Friday 30 April 2010

They think it’s all over – it will be on May 7th

Thank goodness the leadership debates are over. I didn’t watch more than a few moments and still think that there is something barking mad about judging who you will vote for on the basis of a few hours performance on television by three people......

Read the manifestos!!

Also – where are the women? I haven’t done the research but my instinct is that the wives of said leaders received more press attention than women PPCs. It is not that there aren’t any women candidates – the serious stories are going to the men. Very disappointing.

Our own campaign has done really well – as predicted there has been much publicity about health, treatment and waiting times amongst other health issues and, despite my predictions that this would not get any coverage – there was some limited publicity about science and medical research. We supported collaborative efforts on health but restricted our efforts to asking our supporters to write to their local prospective parliamentary candidates about something called the Charity Research Support Fund.

This is so that our donations go further in improving treatments and finding a cure for breast cancer.

Thanks to all the 840 supporters who did contact their PPCs and so far we have 574 signed up.

It isn’t too late to help – Click now on:

Monday 26 April 2010

London Marathon 2010

If it’s Monday morning and my voice is croaky it must be the day after the Marathon. It is a slightly surreal experience being on a crowded Northern Line at 8am on a Sunday morning – pretty surreal being anywhere at 8am on a Sunday morning. There was a mixture of runners, family and friends – one runner-to-be was already wrapped in the foil blanket which is given out at the end of the race which only added to the surreal-ness!

We had three groups of staff and volunteers at the race – some were moving between cheering points as the race moved on but I was stationed with colleagues at Mudchute (Mile 17). The moment when the first wheelchair racers come through – you know it is “game on”. It is one thing watching this on TV and another close up – to see how flimsy those wheelchairs look and how much human power is required is very humbling.

The elite runners and club runners come through singly or in small groups and then the mass of the so-called fun runners come through and keep coming through. I don’t know why they are called “fun-runners” as there is nothing fun about it. The weeks and months of training and then so many of them also raise money – lots of money.

The challenge as a supporter is to spot the runner, call their name loudly enough (lots of accompanying noise as well) so that they see you are there and get that little extra bit of encouragement. Mile 17 is a tough place too and some of the pain was evident.

Our runners all did amazingly well, our fastest was Vito who finished in an incredible 02:58:27 and the amazing Diana with her two new hips was still smiling at mile 25 and went on to finish in 07:10:16. I am sure Diana won’t mind my saying - she celebrated her 76th birthday the day before her eighth London Marathon and only took up running after having had breast cancer.

Amazing people doing amazing things!

Wednesday 21 April 2010

Make your mind up

The Electoral Commission has reported that there has been a surge of people applying to register to vote since March 15 – more than 460,000 – with around half since the debate last week particularly from that elusive group, the 18–25 year olds.

Coming from a country (South Africa) where people died for the vote and then when they did get the vote stood in queues for many hours to exercise it, I have no patience with those who don’t bother, don’t get around to it and don’t think it makes any difference.

One of the quirkiest vote encouraging efforts is a video produced by Total Politics using “Making your mind up” which was number one in 1981 for Buck’s Fizz (and won Eurovision). It features politicians, political bloggers and three of the original members of Buck’s Fizz. It is quite amusing but of course you would probably have to be over 25 to have a chance of remembering the song......

However, it will amuse anyone old enough to remember it - and all those Eurovisionistas.

Thursday 15 April 2010

Let battle commence!

Will the nation be glued to television tonight to see the three leaders do battle?

I have a plan for coping with the General Election campaign. A short digression – some years ago I met someone who had a plan for Wimbledon. She took two weeks off work; she laid in supplies as for a siege and her family was put on notice that they would have to fend for themselves as her contribution to the running of the household was strictly limited to what could be done in the morning before the tennis started. She spent the two weeks in front of the television, suitably refreshed from time to time.

So I think you need a plan. I will read the party manifestos. This is a bit geeky I know but that way you find out what they say, not what they want you to think they say, nor what the opposing party/ies want you to think they said (still with me?). It is always interesting to go back to them from time to time to see if they have kept their promises.....

I do listen to the news headlines twice a day and read anything my colleagues draw to my attention which might affect our organisation or our cause.

Other than that – I have sufficient recorded to watch on television to avoid the news and all the radio programmes I don’t have time to listen to on my MP3 player. As a readaholic I always have a batch of library books so that I don’t have to read the paper in desperation.

You see – you need a plan. I hope that our politicians have one that works.

Tuesday 13 April 2010

Transplants save lives...

That’s the heading on the NHS Organ Donor Register leaflet and of course it is true. Hundreds of people die every year who could have been saved by a transplant. You would think that with 16 million people on the register this would not happen but of course just because you are on the register doesn’t mean that your organs will be used. Many of us die from cancer or other diseases which mean that our organs can’t be used but if, by some awful chance, an accident should take my life I would want to think that it hadn’t been in vain and that some good comes from it.

I am aware that this is my choice and a choice which will not be made by others. It is essential that we respect people’s wishes in this; otherwise we will end up with the mess we were in before the Human Tissue Act came into force.

You may think that I am writing this because of the report over the weekend about errors apparently by NHS Blood and Transplant in recording data which means that a number of people’s organs may have been wrongly removed. Actually this is not the reason - the reason why I am writing this is because last Thursday I filled in my donor form. This wasn’t a big decision I have been agonising over for months but simply that enemy of all good things – inertia.

It is done now and I am furious at this story – obviously because of the distress it will cause those families involved but also because people like me might not come forward because of a concern that something like this might happen. From what I understand, all those involved had agreed to be organ donors but had specified which organs could be used and it was this which was not accurately recorded. How awful for the families left behind to have to deal with this after the event: to have given permission thinking that you were doing what your loved one wanted to find out now that it wasn’t at all.

As I have agreed that any bits of me they can use can be used this does not change my mind but it is a blow for life-saving work.

Friday 9 April 2010

Two anecdotes is evidence?

I was once at a scientific meeting where someone commented that two anecdotes is evidence – this was said somewhat tongue in cheek but in this case the anecdotes support the evidence!

In January the Academy of Medical Sciences published a report as lead-in to the General Election “Reaping the rewards: a vision for UK medical science”. They are urging the government of whatever political persuasion to make it possible for medical science to become a driver for not only health improvements but also for an economic recovery in the UK. I won’t paraphrase here all the information but suffice to say that the UK has an outstanding record in medical research and drug development but that could be all at risk because of the barriers to research and particularly clinical trials. The publication can be seen here.

What is really shocking is that between 2000 and 2006, the proportion of world clinical trials conducted in the UK fell from 6 per cent to 2 per cent. This not only has implications for research, drug development and patients in the future but for patients who are ill now – and some of them very ill – who cannot benefit from current trials.

The Government has ordered a rapid and independent review to be conducted by the Academy of Medical Sciences to look at this.

For the scientists we support this has longer term but serious implications – what is the point of doing research which will not be moved forward into patient care – and especially not be moved forward into patient care within the UK? There is an interesting summary on the challenges in an article in Bioworld here.

So where does the anecdote come in? Just back from a week visiting the Swiss family in Basel where the pharmaceutical industry is the largest employer in the region drawing talent from all over the world. It is interesting to hear from people in the industry there about the resistance now to doing trials in the UK. Not because we don’t have willing patients; not because we don’t have excellent clinicians and hospitals but because of the cost and the layers of bureaucracy which create delays and add further to the cost.

The result of the review is very important – more important is the action taken – or not!