Saturday, 25 October 2014

My opinion is free but YOU get paid for finding it out

There were a couple of TV series a few years back called Grumpy Old Women and Grumpy Old Men.  You didn’t need to be that old to be quoted, just famous.  I have always tended to grumpiness but held myself in check – now I don’t care so much, but would draw the line at being offensive to someone.  I suppose leaving my shopping at the self-checkout at Tesco (see previous blog) is part of that – I would have felt obliged to finish paying before.

I receive a monthly email from YouGov – to quote “YouGov has been acclaimed as the country's most accurate opinion pollster.”  This email is very flatteringly entitled YouGov Opinion Formers survey. Well that is flattering – I am an opinion former! I have been receiving these for years and have filled them in most months. Now that I have more time to do this and think about it, it suddenly occurred to me – they are paid, and well paid, to do this. I am giving my services for free. Why?

I have just seen some market research commissioned by a public agency which was done entirely online – that means that they canvassed the opinion of 2,000 people who had access, ability, interest and time to deal with an online survey – and public policy will be driven by this – not taking into account the millions who are not online, have not the ability, the time or the desire to take part. 

I don’t deny the value of market research although the questions asked and the way they are framed are often carelessly done. But in this case YouGov’s customers (who are commercial as well as political) will manage without this opinion former – it didn’t help that the email was addressed to “Dear Alec...”

Tuesday, 21 October 2014

Blogging has been a little light recently

There are a number of reasons for this - I always have plenty to say but I don't like to write blogs when I am away and have been doing a fair amount of travelling recently. 

Secondly and more importantly, I haven't been able to decide what to write about. This sounds a bit pathetic but the news over the past few months has been relentlessly awful - from the Middle East to the Ukraine (except who hears about what is going on there now) from Ebola to politics in Africa.  It has either been too awful and/or too complex to write about and conversely everything else has been too trivial so I have been seated at my computer, stymied.

Just today the news is awash with the sentencing of Pistorius in South Africa. A beautiful young woman was killed by a well-known and complicated man - she is one of many people who have been killed in South Africa (most of whom are not beautiful, young and blonde) and while this is a horrific personal tragedy for her family - did this warrant wall to wall coverage?  Is this the modern electronic version of the rabble gathering to watch a hanging?

There are a number of reasons for this - I always have plenty to say but I don't like to write blogs when I am away and have been doing a fair amount of travelling recently. 

There is a war in the Ukraine - I haven't seen anything on the news channels recently but it rages on.  And then there is Ebola.  I heard someone from the Centre for Disease Control in the USA interviewed on the BBC World Service a couple of weeks ago - his opinion then was that screening in the USA was probably a waste of time and resources but the government was responding to "Don't just stand there, do something".  Of course, until white Western people took ill there wasn't much interest.  There still seems to be little interest from the countries of the world - some, including the UK and USA, have sent significant resources but last I heard $100 million had been pledged out of $1 billion asked for by the UN.

I mentioned Africa – in Zimbabwe the wife of President Mugabe, Grace, was recently awarded a PhD - not an honorary one but the sort you study for seven plus years for. She apparently acquired this after only four months and without publishing a thesis or being independently reviewed. Wow!  She is now heading the women's group of the ZANU(PF) party -  read The extraordinary political rise of Dr Grace Mugabe – is she going the way of Eva Peron and is this the next President?

If you are still reading this now you will have a flavour of just a few of the awfulnesses of the past few months - at the moment I can't bring myself to write about the upsurge of anti-Semitism in Europe and how that makes me feel.  

Monday, 1 September 2014

A tale of two shops.....

A day spent trying to get my papers together for my tax return, which meant doing masses of filing, was never going to be fun.  I thought I would cook something different for supper as a reward which meant a trip to the shops.

This isn’t with the zeitgeist but I do most of my shopping at the nearest supermarket which happens to be Tesco.  I have the loyalty card and regularly get money off vouchers which, most of the time, I forget about until too late. I also get air miles which means I would have to spend about half a million pounds to go anywhere (OK a bit of an exaggeration but not much).

I don’t use the self-checkout.  If they offered me a discount to check out my own shopping then I suppose I would. I quite like a bit of human interaction and worry that one day the humans may all be replaced by machines.

However, today I only needed a few items (which were quite exotic and difficult to locate) but I did.  I then thought I would use the self-checkout.  Firstly the terminals that were free had a message “take your receipt” – there was no receipt dangling free.  Someone came and cleared one for me to use.  Sorted out the bagging area etc and scanned the first two items.  Third one was a bit challenging but I managed.  The fourth one (a bag of semolina) came up with a message to say that “this product has been withdrawn, ask for assistance”.  The assistant came over, read the message and then tried four times to rescan it – surprisingly getting the same message each time.  All she had to do was offer to replace it with a different brand.  I lost the will to continue at that point and left her and my shopping in the bagging area.

