Thursday, 28 May 2009

Scientific Advisory Board (SAB)

The highlight of the week was the meeting of Breast Cancer Campaign’s Scientific Advisory Board (SAB). It meets twice a year and between the two meetings will recommend grants of about £5.5 million for research into breast cancer across the UK and Ireland. It is a huge responsibility and hundreds of people are involved. Every grant application is reviewed by at least two and sometimes as many as six experts in their field from across the world. Only then does it go through to the SAB for a further review and then the recommendations are made to the Trustees. In any grant round there are literally hundreds of reviewers.

I suppose while the tales of MPs expenses are still reverberating through the airwaves, it is worth noting that the members of the SAB receive no remuneration at all. They are all leaders in their fields, holding down very senior and demanding clinical and scientific posts. I am not sure that you can call the many hours they spend reviewing the grants and attending the meetings a labour of love – but it certainly is a labour of altruism, ensuring that only the best quality research is supported in the interests of women with breast cancer, now and in the future. We do pay their expenses but a night in a Travelodge, some sandwiches at lunch time or, for a two day meeting, a meal in a local pizza restaurant is not exactly an inducement! (And absolutely no disrespect to Travelodge who do a great job – but it isn’t the Dorchester!).

Staff members have no involvement in the decision making, we facilitate the process and members of staff, patient representatives and trustees are able to come in and observe. A very robust and transparent process and I trust that our supporters sleep well knowing how well we look after their money.

Sunday, 24 May 2009

A cappuccino moment?


What is it with a cappuccino? I am very fussy about coffee - love the stuff, the good stuff and limit my intake so it has to be worth it. I buy my coffee from a specialist coffee shop (Higgins in Duke Street) and grind it myself; I have my own stash of freshly ground coffee at work and one of those filters that you hang in a mug to make fresh coffee. It is expensive coffee but when you work out the cost of a take-away coffee every day - save a fortune! I drink it black and have for 30 years. So why when I go out for a coffee or a meal do I suddenly order a cappuccino?

It looks great and smells good; I can twirl the chocolate into the froth so it is nice to play with, but when I start to drink it, it is always a disappointment. I have tried having an extra shot of coffee but it still doesn't work. Am I so shallow that I think I am buying into a lifestyle? (Wearing trainers doesn't make me feel like a runner).

On my STEP ON IT walk last week I stopped for breakfast and couldn't quite face milk so had black coffee and toast, and suddenly realised that I have been buying froth when what I really wanted was substance. I am sure that there is a profound lesson to be learned there but not yet quite sure what it is.

I haven't had a cappuccino since but wonder if it will last...

Thursday, 21 May 2009

Wearing another hat

A day out of the office at a meeting of the Human Tissue Authority: I am a lay member of the Authority, joining just over a year ago. For those who don’t know – a bit of background: the HTA was set up as an independent watchdog to protect public confidence by licensing and inspecting organisations that store and use tissue and cells for purposes like research, patient treatment, autopsies, teaching, and public exhibitions. It also gives approval for organ and bone marrow donations from living people. The HTA was established under the Human Tissue Act 2004 (HT Act), which itself was in response to revelations in the 1990s that human organs and tissues were being retained in some instances without permission or knowledge of their families.

The result is that we have a very well regulated and monitored system where all premises doing any of the above activities – apart from living donation approvals – have to be licensed. I knew about the HTA and its work through Breast Cancer Campaign’s own experience in supporting research which uses human tissue but had no idea that its work also involved places like museums. (On the subject of museums – if you are not squeamish and especially if you have teenage children – the Hunterian Museum at the Royal College of Surgeons is packed full of creepy things like skeletons and things in bottles. Actually fascinating and they do special events for children in school holidays).

I am on the Authority as a lay member and not representing any particular interest but contributing to the strategy, planning and monitoring of the Authority’s work. I hope that I can bring some of my own experience in managing an organisation of a similar size and with the problems which beset all employers of small and medium sized organisations – whether they be corporate, government or charity.

I am working with some very interesting and talented people – a very diverse group from a biological anthropologist to a coroner and nurse. No lack of challenge and debate around the table but we all have one thing in common – the interests of the people we serve. I have been involved in various other activities, including sitting on an organ donor panel - a living person who has never met the possible recipient may be considered to become an organ donor. This is called 'altruistic non-directed donation'. This has to come to a panel of the HTA to ensure that the donor is absolutely aware of the risks, is competent to make the decision and has not been pressured in any way. I have been involved in a few of these and I think it is very humbling that people are prepared to take the risk of donating (usually a kidney) to someone they will never know purely as an altruistic gesture. If you want to learn more about this or perhaps even donate your body to medical science -
http://www.hta.gov.uk/about_hta.cfm

One area which particularly concerns Campaign is the question of informed consent. Watch this space for information on the Breast Cancer Campaign tissue bank details of which will be announced at the end of the summer. We know that over 90 per cent of women when asked before surgery are very pleased to have their cancerous tissue used for medical research and freely give consent. The confidence that this shows is one of the consequences of the work of the HTA giving confidence that this is being done properly.

