The LibDems: WRONG on opt-out organ donation

The report from the Organ Donation Taskforce on the potential impact of an opt-out system for organ donation in the UK is available in pdf format here.

I have opposed opt-out organ donation since some barking mad judge suggested it. The whole idea is totally illiberal and smacks of an authoritarian state "owning" our bodies. I was surprised that the Liberal Democrats supported the idea. Norman Lamb confirmed the party's support for the scheme yesterday.

Of course, we need to increase our rate of organ donation registration. I have been a registered donor for many years and we wanted our son to be a donor when he died.

But an opt-out scheme is just morally wrong.

The Taskforce have given better reasons than my emotional ones for rejecting the scheme:

On balance, the Taskforce feels that moving to an opt out system at this time may deliver real benefits but carries a significant risk of making the current situation worse.
Nevertheless, some clear messages emerged from our findings about priority action for improving consent rates for donation, the most striking of which was the need to address the extremely low awareness of the odr. if a person’s name is on this register, 90% of families consent to donation, compared with a general consent rate of about 60%. There is a clear need to publicise the register and to make the process of registering easier and more widely understood.
Other areas for development include the following:
many people have fears or misgivings about organ donation based on misconceptions or ‘myths’ that need to be dispelled.
We need to encourage people to talk about organ donation with their families and friends, as recommended in the draft nhs constitution.

What most of this boils down to is this: When did you last see a TV advert encouraging organ donor registration? I have never seen one. There are loads for blood donation but none for organ donation. We obviously need better advertising and encouragement of inter-family discussion of the subject.

Introducing a Stalin-style opt-out scheme is just not on. The proposal is very similar to the ID scheme. I tend to apply my "drop out" test to this sort of thing. If someone decides to drop out of society they will never have the opportunity to opt-out of a organ donation scheme and if their family are not immediately available at their death their organs could be used under a opt-out scheme, but it could be that the deceased and their family had/have deeply held objections to the procedure.

You can register for organ donation here.

A few words in defence of Kerry Katona

There's been a bit of a hoo-ha this week about Kerry Katona's appearance on ITV's "This Morning", when some reckoned she looked "drunk".

She wasn't drunk. Yes, she slurred her words. She very honestly explained this by the fact that she was taking night-time medication, which she, very openly, named.

But you can tell (video below) from the very quick, controlled pace of her words, her perfect appearance and the fact that her body language seems entirely controlled, that she was, in fact, stone cold sober.

If she had been drunk, her body would have been wobbling (it wasn't), her hands would have flailed about uncontrollably (they didn't) and she would have had difficulty stringing a coherent sentence together (she didn't - she was remarkably lucid if you take away the slurred speech).

Her body language and coherency were entirely sober - her speech alone was slurred.

The best way of describing her demeanour is that she was like someone who had had a very strong injection at the dentists and, as a result, couldn't get the words out unslurred, but whose command of language was completely intact.

Give old Ferny and Philly-boy their due. They pressed their questions with great tact. They haven't lost their nose for a good story, albeit somewhat over-hyped.

But the woman wasn't drunk and she deserves a break.

I will be buying a bag of chips at Iceland (she does their adverts) this weekend in solidarity with the girl.

Her husband explained:

Due to the TV commitments Kerry had last night, Kerry was four hours late in taking her medication for an ongoing bi polar condition.
One of the side effects of her drugs is slurred speech and as Kerry took the drugs late and was up early it was particularly bad today. Kerry would like to categorically state for the record that that the only thing she drank before the show was cups of tea.
Having answered the questions to the best of her ability, Kerry was upset at the insinuation that she was on anything other than the prescription drugs which she has always been honest about taking.

A little respect, or at least consideration, for someone with bi-polar disorder would be appropriate. "This Morning" now deserve a return visit from Katona, supported by Stephen Fry (fellow bi-polar disorder sufferer), to give them a good old grilling.

