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.