Thursday, September 30, 2010
Sunday, September 26, 2010
Saturday, September 25, 2010
Friday, September 24, 2010
Tuesday, September 21, 2010
Monday, September 20, 2010
Sunday, September 19, 2010
Friday, September 17, 2010
Tuesday, September 14, 2010
That's the price of three months of Imatinib the drug that has kept me alive for 3 1/2 years by completely suppressing the disease I still carry, Chronic Myeloid Leukaemia. In all likelihood as long as I keep taking the drug it will stay suppressed forever.For the 15% of users that are not lucky enough to tolerate this drug, there are second line treatments. Both Dasatinib and Nilotinib can be used as alternatives and have similar life-giving properties. Not life enhancing, not life lengthening necessarily, but life saving. They, like Imatinib allow the patient to lead an almost completely normal life and for many years. At present the two drugs are under review by the National Institute for Health and Clinical Excellence (NICE), for use by local PCTs and at last time of asking 5th July 2010 has stated: ''Until final guidance is issued for dasatinib and nilotinib in the imatinib-intolerant chronic myeloid leukaemia population, decisions on treatment should be in line with local health policy.''In reality this equates to an actionable statement for PCTs to not prescribe the drug, a life-saving cancer drug. Chronic Myeloid Leukaemia only effects around 800 new patients per year. 15% of that no. is 120 people. 120 people does not constitute an empirically valid dataset upon which NICE to base a decision. However on that basis there will never be enough empirical data in the UK for it to ever make a decision. A much larger empirically valid US dataset has already been submitted to NICE, but it is deemed unacceptable as it comes from outside the UK. This is a convenient reason given that the drug appears to act in the same way across the world and across different ethnicities. It is my belief this procrastination (that could easily be maintained in perpetuity) is based on cost. The two therapies cost around £30k per year. That's damn expensive I understand that, but in reality that's a total drug cost of £3.6million. We live in austere times but there's potential to keep scores of people alive at the cost of £3.6million. I don't think that's an awful lot of money. The Conservatives during the run up to the election made a pledge that any patient with the disease should be allowed any drug licensed in the last five years, if their doctor seeks it, even if NICE has ruled against its use. This is relevant in the case of Dasatinib and Nilotinib. At this present moment there has been no action on that pledge. I made a promise at the time that I would give it three months and at that point I would take action. That time has come and my quest to ensure this manifesto pledge is carried through starts here. If you agree that this is worthwhile please add yes (plus any comment you wish to below). Thank you.
Monday, September 13, 2010
Sunday, September 12, 2010
Saturday, September 11, 2010
Friday, September 10, 2010
This weekend I will be picnicking. Ah yes, the picnic the finest British institution there is and to celebrate this I thought I would write a guide to making the perfect picnic.The picnic is a fine art. In my pre-children days, I have to admit to over-extravagance. Anything that involves having to mix a dressing and pour it over a salad, on location, is more of a faff than it's worth. I make this assertion on the basis that if you are making a dressing for a picnic, then you had better have the table, foldable chairs, crockery, wicker basket and napkins to back up your pretensions. Otherwise you're doomed to an oil stained rug, frustrated gastro buddies, plus the ignominy of the rest of the polo crowd trying to pretend you're not sitting near them.Nope the ingredients of the great British Picnic for four are thus.-Two times cheese and pickle sandwiches (the cornerstone of all British culture) -Two times egg and cucumber sandwiches (cress is not an option, you always get left with half a tray that wilts on the windowsill)-Two times tuna mayo and cucumber sandwiches (see there was method in my egg and cucumber combo, buy half a cucumber and you have no waste)All of the above should be cut into quarters and sheathed in two layers of clingfilm, wrapped in opposite directions. Failure to wrap two sheets of clingfilm (in opposite directions) and plumping for one, will result in lateral, structural weakness and filling all over the inside*. In the event of one layer being used, you can be assured that the egg mayo and probably the pickle, will fall and stain the oldest picnic party member's trousers and create a bad mood from the outset. You have been warned. Finally each of the three individually wrapped parcels should be placed back into the bread wrapper, from whence they came.NB 1. Using fresh bread may seem like a good idea, but will result in your sandwich parcels rattling around in the bag. It's what sliced bread wrappers, were destined to do, don't deny them their destiny.NB 2. For added authenticity, one of the sandwiches should be made using a crust. Dependent on your picnic guests, there will be one of two conversations.Conversation 1'No, no, no, you have it. I know you like the crusts. I'm not bothered''No, seriously you have it''Honestly I don't mind, have it, go on' 'No, you have it, you made them''Weeeell if you don't mind'Conversation 2'Oh for fuck's sake, why do I always get left with the crust' 'Well mum made the picnic, so it's only fair''Jeeesus don't worry, I'll just have a pork pie' (see below) - Proceed to nick more than your fair share of pork pies.Please be aware both of the above conversations are equally British.