MMR scare: It's the media's fault

Ben Goldacre continues to be one of my favourite journalists. Not having a science background, I reach to him for a bit of sanity on controversial science-based issues.

It is worth reading his article in the Guardian today. It is about the history of the MMR/autism scare and it is a stonker. He basically says that the MMR scare was the fault of the media, and, in particular, their propensity to use general journalists to comment on what was essentially a scientific matter, rather than science journalists. One particular passage relates the story behind a couple of MMR scare stories in 2006:

.."US scientists back autism link to MMR” said the Telegraph. “Scientists fear MMR link to autism” squealed the Mail.

What was this frightening new data? These scare stories were based on a poster presentation, at a conference yet to occur, on research not yet completed, by a man with a well-documented track record of announcing research that never subsequently appears in an academic journal. This time Dr Arthur Krigsman was claiming he had found genetic material from vaccine-strain measles virus in some gut samples from children with autism and bowel problems. If true, this would have bolstered Wakefield’s theory, which by 2006 was lying in tatters. We might also mention that Wakefield and Krigsman are doctors together at Thoughtful House, a private autism clinic in the US.

Two years after making these claims, the study remains unpublished.

Nobody can read what Krigsman did in his experiment, what he measured, or replicate it.

Should anyone be surprised by this? No. Krigsman was claiming in 2002 that he had performed colonoscopy studies on children with autism and found evidence of harm from MMR, to universal jubilation in the media, and this work remains entirely unpublished as well. Until we can see exactly what he did, we can’t see whether there may be flaws in his methods, as there are in all scientific papers, to a greater or lesser extent: maybe he didn’t select the subjects properly, maybe he measured the wrong things. If he doesn’t write it up formally, we can never know, because that is what scientists do: write papers, and pull them apart to see if their findings are robust.

Liver cancer and its aftermath

This article is contributed by Sarah Scrafford, who regularly writes on the subject of Midwife Degree Programs. She invites your questions, comments and freelancing job inquiries at her email address: sarah.scrafford25@gmail.com .

Cancer is a deadly disease, but we do not realize how it can affect us unless one of our loved ones has been diagnosed with it. Liver cancer, which is the fifth most common cancer in the world, is of two types – one that originates in the liver and the other that spreads from other parts of the body. The first one is known as hepatocellular carcinoma. The second one, metastatic liver cancer is more common.

When someone is diagnosed with liver cancer, it’s an unbelievable shock; but what’s even harder to take is when the prognosis is not good. When doctors are not able to find out where your cancer is originating from, there’s very little hope of treating the disease successfully. Even the most intense chemotherapy works in curing the cancer only when you can identify the source of the cancerous growth.

An early diagnosis offers hope for both the patient and his/her family. At least you can prevent the spread of the growth and stop it from eating away your still healthy organs. If your oncologist can identify the origin of the cancer as the liver, then a transplant is a possibility, providing you are able to find a donor in time.

When cancer strikes, and if you’re able to trace it at an early stage, doctors remove the affected part to prevent it from spreading. The problem with liver cancer (one that originates at the liver) is that you cannot just remove the liver from the body without replacing it with a suitable alternative.

Depending on how advanced the cancer is, patients are offered the choice between aggressive and palliative treatment. While the former is an all-out effort to fight the cancer, the latter focuses on keeping the patient comfortable and free of pain till the end comes. Opting for chemotherapy is an expensive and painful procedure – the patient suffers the side effects of both the disease and the treatment. Loss of appetite, vomiting, tiredness and fatigue, hair loss and other symptoms take a toll on both the body and mind. Palliative care is equally painful; waiting to die knowing that you can do nothing to stop the impending end is a strain on both the patient and his/her family and loved ones.

Very often the patient withdraws into a depression and finds no incentive to go about his/her daily work even on the days they feel good. Family and friends must be there to offer support, but when you know someone you love is slowly dying, it’s hard to control your grief and put on a brave face day after day. Seeing a loved one in unbearable pain is extremely hard to take, knowing that there’s nothing you can do to help them except offer moral support.

