A slow week for blogging

Lots of meetings last week which meant that there wasn’t much time for blogging. Tuesday I was at the National Cancer Research Institute (NCRI) board meeting. It is an interesting organisation probably invisible to those outside the field of cancer research. You can look on the NCRI website for more information. It is a virtual institute with membership across the spectrum of cancer research from the health departments of the four countries of the UK, the three research councils, 13 charities and industry. One of the objects is to facilitate actions where there is clear value to patients in partners working together to coordinate and also avoid unnecessary duplication.

It is also a great opportunity to get together with colleagues and exchange views and hear about some of the challenges in other cancer areas.

Wednesday was an all day meeting with the Food Standards Agency. I am a lay member on the General Advisory Committee on Science to the agency and the purpose of this day was horizon scanning – future foods for healthier eating. Horizon scanning has such a quaint feel to it – I feel as if I should be on board ship scouring the horizon with my binoculars for sight of land….. This was rather more focussed (pun unintended) as we were looking at things like developments in food production and technology and the consequences of climate change on food production and diet.

There are more “what ifs” here than this small brain can cope with but looking at just one aspect – obesity - what is clear is that unless there are significant changes we are looking at the percentage of obese adults increasing inexorably. The figures given for women were around 24 per cent of adult women being obese (having a BMI over 30) in 2007 to 35 per cent in ten years. (The figures for men are not all that different). There are serious health consequences in diabetes, cardiovascular disease, hypertension and cancer. We know that post-menopausal obesity is a risk factor for breast cancer as well.

Ideal diets and changing behaviour were just two aspects of what was discussed: there was such a diverse range of people in the group covering disciplines such as social science, agriculture, fisheries, poultry production, the environment agency – and some of us there to ask why and why not and some of the questions we ask each other in the pub….

Any intentions of working this weekend (in between making birthday cake for grandson and attending birthday barbecue) were knocked sharply on the head. All power was lost to the office building and as I write mid Monday afternoon we have only just had full power supply restored, but bringing up the computer system takes a bit longer. Interesting time in the office – lots of people speaking to each other instead of emailing and a lot of clearing out and tidying up going on…… We have discussed this in our risk assessment discussions and have taken a view that providing an alternative power supply at some expense wasn’t justified by the rarity of the occurrence. As this is the first time in about 12 years I think it is the right decision. But it is a bit scary how dependent we all are on our computers. I suspect there may be a return to printing stuff out – just in case.

This is altruism

Wonderful article by Jeremy Laurance in The Independent on Wednesday (and covered elsewhere, including Thursday’s “Thought for the Day” on Radio 4), about the man who gave up his kidney to a total stranger. This is one of 15 such donations last year – an increase of 50% on the previous year. The majority of organ donations come from people who have signed a donor card to donate organs after death – just over two thirds. A significant number come from living donors who are relatives or close friends of the recipient. The numbers who donate to a total stranger are small but the altruism is heroic.

As you will see from an earlier blog, I am a member of the Human Tissue Authority which regulates organ donation. As Vicki Chapman, Director of Policy and Strategy at the HTA, said: "It is remarkable to see an increase in the number of people who want to donate a kidney to someone they do not know. We expected to see a small number of cases when we first started approving this type of transplant but we did not expect to see the number rise so significantly after just one year."

One of the requirements is that all cases of altruistic non-directed donations (i.e. a living person is donating an organ and they do not know who will receive it) are referred to a panel as the final part of the process (see the HTA website for more information). All Authority members can act as panel members and we receive training to help us. I have had the privilege to sit on several panels and I am always humbled that someone is prepared to do this. (NB you mean donate, rather than be prepared to sit on a panel...worth being specific).

Given most of the depressing commentary on human behaviour in our national press – this gives us pause for thought (and quiet celebration) – especially when you consider the 1,000 people who will die this year because of lack of a donor.

A cloudy day in London Town

Number One Husband went off to play golf which meant that he would start his weekend marathon of watching rugby/golf/cricket in a better or worse mood depending on how the round went. The golf went OK but the rugby didn’t and South Africa beat the Lions (I know you care). Despite both coming from South Africa originally we support England. After all we have spent more years here than there. He has a rather complicated list of national loyalties of whom he supports if England is not playing which I won’t bore you with here but, suffice to say, it ends with “anyone playing Australia” – that Southern Hemisphere rivalry dies hard.......