I then walked a couple of blocks to a Middle Eastern shop where the lovely chap managed to understand me, translated all the labels, found everything I needed – all surprisingly cheap.  When I told the cashier I had forgotten the coriander she said not to worry she would charge me and I should just pick up a bunch on the way out. (Note: they even sold the chicken already cut up and skinned for my tagine. It was delicious!)

One slightly curious thing I did see – a bag of Knorr stock cubes with the label “Nigeria’s favourite stock cube”. 

Tuesday, 26 August 2014

Ice-bucket hijack

I realised quite recently that I don’t have to keep my head below the parapet any more. I have popped up from time to time but, having run a charity for a number of years, was always quite guarded about what I said – after all I was representing the charity, even in my private space. I was certainly very careful about criticising another charity.

I see from an article in Marketing Week Macmillan defends itself against criticism it hijacked the ice-bucket challenge that Macmillan has not only jumped on the bandwagon of this fundraising craze but have taken the bandwagon away. They are not the only ones – people like crazes and either don’t care about which charity they are raising money for or want to use it for their own charity. This is different from a large charity throwing resources at something started by a small charity.

Often the resources that the large charity spends on fundraising are many multiples of the total income of the smaller charity.  Some examples – Macmillan spends approximately £50 million a year to generate about £150 million in voluntary income; Cancer Research UK spends about £80 million to generate £373 million and Marie Curie spends £37 million to raise about £85 million (all these exclude trading – usually shops, investment, legacies etc). In comparison the voluntary income of the ALS Association in the USA is about $16 million and of the Motor Neurone Disease Association here is about £13 million.

Money is also spent on “raising awareness” and other such terms which also translate into donations.

There is no immediate solution: charities are advised to put their feet on the accelerators and hope that they can milk the idea before the biggies latch on.  With social media this is increasingly difficult. Breast Cancer Campaign’s “wear it pink” fundraiser gained momentum very quickly and “pink” days started sprouting up everywhere – trade mark or no trade mark. I am sure that Macmillan fiercely protects their coffee morning campaign – unfortunately for ALS (Motor Neurone) the Ice-bucket Challenge can’t be protected and celebrity involvement projected it into the social media stratosphere.

In the breast cancer research community we did ponder about how women could copy the Prostate Cancer worldwide “Movember” campaign.  Grow a beard in November and get sponsorship. Nah – we couldn’t come up with anything either!

Wednesday, 20 August 2014

Amazing people who do good things

I will shortly be stepping down as a Non-Executive Member of the Human Tissue Authority having served two terms of office. It has been a fascinating and sometimes challenging experience but there was a strong sense amongst the non-executives that we were doing something really worthwhile and, in a small way, giving something back.

I have worked with three Chief Executives and three Chairs and a number of senior staff over the last six years. During many challenging periods it has stuck to its purpose with very committed staff and a clear focus. It is an organisation that is not only fit for purpose but pretty fit as well. 

You can read all you want to know about the HTA here but what I really wanted to write about was something that is rarely mentioned but is a key duty of the non-executives on a weekly basis and that is, sitting on a panel to determine whether a living organ donation can go ahead. (Read here about living organ donations.)  

The panel comprises three non-executives, all trained (and retrained every year) and is conducted online (and in rare and complex cases we meet in person).  This has given me a window on a world of amazing people ranging from parents donating kidneys to children or vice versa, brothers to sisters, friends to friends and, more regularly now, people who have taken the decision to donate a kidney altruistically – they have no idea and may not ever know who is receiving it which I find awesome.

If, like me, you carry an organ donor card then when you die, either one or both of your kidneys, for example, could go to someone on the long waiting list.  Very often they are not OK and this isn’t possible – rather fewer are used each year than you might think.

The other option is a donation from a living person – usually a kidney, and increasingly, part of a liver. In some very specific types of donation the decision has to be made by a panel. We have to be satisfied that the donor has capacity to understand the risks involved, the nature of the procedure and the consequences and can therefore give informed consent.  We also have to be satisfied that they are not being pressured or coerced in any way and that there is no reward involved – the latter is illegal.

Much depends on the Independent Assessor (IA) – a volunteer called on by the transplant team who also undergoes thorough training. They interview the donor and the recipient to ensure that there is no evidence of pressure being brought and that the donor understands the procedure and the risks involved. The donor also signs a statement to say that no reward is involved.