Cancer has caused havoc in the lives of two people I love, and if I had one wish, I would pray that God prevented this deadly disease from attacking mankind.

Guest blog intro

Last November a very close friend of mine passed away from liver cancer. As I worked alongside him I was very aware of his illness, but also his great courage in "carrying on regardless".

Sarah Scrafford, who writes on health subjects, offered to write a guest post for Liberal Burblings. I gladly accepted and asked her to write on the trauma of liver cancer, in memory of my friend.

She has written an informative and moving article which will follow shortly.

Caring for the miracle in your chest

I just wanted to praise the British Heart Foundation Doubt kills campaign.

Yesterday, for innocuous reasons, I had the chance to see my heart on an ultrascan screen. It was one of the most magical things I have ever seen. I could even see the valves shutting and opening.

It really is perfectly amazing that millions of years of evolution have produced this remarkable feat of natural engineering - four chambers all pumping in sequence, valves opening and shutting bang on cue, beating 100,000 times a day. It is quite incredible that it wasn't designed by an engineer!

But, of course, if an engineer had designed it and if it was built by humans, it would wear out with use. The quite extraordinary and miraculous thing about the human heart is that it improves and lasts longer the more you use it.

What a miracle!

The BHF Doubt Kills campaign urges people to dial 999 as soon as they feel chest pain. Given the high chances of an untimely meeting with one's maker in the event of a heart attack, this is sound advice.

Cameron clings to nurse for fear of Conway

There was an interesting lead story in the Observer yesterday about the Tories proposing nurses to be allocated to spend up to six hours a day with mothers for the first week post-birth.

For some time, I suspect this policy has been sitting in David Cameron's office marked "In case of emergency break wind". It could be called the ABC ruse - Anything but Conway. And oh yes, something very nanny statist and touch-feely further smashes the paradigm of the Tories being those nasty "no such thing as society" people.

And, my goodness me, look at the tasks the nurse would do:

· Showing after older children and making sure healthy meals are provided;
· Looking after older children and making sure healthy meals are provided;
· Taking care of laundry and light household cleaning;
· Monitoring visitors to the mother's home to ensure that rest times are not interrupted;

That's Grandma's job!!! Yes, this is literally "nanny state" which is why Cameron likes it - paradigm bashing and Conway off-the-agenda-shoving (he hopes).

And, as Liberal Bureaucracy points out, trying to recruit thousands of nurses will end up increasing immigration - which a lot of Tories don't want.

And, you have to say: The Observer - what a load of supine ninnies to put this on your front page when you had Conway, Winterton et al to devastate!

Having said all that, though, it's not a bad idea - as long as it is optional. If parents have a grandparent or grandparents available then this is what grandparents are for. If not, then having a nurse present helps put parents on the right lines, hopefully dissolves a few of those awful first week crises and perhaps helps to reduce, minimise or at least spot early, cases of post-natal depression.

However, I suspect there a lot of better things the Tories could spend lots of money on to ease deprivation, which this is meant to do. But it is a very effective way of achieving the actual purpose of the policy - to send Conway to the inner pages of the Observer.

Who owns your body when you die?

Easy. Your next of kin.

How do we know that for sure? Well, it is the next of kin who pays for the burial, usually with funds from the estate which they inherit.

John Dixon on "A Radical Writes" raises this issue - thanks to him. John puts forward the argument (without endorsing it fully) that because you are dead when you body becomes, er, a dead body, then you cease to own it and have any conscious thoughts or ownership pertaining to the disposal of that body. Yes (but your wishes are expressed over post-death matters for things you own in a will - are we going to ignore all wills if it suits us in future?).

But what the government's advisers seem to be saying - no, they are saying - is that the state will own your body in future and have the right to take organs from it, regardless of what your next of kin say - if you haven't signed a form to be on a register, saying that you don't want to donate your organs. (The Sunday Telegraph splashes this issue as its main story today).