I decided to go to Covent Garden at 10 am, when the shops open and when it is surprisingly peaceful, in search of a new waterproof/anorak jacket. Henrietta Street has a number of shops catering to the outdoor climbing/hiking/camping fraternity and I am a bit of a fish out of water there. Having failed in my mission I had some breakfast and walked back through the market and spent the most hilarious 20 minutes of the week – or even the month.

If you are around Covent Garden and see a horseshoe shaped crowd applauding wildly seemingly at nothing, you have just encountered Ben Langley’s audience. This street performer (also seen in pantomime, Edinburgh Festival and creator of Ha Ha Hamlet – thank you google for all that) briefs the audience to follow his applause cues and then goes into the audience and applauds wildly with them while everyone watches confused tourists and other visitors stop and try and work out what everyone is applauding. (That doesn’t read quite right – you had to have been there.) I don’t normally bother to watch the various buskers who inhabit the Garden but this is one of the funniest performances I have seen – I was weeping with laughter. He is clearly a talented actor, mime and stand-up and no-one in the audience left during the performance.

Then on to the Barbican Library to see if someone had handed in my missing library card which must have been stuck in a book I returned – someone had – lovely people who use the Library. I left Number One Husband and friends to rage at the rugby and went to read in peace.

Campaign short videos

If you scroll down the right hand side a bit you will see a link to four short films which can also be accessed from YouTube. These are very short and the first two are conversations with two Breast Cancer Campaign supporters who have had breast cancer and why research is so important to them. The third is all about wear it pink which is the biggest fundraising event for breast cancer and the last one is why all of that is so important – how the money is being spent on research. Fundraising may look very pink and fluffy but there is such a serious purpose behind it – this is to show you that while research is generally a long term process, some of it can bring benefits to patients relatively quickly.

On a personal note as the weekend approaches, the weather forecast seems quite good so might be motivated to walk a bit – Number 1 husband will be glued to any, or all, of the golf, the cricket and the Lions rugby getting stressed, depressed or elated depending on what happens. Personally, I can’t take the emotion – go for the edited highlights every time.

A day of two halves

I spent Tuesday morning at the Human Tissue Authority (see an earlier blog about this). We were looking at the Communications Strategy – how the authority has performed and what the challenges are moving forward. It aims for transparency in everything it does and it is worth going on the HTA website (new and very good) to get a feeling for the range of activities. Every one of us may be touched by the work that the HTA regulates – literally from cradle to grave: from the donation of umbilical cord blood when a baby is born through to the coroner’s service if we die unexpectedly. And of course, if you are unfortunate enough to develop cancer (many other diseases as well) you may be asked if you will donate tissue removed for research – we hope you will.

One of the authority members, Professor James Ironside (Professor of Clinical Neuropathology at the University of Edinburgh), is leaving the authority as he is going to the Medical Research Council as Director to set up a UK Brain Banks Network. As we are currently doing the final due diligence on our national breast cancer tissue bank, I now have another source of friendly advice along the way. For more information have a look at the MRC website.

Hotfooted it back to Campaign’s induction day for our new scientists; these are the scientists who were successful in gaining funding from us in 2008. We bring them all to London, they talk to us about their research; they meet each other (and many collaborations have started this way) and we get to meet them. We also talk to them about how we raise the money and how we need them to help us in communicating science to the non-scientific world – a very important part of what we do. As always a very awe-inspiring group – having sat in on the deliberations of our Scientific Advisory Board twice a year I know only too well the many and complicated hoops they have had to jump through. (I think that metaphor has run away with me but you get the picture).

Then back to the office to work on the papers for Campaign’s trustee meeting next week.

The importance of science

What a week to be away! On the political front it was hectic and I am very concerned to see that science yet again seems to be taking a back seat as a result of the merger between the Department of Innovation Universities and Skills and Peter Mandelson’s department – now the Department for Business, Innovation and Skills.

This is, to my mind, a downgrading of the importance of science – which includes but is not exclusively medical research. I know I am a few days late with this but feel strongly enough to add my voice to all of those already expressed. At what point will political parties understand, really understand, the value of science to the prosperity of the country and the benefit of human-kind. If scientists do not have the freedom, the environment and the funding to explore we will all be much the worse for it – not immediately but soon enough to matter.