PS. The next time you read a disparaging remark about quangos and how much they cost – many of them are like the HTA which don’t cost very much but have a huge impact on people’s lives now and in the future. All its financial and other information is on their website – so they are transparent as well.

Wednesday, 20 May 2009

Expenses

There aren’t many stories that are genuinely in the public interest but the Telegraph has hit the jackpot with the parliamentary expenses story – in more ways than one – there were hardly any copies left in the newsagent.

What is really annoying me the most is not that they did it but their attitude. It is clear that most of those caught out seem to have an attitude that operating within the rules abrogates any form of moral judgement or even commonsense. The comment that finally caused me to shout at the radio was from Tam Dalyell who tried to claim for bookshelves worth £18,000 two months before he retired (Google him on the Telegraph’s website if you want to see the rest). This was turned down and he was “only” allowed £7,800. His comment was, “The bookcases were needed for all the Hansards I’d collected. I also do a lot of obituaries and wanted them to be in order. And indeed my political books.”

In the real world when you retire you get a card and perhaps there is a whip round for a gift. This is what so many of us feel is so astounding.

There are many very hard-working MPs and it is a pity that they are all being caught up in this whether guilty or not. It is also a pity that there are genuine expenses which are now being made to look suspect. I hope that the story hasn’t got much longer to run – I am hoarse from shouting at the radio.

Monday, 18 May 2009

I stepped on it (not in it)


Do you remember the scene in Forrest Gump where he starts to walk, then runs and runs across America several times? Well – I didn’t exactly do that but...as Number 1 husband was away for the weekend and I had no other plans apart from dinner on Saturday night, I thought I would set off for a walk and see where it took me. Dear reader – I walked the 46,000 steps as you will see from the rather blurry photo of my pedometer taken propped up on the neighbour’s hedge with my phone. I still can’t quite believe it. It did take most of the day – probably about six and half hours of walking (I am slow) and another 40 minutes or so of resting/eating.

So this I have learned:

1. Even someone as unfit as I am can walk the distance.
2. Never believe the weather forecast (it did rain but not the showers forecast).
3. Hampstead Heath is the most wonderful place – I am sure that thousands of people know that but I have only ever visited parts of it, never wandered onto it without worrying where I might end up – there is every sort of terrain imaginable and even in the gloom and drizzle it is joyous.
4. Toast and black coffee is perfectly OK to eat for long walks especially if you can sit down quietly for 10 minutes and have a break. For those who are interested in trivia, I also had a roll of wine gums and two sticks of droe wors (for the non-South Africans that is a kind of dried sausage available in places where South Africans shop) and of course water.
5. You need to drink more water than you think you need especially if your legs start to feel a bit strange.
6. Unlike running (so I am told) if the legs feel wooden, sitting down for three or four minutes is great and revives you.
7. Radio 4 and the BBC World Service are worth the licence fee in themselves – I downloaded The News Quiz (Friday 8 May is the funniest programme I have ever heard). The Now Show, Business Daily, From Our Own Correspondent, Start the Week and a few more walked with me all the way.
8. It felt very surreal driving along the route that I had walked earlier in the day to have dinner with Number 1 son and family.


There was another incentive – partly thanks to the Hampstead and Highgate Express for giving STEP ON IT and me a write up which generated £100 donation to my justgiving page. It wasn’t entirely accurate as I said that I would do it “over a weekend in May” which was translated into the bank holiday weekend (the statistics he gave don’t quite add up for a three-day weekend but never mind). However, the thought that family and friends might be looking out for me next weekend was a great incentive to do it anonymously this weekend. I was quite disconcerted when he asked how I was training for the walk – umm....going for walks didn’t sound quite serious enough. Also, what is this obsession with putting one’s age in? It is clear from the photograph (see below) that I am not in the first flush of youth – does it really matter?

Please check out my (much younger!) colleague Lisa (and her blog
http://46thousand.blogspot.com/) who is power-walking STEP ON IT and training every morning at 6am. She will no doubt do it in great style and at speed. Thanks for your encouragement and I will be following your progress.