That is wrong. The next of kin owns the body and therefore should have the right, fully considering their deceased relative's wishes (it may be that they didn't get round to signing a form but did say that they didn't want their organs donated), to refuse to allow organ donation.

If the government is saying that, effectively, they own all dead bodies and can decide to take organs out of them (unless there remains a signed form on the register from the deceased saying otherwise) then, come on, Mr Brown, you can pay for all the burials in the country. If you think you own the bodies, you bury the things!

Obviously that final offer to the government is not going to be taken up, so the government should butt out of this one and not presume that they own all dead bodies.

I went through all these arguments when some insane judge originally raised this idea a few months ago on Today. The main issue is actually getting the rate of organ card carrying up - in the UK it is half the rate in Holland - so let's have more advertising about it and more discussion between the medical profession and families about the subject. Allowing the state to own dead bodies, an illiberal measure, is not the answer.

Here's what I wrote about this in July:

Making organ donation after death an "opt-out" rather than an "opt-in" procedure is practised in many countries. Stephen Pound MP made a very sound case for it last night on Radio Four's PM. But it is fundamentally illiberal. It means that the state owns your body upon death and can remove organs from it. The idea that someone may be too embarrassed or too busy to fill out an exemption form, then die, then their relatives see their body "carted off" by the state, is disgusting.

Britain has one of the highest family refusal rates for organ donation of 47%. A presumed consent system is an insufferably blunt instrument to override that current "spur of the moment/after the death of a loved one" resistance. But:

John Oliver, of UK Transplant, the organisation that oversees organ donation, said: “Britain’s high relative refusal rate is the single biggest barrier to more lives being saved. Four out of ten people identified as suitable donors do not go on to donate because their relatives refuse. One of the main reasons is because the family, at a traumatic time, say they have never discussed it.”

Perhaps we have some work to do, to break down the taboo here before introducing draconian measures?

And don't go round waving the shrouds of 1,000 people a year to get this through chaps! My son died and we would have loved to have given his organs, but none of the medical staff brought it up. (When we brought it up I seem to remember it was explained that organ donation wasn't possible due to the need for a post-mortem, which is a shame because it didn't need a genius to work out that my son had died from Meningitis.) There should be more asking about organ donation by medical staff and more encouragement of discussion amongst families before death.

I've been there holding a loved one's dead body - actually giving their organs strikes you as a wonderful way of making some sense of their death. But if you've never discussed it with the deceased I suspect you don't want to presume what they would have said on the subject.

Only 25% of people carry a donor card in this country. The rate is 44% in Holland, which suggests there is great scope for improving our card carrying rate without bullying. More asking and more advertising, more pushing and more discussion of the card system is needed, not an illiberal and repellent practice.

And its nothing to do with religion! Opt-out organ donation is immoral.

PS. I have carried an organ donation card for seven years. But then, I am an anorak and take care over these things.

Gordie steals a sofa moment with a half-baked idea

After a weekend PR offensive, Gordie had his "sofa moment" with Fiona on GMTV on Monday.

Gordie deigned to inform us plebs that he wants the NHS to focus on preventative measures.

Brilliant. So as Fiona gently pointed out, forget about all this nonsense about people picking up hospital-based infections, cancer cure rates being one of the worst in the civilised world and people having to wait weeks to see their GP.

Forget all that.

Let's prevent illnesses in the first place.

Brilliant. In a way he has a point and, as he is Prime Minister, he's right to finally let us into some of his "vision" for the country.

But the screening and preventative measures happen already and it is not clear that further extension of check-ups is money well spent.

And what extra resources are going to be made available to doctors to do all these check-ups? It is not clear.

And once doctors identify people with a problem will there be extra resources to treat it? It's not clear.

The details are all going to be worked out in February apparently.

But it did give us all a wonderful Gordie sofa moment, so that's all right.