Supplementary picnic items:- Two boiled eggs - these will inevitably be left over, because you always think you need more eggs for the sandwiches than you actually use.- Individual mini pork pies x6 - six is never enough really, but buying eight just seems greedy. However, we should learn that the purchase of six, leaves an imbalance of distribution and will inevitably lead to an argument later on (see conversation 2 above)- Snack eggs x1 pack - these horrendous processed monstrosities, are the most delicious food known to man (well picnic man anyway) - don't worry, that you've already got egg sandwiches and the left over boiled eggs, from having done too many for the sandwiches, what's a little constipation between friends.- Cocktail sausages x40 (or 80, if you forgot to eat breakfast and you're standing at the chiller cabinet, salivating) - never ever look at the list of ingredients on a pack of cocktail sausages, they taste too good to be ruined by that kind of stupidity.- Apples x4 - these are conscience salvers. Following the processed muck you've shovelled down prior to the apple, they will make you feel like a picnic is a much healthier option, than going to the beach cafe and ordering burger and chips.- Carrot sticks - see apples above- One 2 litre bottle of pre-mixed squash - remember for true authenticity the bottle should have previously contained something other than squash, preferably 1/2 a litre of flat carbonated water, that for some reason's been sat in the fridge for 6 or 7 months N.B. Inevitably the solution will always be either far too strong, or far too weak.Please ensure that all of the above are placed in a bag that was designed, to only fit about 80% of the stuff you are trying to stuff in. This will ensure the sandwiches are well squashed on arrival. N.B. If the picnic appears to fit neatly in to the bag, you have forgotten the plastic plates, plastic cups, cutlery and napkins**. There is no getting away from the 80% rule I'm afraid.And there you have it the perfect British picnic. Throw in some drizzle and you're sorted.* If you're thinking the lateral, structural weakness can be avoided by cutting the sandwiches in half, think again. Quarters is the only way to go on a picnic I'm afraid. Use a second piece of clingfilm you lazy cheapskate.**Please note plates, plastic cups, cutlery and napkins are compulsory if you are picnicking with women. The 80% rule is therefore effectively their fault. If it was a bloke's picnic, the sandwiches wouldn't get squashed. Think about it next time women.
Wednesday, September 08, 2010
Tuesday, September 07, 2010
This was a post I originally wrote on the 11th day of the Paris Riots on 6th November 2005. Reposted today on the 6th anniversary of Samira Belil's death. I believe Samira Belil's story and her book should be more widely known, but it has yet to make a real impact outside France. The book was finally translated and published in English in 2008 as To Hell and Back: The Life of Samira Bellil and is a recommended read.Samira Bellil died on September 7th 2004 aged 31 of Stomach cancer.This diminuitive French Algerian immigrant was a modern day Emmeline Pankhurst and arguably the stand she made was possibly a far more courageous act than that of the Suffragettes yet her story remains largely untold outside France. In her book 'Dans L'Enfer Des Tournantes' (In the Hell of Tournantes) she laid bare the endemic culture of patriarchal oppression in the French ghetto. Her story was underpinned by her own gang rape at the age of 14 at the hands of 4 men known to her. Gang rape was known in the ghetto as pass-rounds. Her boyfriend handed her over to his 3 friends who brutally raped her all night and then made her breakfast in the morning. This happened to her again when she was dragged by one of her previous assailants off a crowded train while the passengers looked the other way. Her story is not uncommon of her peers growing up in the Banlieu many of her friends suffered the same fate and women are often forced to hide, stay inside and if they are seen to be in any way deviating from the norm they can often suffer the same fate at the hands of disenfanchised, angry and violent young men. Her book galvanised a women's movement in France that spawned countless marches across the country attended by thousands of women who had been terrified of voicing their opinions and the action she inspired forced the French Government to look seriously at the issue of pass-rounds in particular, but also the oppression of women in the ghetto. She instigated the set-up and implementation of a women's refuge to protect some of those at gravest danger with a particular focus of attention on the estimated 70,000 who were believed to be in danger of enforced marriage in a heavily fundamentalist islamic honour culture. Her impact was so great that the government were forced to recognise the changing ethnic fabric of French society and a department was set up to look at the issues. The French government honoured Bellil’s achievements, and those of 13 other women from the projects, by hanging their portraits outside the country's parliament in recognition of the profile they had created. The reason I post this today is that we are on the back of the 11th day of rioting in the Paris ghettos particularly, but also all over France. It's something I'm sure Bellil would not be in the slightest bit surprised by, the depth of poverty and disaffection has been there for years, mixed with the overpowering macho patriarchal culture. Personally I hope it proves the catalyst the French government require to really tackle the issue of the ghetto and the way that they have been used and ignored for years. The ghettos have been allowed to descend to a hellish existence that breeds the worst type of fundamentalism religiously, patriarchally and violently.
