Wednesday, 15 September 2010 15:21

Changing the law on organ donation

Written by  Steve Bone
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I recently signed a petition on the No10 web site, for a change in the law on organ donation to presumed consent.
As a dialysis patient, I signed this with what could easily be described as a vested interest at heart. Although, it is worth adding at this time that I have always supported organ donation – a long way before I experienced kidney failure. Indeed, when my father suddenly died just over 10 years ago, I asked that his organs be used, but in his case, the hospital were not able to use them.

Once the petition closed, I received the government response, which could be best described as ‘a bit of old flannel’. Effectively, despite this being a relatively hot topic, no real action to tackle the supply of organs was taken. So i decided to look at this further.

When you view the list of live, completed and rejected petitions on the No10 web site, there are a surprising number of them around this subject of donation. And, interestingly, there are a wide range of views, for and against a presumed consent change, and a number advocating other ideas.

Given that there will be a large number of views on this subject, any change in the law will upset many, as the current law causes upset in its own way through lack of supply.

Another school of thought on this is to charge doctors with asking the donor question at the point of a patient’s death, or whilst still on ventilation. But, this is likely to pressure doctors, and any data collected on this could be fudged.

Given that the NHS has been heralding for some time, a national records capability for patients, surely it would be easier to ensure GPs ask the question about being on the donor register, routinely at appointments with their patients, and this record or ‘state’ to be logged on the donor register. Part of the issue is around getting more people than the current 24% of the population to make the effort to become a registered donor, but a national campaign by GPs would reach a much wider audience on a 1-2-1 basis.

There is still the issue of education of families to individual wishes, but if this was discussed by GPs, then the topic, over time would become a live debate as more and more people would be exposed to a formal question about it.

We hear that many more than those registered would register, but clearly after many years of campaigns there is still a general reluctance or even apathy to making the move. Hand the question to people ‘on a plate’ and this changes the momentum.

And, of course there is the issue of the doctor who has to make the decision on asking the question of relatives about taking organs for donation at an emotional time. The government response to the original petition and others, is that they have employed more transplant co-ordinators. Is the role of asking the difficult question then one for the co-ordinators or somebody specially trained to do this.

I find it interesting that the GMC is advocating doctors have discussions with patients who have been diagnosed with a terminal illness on donating their organs when they die – so the school of thought is there in one form – but it is necessary to coach and train the doctors to deal with what is one of the toughest questions they may have to ask – despite the fact that in many cases, if the question has been handled sensitively the outcome may not be difficult at all and they will receive consent from the relatives.

We can continue to fight for radical change, which in this country means endless debate, argument and counter argument, or we can modify processes to make things better around the way they are. I would love the system to be presumed consent – but then I’m biased – or so I thought! So how about putting our energies into something practical rather than chasing a dream that has not been granted for some considerable time!

The original petition posting and government response is below.

change the law on organ donation.
This petition is now closed, as its deadline has passed.

We the undersigned petition the Prime Minister to change the law on organ donation. More details

Submitted by Miss Emily Caton – Deadline to sign up by: 06 June 2010 – Signatures: 1,714

More details from petition creator
Make organ donation opt out as opposed to the current opt in. The UK has about 18% donation rate, of which have an ‘opt in’ approach whilst countries like Sweden, Portugal, France and Austria all have an ‘opt out’ approach have donation rates between 90-99%. This will decrease organ donor waiting lists to a mere few days compared to months or even years.

Government response
The Department of Health believes that as many people as possible who need a replacement organ should be given the opportunity to benefit from an organ transplant.

In 2008, the independent Organ Donation Taskforce examined the case for moving to an opt-out or presumed consent system. It advised against it and concluded that whilst such a system might have the potential to deliver benefits, it would present significant difficulties which might not bring about the desired increase in organ donation rates.

The Taskforce made a number of recommendations to increase donor rates, of which increasing the number of donor coordinators in hospitals was one. Since the start of the implementation of these recommendations, almost one million more people have signed up to the organ donation register.

The Department is supporting the action to increase organ donation in the UK. Encouragingly, steady progress is being made and the number of organs being donated is increasing. Time is needed for these recommendations to be worked through fully and to assess their success, before looking to change the system further.

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Steve Bone

Steve Bone

Hi, I'm Steve and have been a dialysis patient on some form of self-care or other since 1990. I've dialysed at home, abroad, in hospital, oh and had a transplant for 7 years. I work in the insurance industry for a City based business, but am very fortunate to be able to work from home 4 days a week. I hope, with my experiences, I can help others on dialysis or those facing dialysis in the future! It ain't so bad! Steve

E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

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