I loathe the linking of “science and technology”. They are not mutually exclusive but it implies that the two are inextricably linked. If research proves that a change in diet could prevent cancer – that’s science but it isn’t technology. If science identifies a new protein which could be linked to disease – it takes a long time before that can turn into technology. Medical and other scientific research would be nowhere without modern technology but that is the means and not the end.

Technology and entrepreneurship are vital – I wouldn’t be posting a blog on the internet without them - as are innovation and skills but it isn’t science.

There has been quite a substantial response to this decision and I think that the statement by Martin Rees, President of the Royal Society sums up the potential benefits but the substantial risks:

"Science and innovation should be the bedrock on which the economy builds as we come out of the current recession. Placing science alongside business and enterprise should help to make that happen. The UK became a world economic power through applying science during the industrial revolution and today we are still home to many of the world's leading scientists.

However, in the rush to unlock economic benefits, we must ensure that we don't divert resources away from basic research. To maintain a flow of groundbreaking ideas and ensure that the UK remains competitive in attracting mobile talent, it is imperative that the science budget remains strong and ring-fenced. In the US we have seen the positive impact of science being moved closer to the centre of the administration, it is time we followed suit."

Tomorrow we will be publishing a report on the effects of Full Economic Costing (fEC) on medical research in universities – the picture that researchers paint is not very positive for charity-funded medical research.

Collaboration – Never: Competition – Definitely

Having written last week about collaboration between breast cancer charities – I didn’t tell the whole story. The night before I published my blog, we competed against Breakthrough Breast Cancer in the Charity Softball League. Just in case you thought it was all love and co-operation – here is the posting by a colleague on our intranet about the match. All good fun – but never underestimate the competitiveness of those who work in the voluntary sector!

“Breast Cancer Campaign 10
Breakthrough Breast Cancer 9

An extremely close game, with lots of twists and turns: we were ahead after the 1st, 2nd and 3rd innings, before Breakthrough took the lead in the 4th. But we showed an abundance of courage and professionalism to keep the lead down to one run, before picking up 2 at the very end of the game to deservedly snatch the win, the first of the season.
A great team effort.”

Tube strike

Things have been quiet in my blogosphere as I have been in Italy on holiday. The purpose of the trip was to attend a friend’s wedding and we decided to make it our summer holiday. Harold Wilson once said “A week is a long time in politics”. This week certainly was and I will comment on some of the very negative departmental changes in a later post.

I have lived in London most of my adult life and much as I love holidays I usually love coming home to London. Not this time – the thought of arriving back during a Tube strike put a real dampener on the last couple of days. Fortunately both Gatwick Express and our local minicab company were efficient and spreading the cost of the cab between four of us wasn’t too bad.

I was appalled to read Bob Crow’s triumphalism this morning “I’m really pleased, it was a solid success. The whole city ground to a halt and the disruption it caused was all over the papers”. Good for you Mr Crow. Who are these people you are preventing from coming to work – they are the millions of people who are facing bankruptcy (business owners), redundancy (their staff), pay reductions, four day weeks and pay freezes. I imagine they are solidly behind your demand for a 5% increase and no guaranteed redundancies. Newspapers are not always accurate so perhaps the report of 43 days holiday (for most of the real world 25 is standard); 36-hour week and free travel on Tubes and buses for staff and partners (worth thousands depending on where you live) is wildly off the mark – so we should not be envious.

Some of the people affected when the “whole city ground to a halt” are those doing research to save lives, or even treating those people whose lives are at risk today. A big vote of thanks to Breast Cancer Campaign staff most of whom managed to get into work at considerable inconvenience and those who couldn’t took a day’s leave or arranged to work from home.

Just good friends?

New Philanthropy Capital’s report “What place for mergers between charities” highlights Breast Cancer Campaign and Breakthrough Breast Cancer as two breast cancer research charities which are potential merger candidates. Our collective and individual aim is to beat breast cancer for women now and in the future, and we believe that the only way to do that is through research – we share that aspiration with Breakthrough Breast Cancer, however we may choose to word it. So whatever we do is driven by what will benefit women. We put an enormous effort into ensuring that we fund the best research in the most effective way and maximise our fundraising in order to do this. As part of our discussions as to how we might best achieve our aims, we have for the past decade discussed if we might be more effective and efficient together, rather than separate.

I have regular meetings with the Chief Executive of Breakthrough Breast Cancer, Jeremy Hughes, (and before him with his predecessor, Delyth, now Baroness, Morgan) and our meeting usually includes Samia al Qadhi, the CE of Breast Cancer Care, on a monthly basis.

