23 June 2011 (Thursday) - A Screening Programme

A day in the wicked city. I was up with the lark at at the railway station far earlier than was sensible. After waiting for our train to pull off for twenty minutes there was an announcement. The train manager was trying to find a train driver. As soon as one became available we’d be on our way. That filled me with confidence, and after five minutes a big fat man in train driver costume was seen running along the platform. We got going soon after that, and were only five minutes late for our day’s outing.
I say “five minutes late” – we’d been told that the NHS National Sickle Cell and Thalassaemia Screening Programme’s Laboratory Training Day started at 9.30am. Having run from St Pancras to Russell Square we found that registration and coffee was from 9.30am, and lectures started at 10am. I got some coffee, and spent fifteen minutes getting my breath back.

We started with an update on what the programme had been up to for the last year. This lecture was the worst of the day. Lacking any structure, it was not so much a lecture as a disjointed rambling in which the speaker leapt from one topic to the next (and back again) at random, seemingly contradicting herself at regular intervals.
The second talk was more interesting; covering screening programs and the management of risk in haemoglobinopathy screening. It’s actually a fascinating subject; the science behind it is something which I personally find the most interesting part of my job. And there’s some serious ethical dilemmas. Thalassaemia major is one of the most serious genetic conditions there is – babies with it can die before birth, and many of those that do survive can only live because of life long blood transfusions. But screening of parents can avoid such children being born. In the UK parents are screened early in pregnancy. In other parts of the world people are screened before conception takes place. In some parts of the world (where marriage is still de rigueur) priests won’t marry unscreened couples. Effectively these people require a licence to breed. There’s a can of worms….

The third lecture was interesting covering serious incidents and lessons learned. Like everything and anything, the screening programme is not perfect, and has had some failures. Lessons have been learned and the service has improved, but what does anyone do  when a couple decide to breed, having been told of the risk of conceiving a child who will be born to suffer?
After a tea break was the best part of the day – a lecture from Professor Bain, who is a world-renown expert on the subject of haemoglobinopathies. And then dinner - very nice. Perhaps too nice...?
After dinner I slept through a session on data interpretation. I knew the session was going to be bad: over the years I’ve formed a serious distrust of anyone who refers to a blood-testing machine as an ”instrument”. I could feel myself nodding after only a couple of minutes, and was soon sound asleep. I awoke with a start and the thought “F@!! - I’m in a lecture” ran though my mind as the speaker asked “did everyone find that helpful?

After another cuppa the day closed with some fascinating case studies. For all that I find the haemoglobinopathies to be fascinating, they are not common conditions. In fact I often describe then to my students as being as abundant as rocking horse poo. And this last session gave some seriously obscure tales, involving sickle cell trait with a duplicated normal beta gene, and the discovery of the unstable Hb Kingsbury.

All things considered it was a good day out, but I did have a couple of criticisms. The projector screen was too small – I could hardly see the presentations.
And the venue: has anyone realised that the country is in financal queer street? Surely the Imperial Hotel in Russell Square isn’t the most cost effective place to hold such a meeting. Heaven only knows what the place cost to book, but I did see that the lunchtime menu was seventeen quid a head. With about forty of us on the course, I expect the total cost of the day would have been about a thousand pounds.
Whilst I realise that a London venue is central for all participants, surely there are church halls, scout halls, YMCAs, community centres that could have done the day at a fraction of the cost?

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