Monday, September 06, 2010
I started running again recently. There are myriad reasons why it's
good for me, not least the fact that I get to run in places that I
wouldn't normally have occasion to visit. My running coincided with
the beginning of the summer holidays and as I huffed and puffed around
the back streets I dragged past a bench that I've gone past many times
before. You've probably seen loads of benches like it. Someone, or
some body placed it there years ago, but you've never seen a single
person actually sat on it. You've probably wondered why the hell it
was ever built in the first place.
front of it, about 14/15 years old chilled out, enjoying the early
evening sun (yes there was sun this summer) and just having a very
pleasant looking time. Three days later on the same route I passed the
same bench, but this time there were 5 or 6 kids hanging out. Same
vibe, quiet, chatty and relaxed. There was a mix of boys and girls and
they looked pretty cool (what do I know, I stopped being able to read
that barometer years ago). It had a lovely feel to it, not so much
incongruous, as unusual that this was where they'd chosen to be.
Granted it had a little bit of greenery, some shade from the sun with
the trees, but nevertheless it was basically in the middle of a
suburban sprawl with no shops nearby, no real 'entertainment' on hand,
just a bench as a focal point and few opinions. My running's continued sporadically over the summer holidays and
rather than varying the routes as is my normal practice I've been
following the same pattern and as the weeks went by the size of the
group that was gathering around this previously unloved bench grew to
around 20. I started to enjoy running past it. It was convivial,
quiet, considered and above all fun. Then it began to change. As I ran past it seemed slightly more
fractious. The group was bigger, there was alcohol, it was rowdier,
there were factions, the conviviality had gone and as I ran on, two of
the original kids I'd seen weeks before were walking away. I went on holiday at the end of August, returning at the end of the
school break at which point I resumed my slow painful fitness regime.
When I ran past everything was different. The original kids had gone
and had been replaced by a completely different group of individuals.
Obviously I'm looking at this as the parent of kids not a million
miles off this age, but they were oiky, 'orrible, oily individuals.
There was a lot more drinking, a lot more shouting and the original
spirit was gone. Come yesterday evening, two days after the schools
had gone back there were four kids left drunk and surrounded by
litter. The bench was over. The cool kids had moved on. The spirit had
disappeared. The paradigm had shifted. I’d like to think the cool kids
had found another anonymous bench. If I’m honest they’re probably back
at school, but it suits my romantic side that they’re all happy
chatting in Pleasantville just a few streets away. Now inevitably this whole episode has led me to muse on the nature of
social networks, their adoption and possible future abandonment. I
watch brands pour millions of dollars/pounds through specific channels
and often think ‘I really hope they don’t ruin this’, because if they
do their audience won’t stick around they’ll just move on elsewhere,
not only that they’ll switch that brand off ‘FOREVER’ because that’s
the choice being online gives you. Facebook popped up out of nowhere 5 years ago, 515 million users on
the late majority are still ploughing in, with brands following in
their hoards, but there’s really no reason to believe that Facebook
won’t go as soon as it came. Facebook’s sudden disappearance is unlikely, but it’s important to
understand when the cool kids leave and where they’ve gone, because
they’re the ones who’ll spark the next big thing and as a brand you
need to know about that and be prepared to act upon it. I’m not going
to go into how in this post as that’s a whole different issue and in
fact the answer may be, ‘do nothing, hang back’. The point is, you have to be fluid, you can’t be too brash and you
have to consider the huge range of variables that may open up to you
through digital channels and be prepared to embrace them.
Concentrating in just the one area and using it and abusing it for
every last drop of value is a dangerous game and can ultimately leave
you in the wilderness, with a bunch of ‘friends’ that left for a
better bench long ago.