Friday, 15 May 2009

Gee whiz


When I got back to my car the other day I noticed that some sad individual had “keyed” it. I know this happens all the time but to happen to my little electric GWiz it seems like kicking a puppy. OK - I know it is nothing like kicking a puppy as a car is inanimate and a puppy is very animate so please don’t write to me – but the car looks like a leftover from Postman Pat and even if it is a very serious black colour it does have pink and purple daisies all over it – how humourless do you have to be to scratch something that looks so ridiculous.

Thursday, 14 May 2009

Festival of the Sons of the Clergy

I spent a couple of hours on Tuesday night in the glorious surroundings of St Paul’s Cathedral for the Festival of the Sons of the Clergy. I was not wearing the Breast Cancer Campaign hat (not wearing a hat at all actually) but rather that of the Worshipful Company of Needlemakers – more about that some other time.

There is a whole world in the City of London apart from the bankers – the world of the Livery Companies – originating in the old trade guilds from about the 14th century. Bear with me for a moment for a bit of history – they governed all the trades which took place in London and were there not only to protect the trades but to ensure that if you called yourself a master carpenter you had a particular level of skill. Today we rely on degrees and diplomas – then it was apprenticeships and the guild protected the rights of the apprentice as well – similar to trade unions (Wikipedia has a good summary of Livery Companies).

OK – that is pretty much a generalisation – but the companies or guilds which emerged from that process are still alive and well and although, like the Needlemakers, the trade has left London, and indeed the UK, they still support allied activities and charities around the City of London.

For me it is a great source of enjoyment and I have met so many interesting people and made good friends. Last night all the Livery Companies attended this very beautiful service with spectacular music in aid of the Sons of the Clergy Charity which supports the clergy and their dependents. You didn’t have to be Christian in order to feel spiritually uplifted by the music and the magnificence of St Paul’s.

We then went to a local restaurant for dinner – wisely they gave us exclusive use of the basement room – we were a rather noisy lot!

Monday, 11 May 2009

Campaign awards reception


A very emotional and exciting evening at the House of Lords last week: Breast Cancer Campaign has an annual reception to present awards in a number of categories to supporters – both corporate and personal, volunteers and the research team of the year.

While the general news is relentlessly depressing whether it is about MPs’ expenses, the wider economic situation and death and destruction around the globe – it is good to be brought back to the reality that there are a huge number of people here who do great things pretty selflessly and also carry significant individual burdens with courage. It is my great privilege and pleasure to speak about the activities of the charity and announce the awards but the best part of the evening is to meet those individuals upon whom our research is entirely dependent – the fundraisers.

The research team of the year was from Sheffield and their research results have been widely publicised and could change the way breast cancer patients are treated. The team found that giving two drugs, a chemotherapy agent and a bone protecting drug in a particular order and at specific times showed an almost complete destruction of breast tumours. Significantly these are both existing drugs so the approval process should be short and the cost modest.

Campaign has been supporting this research for some years, helped by an ongoing commitment from one of our corporate partners, Debenhams, and there is a now a clinical trial in progress related to this work.

The most moving part of the evening is always the speech from one of our supporters who speaks about their personal experience of breast cancer. It is a very humbling experience - as our speaker this year, Kirste Snellgrove, said:

“Cancer really doesn’t have to mean the end. It is a life sentence but it doesn’t necessarily mean a death sentence. So many positive things have come out of it for me. It just seems so ironic that it took cancer for me to realise how lucky I am in life. I am happy, positive and in love. I now know how loved I am by my friends and family. I would not swap my life if I had the chance.”

Thursday, 7 May 2009

STEP ON IT


I am trying to build up the amount of walking I am doing for STEP ON IT and if you see my shape in the photograph you will agree that this is no bad thing. However, I realised that I would need a small backpack - I don’t think that a backpack is a good look on a woman of mature years who is both short and round but wearing a bag over one shoulder won’t work. I bought a small backpack and it is amazingly comfortable - I might wear it all the time but I need to get in a bit of practice. I see my colleagues (the ones who run and climb and trek and cycle) slinging theirs on and off with casual aplomb. I either put my arm in the wrong way or the wrong side, and when I tried to get the second arm in got twisted and looked as if I had been handcuffed with my hands behind my back. Some practice is required!

Wednesday, 6 May 2009

In praise of mature students

I went to the Barbican Library on Saturday to ensure I had enough to read over the weekend. It is one of my favourite places and I have been a member since I worked in the City in the 1980s. If you have an addiction to crime fiction as severe as mine this is the only way to feed it.