A huge amount of work goes into each case before we see it – from the transplant team, the IA and the staff at the HTA. Some of the evidence is pretty black and white – what isn’t always so clear is whether or not there is pressure being brought to bear or perhaps if there is an economic relationship between donor and recipient. The IA interviews the donor and recipient separately and together and is alert to body language and other signals that not all is as it seems. Sometimes relatives come from abroad and it isn’t always straightforward. It is a very responsible task for both the IA and the panel.

What I shall miss – especially in the midst of all the horror that is on the news at the moment – are the gentle but heartrending statements quoted by the IA – such as “I just want my sister to have a normal life and be there for her children” “I have to watch my son dialyse twice a week – he is a young man, I just want him to have a better chance, I don’t need two kidneys”. And from the altruistic donors – some of them have seen others benefit from a transplant and the huge impact it has had and want to “give something back”.  That’s quite a gift!

The good news is that the number of donations is increasing so more people are being given their lives back but I don’t underestimate what a difficult decision it is to be a living donor and I really do applaud those who do it. I will miss reading the stories every week and being reassured in a world where much is wrong there are some amazing people who do good things.

Monday, 11 August 2014

Small amounts of money, carefully given, can change lives.

Last month I was once again in attendance at the Central Criminal Court (Old Bailey) to hear the Annual Report of the Sheriffs’ and Recorder’s Fund. You may remember that I attended a riotous (well not literally!) evening “Trial and Error” there in March to raise funds for this charity. 

The charity is supported by the Livery Companies of the City of London as well as charitable trusts and generous individuals. It is not a wealthy charity and makes only relatively small grants – but they have the power to change the lives of people leaving prison. Here are some worrying statistics:
  • nearly half of all serving prisoners have no qualifications
  • 42% were expelled or permanently excluded from school
  • 58% of women and 53% of men identified unemployment and lack of skills        as contributing to their offending
  • 45% of serving offenders lose contact with their families
and the most shocking of all – 30% of people released from prison have nowhere to live and many only own the clothes they stand up in .... and then we are surprised at the rates of re-offending.

This charity works closely with the probation service and gives grants for training in a whole range of skills – food safety and hygiene, beauty therapy, HGV, social care, book-keeping etc – 85 this year; grants for household equipment up this year to 358. The Chairman said that this appeared to show a larger number of beneficiaries moving into their own accommodation. The largest figure was - and always is - for clothing, a total of 619 grants.

It is a charity that the Needlemakers’ Company supports each year and I am happy to support personally – they spend just over £200,000 a year but change and improve many lives.

Saturday, 12 July 2014

Assisted Dying Bill in the House of Lords

Recently a panel of nine Supreme Court Justices (the UK’s highest court) turned down a challenge to the status quo on the ‘right to die’ brought by the widow of Tony Nicklinson – the “locked-in syndrome” sufferer who fought a long campaign for assisted suicide – and Paul Lamb, another severely disabled man.

But, in a highly significant intervention, Lord Neuberger, the court’s president, said that they were doing so partly “to enable Parliament to consider the position”. He continued that if MPs and peers do not give serious consideration to legalizing assisted suicide there is a “real prospect” a future legal challenge would succeed.

At the same time, on June 5 there was the first reading of the “Assisted Dying Bill” in the House of Lords proposed by Lord Falconer of Thoroton (a former Labour Cabinet Minister). This was a formality and merely starts the process: the debate will be on July 18. In summary this is to Enable competent adults who are terminally ill to be provided at their request with specified assistance to end their own life; and for connected purposes.”

In effect this would enable terminally ill patients deemed to have no more than six months to live to be prescribed a fatal dose of drugs and is apparently largely modeled on a system operating in the US state of Oregon. The Bill will require patients to demonstrate that they have reached a “clear and settled intention” to end their life.

Clearly there are good arguments on both sides and it is unlikely that a way forward will be found that will answer them all.  Interestingly the former Archbishop of Canterbury, George Carey, has spoken out in favour of the bill saying “promoting anguish and pain, the very opposite of a Christian message of hope”. The current incumbent disagrees. It isn’t an easy subject but has to be debated.

One can only look at personal experience. My mother had cancer over many years: it was a bone cancer and she suffered a great deal of pain on a daily basis. Whether pain control is better these days (she died 30 years ago) I don’t know but it wasn’t then. She was remarkably brave and even stoic and lived life to the fullest extent possible. However, having suffered many of those dark moments when the pain was almost unbearable her greatest fear was dying in pain. 

Some months before she died, she told me that her GP had assured her that if, at some point, the pain became unendurable he would ensure she had the means to take her life. (I wouldn’t write this if both parties were still alive.)  At the time I didn’t believe that he would and wouldn’t have minded had he done so. The thought that she had the control gave her the courage to continue. She died peacefully of kidney failure so it was never tested. I never asked him the question because he would not have been able to give me the answer “yes”.