away with it. The truth was that on at least one count, he shouldn't have. "How do you tell if sex is consensual?" asked the prosecutor. "You just know," said Finchley. Only it seems he didn't. Lives were ruined, while elsewhere, opportunities were sought.  The champagne bottles were uncorked at a celebratory party but Finchley ended up wandering around his house, lost. He had shed tears in the courtroom, but had escaped punishment by the law. But now he was alone. In the end, the long-suffering wife had finally had enough.

Louis Theroux recently broadcast a follow-up documentary to one he made in 2000 about Jimmy Savile. The follow-up largely consisted of a melancholy Louis wandering around visiting Savile's victims, wringing his hands and saying things like, "How could I have let him be my friend?" "How could I not have noticed that this man was the biggest paedophile in the world?" In retrospect, of course, it's almost screamingly obvious what Savile was. But when he was alive, he was a closed book, and devious beyond anyone's belief. At various times, the man openly admitted on camera to a rampant sexuality. But somehow his half confessions were disguised and dismissed. Of course what he never told us was that he was pitting himself against children, and against the will of others.

What it boils down to is the same as with Paul Finchley - if someone is in the public eye, you have an automatic assumption that they can't be a criminal. You somehow believe that they must be inherently good. That someone else has done the vetting for you. Else they couldn't have got that famous. Else they wouldn't be allowed to work with children. Else they wouldn't raise all that money for charity. Because they're your hero.

Sadly, this is not how the world works. People in the public eye have to be scrutinised, because some - perhaps lots - have abused their power and fame, and the worship and adoration of others.  There is so much more safeguarding of children in place now than there was in the 1970s, but somehow it's still not the right people getting punished.

Apparently, Jimmy Savile gave me a cuddle when I was a baby. My father only told me this after Savile had died and his crimes come to light. It's a thought that I would have been awestruck by as a child, addicted to my weekly fix of Jim'll Fix It. It would have been a great consolation to my letters never getting answered. It naturally fills me with disgust now. Apparently, this (minor) incident took place at a Christmas party at the Leeds General Infirmary, where my grandfather was a consultant, and where Savile worked as a hospital porter, raising a lot of money for the hospital. The ward Matron held a sherry party every year on Christmas Day for staff who were working - my grandfather was always one of them - and their families. I have no idea who invited Jimmy Savile to the gathering - was it my grandfather? Matron herself? Or was Savile just wandering round the hospital on a whim, as we now know was his predatory style, thinking it might be a quiet day to abuse the sick? The latter is too appalling for words. Anyway, as oblivious as everybody else as to what Savile was up to or capable of, my parents gaily handed me over for a bounce on his knee. No harm done. Savile also went to my grandparents' house on at least one occasion, a fund-raising meeting with my grandfather, but thankfully all the daughters of the house, some of them still teenagers at the time, weren't home. The girls were merely excited to find a cigar stub in an ashtray when they returned. Again - and thank heavens - no harm done. But.... but... had we known...

For hundreds of others, it was a very different story. Unlike Paul Finchley, Savile will never face trial for what he did. There will be no justice of any kind. It's a sick world.