Anyway – that isn’t the point – the point is that there was a graduation taking place for the Open University. The sun was shining and everyone was out on the terrace having their photographs taken – graduates of all ages – and some of very mature years indeed. It was a joyous thing to see – many of them will have done that degree for its own sake and are not facing the agonies of finding employment in this difficult climate. What a wonderful legacy Harold Wilson and Jennie Lee have left for us.

Tuesday, 5 May 2009

Why a blog?

Why a blog? I am not so vain as to think that my words will be riveting to all or even some of the world at large. I do think that it might be interesting to hear about some of the things I become involved with through my job. Working for a charity is immensely rewarding but is not a warm and cuddly thing – not sure that it ever was. We are in the same commercial environment as any company – our cash is bringing in precious little interest and our supporters are being squeezed and having to make choices about how they spend/donate their money.

What is very different about us is that no one has to give us money: unlike government we can’t take it through taxes (and we are a darn sight more careful with our expenses……) and people don’t need to engage with us in order to eat or live or even impulse buy! What they do is take a leap of faith into the future by supporting research which may not bear fruit immediately – or in the case of many of our donors who are very ill with breast cancer – even in their lifetimes.

And yet – people still do support research. I would like to think that they have the same passion as I do – a great curiosity about why? and why not? and a refusal to accept that this is the best it can be. The statistics are showing us that the number of women (and men) dying of breast cancer is declining year on year – but these aren’t statistics – they are our sisters, mothers, daughters and friends and, yes, some of our husbands and dads as well. Also - the treatments that those who survive have to go through are pretty grim. There has to be a better way and every part of what we do is geared towards that. The choice of a puzzle piece for our logo was very significant – each piece of research is another piece of the puzzle and every now and then a chunk of the picture is revealed and diagnoses and treatments improve and more women survive.

This will be a personal blog and if it isn’t updated for a couple of days it’s because I am away – no one else will be updating it. As so much of my time is spent involved in the work of Breast Cancer Campaign it would be na├»ve to think that I won’t write about that: it also gives me a chance to write about the facts as we see them and not as the media might represent them (we really do love you guys but not all stories are as black and white as you may have to report them). I will also write about other things which I hope you will find interesting.

I will start off with where the personal meets the day job: I am constantly in awe of my colleagues who between them have run marathons, half-marathons, 10k and 5k runs; they have climbed the Great Wall of China and trekked across Mexico (not recently!) and climbed the Three Peaks – in addition to working very hard.

Fortunately none of this is part of our job descriptions which means that I have been able to maintain my slothful status. However, they have now come up with a challenge which even I can’t refuse – STEP ON IT. The challenge is to walk 46,000 steps – around a step for each of the 45,500 women and 300 men who will be diagnosed with breast cancer this year in the UK. This may not seem like much of a challenge to you but as someone whose pedometer rarely registers in the low thousands – it sure is a challenge to me!!

In order not to seem too much of a wimp about this I am proposing to do it over a weekend in May - it is I believe the equivalent of about 22 miles so it will be a challenge. I will walk with a pedometer which records the total number of steps and, providing I am still able to walk on the Monday, will get my colleagues to check it and sign me off.

Naturally I am delighted to share this news with all of you – but not just for your hilarity and mirth – I would really appreciate it if you would sponsor me.

To be really serious for a moment - it is going to be a tough year for raising money - just at the point when the demands for research funding are increasing substantially and such progress is being made. Breast cancer doesn’t recognise credit crunches and over a weekend over 65 people in the UK will die of breast cancer. That in itself is pretty powerful motivation for me but the biggest motivation is the women for whom this is too late but who spent their last few months raising money for research. Alison, who was our first committed supporter when we had two staff and had just supported our first research project, raised money through years of treatment until she died. Liz who raised the largest amount of money we had ever received from an event at the time – just months before she died. She said – “I need to do something big and quickly so that this doesn’t happen to my daughters”. The list is long and we are supporting research which is world class to beat breast cancer.

So - you can donote through my
Justgiving page or
donate through Breast Cancer Campaign’s website which is secure through SecPay. (If you are a UK tax payer – please tick the Gift Aid box and we can grab some of your tax back from the taxman.) Alternatively, you can send me a cheque or a charity voucher made out to Breast Cancer Campaign to Pamela Goldberg, Breast Cancer Campaign, Clifton Centre, 110 Clifton Street, London EC2A 4HT.

I will let you know how I get on and if you’d like to do a STEP ON IT challenge yourself –
click onto the website