Our senior management team members also have regular meetings with their counterparts and other members of staff meet regularly when we collaborate on a whole range of issues, particularly policy and public affairs. Our trustees have met and our scientists meet on other boards and other collaborations. We fund research in the Breakthrough Centre and have supported psychosocial research commissioned by Breast Cancer Care.

It is not as if the idea of merger comes as a complete surprise to us! Why wouldn’t we discuss it regularly if it makes sense – as we do? Campaign’s trustees have a discussion on enhancing effectiveness which includes collaboration and merger as a standing item once a year and have done for the last ten years.

What we need to be sure is that whatever we do achieves the best for women with breast cancer – nothing less.

What NPC’s comments about fundraising fail to mention is that both charities derive significant revenues from the corporate sector - even in these tricky times. Our corporate partners are very committed to what we do but we know that, were we to merge, some of these very substantial partners would disappear overnight as they view each other as competitors – and this is consistent throughout the voluntary sector as all of us who work in charities know. This would have a significant impact on our income without very much in the way of financial savings as this is one of the most cost effective ways to raise money. We run an extremely lean organisation and it is somewhat naïve to imagine that a merger would automatically result in instant savings – our assessment and discussions have shown that there would be less money available for breast cancer research as a result.

There is no question that donors are not always clear which breast cancer charity they are supporting – that doesn’t only apply to breast cancer or cancer – but I am as likely to be told that someone thinks they are raising money for Campaign by doing the Race for Life (a CR-UK event) as confusion with a Breakthrough event.

That does not mean that we shouldn’t always look at how we might describe and differentiate ourselves to donors, and the fact that NPC’s description of us is inaccurate, shows that this is an area we should, and will continue to monitor. We don’t support “other institutions’ research”, we are in fact a response mode funder where the money follows the best research in the UK and Ireland regardless of location. It is “research at centres of excellence” rather than “other institutions’ research” which implies a passive acceptance of others’ research, rather than a very robust, rigorous and independent peer review process.

Each grant is evaluated on its own merits so that we can direct donated funds where we believe they will benefit patients the most, and where we can be assured that the largest possible proportion of our income goes directly to research, as it is often these ratios that drive merger discussions.

Ratios do make interesting reading: one cannot deny that the CR-UK merger has been successful on many levels, yet their cost ratios are high. The total cost of raising funds is £130 million – 27% of total income and close to 40% excluding legacies. It is what is required to run the world’s largest cancer charity. In comparison, both we and Breakthrough are punching well above our weight!

I come from a business background – years in the City as a financial analyst and then some years as a management consultant – working with joint ventures and mergers. In business, merger is not the panacea – charities are no different. Wearing my business hat, this would be the moment for me to list all the failed mergers, the ones that did not add value, where brands were lost, where income declined and fewer services were delivered. I will leave you to do the research – you won’t have far to look. NPC say that their research shows that there “may” be a compelling case to “consider” merger. Somewhat hedged statement – there either is or there isn’t a compelling case and the day that we can deliver more for women with breast cancer together than apart, we will. Until then, there is still much to do; both Breast Cancer Campaign and Breakthrough continue to need support to research the most common cancer in the UK – one that steals so many of our mothers, sisters and daughters, and occasionally fathers and sons.

Switzerland

Just back from a long weekend in Switzerland – Basel to be exact - where No 1 Daughter and family now live. We were not thrilled at the idea that two out of four of the adorable (and adored) grandchildren were going to move from a few minutes away to a plane ride away. However, thanks to City Airport we can now do door to door in less than four hours. Daughter had a party to celebrate a big birthday with the theme of “vintage glamour/retro chic”. Easy for me – just did the 70s flower power hippy thing and No 1 husband dressed up in white tie and tails (not quite a winning combination but we melded in).

Whatever anyone tells you about the Swiss – they may be staid and conformist and the trams run on time and no doubt all the clocks chime on time: but when they party, they really party. A very serious banker turned up in full Rocky Horror garb and was happily dancing away in knickers, suspender belt and a basque – and he started off at over six feet before putting on the size 44 red sequinned platforms. Daughter wore a dress I had made for me in the 1970s which has not fitted me in some time and now even if it did would expose more flesh than tasteful. Looked great on her! We had a number of flower children, a thirties gangster and a southern belle and some 1960s reprises – huge fun.